Westin Wall Centre Hotel

Westin Wall Centre Hotel
End of Life Train the Trainer 1 Westin Wall Centre Hotel December 9, 2010

Introduction Acknowledgements:
BCHPCA Learning Centre for Palliative Care Fraser Health – Advance Care Planning Welcome/ Overview of day Acknowledgements. Focus on those patients with life limiting chronic illness. Introductions: Introduce themselves, and their practice setting/discipline. If they have a formal role in the workshop have them specify their role. 2

Session opening Dr. Cathy Clelland !!

Session opening Introductions Agenda for today’s session
Introduce patient and his situation Name, age, family Diseases he is living with How we will follow him through the whole module

Case study: Mr. James Lee and his wife
Mr. James Lee is a 74 yr old retired electrician. He is married to Mary with two children in their 30’s. They have been in Canada for 35 years and are fluent in English and Cantonese. James has a history of COPD, hypertension and was diagnosed with Prostate cancer 6 yrs ago (at age 68 yrs); he had an enlarged prostate identified by you (GP) during a routine physical. Subsequent investigations revealed diagnosis of prostate cancer with locally advanced disease with no distant metastasis. He was treated with surgery & radiation. Mr. Lee was followed by both an urologist and a radiation oncologist and maintained on hormone therapy; he had no symptoms and felt well, enabling him to travel and play golf. His COPD has been managed in a shared care manner with a respirologist. Every Fall you have undertaken a review of his COPD Action plan and this has kept him fairly stable.

Integrated primary and community care: Towards interdisciplinary End of Life practice with GPs and MOAs Katie Hill

Integrated care: Shifting the focus
Meeting the majority of people’s health care needs by providing high quality, accessible, community based health care and support services Built around attachment to a family physician and an integrated health care team. Stronger voice for the patient, family and local community in the design and delivery of healthcare services. More focus on proactive management of health conditions, supporting seniors and those with chronic conditions to remain independent.

Working with population needs

BC End-of-Life care *statistics (2009)
29,744 persons died in total. 4,537 (15.3%) died in own home. 7,162 (24.1%) died in residential care. 3,291 (11.1%) died in hospices. 14,139 (47.5%) died in acute hospitals. *Data source: Ministry of Health Services Quarter schema: March 4, 2010 (ICD10: A00 to R99)

Why a population approach?

Who supports HPC End of Life care?
Primary care physicians and HPC Specialists Home and Community Care palliative teams Clients/patients and families/caregivers Linking with... Acute care hospitals and tertiary ambulatory services Provincial services (BCCA, BC Renal, BC Children’s, HealthLink BC) End of Life Care programs and services- regional and provincial Local Hospice Societies and other community services... Produces patient-centred interdisciplinary practice

What will integrated care look like?
Aligns with EOL/HPC PSP Module - we’ll see... Community by community approach Divisions of Family Practice Family physicians - specialists Re-alignment of community health services to foster inter-professional and client-centred practice Collaborative service committees Rethinking how we work together An iterative process

Inter-professional practice for EOLC
Interdisciplinary EOL care plans need to include: Medical and nursing care - goals of care aligned with patient’s wishes. Care coordination of specialists, interdisciplinary team. Clinical support to assess and manage pain and other symptoms. Functional supports to maintain quality and comfort. Family/caregiving support for emotional comfort Collaboratively built to improve quality of care. Involvement of patient and family to improve experience.

Integrated community practice will enable
Clear roles and responsibilities for practitioners. New service models, coordinated care. A common language and standard pathways. Capacity-building for proactive chronic disease management. Practice of the palliative approach across settings. Consistent collaboration across service settings. Involvement of patients and families. Better care and improved health outcomes.

Questions? 15

Module aims Dr. Cathy Clelland

Module aims To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by: Identifying patients early who could benefit from a palliative approach. Enhancing GP confidence and communication skills to enable Advance Care Planning (ACP) conversations. Assessing patient and family needs from a palliative perspective. Identifying and referring appropriate patients to specialty palliative care and others for consultation and services. 17

Module aims (continued)
Understanding provider needs, clarifying roles, tools and resources for practice support and collaboration. Improving collaborative care planning, coordination and communication with clients/caregivers and with other local health care and community providers. Increasing physician knowledge of how they can support their own emotional well being. Improving the experience of the patient, family, physician, MOA and healthcare providers in End of Life care. Improve physician confidence related to End of Life care (e.g. care planning, forms, death certificates, etc.), “Integration in Action” 18

Patient/family’s voice
Brian Deakin

Palliative approach to life-limiting illness
Dr. Doris Barwich

Type of deaths in Canada

Schematic depiction of comprehensive heart failure care
Reference: *****The NHS improvement – The National End of Life Care Programme A representative disease trajectory for heart failure is shown here. Typically five phases may evolve. Phase 1 represents symptom onset, diagnosis and initiation of medical treatment. This often occurs as the patient is admitted to hospital with a life-threatening episode of breathlessness. Some patients may die at this point. However, for other patients the onset of symptoms is more gradual, and they may present to the general practitioner (GP) with slowly progressive fluid retention and/or breathlessness. With either presentation, once the diagnosis is confirmed, treating the patient with drug therapy, combined with cardiac surgery if required, will often produce a dramatic improvement in symptoms. In the initial stage patients and carers need education on the nature of heart failure, the treatment options, and advice on diet and fluid management. Patients usually now enter a plateau period of variable duration, sometimes lasting several years. Phase 2 - During this period, in which patients generally remain under the care of their GP, they should be advised how to monitor their condition at home and when to call for help. Ongoing support and education for patients and their carers promote autonomy, self care, adherence to therapy and a reduction in the risk of inappropriate admission. Because life expectancy is so difficult to predict and patients feel relatively well, most clinicians are reluctant to talk to patients or carers about prognosis at this time. Phase 3 occurs when patients develop periods of instability with recurrence of symptoms linked to deterioration in heart function. Rebalancing of treatment may restore stability, but often a new approach is required with the use of implantable cardiac devices to improve heart pump performance (cardiac resynchronization therapy) or to shock the heart back to normal rhythm (implantable cardioverter defibrillator (ICD)) in the event of a life-threatening arrhythmia. Increased patient and carer support is required here, and there is a major role for community heart failure nurses. Regular review including home visits may help to avoid unnecessary hospital admissions. As functional deterioration continues, Phase 4 is marked by the patient experiencing increasing symptoms and exhibiting declining physical capacity, despite optimal therapy. Consideration for other treatment options such as cardiac transplantation may be considered in this phase. Judging the right time to discuss prognosis and advance care planning with a patient can be very difficult, but the reappearance of symptoms in phases 3 and 4 and raising the question of the possible need for aggressive intervention often present an opportunity to initiate discussion. Phase 5. Goals of care need to be openly reviewed with the treatment emphasis shifting to the management of symptoms rather than the futile continuation of therapy offered only for prognostic benefit. Formal assessment of supportive and palliative care needs is required at this time and specialist palliative care may need to be involved. Multi-organ failure is the usual terminal mechanism in Phase 5, whereas sudden arrhythmic cardiac death is more common in earlier phases. Review of resuscitation status and reprogramming of cardiac devices may be important management issues. Deactivation of ICDs is frequently left almost to the point of death when agonal arrhythmias may trigger device discharges, disturbing the patient and distressing the family. When the patient enters the terminal phase, the situation often progresses rapidly, and unless treatment policies have been defined in advance, care may become disorganised. The course of heart failure and the time spent progressing through these illness phases is very variable and it is important to emphasise that clinical deterioration and death may occur at any time. Copyright ©2009 Goodlin, S. J. J.A.C.C. 2009;54: 22

Heart failure High Terminal Phase Function Begin to use hospital more often, self-care more difficult From an updated version of a PowerPoint Slide of the Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care. Low Death Time ~ 2-5 years. Death usually seems “sudden” Modified from Lunney JR et al. JAMA 2003: 289: 2387. 23

Changing face of dying Living longer: by 2025: 30% >65.
33% increase in deaths over 2004. 2/3 will die with 2 or more chronic diseases after months or years in state of “vulnerable frailty”. Only 1/5 of us will die with a recognizable terminal phase. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. The face of dying is changing and we need to adapt our processes of care to respond to this change. We are living longer. As a consequence more people are dying from chronic rather than acute diseases. Only 1/5 of us will die with a recognizable terminal phase 2/3 will die with 2 or more chronic diseases after months or years in state of “vulnerable frailty” – enduring several symptoms complexes for many years By 2020: Increase of 33% more deaths from 2004 Lynn, Joanne. (2005). Living Long in Fragile Health: The new demographics shape End of Life care. Improving End of Life Care: Why has it Been so Difficult Hastings Center Report Special Report. 35(6): S 24

EOL trajectories Cancer: Short period of decline
Organ failure (Heart, lung, kidney): Slow decline with intermittent acute episodes Well Unwell Reference: Based on a PowerPoint Slide of the Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care and There are also different “trajectories” of dying. If we look at the 3 predominant disease groups – Cancer, organ failure and frailty – they have different typical trajectories of decline and timing of death. Cancer typically has a path of long maintenance of good function with a time of weeks or months of rapid decline as the illness becomes overwhelming and leads to death. There are markers that enable clinicians to determine prognosis. This is the trajectory that palliative care programs were developed based upon. The trajectory of organ failure such as heart and lung disease is different. The course is more typical of slow decline in physical capacities punctuated by serious exacerbations, with death often coming rather suddenly. If patients survive an episode, they may well return home without much worsening of their everyday limitations. But at some point, rescue attempts fail and death may appear to be “sudden’ or unexpected. Long term dwindling function needing years of personal care is the typical path of frailty and dementia. Dying often follows a physiological challenge that would have been managed well earlier in life – such as influenza, pneumonia, or a hip fracture or may come after long term decline and dwindling away from cachexia and dehydration. Strategies to support the different trajectories of illness also need different emphasis. Symptom management and palliative care support strategies developed over the past 40 years have focused mainly on cancer patients and on identifying when someone is entering the “ palliative phase” of their illness. As a result those dying from chronic illnesses have often not received palliative care or support for End of Life needs. Yet 3 of 4 deaths in developed countries are caused by diseases other than cancer. So using the cancer model of identifying when someone is certain to be in the last months of life, or ‘palliative’ does not work well for those with diseases of organ failure. If you’re waiting for someone to become “palliative” you will miss 80% of your deaths. Lynn, Joanne. (2005). Living Long in Fragile Health: The new demographics shape End of Life care. Improving End of Life Care: Why has it Been so Difficult Hastings Center Report Special Report. 35(6): S Time Frailty and dementia (prolonged dwindling) Joanne Lynn, “Living Long in Fragile Health: The New Demographics Shape End of Life Care” Improving End of Life Care: Why Has It Been So Difficult? Hastings Center Special Report 35, no. 6 (2005): S14-S18. 25

Ambiguous dying “There will not be a distinct terminal phase.
The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of us with advanced heart failure, we will have had a chance to live for six months on the day before we died” Joanne Lynn: Sick to Death and Not Going to Take it Anymore (2004) From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. For those with chronic illness, there is often not a distinct terminal phase, as there is with cancer. The timing of dying is ambiguous. As this quote from Joanne Lynn clearly identifies: … If hospice palliative care is available only to those who die in a predictable way in a short time frame of months, most people with CD will never qualify, because their timing of death will stay uncertain until very close to the End of Life. A short period of care in the palliative program meets the needs of many cancer patients, but many people with heart and lung failure are better served by having a much longer period of support for self care and anticipation of rapid changes, with plans and response to help people at home. In contrast, people with dementia or who are frail are often best served by having many years of support to carers in the family. Bern-King, Mercedes. The Ambiguous Dying Syndrome. Health & Social Work, Feb 2004; 29, 1; Resource Library Core pg. 55. Lynn J. (2004). Sick to death and not going to take it any more. Reforming health care for the last years of life. Berkeley, CA: University of California Press. Lynn J, Straube BM, Bell K, Jencks SF, Kambic RT. Using population segmentation to leverage patient-centered care: a business tool comes to health care quality. Milbank Q 2007;85:185–208. Fox E, Landrum-McNiff K, Zhong Z, Dawson NV, Wu AW, Lynn J. Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. SUPPORT Investigators. Study to understand prognoses and preferences for outcomes and risks of treatments. JAMA 1999;282: 26

Cannot wait for a ‘sign’ …
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Acknowledging that CD such as CHF, COPD and renal failure are terminal illnesses with an uncertain time of dying, then our current practice of trying to identify the point in time that someone becomes ‘palliative’ – when we can see death is on the horizon and we will then switch into ‘palliative’ care – is not effective. We may switch roads too late – we may never see the sign that ‘dying is certain’ in time to switch roads – we may never even change lanes. What happens if we are waiting to see the fork in the road and miss the ‘sign’ to signal that palliative care should begin? What is the potential impact on patients/families/system? This may mean: We did not hold any conversations with the patient / family of likelihood of death. The goals of care and specific direction in relation to treatment were not established. The medical focus was on solely disease modifying therapy not addressing symptom burden. The family did not have a trigger to provoke conversations, plans. The patient did not have a trigger to attend to the work of dying: Saying goodbye, asking forgiveness Large group brainstorm: 5 minutes Components of a palliative approach: Preparation for End of Life, along with maximizing living well; addresses symptom burden; psychosocial care for patient and family; disease management; preparing for and managing dying; bereavement . 27

Table discussion Introduce yourself and how you are involved with patients with chronic and life threatening illness. Identify what you hope to get out of the session today to improve the care of patients in relation to considering palliative/supportive care needs. From: Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Table Discussion: Have the tables establish a facilitator. In their table groups have participants think about these cases, as well as patients in their own practice, and share with each other what they want to get out of today’s session (hopes and learning needs). The table-facilitator will take notes and be prepared to share the information with the larger group. 28

Table discussion (continued)
Think about your self audit OR a recent death of a non-cancer patient you were involved with` Were you satisfied with the experience? If so, what made it work? If NOT satisfied, why not? What were some of the gaps in clinical care? What could have been done differently? From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Consider your experience Handout: Practice Self-Audits Table Discussion 29

Philosophy of care Dr. Doris Barwich

Diagnosis of life-limiting illness
Canadian Hospice Palliative Care Association model of care (2002) Bereavement Care Disease-modifying therapy Palliative Approach to Care From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. In Canada the CHPCA through a consessus process identified a model of care and standards and norms for the care of patients and families living with a life threatening illness in a document published in Different approach – Is to view palliative approach as an integral part of dementia care from diagnosis. So we are envisioning Palliative Care not only as a program but for those with CD as an approach to care which … Is appropriate for any person and family living with a life-threatening illness Affirms life and regards dying as a normal process Focuses on the person and the family as the unit of care Involves the patient in setting goals and determining individual choices for care Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. Figure #7 and #10. Diagnosis of life-limiting illness Death Illness trajectory 31

Palliative care dimensions
Guided by person centered goals of care: Pain and symptom management. Psychosocial care for person. Psychosocial care for family. Spiritual care. Disease management. Preparing for and managing dying. Bereavement. (Canadian Hospice Palliative Care Association: Norms, 2002) Della: SO what is a palliative approach? Here are the 7 dimensions of palliative care as described by the Canadian HPC association. The foundation through which these dimensions of care are delivered are based upon the goals of care of that person. Let’s take a closer look at each dimension for the person. NOT = Comfort Care; NOT = No aggressive measures ; and Palliative Care is NOT only for the dying. CURE  DISEASE; CONTROL  SYMPTOMS; CARE  PERSON

WHO definition of palliative care
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. BC MOHS: The Palliative Approach to care: WHO definition: Palliative Care: Provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patients illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. It aims to improve quality of life in all life-limiting illness, not just cancer. Is an approach delivered by health care providers and can be deployed by any member of the health care team with appropriate support from hospice/palliative care specialists as required. Facilitates early identification of patients/families wishes/choices about care throughout a period of declining health, and especially during end-of-life care. 33

Goals Quality of living in the context of a life-threatening illness.
Quality of dying in the midst of life.

Experiencing life limiting illness Dependency and symptoms increase
Transitions in life-limiting illness Transitions Early Disease containment Maintaining function Decompensation Experiencing life limiting illness Decline and terminal Dependency and symptoms increase Death and bereavement From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Reference 100 things article (as found in the orientation material). Looked at a different way this visual depicts a common pathway for those with life limiting illness, regardless of the specific trajectory – there are common transitions: At time of diagnosis, When despite disease modifying therapy the person experiences decompensation from the disease impact, When dependency and symptoms increase, When the person is actively dying from the illness, to the Final transition of death and bereavement as their family continues on without them. Throughout this trajectory, those with life limiting illness will benefit from a palliative approach. When the person starts to decompensate and experience the limitations of the illness is often when referrals are made. When dependency starts to become greater and symptoms increase, if a palliative approach has not been imbedded in care, the need becomes even more urgent for patients who are sick enough to die. During this transition, this is potentially also a time of increased awareness of the possibility of death and readiness for planning and support. Primary Health Care Provider Hospice Palliative End of Life Care Education Project Phase One: General Practitioner Needs Assessment Focus Group Report. April 2009. Time of Diagnosis Time McGregor and Porterfield 2009 35

Collaborative interdisciplinary approach
Suggest emphasize that the population depicted in this slide “lives in” the top 2 segments of the previous “population health” triangle (slide 8) Palliative Care Australia

Best practice: Integrating the palliative approach
Concurrent palliative and disease modifying care. Elimination of the “terrible choice”. Advance Care Planning and patient centered decision making. “Sick enough to die” rather than “certain to die”. Melanie Merriman PH.D. MBA NHPCO Conference Fall 2003

Integrating the palliative approach to care

Improved quality of life

Improved survival

Outcomes of the palliative approach
“Good death” in the most appropriate location. Better pain and symptom management. Better long term outcomes for bereaved relatives. Improved experience of care. Better quality of care. Lower health care costs. Zhang et al. Arch Intern Med Vol 169(5) Mar : From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. It has been demonstrated that when a palliative approach is part of care for those with chronic illness that there are improved outcomes, for the person, family and the health care system. Such as these identified on the slide: One recent study, by Zhang in 2009, showed that health care costs in last weeks of life are associated with End of Life conversations. It was a prospective multi institutional longitudinal evaluation of patients with advanced cancer and primary informal caregivers enrolled over 5 years who were interviewed at baseline and followed up until death. Study showed patients with advanced cancer who reported EoL conversations with physicians had significant lower HC costs in final weeks of life. Higher costs were associated with worse QOL outcomes. Zhang, Baohui et al. (2009). Health Care Costs in the Last Week of Life. Associations with End-of-Life Conversations. In Archives of Internal Medicine. Volume 169 (No. 5). 41

BC Guidelines.ca

Identification of patients who may benefit from palliative care
Dr. Douglas McGregor From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Section 2: Identification slides 18-26 Recognizing that all patients with life limiting illness benefit from a palliative approach – imbedded across the trajectory, there are patients who have more urgent needs and where collaboration in their care as particularly important. We are going to focus on tools available to identify this population. 43

UK Gold Standard Framework
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. The UK has developed a Gold Standards framework as a way of organizing to embed a palliative care approach in care for those with advancing life limiting illness. We are going to use that discussion for our framework today; identifying patients who would benefit, assessing patient and family needs for a palliative perspective and planning for care that reflects the person’s illness and needs, and their preferences translated into goals of care that are communicated and that care received can be aligned.. The key point in this framework is identification of particular patients, establishing a practice registry for those patients and then organizing in relation to their care. Emphasize that this is a GP initiative with wide uptake (90% in some regions) National Gold Standards Framework Centre. (2008). UK NHS End of Life Care Programme. The Gold Standards Framework: Prognostic Indicators Guidance to aid identification of adult patients with advanced disease, in the last months/year of life, who are in need of supportive and palliative care. 44

Identify patients: Gold Standard Framework triggers
Three triggers for supportive/palliative care: The surprise question: “Would you be surprised if this patient were to die in the next year? Choice/need: patient makes a choice for comfort care only, or is in special need of supportive/palliative care. Specific indicators: clinical indicators for each of 3 main EOL groups (cancer, organ failure, frail elderly/dementia). From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Think first, how do we identify or ‘spot’ these patients? The GSF developed to support identification through 3 triggers. 1. The first ‘surprise’ question has been validated in different settings. For our purposes we are asking to identify patients not surprised if they died in the next year. 2. Choice/need: A good example of patients who make choices for comfort along the trajectory – may be the patients with ALS who early on decides against any Bipap or ventilation. 3. Clinical indicators – the GSF outlines indicators of disease specific advanced disease From a perspective of patient readiness to address EOL issues, those who you identify as likely within the last year of life often are ready for EOL discussions. 45

Identify: Sentinel events
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. GSF doesn’t include this, but often sentinel events such as hospitalization, ER visit, a severe exacerbation, acts as a ‘wake up’ call to us and patients and families. For those with CD – it may be sentinel events that prompt us to reflect on where the person is at within their illness. And creates a ‘readiness’ for further EOL planning. It can open a space in your therapeutic relationship with patients that didn’t exist before. CASE STUDY Over a weekend when you are not on call, there is a decline in James’s breathlessness, he is experiencing increased coughing and he is confused. The family members are distraught and dial 911. Mr Lee is taken to hospital and found to be in respiratory failure. He is seen by the respirologist on call in consultation. There is a discussion about intubation and ventilation but there is resistance to this initially in the family and so non-invasive respiratory support is offered. James remains in hospital 5 days and is then stable enough for discharge after his pneumonia is treated. A 30 minute discharge planning care conference is held on Day 4 with you, the respirologist, nursing and respiratory staff and arrangements are made for increased home support. You have been providing MRP care daily to James, who has been your first patient each day. The respirologist has provided supportive care and is available to you for assistance when needed. (GP Billing: for daily MRP care (Hospital acute care visit) plus for first visit bonus X 5 days plus for Discharge Planning care conference X 2 units on day 4; Specialist billing: for consultation plus for supportive care X 2 plus GXXXXX for Discharge Planning care conference fee on day 4) The family is shaken by this episode, but James seems to have become “philosophical” about this turn of events. He is clear he never wants to be intubated. 46

Sentinel events questions/comments
“Well, that was a close call. What were you thinking about when this happened?” “What if things don’t go so well the next time?” “How did your family do during this time?” From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Opens a space in the relationship we have with patients to initiate conversations, such as: 47

Identify: Use prognostic indicators
General: Co-morbidity. Recent, multiple ER visits/hospital visits. Complications of recent hospital stay. Reducing performance status (ECOG/Karnofsky/PPS). Dependence in most activities of daily living (ADLs). Impaired nutritional status despite attempts to improve Serum albumin < 25 g/l. Weight loss 5-10% of body weight (last 6 months). From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July Gold Standard Framework List of General Predictors of End Stage Illness There have been general and disease specific indicators developed to support identification of patients with non-malignant disease. Often these have been developed with the intent to identifying when people qualify for services under palliative care – Hospice in US; Specialized HPC services in Canada. It is important to note that although these are indicators of increasing risk of dying, the predictive value of clinical criteria in identifying last months is not well supported. For seriously ill hospitalized patients with advanced chronic obstructive pulmonary disease, congestive heart failure, or end-stage liver disease, recommended clinical prediction criteria have not yet been developed that are effective in identifying a population with a survival prognosis of 6 months or less. Fox E, Landrum-McNiff K, Zhong Z, Dawson NV, Wu AW, Lynn J. (1999). Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. SUPPORT Investigators. Study to understand prognoses and preferences for outcomes and risks of treatments. JAMA;282: 48

Identify: Use prognostic indicators (continued)
Examples of disease specific Renal Disease Patients with Stage 5 kidney disease who are not seeking or are discontinuing dialysis or renal treatment. COPD Dyspnea after 100 meters or confined to house from dyspnea. Recurrent infections, hospital admissions. Right heart failure. O2 criteria. Resting HR 100/min. Heart Disease Symptoms despite optimal tolerated treatment. Dyspnea or chest pain at rest or minimal exertion. History of cardiac arrest. Hospital admissions. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. However, for our purposes of identifying those patients in more urgent need of a palliative approach in care, certainly these disease specific prognostic indicators are useful in identifying those with increasing frailty or becoming sick enough to die. (1) Ask Does this patient have an advanced long term condition, a new diagnosis of a progressive life limiting illness, or both? (Yes) Would you be surprised if this patient died in the next 6-12 months? (No) (2) Look for one or more general clinical indicators Performance status poor (limited self care; in bed or chair over 50% of the day) or deteriorating Progressive weight loss (>10%) over the past 6 months Two or more unplanned admissions in the past 6 months Patient is in a nursing care home or continuing care unit, or needs more care at home (3) Now look for two or more disease related indicators Heart disease NYHA class IV heart failure, severe valve disease, or extensive coronary artery disease Breathless or chest pain at rest or on minimal exertion Persistent symptoms despite optimal tolerated therapy Renal impairment (eGFR <30 ml/min) Systolic blood pressure <100 mm Hg and/or pulse rate >100 Cardiac cachexia Two or more acute episodes needing intravenous treatment in past 6 months Kidney disease Stage 5 chronic kidney disease (eGFR<15 ml/min) Conservative kidney management due to multi-morbidity Deteriorating on renal replacement therapy; persistent symptoms and/or increasing dependency Not starting dialysis following failure of a renal transplant New life limiting condition or kidney failure as a complication of another condition or treatment Respiratory disease Severe airways obstruction (FEV1<30%) or restrictive deficit (vital capacity <60%, transfer factor <40%) Meets criteria for long term oxygen therapy (PaO2 <7.3) Breathless at rest or on minimal exertion between exacerbations Persistent severe symptoms despite optimal tolerated therapy Symptomatic heart failure Body mass index <21 Increased emergency admissions for infective exacerbations and/or respiratory failure Liver disease Advanced cirrhosis with one or more complications: intractable ascites, hepatic encephalopathy, hepatorenal syndrome, bacterial peritonitis, recurrent variceal bleeds Serum albumin <25 g/l, and prothrombin time raised or INR prolonged Hepatocellular carcinoma Cancer Performance status deteriorating due to metastatic cancer and/or co-morbidities Persistent symptoms despite optimal palliative oncology treatment or too frail for oncology treatment Neurological disease Progressive deterioration in physical and/or cognitive function despite optimal therapy Symptoms that are complex and difficult to control Speech problems; increasing difficulty communicating; progressive dysphagia Recurrent aspiration pneumonia; breathless or respiratory failure Dementia Unable to dress, walk, or eat without assistance; unable to communicate meaningfully Increasing eating problems; receiving pureed/soft diet or supplements or tube feeding Recurrent febrile episodes or infections; aspiration pneumonia Urinary and faecal incontinence NYHA=New York Heart Association. eGFR=estimated glomerular filtration rate. FEV1=forced expiratory volume in 1 second. PaO2=pulmonary artery oxygen content. INR=international normalised ratio. BMJ 2010; 341:c4863 doi: /bmj.c4863 (Published 16 September 2010) Cite this as: BMJ 2010; 341:c4863 Recognising and managing key transitions in End of Life care Kirsty Boyd, consultant in palliative medicine, Scott A Murray, St Columba’s Hospice professor of primary palliative care 49

Identify: Use prompts Is the patient’s function declining due to progression of disease? Are the patient’s symptoms (such as pain) responding inadequately to optimal treatment? Does the patient need advance care planning? Ontario GAC Guideline These are questions we can repeatedly ask ourselves. If the answer is yes to these prompts, it identifies the need for palliative approaches to care. However, the important take away message here – is that it is important to identify those patients you are carrying for that have more urgent need for a palliative approach – although you are not ‘certain’ they will die (so have referred them for palliative care services), the patient still requires a palliative approach imbedded in care. Guidelines Advisory Committee. (2008). Palliative Care: Recognizing Eligible Patients and Starting the Discussion. GAC Reference #260. Endorsed Date: September, Guidelines Advisory Committee. (2008). Summary of Recommended Guideline Palliative Care: Improving Palliative Care Planning for Identified Patients. GAC Reference #260. Endorsed Date: September, 50

Spikes and empathy Iatrogenic suffering – what families remember.
Breaking bad news. SPIKES not YIKES! Empathy – even when you don’t think you can connect easily. It is a strategy NOT a script SPIKES a 6 point protocol for breaking bad news S = physical Setting and listening Skills – privacy, involve those who need to be involved, sit down, eye level, look attentive and calm, listening mode, availability – switch off pager/ cell P = Patient’s Perception - what do you know, think about, worry about this? Reflect patient/ family’s language I = Invitation - are you the kind of family/ person who wants to know… how much information would you like me to give now… K= Knowledge – prepare the patient – now I have to tell you some bad news, I’m afraid that this is not good….. Same forms of language “lump” “spread” Avoid technical speech forms Small chunks Check on absorption Take the time it needs E= empathy: “empathic response” see below S = Strategy & Summary: check in with patient what they have heard and go over the main information points again empathy: “empathic response” 3 steps listen for the patient’s emotion identify the source of that emotion demonstrate that you have made the connection “I realise how shocking the results of the latest tests must be”

Who would benefit from a palliative approach?
Recognize all who life limiting illness will benefit, and those with indications of advancing illness have even more urgent needs and require coordinated care. 44 year old woman diagnosed with multiple sclerosis; Woman in her 80’s with early frontal lobe dementia Woman in 70s with CAD needing dialysis. Woman in her 50s in hospital with COPD and pneumonia Woman in her early 60s with advanced colon cancer

Practice approach to care
Knowing your patient and family. Knowing what you plan to do with your patient and family. Patient recognition / registry and material. Knowing you patient and family As a GP / primary provider, you are in the priviledged role of having longitudinal relationship with them which you can use to facilitate the difficult decisions and discussions ahead Knowing what you plan to do There has to be a key piece of coordination which the GP and home care nurses must get right to ensure good integration of care and the smoothest possible transitions. Patient recognition/ registry and material Your practice staff and those whom they communicate with must have the same understanding and updated information as you have. The registry must be a means of facilitating communication and agreed plans of care 53

Identification: Table discussion
At your table, start discussing the topics covered: Identifying patients. How do you communicate and to whom. Consider who should be involved in your community. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Appoint someone at your table to document and one to report back. Think about the patients identified for your self audit and those from your experience who you would say are ‘sick enough to die’. At your table, discuss the patients you identified for the audit or can think of from within your practice and through the Health Authority? What factors did you consider when identifying these patients? Refer to GSF clinical indicators of advanced disease: Is the GSF useful? GSF (in handout package) 54

MOA role in identification
Flag patients who may benefit from a “palliative approach” based on triggers: “Surprise question”. Change in appearance. Missing appointments or unusual behavior e.g. change in gait. Repeated hospital admissions or polypharmacy issues. Admissions to Long-Term Care - “why” are they there, not just the fact they are there. Decrease in ability to care for self. Family members phoning MOAs to inquire about patient. Changes in communication, e.g. family calling instead of the patient. Gut feeling. Reference: Interviews with former MOAs and steering committee MOAs have a different experience and relationship with patients than the physician. During the phone and in office conversations, MOAs have the opportunity to learn from the patient and their family. For example, the MOA may recognize that the patient is now walking more slowly, and always has someone helping them. Or a family member may call and express their concerns about the patient. This information can be shared with the physician to better assess the patient. MOAs can participate in the identification of patients that can benefit from a palliative approach to care. MOA’s role is to flag potential patients, not determine why Triggers are also listed in the care plan 55

MOA role in identification (continued)
When booking patients, MOAs are to ask them why patients are coming in. Be aware of potential flags and share concerns with physician. Support the creation of the patient registry (e.g. surprise questions, clinical indicators). Help establish communication processes to share concerns to physician. Flag caregivers of end-of-life patients that may be distressed or burnt out. Reference: Interviews with former MOAs and steering committee Flag caregivers of end-of-life patients that are possibly appearing distressed or burnt out from their phone calls or behaviour in the physicians office 56

Identification: Pearls
What have we learned? Everyone can seek to identify. Tools are available to support identification Surprise question (intuitive awareness of transition). Choice (readiness of patient). Clinical indicators (Functional/Prognostic signs). Tools are available to support identification. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Appoint someone at your table to document and one to report back. Refer to the self audit (they may not have done this) Recall a good death……..recall a bad death Think about the patients identified for your self audit and those from your experience who you would say are ‘sick enough to die’. At your table, discuss the patients you identified for the audit or can think of from within your practice and through the Health Authority? What factors did you consider when identifying these patients? Refer to GSF clinical indicators of advanced disease: Is the GSF useful? GSF (in handout package) 57

Break MOAs go to a break-out session
Chair explains what physicians and MOAs will be taught at their separate sessions. * A/V tech: please go to next slide 58

Assessment Dr. Doris Barwich 59

Assessment 60

Assess: Patient and their Illness experience
NEEDS and PREFERENCES DIAGNOSIS SPREAD DISEASE BENEFITS OTHER PROGNOSTIC FACTORS TREATMENT BURDENS From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Ask patients to tell you about the story of their illness Assessment beyond symptoms: Refer to your own case story or refer to the case from the beginning of the session. Consider the case and speak to the components of the assessment: To identify needs and preferences and translate these into goals of care. Who is this person and What are their needs in relation to the Disease and the Treatment of Disease, and their Goals. Clarification of goals will help to guide discussion re treatment options and ultimately care that reflects these conversations. Throughout the trajectory of illness. Eg: treatments previously effective may no longer be effective or “ may be a burden the patient can no longer bear” Disease: Understand the patient & family’s experience of the illness (Suffering) and their needs and preferences. Use a validated assessment tool helps ensure you systematically cover multiple domains of care. PATIENT GOALS of CARE CULTURE BACKGROUND EXPERIENCE (SUFFERING) VALUES, BELIEFS 61

Assess: Goals of care Goals of care change over time and may include:
Maintaining and improving function. Staying in control. Relief of suffering. Prolonging life for as long as possible or until a specific event (time limited trials of care). Quality of life/ living well.

Assess: Goals of care (continued)
Pain and symptom management. Relieving burden for family members. Strengthening relationships. Preferences for location of care. Preferences for location of death. Life closure/ dying well. Personal wishes for management of dying.

Assessment: Domains of care
Pain and symptom management. Psychosocial care for person. Psychosocial care for family. Spiritual care. Disease management. Preparing for and managing dying. Bereavement. (Canadian Hospice Palliative Care Association) From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. What are we going to do differently with these patients we have identified as benefiting from a palliative approach? Are there any tools that we can support us in this work? First we need to hear from the patients; what are their experiences, worries, how if the family affected? Their mood? And consider the multidimensional aspects of this experience. Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. 64

“Distress screening” Edmonton Symptom Assessment Scale (ESAS)
Identifies key symptoms for that person. e.g. Dyspnea at rest, fatigue, sleep, cough, pain Screen regularly for symptom intensity and associated distress. Monitor response to treatment. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. When disease management is optimal and the patient continues to be symptomatic, need to be thinking about addressing symptom distress. It starts by regular assessing for symptom intensity and distress. Including these screening questions in your regular visits. 65

Edmonton Symptom Assessment System
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. A tool available to support this screening is the Edmonton Symptom Assessment System. Useful to quickly and efficiently assess patients. Patients can complete it themselves. Or you can identify key symptoms likely for that person that you screen for at every visit: COPD – dyspnea at rest, dyspnea with ADL, fatigue, sleep, cough. Edmonton Symptom Assessment Scale. (2001). Capital Health. Regional Palliative Care Program. 66

Assess: OPQRSTUV and physical exam
Onset Provoking/palliating factors Quality Region/Radiation Severity Treatment Understanding/ Impact Values /Goals of Care Onset:When did it begin? Sudden onset?? Did you have any previous breathing difficulties? Increasingly getting worse. Provoking/palliating factors:What brings it on? What makes it worse? Walking hills, dressing, emotions, everything. Quality:What brings it on? What makes it worse? Walking hills, dressing, emotions, everything Does it make you feel angry, panic, fear, claustrophobic, inability to get enough air, tired, gasping, panting? Region: Where is it? How often does it occur? Does it spread anywhere? Severity:What is it on a scale of 0-10? Any other accompanying symptoms? Any other accompanying symptoms such as pain, fatigue, anxious feelings, worry or depressed mood, or cough, fever, hemoptysis, chest tightness, palpitations, Treatment: What medications or other strategies are you using right now or in the past? How effective are they? Pharmacist (Laura) on the team- able to access pharmanet for a medication history. Finds out information for us about new meds, side effects etc. Severity:Any other accompanying symptoms such as pain, fatigue, anxious feelings, worry or depressed mood, or cough, fever, hemoptysis, chest tightness, palpitations, No associated numbness or parasthesia. Only sleeps 2-3 hours at a time, therefore is exhausted with poor concentration. At times difficulty breathing. No associated nausea or anorexia and she is eating well. Increased constipation in relation to her meds so now is taking laxatives. Treatment: Pharmacist on the team accessed pharmanet. Current meds include Celebrex 200mg. BID (started the day before), Pregabalin 150mg BID (started the day before), M-Eslon 160mg. Q12h with MSIR 10mg taken approx times per day. Decadron 4mg. QID since March 23rd. Radiation: causing pain flare.

Patient assessment: Pain and symptom diary
68

Symptom burden in chronic diseases
Symptom prevalence in Heart disease; COPD; Renal; AIDS and Cancer Pain, breathlessness, and fatigue – found among more than 50% of patients for all diseases. 11 symptoms as prevalent as in cancer. Common pathway for malignant and non- malignant disease. Salano, Gomes, Higginson, 2006 From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Often one of the areas of distress identified by patients is the symptom burden from their illnesses. There is significant symptom burden for all chronic diseases as they advance. One of the first studies of dying, Hinton 1963, described how physical and mental distress were more pronounced in patients dying from heart or renal failure than those from cancer. In a comparison of studies of 5 chronic diseases in advanced illness, they found that 11 symptoms were as prevalent in heart disease, COPD, renal and AIDS as with cancer. Pain, dyspnea and fatigue were found in more than 50% of all diseases. There is significant symptom burden that needs to be addressed. Further there appears to be a common pathway toward death for malignant and non-malignant disease – with common symptoms, even though the specific trajectories are different and the assessment and management needs to be specific to the disease. Hinton, J. The physical and mental stress of dying. QJ Med 1963:32:1-21. Solano, Joao; Gomes, Barbara; Higginson Irene. (2006). A comparison of symptom prevalence in far advancing cancer, AIDS, Heart disease, chronic obstructive pulmonary disease and renal disease. Journal of Pain & Symptom Management 31(1):58-68. 69

Functional assessment: Seniors Assessment Tool
From Frail Elderly Guidelines. To be completed by the patient. Reference: Frail Elderly Guidelines To be completed by the patient To gather the patient’s perspective Rather than waiting until your patient becomes more frail, you can target them earlier 70

Palliative Performance Scale (PPS)
Palliative Performance Scale V2 PPS 100% 90% 60% 50% 40% 30% 20% 10% 0% 70% 80% Ambulation Activity and Self-Care Intake Conscious Evidence of Disease Level Full Normal activity and work Full Normal Full No evidence of disease Full Normal activity and work Full Normal Full Some evidence of disease Full Normal activity with effort Full Normal or Full Some evidence of disease Reduced Reduced Unable to do normal job/work Full Normal or Full Significant disease reduced Reduced Unable hobby/housework Occasional Normal or Full Significant disease assistance neces. reduced or confusion Mainly sit/lie Unable to do any work Considerable Normal or Full Extensive disease assistance req’d reduced or confusion Mainly in bed Unable to do most activity Mainly needs Normal or Full or drowsy Extensive disease assistance reduced +/- confusion From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. For a drop from PPS 70% to 60%: Refer to the hospice palliative care program/Home health Submit a Palliative Benefits Application for prognoses ≤ 6 months and Discuss and/or complete a home No CPR form For a drop from PPS 40% to 30%, increase home support or hospice care. For a PPS of 20% or 10%, use the End of Life (EOL) Care check list Totally bed Unable to do any activity Total care Normal or Full or drowsy bound Extensive disease reduced +/- confusion Totally bed Unable to do any activity Total care Minimal to Full or drowsy bound Extensive disease sips +/- confusion Totally bed Unable to do any activity Total care Mouth Drowsy or coma bound Extensive disease care only +/- confusion Death x x x x 71

Assess: Needs of the family/caregivers

Assess: Additional need for support/referral
?Home Support ? Equipment or supplies. Psychosocial care for person. Psychosocial care for family. Spiritual care. Disease management (including risk of anticipated crisis/ “emergency”). Preparing for and managing dying. Bereavement.

Assessment: Pearls A good assessment:
Acknowledges patient goals of care. Assesses the whole person and the “family” unit. Standardized tools can support practice and provide information. Is proactive. Facilitates collaboration. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Reference the James Lee Case study in your discussion. 74

GP communication Dr. Romayne Gallagher MOAs go to a break-out session
Chair explains what physicians and MOAs will be taught at their separate sessions. 75

Critical importance of communication
Six key components (in order): Talking with patients in an honest and straightforward way. Willing to talk about dying: Not abandoning/avoiding the dying patient. Giving bad news in a sensitive way: Balancing being realistic with maintaining hope. Listening to patients. Encouraging questions. Sensitive to patients readiness to talk about death. Weinrich et al. Communicating with dying patients within the spectrum of medical care from terminal diagnosis. AIM 2001; 161: ; Curtis, J Gen Intern Med 2000; 16:41

Communication: Vital for EOL care
Patient experiences Being seen. Being heard. Being met. Family and caregivers’ experience Support in transitions. Establish partnership with clear goals of care and a plan for the future. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Ask patients what they want & meet their information needs so they can be a participant in constructing the plan of care. Patients want to be recognized, acknowledged – establishing a partnership with clear goals of care and a plan. (including the family) Reference the James Lee Case study in your discussion. 77

Video of dying young mom
The conversations in the videos will be handled over several sessions.

Communication: Assess readiness
Find out what is understood: “I know (…) has happened, so I wanted a chance to talk with you about your health and illness.” “Can you tell me what you understand about your current health? What are you expecting as your illness changes?” Assess coping and need for emotional support. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Recognize frank discussion is as important as other interventions in care However, assess readiness – find out what they know about their illness (Narrative of Illness); What do you understand? What have you been told? Assess need for emotional support. Levels of evidence: Non-randomized research; Consensus statements; Institute for Clinical Systems Improvement. (ICSI). (2008). Palliative care. (2nd ed). Palliative Care: Recognizing Eligible Patients and Starting Discussion. 79

No CPR form Purpose: Legal physicians’ medical order, with patient’s written consent, to allow paramedics and first responders to withhold cardiopulmonary resuscitation if patient has an arrest. Completed by: Physician and patient - community use only - form not for use in acute care hospital settings. Patients who know they have a life-limiting illness or who are considered at the natural end of their lives can request beforehand that no cardiopulmonary resuscitation be started on their behalf when they are dying. This should be done after discussions with their doctor. “No cardiopulmonary resuscitation” is defined as no cardiopulmonary resuscitation (no CPR) in the event of a respiratory and/or cardiac arrest. This form is provided to you and/or your next of kin by your doctor to allow you to clearly state that you do not want cardiopulmonary resuscitation to be given to you in circumstances where you can no longer make decisions for yourself. It instructs people such as ambulance attendants and emergency room personnel not to start cardiopulmonary resuscitation on your behalf whether you are at home, in the community or in a residential care facility. The personal information collected on this form assists the health professionals noted above to carry out your wishes. If you have any questions about the collection of this information contact the ministry of Health services at or toll-free at Once the form is duly signed, your doctor or alternate should be called first to attend to your needs, not the BC Ambulance Service. You or your next of kin should have the form available to show to emergency help if they are called to come to your aid. It is desirable that you wear a MedicAlert® no CPR bracelet or necklet to enable quick verification that you have a No CPR order in place. To obtain a free bracelet/necklet, please call , or visit the website at If you change your wishes about this matter, then please inform your doctor, community nurse or residential care facility nurse and MedicAlert and tear up the form. 80 80

Video of patient with dementia

ACP: Process and intervention
A tool and a process to: Discuss, document, and review goals of care at various transitions. Break “bad news” across all transition points. Include the family in the shared care process. Provide information for the patient/family to make informed decisions throughout trajectory. Plan for acute episodic and crisis events, declining function, and terminal phase management. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. 82

Who makes your healthcare decisions?
Capable adult (19 yrs). Committee of person (court ordered). Representative (representative agreement). Temporary Substitute Decision Maker* (TSDM). Spouse (common law, including same sex) Adult children (equally ranked) Parent (equally ranked) Brother or sister (equally ranked) Another relative by birth or adoption Another person appointed by PGT *Capable, 19 years or older, no conflict, contact within 12 months, agrees to decide based on your wishes Fraser Health Advance Care Planning ~ 83

Substitute Decision Makers (SDM)
SDM represents values, beliefs, preferences of patient. SDM is a stressful role. Ask the right question: “What would your father be thinking … ?” “What would be important to your mother ..?”

Video of failing older man

When to hold ACP conversations
Include in patient history form/intake assessment. Annual physicals for all adults: “I talk with all my patients about this and we talked a little about this last year…” As part of chronic disease discussions: "This particular illness can have a fairly predictable course…here are some things you need to think about ahead of time…" Following emergency department/hospital admissions: “I understand you have been in the hospital. What did the doctors say?” From Fraser Health’s Advance Care Training ACP conversations may be reviewed and revisited in: Primary care (physician's office) Include in patient history form/intake assessment. For example, “Do you have an Advance Care Plan?” Annual physicals for all adults: “I talk with all my patients about this and we talked a little about this last year…” As part of chronic disease discussions: "This particular illness can have a fairly predictable course…here are some things you need to think about ahead of time…" Following emergency department/hospital admissions: “I understand you have been in the hospital. What did the doctors say?” 86

Patient wishes An Advance Care Plan ensures that the patient's wishes would be listened to no matter who is present. NG.pdf What if patient wishes are not medically appropriate? Describe a scenario where a family’s patient wanted to override the wishes of the patient and the health care provider’s responsibility to adhere to the wishes of the patient. 87

Skills-based practice session
Groups of 3 Each scenario has 3 roles: patient, clinician, and observer. Choose role you wish to play. Take 1-2 minutes to review your role. Clinician initiates the 5 minute conversation. Take 2 minutes to review the role play together. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. One role play on the one who wants everything done even though it is not medically indicated. As the clinician - act from your practice base, if you are a nurse – have conversation from a nursing perspective, if a NP or physician, or RT 88

Review skills-based exercise
What feelings did you experience as you played the role of the patient? What did you learn as you played the role of the observer? In the clinician role, what surprised you? What 1 thing might you change about your ACP conversations in the future? From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Engage participants as a large group 89

Barriers to conversation
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. What keeps us from going down the road of “challenging conversations?” The barriers are personal, societal, emotional, and environmental. * Include a personal example here if you have time. 90

Health providers identified these barriers:
Social and cultural. Afraid of patient reaction to the topic. Not within their role. Lack of confidence and comfort with the conversation. Don’t want to take away hope. Time constraints. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Ask participants to suggest barriers from their perspective. 91

Patients identified these barriers
Too many medical problems. Doctor too busy. Perceiving ACP as irrelevant. Prefer to leave health in God’s hands. Information needs about health and choices. Nervous, sad, or too busy. Need help with “the form”. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Schickedanz, A., Schillinger, D; Landefeld, C., Knight, S., Williams, B., Sudore, R. (2009). A Clinical Framework for Improving the Advance Care Planning Process: Start with Patients’ Self-Identified Barriers. Journal of the American Geriatrics Society, Volume 57, Number 1, 31-39(9). 92

Communication: Pearls
What have we learned? All primary providers can: Initiate ACP conversations. Share information. Contribute to clarifying needs/preferences and establishing goals of care. Support families to keep talking. Clinicians can be healers through listening, supportive conversation and presence. The secret of caring for the patient is caring about the patient. Peabody 1929 From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. 93

Pat Porterfield, Josefa Kontogiannis
End of Life MOA role Pat Porterfield, Josefa Kontogiannis *A/V tech: these slides to be played in Steveston Ballroom (96 to 110)

欢迎 Hello, My name is Josefa Kontogiannis, I am a Practice Support Leader for Vancouver Coastal Health Authority; This is Pat Porterfield (role) we want to welcome you to this Medical Office Assistant break out session of the Train the trainer session of the End of life Palliative Module. Otherwise known as the (BCMA PSP TTT of the EOL Pal MOA BO session) Module. Your doctor has signed up for this Train the trainer session so that he/she can get the information that you have heard today and try it out in your offices so that eventually he or she can facilitate the module to other GPs in Learning sessions such as these. We have come together to identify what your role can be in supporting your doctor to try out the things that you all have learned. Some of you are familiar with the Practice support learning module. Others, who may not have participated in the past will learn that a doctor is not the only one that is involved in the care of his/her patients but he is part of a care team which includes you. So today we will identify the key points, some of which you are already doing without realizing and some that may be new to you but will someday be common practice in your offices. What we are hoping to achieve is show you what is required to support a patient’s care till the end of their life and what role you can play in making that care more seamless. First we’d like to go around the room to see who everyone is, just tell us your name and who you work for, whether it’s a Solo GP or a group practice

Getting started… what is the palliative approach?
Expanded definition of the End of Life. Guided by an understanding of the illness progression. Assists in understanding the transition of illness from cure to symptom control. Improves quality of life in all life-limiting illnesses. As you heard today… the Palliative Care approach looks at the expanded definition of the end of a person’s life guided by an understanding of the illness progression and of the transition of illness from cure to symptom control to improve a persons quality of life at the end of their life , so instead of concentrating on a cure, it looks as making a person comfortable because they are palliative. Although the quantity of their life is becoming shorter, the quality should still be respected. When I look at this approach I think that this is the way I would like to be taken care of when it will be my turn or how I would like my mom to be taken care of. I’m sure that you would agree.

End of Life Module: MOA Role
Identification Flagging Gut feeling Surprise Question Things you are noticing Care management Planning Registry Tools “Paperwork” Assessment Communication Tools: ESAS, pain diaries etc. Engaging family Engaging community Office methodology So…. In your packages you will find a folder that contains all the documents that you will need when a patient is assessed as being palliative-End of life. We have structured the folder in the hopes that it will be ready to use when you need it…..and that all it would need are supporting information that are specific to your office or community. This will be your toolkit ***Note to facilitator, the reason for this wording was because we had wanted a starter kit as part of the MOA package in the form of a two pocket folder; one side containing the assessment tools (ESAS, PPS, Seniors assessment tool) and the other containing the necessary documents that will be required at some stage of care of the patients (care plan template, My voice, No CPR, BC Palliative benefits, compassionate care benefits, notification of expected death at home, death certificate). Something tangible that will hold all these documents together so that all it would need throughout the progression are the office and community specific tool/materials/resources*** Also in your package are possible tools or materials that you may receive throughout the time that the patient is receiving End of Life care. As well as a folder of supporting documents that may also help you At the top of your package is the sheet entitled “MOA role in Palliative care”…. We will be referring to this sheet as it’s a good guideline to help in our discussion today, specifically with the four headings… Identification, Care Management, Assessment and Office Methodology… You are definitely key in helping identify patients…. you are seeing them all the time and interacting with them in a different way than even the doctor interacts with them. Many times you may notice something different about a patient or have that gut feeling. Today you learned about the surprise question…. I’m sure it made you start thinking of some patients….. Flagging is the one of the important first steps Care management comes to play once patients have been identified…..however…it needs some planning. How do you assist in the management of a patient’s care when it comes to end of their life. How do you keep track of patients, what tools do you need and what paper work in necessary…. This is where your toolkit is vital Assessments are done by physicians but your role in the assessment process started with identification and communications with the patients, their families and with the doctor. You may also be called upon to expedite calls regarding patients that are dying…. You may also be called upon to help patients and families with the paperwork that is required that pertains to assessment But… a lot of this does not happen without planning how this will work in your office. Huddles or team meetings are important but there are actually two kinds of meetings…… one being an overall planning meeting with respect to the module (this may only happen a few times in the process)…. The other, being patient specific meetings. You will also need to develop processes in your office about… the registry, organization of materials, billing, etc. We are hoping that this toolkit will be especially helpful for you in your offices and will be looking forward to feedback about how it worked for you. Also in your package is the module implementation planning sheet that can act as a starting point when you go back to your offices. Find time to have a meeting, keeping the criteria on one side of the sheet in mind while using the other side to write down your plan. Huddles, pertaining to overall plan Patient specific huddles Processes Billing

Identification: Surprise question
Would you be surprised if this patient will die within the next year??? This question will be the physician’s “trigger”… how can you help? What are the signs to look for? What are the questions to ask yourself? What are the steps to take when you start answering “No” when thinking of certain patients? Pat talked to this slide You have been introduced to the surprise question earlier this morning. I would just like to reinforce the intent of using this question: -for early identification of patients who may be in the last year of their life; we need to be clear that we are not certain & we need to journey with the pt & family to see how the illness will unfold. We need to recognize that at the point we are doing this early identification, the pt & family will often not see themselves in this way; more often they will see themselves as living with a chronic illness; sensitive communication with the health team is key to accompanying pts & families on this journey. -why to we want to identify patients earlier than what we are doing currently? To be proactive in assessing their needs & providing the appropriate care. If we wait until we are certain that patients are approaching the end of their lives before we assess these needs, we often miss opportunities to help improve their quality of life.

Identification - what changes do you see?..... Flagging
Changes in appearance. Missing appointments. Admissions to Long Term Care or multiple hospital visits or even frequent doctors visits. Family members expressing concern, wanting to talk to the doctor about them. Changes in behaviour. Changes in gait. Decrease in ability to care for themselves. Changes in communication. Gut feeling. These are the things that will help you see with the Surprise question…. Are you noticing any of these things when seeing or talking to patients?... Changes in appearance; where a patient was generally clean shaven or nicely dressed, they are not so much now Missing appts either with your office or appts that you have booked for them to see a specialist Admissions, to hospital or even multiple visits to your office…. You seem to be seeing them a lot more lately Family members calling to talk to the doctor or asking you for information Behavioural changes, where they were generally polite, they are now short and rude, or confused Changes in gait; needing more support, now using a walker, walking slower, holding on to the wall, shaky etc Decreased abilities; forgetting things, needing more assistance than normal Changes in the way the communicate with you; are you noticing this at all If so…..Ask the surprise question… then have a conversation with the doctor about them.

Registry What types are there? What is it? What is it used for?
A list A database What types are there? Paper list Excel spreadsheet Binder Flagged chart What is it used for? Tracking Maintaining Follow up Today you heard mention of a patient registry which is a tracking system of patients with common health concerns. Having these types of registries is a good way of keeping the elements of a health condition in check. They have been commonly used for chronic conditions such as diabetes or hypertension. With a Registry, at a glance you can make sure blood work is done, that the patient has been seen, meds are up to date etc. A registry can be kept to manage the care of patients at the end of their life as well possibly in a checklist format or visit by visit format etc. It can also contain important information about the patient regarding family contact information and phone numbers of other specialties or services that the patient is accessing. You have probably started thinking of names of people who fit the Surprise question. Naturally what do you do….. Start a list. A list is a good first step toward creating a registry. It is with this list that you start thinking about the things that you would like to monitor with your End of life patients. It can be kept in many ways such as a paper list, an excel spread sheet, a binder or a flagged chart or tailored somehow in an EMR for specific identification. Have a conversation about what you would like your registry to look like, and also discuss how you are going to start picking patients and once you do pick patients, what do you do with the people that you picked? Talk to your PSP coordinators about ways that they can help you get started and support your implementation of the module

Care management: Tools for toolkit
Care plan template. EOL care MOA flow sheet. My Voice (Advance Care Plan). No CPR form. BC Palliative Care Benefits Program form. Employment Insurance Compassionate Care Benefits form. Notification of Expected Death in Home form. Death certificate. Describe what is in the toolkit necessary and ready for care management

Using the assessment tools:
Palliative Performance Scale (PPS) ESAS: Screening for Distress When? How? Pain and Symptom Diary Seniors Assessment Tool You have been introduced to these tools earlier when Dr. Barwich discussed assessment. The two tools that we can see the MOA assisting with are the ESAS & the Pain & Symptom Diary. In your handouts, there are guides for how you can identify when to introduce these tools and how to assist the patient to complete them. (Refer to these handouts and review re the use of these tools) Important before introducing the tool that it makes sense to the pt & family why the tool is being introduced at this time…so relate to their situation (eg James comes to the office with more pain & the physician will do a pain assessment; important to know if he has any other symptoms that need to be assessed as well) It is also important that you are comfortable having these conversations with pts & families; self-reflection is important for you as well as the physician. Discussing how you & your physician will use these tools is one of the activities for the action period. If pt is being followed by Home Care, you can let them know that you have provided the pt with a pain & symptom management diary to use. If there is time, you could role-play how to introduce the ESAS to a patient & family.

Engaging family Who are the primary contact people?
Current contact information of all parties. Ensuring contact with family How is the family managing with caregiving? What can you say? What can’t you say? Following patient’s death, contacting family What family needs to do after death? Family members that aren’t actual patients, how are they seen or informed? Discuss your possible roles in making bereavement calls or cards. Palliative patients have a network of people caring for them, particularly the family members who provide round the clock care alongside many health care professionals. They are responsible for not just appointments but making decisions throughout the progression of their Loved one’s “end of life” but they are making plans about the death. They are also executing the decisions of all the health care professionals that are responsible for their loved one’s life. They also have their own households and obligations to themselves and other members of their family and need to take care of their own mental health when coming to terms with the fact that their family member is dying. Remember, this time can be very lengthy and they can become exhausted and frustrated. They will be calling your office for and with information and updates; have a plan in place to manage them when they call, know who they are and have the necessary contact names and phone numbers available. In the long run, this will save you and them some time during the phone call and will also foster a relationship between you and them that will make the calls run more seamlessly. It’s also important to have a discussion with the doctor about what the family understands is happening to them because you don’t want to say something that they are surprised to hear Have information about post-death necessities and a system in place regarding how this is delivered to the family members and where this information is kept for easy access (who provides the info, where is it kept). Should it be kept as part of your toolkit? Also have a process in place around what to do when the patient dies Are there appointments that need canceling Where do you send the death certificate Do you call the family Do you send a card Do you set up bereavement appointments, what do those look like, how long should they be What about family members who need bereavement but are not patients of the doctor, what happens to them? What is done with respect to billing for any member of the patient’s family who is not a patient? These are things that can be taken care of before they become a potential problem. These are discussions that should take place during a planning meeting.

Engaging with community
Identify resources available in the community and how to contact them Home and Community Care - professional team and HSW. Specialized palliative care services. Community supports: hospice societies, caregiver support services, transport, meals, etc. Create an information package for patients and families Work with community providers to develop a kit for patients …identify written materials and on-line sites. Where are additional resources found: local libraries, resource centers. We are hoping that the PSP roll-out will include information for the physicians and the MOAs about local community providers…Home & Community Care, palliative care teams, and other community supports; This may be web-based through resources such as CHARD as well as written materials (pamphlets etc). We need to think about the best way to organize obtaining that information; depending on your role, we have different questions: -PSP teams: How can the HA PSP team work with each HA to develop a local resource kit for each “roll-out”? -HAs—What resources do you have that would be helpful to share with the physician’s offices? -MOAs—what is the best way to organize these resources, both web-based & written, for easy access? 104

Websites to obtain important forms
BC Palliative Care Benefits Program application form Employment Insurance Compassionate Care Benefits ssionate.pdf Notification of Expected Death Here are the websites where you can obtain these forms….. The notification of expected death, the BC Palliative benefits program form and the employment insurance compassionate care benefits form.

Office methodology: Things to ponder…..
When will your meetings be? Who fits “The Surprise Question”? What will your registry look like? Where will your toolkit be kept? What else can you add to your toolkit? What supports do you need? What other tools will help you? What’s in your community? What is your billing process? Your comfort level, how do you feel about this? We have bombarded you with a lot of information and don’t expect that you will have all the answers as to how you can support your doctor with this Module. But what we have done is given you a chance to think about the processes in your office that work successfully and how you can use the success of those processes to figure out how this can fit into your work. You are probably already feeling like the lady in the picture, lots to do and not enough hands. You can also look at this picture differently and see a person who has all her bases covered and can multi task to a perfect art which is something that you are familiar with. Your role can be what you make it….. Depending on what the plan is with your doctor….. It starts with planning, getting together and having a conversation, looking at what you are already doing without even realizing it with regards to identifying/flagging and having materials ready that the doctor needs, booking the necessary appointments for the patient and with the family, accessing the resources that your doctor, the patient or the family needs etc. Your involvement in the planning is crucial…. We talked about how patients can be identified… but what about Registries- how will you keep track of the patients?...... …. We’ve provided you with a toolkit of Materials and supporting documents, what can you add to the toolkit that are community specific and patient specific….. ….. We have talked about what materials will be needed at what level of the care trajectory…. And now the office approach…… looking at what you are already doing vs what changes that you may need to make….. what system are you going to have in your office to manage all of the above and deal with the patient and family needs…. …. The last bullet is your comfort level…. How do you feel about your potential involvement in the end of a patient’s life as a bigger role than faxing a death certificate to a funeral home. It’s not easy to watch someone that you possibly have a relationship with on some level come to the end of their life. How do you remain detached? These are definite things to ponder….

Thanks and feedback We would appreciate your contact information so that we can keep in touch with you and further support your implementation of this work. A listserv has been set up so that we can get feedback to see how you are doing throughout the process.

Planning: What needs to happen next?
Dr. Doris Barwich

Planning: What needs to happen next?
List of identified patients: Regular, proactive visits, coordinated with other providers Assess care needs And then plan care in collaboration with other care providers.

A good care plan addresses: Whole person
DIAGNOSIS GOALS of CARE SPREAD DISEASE BENEFITS OTHER PROGNOSTIC FACTORS TREATMENT BURDENS From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Assessment beyond symptoms: Refer to your own case story or refer to the case of one of the patients from the beginning of the session. Consider the case and speak to the components of the assessment:: To identify needs and preferences and translate these into goals of care. Who is this person and What are their needs in relation to the Disease and the Treatment of Disease, and their Goals. Clarification of goals will help to guide discussion re treatment options and ultimately care that reflects these conversations. Throughout the trajectory of illness. Eg: treatments previously effective may no longer be effective or “ may be a burden the patient can no longer bear” Disease: Understand the patient & family’s experience of the illness (Suffering) and their needs and preferences. Use a validated assessment tool helps ensure you systematically cover multiple domains of care. CARE PLAN PATIENT SYMPTOM BURDEN (ESAS) EXPERIENCE (SUFFERING) FUNCTIONAL STATUS (PPS) 110

Goals of care Maintaining and improving function. Staying in control.
Relief of suffering. Prolonging life for as long as possible or until a specific event (time limited trials of care). Living well. Quality of life. Pain and symptom management. Relieving burden for family members. Strengthening relationships. Preferences for location of care/ location of death. Life closure / dying well.

Care plans Care plans: Directed by the goals of care translated into concrete patient specific plans May mean reduction in aggressive tests, procedures, medications. Not doing ‘too much’ or ‘too little. Focus on quality of life and life completion. Collaborative. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Refer back to threads about conversation and planning already discussed in the workshop. Patients require regular proactive visits with GP, as well as coordinated with the other primary providers Ask ourselves: Could we make things easier on the patient/family – review the meds, tests. Recognize that some treatment has no relevance to their condition and could case them harm. E.g.: INR every week? What about when the person says to you I can’t swallow these horse pills; I am full just after taking my pills … Consider if treatment is adding quality to life. 112

Plan: Acknowledge realities
Assessment of prognosis. Approaching death. Suffering of patient and family. Some suffering is unavoidable Existential issues of meaning, multiple losses, functional decline. Spiritual concerns. Avoidable Iatrogenic From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Dr Tywcross (noted palliative care physician) reminds us that death & suffering are inseparable to some degree (losses, functional decline) However what suffering is avoidable is the suffering causes by our treatment or care provided that is not aligned with the patient’s wishes and goals. Or from how care is delivered. 113

Plan: Address suffering
Acknowledging patient/family distress and suffering is powerful. Non-abandonment: “I will stick with you”; “I am here for the duration of your journey.” Your presence is therapy. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Part of our plan needs to acknowledge suffering. Acknowledge when they describe how they are suffering or struggling. Acknowledgement is powerful and therapeutic. Suffering is something we can be present for. 114

GPAC guidelines: Palliative care: part 2
7 Sections: Brief overview, algorithm, medications Pain management Dyspnea Nausea and vomiting Constipation Delirium (includes section on palliative sedation) Fatigue and weakness Depression

Plan: Manage symptoms Fraser Health symptom guidelines: > 20 topics covered Extensive literature and peer review (4th edition: April 2009). Being reviewed and revised as a provincial document (BC Learning Centre for Palliative Care). From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Planning includes focus on the suffering that we can do something about – symptom distress – approaching with diligence, attention to detail and commitment. Under-treated symptoms cause many levels of distress, e.g., pain, lost time, fatigue, anorexia, discouragement, loss of spirit Under-treated symptoms impact families. Draw on resources available: Fraser Health Symptom Guidelines 116

Common symptoms: Dyspnea
Dyspnea present in 95% of pts with COPD and 75% of patients with advanced disease of any cause. Despite a good evidence base many people with chronic disease do not receive opioids for dyspnea until they are dying. From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. This is an example of a symptom that can be better managed, where suffering can be reduced. By actually implementing well established evidence in symptom management, when disease modifying therapies are not enough. Not waiting until we see the sign that death is on the horizon to initiate. Reference the James Lee Case study in your discussion. 117

Medical management: Opioids
Meta-analysis: OPIOIDS lead to statistically significant and clinically consistent improvement. Drug of first choice in management of moderate to severe dyspnea. Can be used for dyspnea in cancer, COPD, CHF, neurological disorders (e.g. ALS). Relief occurs in the absence of significant changes in blood gases, oxygen saturation. Jennings: Meta-analysis Thorax 2002 From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Jennings AJ, Davies AN, Higgins JPT, et al. A systematic review of the use of opioids in the management of dyspnoea. Thorax 2002;57:939–44. 118 118

Address issues related to functional decline
Exercise. Equipment and supply needs. Falls prevention. Financial concerns. Caregiver burden and support needs.

BC Palliative Care Benefits Program
Purpose: To support individuals of any age who have reached the end stage of a life-threatening disease or illness and who wish to receive palliative care at home. Eligibility - Canadian residents who meet all criteria: Living at home. Diagnosed with life-threatening illness with a life expectancy of up to 6 months. PPS score of 50% or less (exceptions considered). Consent to palliative rather than treatment oriented care. Physician submits the signed BC Palliative Care Benefits Program application on patient’s behalf. Reference: ! Revised Please share suggested modifications related to the content to Pauline James and Diane Campbell at the Ministry. They will make appropriate changes and vet through H&CC and Pharmaceutical Services Division. Eligibility criteria: 1 “Home” is defined as wherever the person is living, whether in their own home or living with family or friends, or living in a supportive living residence or hospice that is not covered under PharmaCare Plan B (for residents of Licensed Residential Care Facilities). Patients, or their representative, are required to sign the application form. The physician certifies that the client meets all palliative medical criteria in accordance with the PPS assessment tool and completes the application. The physician faxes the application to Health Insurance British Columbia (HIBC) for Plan P and to the Home and Community Care (HCC) office for medical supplies and equipment assessment. 120

BC Palliative Care Benefits Program (cont'd)
Approved Patients Receive: Palliative Care Drug Plan covers 100% of the cost of eligible prescriptions (approval within 24 hours). Assessment by health authority to determine need for supplies and equipment (e.g. PPS 50->30%) - a priority assessment. Clients reassessed monthly to confirm need and eligibility. Community Nurse will discuss with GP if patient no longer in need of free palliative supplies and equipment. Drug Coverage: Some drugs not on PharmaCare’s Plan P formulary may be considered benefits under Special Authority coverage if needed to alleviate patient discomfort (#4.2.2 in Guide). Coverage continues as long as the client is diagnosed as requiring palliative care. Reference: Please share suggested modifications related to the content to Pauline James and Diane Campbell at the Ministry. They will make appropriate changes and vet through H&CC and Pharmaceutical Services Division. The purpose of the drug plan is to provide palliative patients who choose to receive care at home with access to the same palliative drugs they would receive at no charge if they were in hospital. Medications covered by the plan include:  prescription medications prescribed for pain, symptom control and improved quality of life.  selected OTC drugs required to supplement the prescription drugs and considered to be medically-necessary adjuncts for quality palliative care. The plan does not cover medications not listed in the plan formulary, such as vitamins, herbs, or nutritional supplements. To receive coverage of the OTC drugs in the BC Palliative Care Drug Plan formulary, the physician must write a prescription for the medication. This allows the pharmacy to process a claim for the medication in PharmaNet. SPECIAL AUTHORITIES: If a drug that is not included in the formulary is needed to alleviate patient discomfort—and there is no substitute for that drug in the formulary—PharmaCare will consider a request for Special Authority Plan P coverage. To request Plan P coverage of a medication not included in the formulary:  The quickest method is to send a completed General Special Authority Request Form (HLTH 5328) by fax. The Special Authority Program fax number can be found on the request form.  The completed request form should be clearly marked “For Palliative Care Registrant” to ensure it receives first priority adjudication. include adequate documentation with the request. A decision on coverage may be delayed if PharmaCare needs to call the physician and/or consultant for additional information. 121

Compassionate Care Benefits Form
Provide Employment Insurance (EI) benefits to those who have to be away from work temporarily to provide care or support to a family member who is gravely ill and who has a significant risk of death within 26 weeks (six months). A maximum of six weeks of compassionate care benefits may be paid to eligible people. Reference: Six weeks are shared amongst the eligible people. Brochures are available for compassionate care 122

Use the End of Life Care Plan
Refer to: End of Life Care Plan Template. Track interventions. Track response to treatment. Other providers involved and plan of care. Note that the MOA have already had a review of this tool during the MOA section. Transitions are anticipated; planning is therefore key. Think about Mr. J. the man with COPD who arrived in ER and went onto ICU. By failing to plan ahead in COPD and similar conditions, the health care system virtually ensures that treatment will not follow patient preferences if they do not want intubation and ICU. Patients with serious chronic illness need a plan that documents agreement among the patient, his or her loved ones, and care team about how to respond to expected complications, with specific preparations. 123

Supports to team-based care
Establish reliable methods of message leaving and retrieving messages. Establish how patient visits and referral between team members should be made. Advise others on what information is useful on referral. Agree how and when communication between professionals will occur. GPs learn how to bill for palliative care in CD (reference in package). 124

Getting the help you need from the team
Della Roberts

Team players Patient, family and informal network Family physician
Community pharmacist Home Health / Community Care – Nurses/rehab/home support Nurse practitioners, community RT Acute care discharge nurses Disease specific specialists / services Hospice palliative care consult teams Who are the players? There are many who are key players for the patient and family from the health care team. And of course there are many more players who form around the patient and family beyond health care providers. Neighbors, volunteers, family and friends. How do you maximize the team as the patient’s illness advances? Reference the James Lee Case study in your discussion. 126

Experiencing life limiting illness Dependency and symptoms increase
Transitions in life-limiting illness Transitions Early Disease containment Maintaining function Decompensation Experiencing life limiting illness Decline and terminal Dependency and symptoms increase Death and bereavement Time of diagnosis From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009. Link to 100 things. Looked at a different way this visual depicts a common pathway for those with life limiting illness, regardless of the specific trajectory – there are common transitions: At time of diagnosis, When despite disease modifying therapy the person experiences decompensation from the disease impact, When dependency and symptoms increase, When the person is actively dying from the illness, to the Final transition of death and bereavement as their family continues on without them. Throughout this trajectory, those with life limiting illness will benefit from a palliative approach. When the person starts to decompensate and experience the limitations of the illness is often when referrals are made. When dependency starts to become greater and symptoms increase, if a palliative approach has not been imbedded in care, the need becomes even more urgent for patients who are sick enough to die. During this transition, this is potentially also a time of increased awareness of the possibility of death and readiness for planning and support. Primary Health Care Provider Hospice Palliative End of Life Care Education Project Phase One: General Practitioner Needs Assessment Focus Group Report. April 2009. Time McGregor and Porterfield 2009 127

Spectrum of collaboration
Parallel practice Consultation/referral Co-provision of care What kind of a team player are you? Does your style change as the situation changes? Or are you almost always a parallel player – making decision within your scope but with little interaction with others? As illness advances – you are isolating your patient/family from support if you continue to be a parallel player. Sometimes even in referral – we maintain parallel play at the cost of supporting the patient/family and at our own costs. We’ll highlight the team across the transition of palliative care. 128

Transition 1 Advancing disease
Referral - Home and community care Chronic disease clinics Identify main contact in community and ensure information exchange. Discussion with patient family of goals, wishes and plans as illness advances and acute changes occur. Plan for health changes. Tools – advance care planning; guidance for advancing illness, goals and wishes, identification of substitute decision maker. Disease containment, focus on function – For patient with increasing symptoms, visits to ER; needing help with personal care and/or symptoms Patients with advancing illness most likely are connected with a specialist for their specific illness, respirologist, cardiologist, perhaps are connected with a chronic disease clinic. Team play and coprovision of care may already be the norm for patients such as James Lee. As his disease advances, so does the team. With indications of increasing frailty – referral to other services are essential. Through indicators and sentinel events such as ER visits, referral to community based services will create a further net of support. Services such as home support for help with bathing, or nursing for support with symptom management; maybe increasing connection with the chronic disease clinics. Identifying a main contact with Community care and ensure information exchange is essential to working in collaboration versus in parallel. For many patients with chronic disease, it will never be clear that there are in their last months of life, so these patients may never be enrolled on the palliative services in community – where greater certainty to die within months is required. 129

Transition 2 Decompensation
Prognosis months versus more than a year; cancer – PPS 50% Referral to Home care for Palliative services - nursing/rehab/home support/equipment Tools - Palliative benefits ; GP letter from HH - needs response. Coordination of care conversation between GP and HCN. Enable ready access to achieve co-provision of care vs parallel practice. Discuss pt/family goals and wishes as illness advances - put plans in place. For those patients when there is clarity that death is anticipated in months, referral to palliative home care is important. Those anticipated to have 6 months of less to live can be enrolled palliative benefits, and at the same time referred to home and community care services for palliative care. This referral initiates closer home care nursing monitoring and coordination of care as illness advances. 130

Consultation with hospice palliative care across transitions
HPC specialists available in each health authority - but specific access different. HPC team and structure in your community: Physician, nursing, psychosocial support. Describe the support for after hours and weekends. Consultation with HPC providers – specialists in palliative care – can happen at any time along the trajectory. Each health authority is structures somewhat differently. At this point – provide the participants with an outline of the services available to them from the consult team, including support for after hours and weekends. If there is a reference of palliative care numbers in the community – provide the participants with those. 131

Indicators of referral HPC specialist
Complex patient / family specific needs and anticipated illness course. Patient / family distress with symptoms or coping remains after providing care No resolution within 2-3 interventions. Distress continuing. Complex family dynamics and indications of total pain. Self reflection - knowledge, skill and ability of involved team in relation to patient/family needs. These are common indicators of referral for HPC consultation. Consultation with HPC is no different than other consultation, and is dependent on the skill, knowledge and ability of the providers. For an experiences Family physician who home visits, and experience in symptom management, the services of the consultants may be needed in more complex circumstances than for a family physician who does not home visit, and has less experience with advancing illness and support at home. 132

Criteria for hospice palliative care/home care/BC benefits
Criteria is both prognosis and needs based Last months of life. Accepting of palliative services. Need home based services. HPC consultation is available for CD patients at any time along the continuum. For specialized services such as home health palliative care service and hospice residence admission there are criteria eligibility. What are your thoughts about the palliative care approach concept and HPC interface? (large group discussion – 5 minutes) 133

Transition 3 Dependency and symptoms
Increased frequency of team communication. HCN and GP connecting via fax and phone anticipating changes, responding to acuity, preparing patient and family for changes and death. Identify goal and backup – home death or hospice/hospital. GP home visit – ideal in conjunction with HCN; plan for 24 hr access to support for patient/family. May consult with HPC for complexity of symptoms – reference to symptom guidelines. Tools – palliative care planning conference; No CPR order; preparation for time of death; may complete Notification of Death form. As dependency and symptom increase, so does the frequency of team communication. Responsiveness is a key to team play when supporting a patient with advancing illness as change is the norm, and to be expected and planned for. Visits at home are critical as patients become too weak to go to the office for care. Preparation for changes including death are essential. It is important to remember that the time of death can often be unexpected, although anticipated with the underlying illness. Therefore waiting for signs of death on the horizon is often planning that misses the window of time. Reference the James Lee Case study in your discussion. 134

Transition Last days Responsiveness / plan required – anticipating dying – may be change in plan for home death. Nurse and physician: Reinforce family preparation what to expect prior to death and at time of death. Anticipate route changes, meds for active dying. Clear plan who to call for what 24/7. Complexity – HPC consult. Tools – medication kits; Notification of Expected Death When patients are moving into last days, there is again an urgency for team connection and responsiveness, often involving medication route changes and medications for symptoms during active dying. And may involve a move from home to hospice or palliative care units if families are not able to manage the intensity of care needed. Complexity in symptoms or care can again emerge and benefit from consult with hpc team for conversation or for a visit. Palliative care is a team sport, those who practice in parallel play find palliative care exhausting or leave patients/families poorly supported. As shared play in a team sport palliative care create meaningful memories for families and for those who care for them. 135

Table discussion Think about your practice in relation to the palliative approach: How can you more effectively work as a team with these patients? How can you support one another? What could you do differently to maximize the roles and time of all primary providers? A time for the participants in the workshop to consider the concepts presented, relate these to what can be done differently, and identify in specific terms ways they can improve their collaborative practice in implementing a palliative approach with patients with advancing chronic illness. Be specific 136

Collaborative practice: Table discussion
Identify one aspect of care that you will do differently in your practice and when What could I do differently in my practice, based on this workshop? Each participant creates a specific action plan for identified practice changes, and identifies when this could begin. 137

How to support patient and family
Dr. Douglas McGregor 138

What we know about GPs doing this work
They find it immensely fulfilling. They get more comfortable at it the longer they are in practice. A personal contact with a supportive palliative care physician greatly enables this. Historically, it was very badly taught at medical school. It makes a huge impact on the patient and surviving family. “GPs in several countries see the care of palliative care patients as a special part of their role. The care f dying patients is seen as important rewarding and satisfying. They see themselves as part of a team of carers and frequently as team coordinators…..some feel competent to manage physical symptoms, but find the psychological aspect of palliative care very hard to manage. The length of time spent in general practice is the best predictor of comfort in palliative care management. Many authors conclude that there is a need for further training from undergraduate to vocational training to address these perceived inadequacies.” How well do general practitioners deliver palliative care? A systematic review. Geoffrey K Mitchell Palliative Medicine 2002; 16: 457 – 464 Physicians surveyed in the Niagara region of Ontario “felt that the most imperative component of the care model was having access to palliative care consultations around the clock. Practice based education was felt to be the next most important component.” Enhancing family physician capacity to deliver quality palliative home care. Denise Marshall et al; Canadian Family Physician: 54. December 2008

What equips GPs to give quality care in the last days of life?
Strong relationships with Community Nurses and local palliative care teams. Good access to these resources. Shared clinical practice guidelines. Adequate remuneration for the time intensive nature of the work. Availability and familiarity with local “medication kits” or pharmacy arrangements. There is a body of literature which is in broad agreement about the elements which need to be in place to facilitate good and sustainable Palliative care in the Community setting. Improving the delivery of palliative care in general practice: an evaluation of the first phase of the Gold Standards Framework Palliative Medicine 2007; 21: 49_53 Building primary care capacity in palliative care: proceedings of an interprofessional workshop. Journal Of Palliative Care [J Palliat Care] 2007 Summer; Vol. 23 (2), pp The interface of palliative care, oncology and family practice: A view from a family practitioner. By: MacKenzie, Michael A., CMAJ: Canadian Medical Association Journal, , 06/30/98, Vol. 158, Issue 13 The role of general practitioners in continuity of care at the End of Life: a qualitative study of terminally ill patients and their next of kin. Palliative Medicine 2007; 21: 409–415 Structure of Care Integration and support of the family physician with a team, including access to specialist physician and nurses, and psychosocial counseling with bereavement care. Interprofessional training to build knowledge and skills with ongoing education and mentoring by the local specialists. Importance of a single point of access (and therefore a registry) Availability of specialist backup 24/7 Appropriate fee schedules to compensate physicians adequately for the time which it takes to assess and discuss the care of dying patients with a team Appropriate funding for the needs of patients dying at home (medications, equipment, etc) Efficient information and communication systems, allowing rapid access to clinical data and expertise, and facilitating planning. Processes of Care Standardised assessment tools (for example ESAS & PPS) Team meetings (funded) with opportunities for care-planning, continuity, shared learning, informal consultation, referral strategies and practice guidelines Practice based learning and the compilation of educational material / resources Common patient records (portable files) and mechanisms to support communication especially within on-call situations Outcomes of Care Evaluation by a common set of measures of the quality of life of dying patients, and the quality of care they, and their families, receive The importance of using standardized outcomes for evaluation and the development of clinical indicators Integration and feedback of quality improvement measures with the process of care The Gold Standards Framework documents the same elements, but adds advanced care planning and symptom control as further requirements to support high quality GP Palliative Care. From the focus group: 1) communication, teamwork within and between teams, staff support and continuity of care out of hours; 2) advanced care planning; 3) support for carers and families; and 4) symptom control. Improving the delivery of palliative care in general practice: an evaluation of the first phase of the Gold Standards Framework Palliative Medicine 2007; 21: p. 50

Is this a good death? Who decides?
US Institute of Medicine (1997): “One that is free from avoidable suffering for patients, families, and caregivers; in general accord with patients’ and families wishes; and reasonably consistent with clinical, cultural, and ethical standards.” 141

Patient perspectives: A “good death”
Pain and symptom management. No prolongation of dying. Sense of control: Clear approach to decisions and roles. Strengthening relationships: – “Doing for others”; not a burden. Continuity of self: – Before, during, and after illness. Meaning and completion. Life review, purpose and meaning. (Steinhauser et al,. Factors considered important at the End of Life by patients,family, physicians and other health care providers. JAMA 2000; 284: ; Singer. Quality End of Life Care: patients’ perspectives. JAMA 1999; 281: ) BMJ 2007; 335 : 184 doi: /bmj (Published 26 July 2007) Dignity and the essence of medicine: the A, B, C, and D of dignity conserving care Attitudes Questions to be asked How would I be feeling in this patient's situation? What is leading me to draw those conclusions? Have I checked whether my assumptions are accurate? Am I aware how my attitude towards the patient may be affecting him or her? Could my attitude towards the patient be based on something to do with my own experiences, anxieties, or fears? Does my attitude towards being a healthcare provider enable or disenable me to establish open and empathic professional relationships with my patients? Actions to be taken Make a conscious effort to make these questions a part of your reflection on the care of each and every patient Discuss the issue of healthcare providers' attitudes and assumptions, and how they influence caring for patients, as a regular part of case reviews and clinical teaching Include ongoing professional development activities that have you challenge and question your attitudes and assumptions as they might affect patient care Create a culture among your colleagues and within your healthcare setting in which acknowledgement and discussion of these issues becomes a standard part of providing care Behaviours Disposition Treat contact with patients as you would any potent and important clinical intervention Professional behaviours towards patients must always include respect and kindness Lack of curative options should never rationalise or justify a lack of ongoing patient contact Clinical examination Always ask the patient's permission to perform a physical examination Always ask the patient's permission to include students or trainees in the clinical examination Although an examination may be part of routine care, it is rarely routine for the patient, so always, as far as possible, take time to set the patient at ease and show that you have some appreciation for what they are about to go through (for example, “I know this might feel a bit uncomfortable”; “I'm sorry that we have to do this to you”; “I know this is an inconvenience”; “This should only hurt for a moment”; “Let me know if you feel we need to stop for any reason”; “This part of the examination is necessary because . . .”) Limit conversations with patients during an examination (aside from providing them with instruction or encouragement) until they have dressed or been covered appropriately Facilitating communication Act in a manner that shows the patient that he or she has your full and complete attention Always invite the patient to have someone from his or her support network present, particularly when you plan to discuss or disclose complex or “difficult” information Personal issues should be raised in a setting that attempts to respect the patient's need for privacy When speaking with the patient, try to be seated at a comfortable distance for conversation, at the patient's eye level when possible Given that illness and changing health status can be overwhelming, offer patients and families repeated explanations as requested Present information to the patient using language that he or she will understand; never speak about the patient's condition within their hearing distance in terms that they will not be able to understand Always ask if the patient has any further questions and assure them that there will be other opportunities to pose questions as they arise Compassion Getting in touch with one's own feelings requires the consideration of human life and experience Reading stories and novels and observing films, theatre, art that portray the pathos of the human condition Discussions of narratives, paintings, and influential, effective role models Considering the personal stories that accompany illness Experiencing some degree of identification with those who are ill or suffering Ways to show compassion An understanding look A gentle touch on the shoulder, arm, or hand Some form of communication, spoken or unspoken, that acknowledges the person beyond their illness Dialogue Acknowledging personhood “This must be frightening for you.”“I can only imagine what you must be going through.”“It's natural to feel pretty overwhelmed at times like these.” Knowing the patient “What should I know about you as a person to help me take the best care of you that I can?” “What are the things at this time in your life that are most important to you or that concern you most?” “Who else (or what else) will be affected by what's happening with your health?” “Who should be here to help support you?” (friends, family, spiritual or religious support network, etc) “Who else should we get involved at this point, to help support you through this difficult time?” (psychosocial services; group support; chaplaincy; complementary care specialists, etc) Psychotherapeutic approaches Dignity therapy Meaning centred therapy Life review/reminiscen

Challenges of ensuring high quality care at the end stages
What might some of the “issues” be in relation to the patient? Overcoming barriers to caring for dying patients Barriers to “diagnosing dying” Hope that the patient may get better No definitive diagnosis Pursuance of unrealistic or futile interventions Disagreement about the patient's condition Failure to recognise key symptoms and signs Lack of knowledge about how to prescribe Poor ability to communicate with the family and patient Concerns about withdrawing or withholding treatment Fear of foreshortening life Concerns about resuscitation Cultural and spiritual barriers Medicolegal issues Effects on patient and family if diagnosis of dying is not made Patient and family are unaware that death is imminent Patient loses trust in doctor as his or her condition deteriorates without acknowledgment that this is happening Patient and relatives get conflicting messages from the multiprofessional team Patient dies with uncontrolled symptoms, leading to a distressing and undignified death Patient and family feel dissatisfied At death, cardiopulmonary resuscitation may be inappropriately initiated Cultural and spiritual needs not met All the above can lead to complex bereavement problems and formal complaints about care Educational objectives for overcoming barriers to diagnosing dying Communicate sensitively on issues related to death and dying Work as a member of a multiprofessional team Prescribe appropriately for dying patients to: discontinue inappropriate drugs convert oral to subcutaneous drugs prescribe as required drugs appropriately, including for pain and agitation prescribe subcutaneous drugs for delivery by a syringe driver Use a syringe driver competently Recognise key signs and symptoms of the dying patient Describe an ethical framework that deals with issues related to the dying patient, including resuscitation, withholding and withdrawing treatment, foreshortening life, and futility Appreciate cultural and religious traditions related to the dying phase Be aware of medicolegal issues Refer appropriately to a specialist palliative care team. Care of the dying patient: the last hours or days of life BMJ 2003; 326 : 30 doi: /bmj (Published 4 January 2003) Goals of care for patients in the dying phase Comfort measures Goal 1—Current medication assessed and non-essentials discontinued Goal 2—As required subcutaneous drugs written up according to protocol (pain, agitation, respiratory tract secretions, nausea, vomiting) Goal 3—Discontinue inappropriate interventions (blood tests, antibiotics, intravenous fluids or drugs, turning regimens, vital signs); document not for cardiopulmonary resuscitation Psychological and insight issues Goal 4—Ability to communicate in English assessed as adequate (translator not needed) Goal 5—Insight into condition assessed Religious and spiritual support Goal 6—Religious and spiritual needs assessed with patient and family Communication with family or others Goal 7—Identify how family or other people involved are to be informed of patient's impending death Goal 8—Family or other people involved given relevant hospital information Communication with primary healthcare team Goal 9—General practitioner is aware of patient's condition Summary Goal 10—Plan of care explained and discussed with patient and family Goal 11—Family or other people involved express understanding of plan of care (Adapted from The Liverpool Care Pathway) Reference the James Lee Case study in your discussion.

Challenges of ensuring high quality care at the end stages
Participants described their experiences in great detail. The analysis indicates that in information sharing the process is as important as the content. The timing, management, and delivery of information and perceived attitude of practitioners were critical to the process. This applied to information interactions at all stages of the illness. Main content areas mentioned related to prognosis and hope. Hope can be conveyed in different ways. Secondary information from various sources is accessed and synthesised with the primary information. All patients, regardless of origin, wanted information about their illness and wanted it fully shared with relatives. Almost all patients requested prognostic information, and all family members respected their wishes. Information was perceived as important for patient-family communication. Information needs of patient and family changed and diverged as illness progressed, and communication between them became less verbally explicit.Conclusions Information delivery for patients needs to be individualised with particular attention to process at all stages of illness. Patients and families use secondary sources of information to complement and verify information given by health carers. BMJ 2004; 328 : 1343 doi: /bmj (Published 19 May 2004)PaperWhat do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study What might some of the family’s issues be?

Identifying and balancing the goals of care – takes leadership and teamwork
The biggest role here is guidance and leadership, after clarifying the patient / family’s goals and wishes and beliefs. Need to repeatedly check in with patient, family / caregivers, and professionals about what is developing or changing. Anticipation is essential. “Active listening” is critical. A particularly interesting study of 25 GPs, confirmed again that care of the dying was viewed as a rewarding and satisfying part of their work. They saw themselves as part of a team of carers, seeing themselves as the co-ordinators of such care, with good relations with home care nurses though less good with hospitals and social services. They see a continuum in their relationship with patients, many of whom they had known for many years, and good honest communication at this point was seen to be essential. There were some problems of tensions with hospices and specialists in palliative care, care of non malignant conditions and the role of the GP in the social construction of bereavement. Field D Special not different: General Practitioners’ accounts of their care of dying people. Soc Sci Med 1998:46(9)

Markers of the dying phase
Patient withdrawing from world around them. Refusing tablets, food and drink or basic nursing care (need to exclude obvious clinical depression). Decreased appetite, decreased oral intake. Decreased circulation, mottling, tachycardia. Changes in breathing patterns with respiratory. congestion (trapped secretions) or periods of apnea. Changes in level of consciousness. Occasionally confusion, agitation, delirium. Changes in perception: Awareness of “other”. Diagnosing dying—decision making The most important element in diagnosing dying is that the members of the multiprofessional team caring for the patient agree that the patient is likely to die. If the team members are in disagreement then mixed messages together with opposed goals of care can lead to poor patient management and confused communication. If the patient is thought by the healthcare team to be in the dying phase (that is, having only hours or days to live), then this should be communicated to the patient, if appropriate, and to the relatives. Once dying has been diagnosed the team can then refocus care appropriately for the patient. Recognising the key signs and symptoms is an important clinical skill in diagnosing dying. The dying phase for cancer patients can sometimes be precipitous—for example, massive haemorrhage—but is usually preceded by a gradual deterioration in functional status. In cancer patients, the following signs are often associated with the dying phase: The patient becomes bedbound The patient is semicomatose The patient is able to take only sips of fluid The patient is no longer able to take oral drugs. This predictability of the dying phase is not always as clear in other chronic incurable diseases. Patients with heart failure highlight some of the complexities of diagnosing dying. Heart failure is the most common single cause of death in many hospital medical wards. The palliative care needs of these patients have, until recently, been largely ignored. However, the national service framework for coronary heart disease specifically requires cardiologists and others involved in the management of patients with heart failure to work with palliative care staff to use or adapt palliative care practices for their needs. Care of the dying patient: the last hours or days of life BMJ 2003; 326 : 30 doi: /bmj (Published 4 January 2003)

End of Life care check list
Points to consider when patients enter the dying phase: Review a patient's goals of care, preferred place of care, what to do in an emergency. Refer to home nursing if not already arranged. Ensure that required forms are completed (No CPR and/or Planned Home Death). Discontinue non-essential medications. Best practice in the last hours and days of life Current drugs are assessed and non-essential ones discontinued “As required” subcutaneous medication is prescribed according to an agreed protocol to manage pain, agitation, nausea and vomiting and respiratory tract secretions Decisions are taken to discontinue inappropriate interventions The ability of the patient, family, and carers to communicate is assessed The insights of the patient, family, and carers into the patient’s condition are identified Religious and spiritual needs of the patient, family, and carers are assessed Means of informing family and carers of the patient’s impending death are identified Family and carers are given appropriate written information The general practitioner is made aware of the patient’s condition A plan of care is explained and discussed with the patient, family, and carers From National Institute for Health and Clinical Excellence, 2004 147

End of Life care check list (continued)
Arrange for subcutaneous (SC) / transdermal medication administration or a drug kit to be placed in the home when a patient is no longer able to take medications by mouth. Arrange for a hospital bed +/- pressure relief mattress. Arrange for a Foley catheter as needed. Leave an order for a SC anti-secretion medication (e.g., atropine, glycopyrrolate).

Can the family do this? Practically? Psychologically? Elderly couple.
Singles. Confusion/ incontinence/costs. Psychologically? Mental health or addiction issues. Out of keeping with family’s expected role or usual activity.

Preparations for death
Education and support for caregivers/family. You may need to prepare, guide, and interpret the experience. Dialogue about dying and preparations that need to be made. People who need to visit (and those who don’t). Issue of “unfinished business”. Funeral plans/wills. Exploration of preferences for location of death (home, hospice, hospital). Patients and families may not have done this before – you need to “set the stage” for them.

Preparations for death: Referral to hospice:
May differ in each Health Authority but will require involvement of palliative care team and clarification of goals of care (No CPR; No dialysis; prognosis < 3 months; no IVs; no further acute interventions). Per diem cost (~ $30/day). More stable re symptom management. Private rooms and support for families. Do you need a back-up plan? No dialysis and no IVs is variable between HAs, but this can be brought out in the teaching

Preparations for death
When a home death is preferred: Access your local Home Health service/palliative care providers and discuss an urgent referral. Information: Identify supports available: Will need caregivers who can provide hands-on care. Medications: Training in Subcutaneous medication administration

Preparations for death (continued)
When a home death is preferred: Completion of community based No CPR form: Includes Room to document plan for time of death (No 911). Completion of the Notification of Expected Death form to clarify pronouncement of death and final disposition.

Every family is different: Explore preferences for time of death: Keeping vigil; who to call. Other arrangements: Spiritual support? Timing varies: Some die quickly, others more slowly. Some seem to “choose” to die alone, others someone present. May require “permission” of family. Carers may have more concerns than patients , and they are usually neglected There is little recognition of the significant unmet psychosocial needs of informal carers of cancer patients-43% had significant unmet needs leading to poor health, a need to have a good relationship with the health care professional, receiving honest information, managing daily life, emotions.. Soothill K et al Informal carers of cancer patients: what are their unmet psychosocial needs Health Soc Care Community 2001, 9(6)

?Oral intake Feeding? ?IV fluids. Decreased oral intake is normal and does not represent starvation. Parenteral or oral feeding does not prolong life or improve symptom control. Need to re-direct caring -> mouth care and ice chips. Reference the James Lee Case study in your discussion.

At the time of death Acceptance of dying as a normal process.
Patient/family as the unit of care. Shared decision making/Advance Care Planning: Information about prognosis and options for care with appropriate time for reflection and discussion. Effective communication: Hope and support. Anticipatory planning. Management of symptoms. Management of transitions. Effective team work and support. Predictors of family care satisfaction were 1) family care perceptions (greatest predictor) 2) family members age 3) family functioning –greatest need of support in those with poor functioning 4) length of time patients receive care. There is a need to sensitively explore the perceptions of care from the family to guide service provision Medigovich et al Predictors of family satisfaction with an Australian palliative home care service: a test of discrepancy J Pall Care (4):48-56

Supporting grief and bereavement
157

Definitions Bereavement: the loss of a significant person and also the period of adjustment for the bereaved after the loss. Grief: the normal response to the loss of someone or something precious. Mourning: the social expression of grief after a death, associated with rituals and behaviours within the appropriate religious and cultural context.

Classes of grief Typical (Normal) Anticipatory Complicated
Disenfranchised Unresolved NORMAL: Highly individual – informed by culture and context (attitudes/ expectations of others, circumstances) Is happening to everyone involved – family members, caregivers, co-workers, friends, pets, and renal clinic staff Stress of the illness and death can stir up old wounds – al that is hidden, unspoken, unfinished and unforgiven may emerge within families. Avoid taking sides! Do we really ever get over it? Manifestations: Feelings – numbness, indifference, withdrawal, need to review Thoughts – confusion, concentration difficulties, disbelief/ avoidance, daydreaming, constant thoughts about the person. Physical – SOB, tight chest, palpitations, GI upset, dizziness, fatigue, restlessness, loss of appetite, sleep disturbance Social – distancing, reduced interest, unrealistic expectations, poor judgment about relationships (therefore vulnerable) Spiritual – blame God / life , loss of meaning, wanting to die ANTICIPATORY: Grieving what is already lost in the past (health status, expectations, prior “inner narrative ” and unfulfilled dreams, activities, altered relationships) current losses being encountered (going to work, enjoying hobbies - George and his car - , fulfilling family responsibilities, intimacy, changing body image ,increasing dependency, and what will be lost in the future. Shares features with normal grief in presentation, but is often unconscious May begin with diagnosis Is experienced by the dying person as well as the family/ others Emotions Anger at the system, the doctors, the “toxins” Anger with God, people who “let them down” Need for control Questioning beliefs/ previously held certainties Avoidance of certain circumstances Anxiety Relational/ role disruptions SADDNESS can look like WITHDRAWAL There are opinions that the opportunity to grieve in anticipation of a death has benefits , making death more understadable and giving families a chance to bring closure, plan for the future and begin to grieve. COMPLICATED: Grief is complicated when the process of adjustment is impeded. There are suggestions that those who do not have the opportunity to experience or demonstrate antcipatory grief are more at risk. DISENFRANCHISED: “the grief that people experience when they incur a loss that is not, or cannot, be openly acknowledged , publicly mourned, or socially supported” DOKA 2002 When an individual’s grief experience is neglected, unacknowledged, unexpressed, avoded by others, not legitimized, or not accorded the normal need to grieve, it is disenfranchised GROLLMAN 2002 May include: Homosexual relationships, extra marital affairs Abortion/ miscarriage/ death of a pet Losses experienced by children, people with developmental difficulties, mentally ill Stigmatized deaths, AIDS, suicide, women in DTES Unusual patterns of grief expression Cultural expressions/ expectations, not acknowledged or addressed. UNRESOLVED: “stuck” in some aspect of the process- unable to engage with a new life that integrates a new relationship with the person who has died, perhaps connected to fears of loss of former roles or identity Can’t forget some aspect Blaming themselves/ other Trapped by circumstances of death Pining/ inability to readjust/ let go 159

What are the patient/family cultural traditions?
Do you understand how they have developed over centuries? Are they important to you? Are they important to your siblings? Are they important to your children? What other traditions have you witnessed? Relate personal impressions of these and encourage discussion from the audience. 160

CASE STUDY “The Sick Room” by Edvard Monch.
How different family members react when faced with a dying close relative – or even different phases in the same person. CASE STUDY Two months later (Transition Three) Mr Lee is now dependent on transfusions but he is finding the trips to the cancer agency to receive the transfusions quite burdensome (his PPS is 30). Although you are aware that James had expressed his desire to remain at home as long as possible, the home care nurse is concerned the family is feeling very burdened with the situation. You decide to do a joint visit with the Home Care Nurse and assess their current goals of care and capacity to remain at home. Following the visit, you and the Home Care Nurse review and revise the plan of management based on input from James and his family. Total 20 minute conferencing time. (GP Billing: for Community Patient Conferencing & for House Call; 1x200 for Additional pts seen at house call) Based on this conversation, the family (patient, wife and adult children) now understand where Mr Lee is on his illness journey and feel that they can commit as a family to continue caring for James at home for the time being. The next day, James’s son speaks with you on the phone about his decision to stop the transfusions. (GP Billing: for Palliative Care Telephone/ Follow-up Management Fee) The Home Care Nurse arranges for increased home support & appropriate equipment. The Home Care nurse agrees to call you at least weekly regarding the situation and you decide to visit every couple of weeks. Plans are made for an expected death at home. (GP Billing: for each call from home care nurse (Simple Advice to AHP) plus for each home visit whether planned or called to see)

Understanding normal grief and how to support it
85% of grief experiences follow a normal pathway - it’s not about fixing it. In the context of a death, grief is a complex lifelong process that involves transforming a relationship rather than detaching from it. We all grieve differently - allow for diversity. It often gets worse before it gets better. You can’t prevent grief, but you can try to develop elements of resilience. Zhang et al: Update on Bereavement Research: Evidence – Based Guidelines for the Diagnosis and Treatment of Complicated Bereavement Journal of Palliative Medicine Vol. 9, Number 5, 2006 Early work by Elisabeth Kubler Ross, Bowlby and Parkes has been evolved – no longer believe in the pattern of orderly progression through grief from disbelief/ shock, to separation distress or yearning, then angry protest and finally acceptance/ adjustment. 162

Resilience “The capacity to bounce back, to withstand harm to yourself” Insight Independence Relationships Initiative Creativity Humour Morality Steven & Susan Wolin The Resilient Self: How Survivors of Troubled Families Rise Again Resiliency is not just struggling from one crisis to another , but developing how top become a stronger person along the way. Insight – more than knowledge of CKD, but includes asking searching questions which lead to an understanding of not only the medical terms and how the body may react to certain situations and learn to anticipate what may happen, and rebound faster if possible. Independence – Important to distance themselves psychologically from the disease and that they don’t define themselves solely by it Relationships – special person, spouse, intimate relationship, or peer support group, or online internet group Initiative – determination and optimism, staying in control, managing life instead of just reacting to events Creativity – Having an outlet for self expression, gardening, journalling, exercise, pets, imagery, etc Humour – laugh and play as often as possible ensure calendar has events in it Morality – finding a purpose in living – making a contribution to the world around them

Understanding normal grief and how to support it
Bad News – SPIKES Lifestyle Management What is helpful for them “Homework” Education Normalize the process not “going crazy” What to expect What is helpful Giving hope Key phrases Clichés to avoid Resources Pharmacology It is a strategy NOT a script SPIKES a 6 point protocol for breaking bad news S = physical Setting and listening Skills – privacy, involve those who need to be involved, sit down, eye level, look attentive and calm, listening mode, availability – switch off pager/ cell P = Patient’s Perception - what do you know, think about, worry about this? Reflect patient/ family’s language I = Invitation - are you the kind of family/ person who wants to know… how much information would you like me to give now… K= Knowledge – prepare the patient – now I have to tell you some bad news, I’m afraid that this is not good….. Same forms of language “lump” “spread” Avoid technical speech forms Small chunks Check on absorption Take the time it needs E= empathy: “empathic response” 3 steps listen for the patient’s emotion identify the source of that emotion demonstrate that you have made the connection “I realise how shocking the results of the latest tests must be” S = Strategy & Summary: check in with patient what they have heard and go over the main information points again Lifestyle management: Exercise, diet, keeping up activities as much as possible, reading, favourite activities “Homework” ask patient/ family member to do something specific – appropriate to them. Write it down, and repeat in your chart – avoids the half-expected prescription. Not really needed. Sometimes a script for 10 sleeping pills Ask about sleep before the funeral/ going back to work Specifically check not self treating with patient’s meds or alcohol. Pharmacology

Key phrases Use the deceased’s name.
Acknowledge the death – “I am sorry James is gone”. Talk about the deceased and memories, ask about “What are you remembering about James today?” Bring closure to the death “Do you have questions about James’ final illness or treatment?” Talk about grief feelings: “How has James’ death affected you?”

Key phrases (continued)
“I am sorry” “It must be hard for you” “What would be most useful right now?” “Do you want to talk about it?” “Do you have someone you would like me to call?” “What do you miss most about James?” “What would you like me to do for you?” “What are your supports?”

Clichés to avoid “ I understand” or “ It’s for the best”
“There was a reason” or “ It’s God’s will” “I know how you feel” “Time heals” “You will get over it” Avoid giving examples of those who are “worse off” Disallowing patient's feelings “ You should be getting over this by now” Giving early advice

Resources Every member of staff should know how to access.
Handouts / leaflets. BC Bereavement Helpline and other counseling/ grief support resources. Local hospice society. Legal issues/ custody issues / public guardian and trustee Specialist areas – children, teenagers, mental health and addictions. Consider who are key risk to refer?

Complicated grief Need to recognize early because:
Symptoms of complicated grief post loss are highly predictive of impairment and complications at 13 and 24 months post loss. Rate of depression is 15-35% during the first year after loss of a spouse. Suicide risk especially after loss of a child, loss of a spouse (older men) and sudden traumatic loss. Higher rates of morbidity, mortality, health care utilization, alcohol, tobacco, sedatives and impaired immune function.

Practical tips for the office
An immediate phone call to family/ caregiver. Inform and debrief with all staff in the office. Send a card – some staff may want to write something too. Ensure all appointments are cancelled. Phone CHNs to thank and debrief. A follow up visit at weeks. Another at 6 months.

Grief versus depression
Feeling Grief Depression Mood states Greater range, quick shifts in a day, variability in mood, activity, appetite, sexual interest in one week Mood and feelings static-consistent sense of depletion, psychomotor retardation,anorexia,sexual interest Anger Open, externally directed Absence of external anger, Internally directed Sadness weeping Difficulty weeping or controlling weeping Self concept Guilt associated with specific aspects of the loss – preoccupation with loss - world seems empty Loss confirms they are bad or un-worthy – punitive thoughts – global guilt. Preoccupation with self Responsiveness Periodic – want solitude but respond to warmth and involvement Static – fear of being alone and yet unresponsiveness to others Pleasure Periodic – responds to warmth and involvement All pleasure restricted – loss of sense of humour

Our circle of care Non – negotiable in this context of healthcare.
Team meetings not just technical reviews but remembering spaces. Awareness of early “burnout”. Awareness of staff supports available. Memorials are for the staff as well.

Acknowledging our own grief
For individual patients Individual “closure” rituals. Group “moment of silence” or reflection on what we learned from this person about death. Photos or characteristic items as transitions. Place for “thank you“ letters for staff to see. One thing we don’t talk much about, is how we as clinicians grieve the loss of our patients. For individual patients some people use “closure rituals.” For example, one oncologist in a past workshop used the ritual of completing the death certificate to consider 3 things: what he learned about cancer, what he learned about the patient, and what he learned about himself. . If you work in a group that knew the patient, you may want to have a moment of silence to remember the person and what s/he taught you about death and dying. Your group may decide to display a momento of the patient for a week, or to gather and light a candle for each patient who died that month. .

Acknowledging our own grief (continued)
For cumulative deaths Personal philosophy of life, death, medicine Certainty, control, responsibility. Emotional distance, flexibility, conflict. Resources for avoiding stress, burnout Balance personal, professional life. Rewards for this aspect of medicine Sense of connection, accomplishment, success. As clinicians we also need to acknowledge the impact of many deaths over time, or cumulative deaths. This is like a “slow burn” that can lead to exhaustion and burnout, or to becoming overly involved with patients. Most clinicians caring for dying patients find ways to provide some emotional support for each other in this work. Professionals use different psychological strategies for coping with cumulative patient deaths. One is having a personal philosophy of life, death, and medicine. Accepting medicine’s limitations, and our personal limitations, on how much suffering we can relieve, and how responsible we are to understand and control the course of disease. Another is keeping our personal and professional boundaries clear in the care of the dying – being involved, but not overly involved – and is important. Part of these boundaries is being able to handle disagreements and conflicts with dying patients, with empathy and compassion. We also need to have resources for avoiding stress and burnout. Clinicians are notorious for not balancing their personal and professional lives. A survey of physicians showed that most achieve balance through regular physical activity, “meaning in medicine” groups, and spirituality. Finally, many of us didn’t come to this work assuming that End of Life care would be “rewarding.” But it involves lots of what makes medicine meaningful - a sense of connection and joining with others to make a positive difference at a critically important time for the patient.

Physician Health Program
Dr. Andrew Clarke

Please retain this the formatting of the PHP slides

Evaluation Dr. Marcus Hollander

Billing criteria for new incentive payments
Dr. Cathy Clelland

Case study – Mr. James Lee
Mr. James Lee is a 74 yr old retired electrician. Has a history of COPD, hypertension and was diagnosed with Prostate cancer 6 yrs ago (at age 68 yrs). Followed by both an urologist and a radiation oncologist and maintained on hormone therapy. His COPD has been managed in a shared care manner with a respirologist. Every fall you have undertaken a review of his COPD Action plan and this has kept him fairly stable. Handouts: GPSC Palliative Care Initiative Billing Guide Palliative Care Related Fees Reference the James Lee Case study in your discussion. 14053 COPD CDM

Office visit Last year, (5 yrs after the original diagnosis) James indicated that he was having pain in his back and shoulder. The radiation oncologist organized radiation for pain relief and coordinated changes in hormone therapy; the radiation relieved the pain initially. 17100 Office Visit

Community patient conferencing
Fax your request to the oncologist and he calls the next day re: some interim management and development of a plan to manage his symptoms. Communicate this info to James by phone. Total GP time for conferencing 20 minutes. 14016 Community Patient Conferencing Example for specialist: 10002 Oncologist billing code (non-urgent up to 1 week) Details of specialist fees in TTT2

Counseling visit for patient
At the next appointment, you discuss the Advance Care Plan and undertake counseling James on the outlook of his prognosis and his related anxieties – 25 min counseling visit. 17120 Office Counselling

Urgent advice James is feeling quite poorly. You decide to urgently consult his respirologist on options for management in the community Respirologist calls you within 20 minutes and you discuss James’ current status 17100 Office Visit 14018 Urgent (<2hr) Telephone advice from Spec/GP with spec training 10001 Respirologist billing code for the urgent telephone advice (GP billing codes: for visit & 14018; Respirologist billing code: for the urgent telephone advice)

Office counseling for family members
You arrange a meeting with the daughter to discuss her concerns. You undertake counseling with her that takes 30 minutes. (GP billing would be for the daughter, who is 40: 00120) 00120 Office Counselling (for daughter)

Daily MRP care, discharge planning fee
When you are not on call, there is a decline: hospital in respiratory failure. He is seen by the respirologist on call in consultation. James remains in hospital 5 days. A 30 minute discharge planning care conference. You providing MRP care daily and he is first patient seen each day; respirologist support. 13008 Hospital acute care visit X 5 (Daily MRP care) 13338 First visit bonus X 5 days 14017 Discharge Planning care conference X 2 units (GP Billing daily MRP care plus first visit bonus X 5 days plus Discharge Planning care conference X 2 units on day 4; Specialist billing consultation plus supportive care X 2 plus Discharge Planning care conference fee GXXXXX on day 4)

Palliative care planning fee
James is now ready for referral to BC Palliative Care Benefits Plan and a Home Care Referral for assessment of the home. Discuss a safety net. Complete BC Palliative Care Benefits Plan referral and the No CPR form. 30 min palliative planning visit. 17100 Office Visit 14063 Palliative Care Planning Fee

Community patient conferencing fee
You contact the Home Care nurse to discuss the likely trajectory and anticipated events. You and the nurse discuss the care plan, agree on channels of communication and ensure the MOA is aware of these priority arrangements. 15 minutes total conferencing time. 14016 Community Patient Conferencing

House call Joint visit with the Home Care Nurse and assess their current goals of care and capacity to remain at home. Following the visit, you and the Home Care Nurse review and revise the plan of management based on input from James and his family – 20 min. 1X200 = 12200, 13200, 15200, 16200, 17200, – out of office age appropriate visit fee for additional patients seen at a house call. Community Patient Conferencing House Call 1X200 Out of office age appropriate visit fee for additional pts seen at house call 190

Support of home care nurse
Home care nurse agrees to call you at least weekly regarding the situation and you decide to visit every couple of weeks. Plans are made for an expected death at home. Advise about patient in community care Home Visit 1X200 Out of office age appropriate visit fee for additional pts seen at house call

Other fees / Terminal care facility visit (depending on patient Dx/condition only regardless if in “palliative bed” or not - acute/LTC/hospice). 00115 Urgent LTC visit 0800 – 2300, 7 days/wk. 00114, +/ Routine long term care visit. 00112, out of office visit Specially called to see in acute care or hospice. 13008/ / Acute care visits. 14015 Facility Patient Conferencing. Terminal care facility visit (depending on patient Dx/condition only regardless if in “palliative bed” or not (acute/LTC/hospice) deemed to be palliative (last six months of life) – billable up to daily for up to 180 days. For services beyond 180 days, bill with e-note outlining reasons for need 13338 First patient seen of the day in facility care for patients bill in addition to 13008/13028/00127 (only 1 per day regardless how many facilities attended) (Nov 1, 2010, 13127/13108/13128 no longer available) Long Term care visit urgent call to see 0800 – days per week. For night bill plus out of office age appropriate visit fee. 00114 Routine Long Term Care visits – billable up to once very two weeks, if more frequent needed, bill with e-note 13334 First patient seen of the day in facility care for patients bill in addition to 00114 (only 1 per day regardless how many facilities attended) (Nov 1, 2010, no longer available) * Specially called to see at home, LTC, acute care or hospice outside 0800 – 2300 any day out of office visit Called in evening (1800 – 2300) but not seen until 2300 – 0800 hr bill out of office visit Specially called to see in acute care or hospice care – weekday (non-STAT) 0800 – 1800 hr 00112 out of office visit called and seen evenings 1800 – 2300 hr out of office visit Called urgently and seen Saturday/Sunday/Stat holidays ( hr) Facility Patient Conferencing Billed when attending a care conference with at least 2 other AHPs, at a facility not including acute care. Bill per 15 minutes or greater portion thereof to max of 4 units on one calendar day and 6 units per calendar year.

Practice Support Program
Dr. Cathy Clelland 193

GPSC and PSP General Practice Services Committee (GPSC) – who, what, why Practice Support Program (PSP) Who, what, why Reimbursement Accreditation – Mainpro C, Mainpro M1 Bi-partite committee between the government and BCMA to address full-service family practice incentives PSP: One of the three major initiatives of GPCS including Incentives; Divisions of Family Practice and the PSP Funded through the 2006 agreement between the government and BCMA Governed by GPSC We are not CME. PSP is about making permanent clinical and administrative changes in your practice. Small changes are tested and results are shared to help each other improve. Collaborative work is based on the concept of trying out small changes “next week” and then refining, testing again, and once you are ready, embedding the change into the practice as a new way of doing things. Small changes are tested on an ongoing basis to reap the benefits of small gains. Results are tested and tracked on an ongoing basis to see what works and what doesn’t. Physicians and MOAs are reimbursed for their time away from their practice; dedicated time to reflect on their practice 194

Train the Trainer sessional payments
Train the Trainer Sessions (2 days) 2 x 1 day (max) GP Session x 4 $ 1,623* MOA 16 hours $320 Action Period (1 period) Session x 2 $812*

Develop office approach
Dr. Douglas McGregor 196

Patient registry and flagging charts
Include terminally ill patients with: Cancer COPD Chronic heart disease Renal failure Neurological conditions Dementia Develop EOL registry from CDM-based one Identify / Communicate / Assess / communicate / Plan / Communicate!! 197

Office procedures Proactive planned recall or house calls near end stage Tools that can help communicate within the office Huddle Sheet Ringed physician specific communication binder EMR Put copies of the form/information toolkit (e.g. No CPR) into examination room Physician - MOA dyad Specific arrangements about how healthcare professional can get through to you

Planning for action period
Judy Huska

Model for Improvement Fundamental questions for improvement
1. What are we trying to accomplish? (Aim) 2. How will we know that a change is an improvement? (Measures) 3. What changes can we make that will result in an improvement? (Tests of change) The Model for Improvement contains three questions that any successful improvement effort must address. 1. The first question “What are we trying to accomplish?” is about creating an aim statement that focuses our improvement work. The aim statement should be measurable, specific, and should require taking the status quo off the table in order to achieve it. 2. The second question “How will we know that a change is an improvement?” requires that the team decide on how it will measure its progress in reaching the aim. For example: you don’t know whether your golf game is improving unless you keep track of the number of strokes per round. 3. The last question, “What changes can we make that will result in an improvement?” helps us consider the set of changes that will lead toward improvement, toward the aim. We are not making change for the sake of change, we need to utilize a set of evidence-based changes that have been shown to be effective in improving the measures?. This question is based on the assumption that all improvement requires change, but not all changes lead to improvement. 17

Moving forward… with measurement
“If it is not measured, it's not medicine.” - Dr. Marshall Dahl “Some is not a number, soon is not a time.” - Dr. Don Berwick “Without data, everyone is perfect.” - Dr. Paul Murray “Data drives improvement.” - Dr. Neil Baker “The pride in which you wallow, without data may be hollow.” - Dr. Dan MacCarthy Here are some inspiring quotes to kick off the discussion of everybody’s favourite topic – measurement. This has been PSP Achilles’, but we’re hoping that with simple new tools, we can embed measurement into BC’s culture. 201 201

Measurement The purpose of measurement is for learning not judgement

Practice aims: What are we trying to accomplish?
The care for patients and families living with, suffer and dying from life limiting and chronic illness can be improved by redesigning primary care practices Early identification and use of palliative approach. Increasing the number of End of Life conversations. Development of collaborative care plans. Increasing use of assessment tools – ESAS and/or Palliative Performance Scale (PPS). Improving physician confidence. Improving patient and family experience. 203

Measures: How will we know that a change is an improvement?
# of patients identified and placed on a registry. % of patients on a registry with a collaborative proactive care plan in place. % of patients on patient registry that have been given My Voice and having an ACP conversation. % of patients on the registry that had an ESAS and or PPS (as appropriate). Connect the measures to the tools and resources e.g. show up the care plan when discussing it. Judy to note these are QI measures. 204

Measures: How will we know that a change is an improvement?
% of GPs and healthcare providers that have an improved experience in caring for patients at End of Life. % of GPs that are confident when engaging patients and their family in conversations about End of Life (1-10 confidence scale). % of patients/caregivers who feel comfortable with their End of Life care plan. % of caregivers who feel supported when caring for patients at End of Life. Judy to note that these are survey questions not to be collected by the RSTs.

Data Tracker and Narrative Report

Better assessment and adequate pain control = Better death
Just try it! Better assessment and adequate pain control = Better death Cycle 3 A P S D DATA Cycle 2 A P S D Cycle 1 Cycle 3: Try appropriate tools (ESAS, PPS and pain diary ) on 5 patients and encourage use of pain diary as needed in the following month. A P S D Use of screening tools Cycle 2: Recall patient A in one week to review pain diary. Was intervention successful? Cycle 1: Try appropriate screening tools (ESAS, PPS) on patient A on Tuesday and encourage use of pain diary to assess effectiveness of intervention.

Where to start: What changes can we make that will result in an improvement?
What are you going to do next Tuesday? What is the plan? Remember to think about how you will measure/track improvement. Record on Action Plan and report back in 15 min. Break out into your assigned groups. Begin to plan what changes you try. Refer to PDSA template: Aim – be specific Measures 3) Plan test of change – Who? what? when? and how? Plan Question(s) to answer Plan to carry out the test of change (who, what, when, where) Plan for measurement (who, what, when, where) Predictions – What do you think will happen? (why) Do Carry out the plan Keep track of what worked and what didn’t Begin analysis of the data Study Complete the analysis of the data Compare data to what you predicted would happen Summarize what was learned Act What changes are to be made? Adopt, adapt, or abandon the change? Plan for your next test of change (next PDSA cycle) Some things to think about as you are planning: Remember Who? What? When? And How? Early identification: Expand registry or decide who will benefit from palliative approach Improve Communication: GPs and other health professionals try collaborative care approach for 3 – 5 patients End of life discussion Advance Care Plan: try it on 3-5 patients Use of community resources: GPs try optimum referral process to non-palliative specialist with 1 patient in local community Pain/symptom diary on a couple of patients (1-2) Edmonton Symptom Scale on a couple of patients (1-2) Look back at charts: Better planned death? Remember to track measures for improvement Have teams report back in 15 min Pick one person from each table to report out Coordinator documents each teams PDSA on a flip chart or action plan Your coordinator will support you throughout the Action Period

Action period expectations
Try tests of change. Measure and track your progress. RSTs may want to schedule practice visits with GPs 2nd week of January. Participate in monthly teleconferences in January and February – Report back on completed PDSA templates and Data Tracker and Narrative Report. During your discussion, outline how the action plan, data tracking sheet, and PDSA cycle template. Identify patients early : Registry development End of life discussion Collaborative visit with HCC Advanced care planning Use of tools – ESAS and PPS Identify community resources Referral to specialty or community resource Support throughout the action period you can expect: Practice visits from the coordinator. 209

Next steps Dr. Cathy Clelland

Training material will be available at pspbc.ca
Next steps Recruit Specialists Respirology Nephrology Cardiology Neurology Action Period activities EOL TTT2 - March 3, 2011 Evaluation Form CME Credits Anaesthesiology Gastroenterology Physical Medicine Emergency Medicine Training material will be available at pspbc.ca 211

Thank you! 212

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