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

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Presentation on theme: "1 End of Life Train the Trainer 1 Westin Wall Centre Hotel December 9, 2010."— Presentation transcript:

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

2 2 Acknowledgements: –BCHPCA Learning Centre for Palliative Care –Fraser Health – Advance Care Planning Introduction

3 3 Session opening Dr. Cathy Clelland

4 4 Session opening Introductions Agenda for today’s session

5 5 Case study: Mr. James Lee and his wife

6 6 Integrated primary and community care: Towards interdisciplinary End of Life practice with GPs and MOAs Katie Hill

7 7 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.

8 8 Working with population needs

9 9 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 4 2009 schema: March 4, 2010 (ICD10: A00 to R99)

10 10 Why a population approach?

11 11 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

12 12 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

13 13 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.

14 14 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.

15 15 Questions?

16 16 Module aims Dr. Cathy Clelland

17 17 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.

18 18 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”

19 19 Patient/family’s voice Brian Deakin

20 20 Palliative approach to life-limiting illness Dr. Doris Barwich

21 21 Type of deaths in Canada

22 22 Schematic depiction of comprehensive heart failure care Goodlin, S. J. J.A.C.C. 2009;54:386-396 Copyright ©2009

23 23 Function Death High Low Begin to use hospital more often, self-care more difficult Time ~ 2-5 years. Death usually seems “sudden” Modified from Lunney JR et al. JAMA 2003: 289: 2387. Terminal Phase Heart failure

24 24 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. Changing face of dying

25 25 EOL trajectories 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. Well Unwell Time Cancer: Short period of decline Organ failure (Heart, lung, kidney): Slow decline with intermittent acute episodes

26 26 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 50-50 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)

27 27 Cannot wait for a ‘sign’ …

28 28 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.

29 29 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? Table discussion (continued)

30 30 Philosophy of care Dr. Doris Barwich

31 31 Canadian Hospice Palliative Care Association model of care (2002) Bereavement Care Illness trajectory Diagnosis of life-limiting illness Death Disease-modifying therapy Palliative Approach to Care

32 32 Palliative care dimensions Guided by person centered goals of care: 1.Pain and symptom management. 2.Psychosocial care for person. 3.Psychosocial care for family. 4.Spiritual care. 5.Disease management. 6.Preparing for and managing dying. 7.Bereavement. (Canadian Hospice Palliative Care Association: Norms, 2002)

33 33 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.

34 34 Goals Quality of living in the context of a life-threatening illness. Quality of dying in the midst of life.

35 35 Transitions in life-limiting illness Transitions Early Disease containment Maintaining function Decompensation Experiencing life limiting illness Decline and terminal Transitions Dependency and symptoms increase Transitions Death and bereavement Time Time of Diagnosis McGregor and Porterfield 2009

36 36 Collaborative interdisciplinary approach Palliative Care Australia

37 37 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

38 38 Integrating the palliative approach to care

39 39 Improved quality of life

40 40 Improved survival

41 41 “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 9 2009:480-488 Outcomes of the palliative approach

42 42 BC

43 43 Identification of patients who may benefit from palliative care Dr. Douglas McGregor

44 44 UK Gold Standard Framework

45 45 Identify patients: Gold Standard Framework triggers Three triggers for supportive/palliative care: 1.The surprise question: “Would you be surprised if this patient were to die in the next year? 2.Choice/need: patient makes a choice for comfort care only, or is in special need of supportive/palliative care. 3.Specific indicators: clinical indicators for each of 3 main EOL groups (cancer, organ failure, frail elderly/dementia).

46 46 Identify: Sentinel events

47 47 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?”

48 48 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).

49 49 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.

50 50 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

51 51 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.

52 Who would benefit from a palliative approach?

53 53 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.

54 54 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. Identification: Table discussion

55 55 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.

56 56 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.

57 57 What have we learned? 1.Everyone can seek to identify. 2.Tools are available to support identification –Surprise question (intuitive awareness of transition). –Choice (readiness of patient). –Clinical indicators (Functional/Prognostic signs). 3.Tools are available to support identification. Identification: Pearls

58 58 Break

59 59 Assessment Dr. Doris Barwich

60 60 Assessment


62 62 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.

63 63 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.

64 64 Assessment: Domains of care 1.Pain and symptom management. 2.Psychosocial care for person. 3.Psychosocial care for family. 4.Spiritual care. 5.Disease management. 6.Preparing for and managing dying. 7.Bereavement. (Canadian Hospice Palliative Care Association)

65 65 “Distress screening” 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. Edmonton Symptom Assessment Scale (ESAS)

66 66 Edmonton Symptom Assessment System

67 67 Assess: OPQRSTUV and physical exam Onset Provoking/palliating factors Quality Region/Radiation Severity Treatment Understanding/ Impact Values /Goals of Care

68 68 Patient assessment: Pain and symptom diary

69 69 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

70 70 From Frail Elderly Guidelines. To be completed by the patient. Functional assessment: Seniors Assessment Tool

71 71 Ambulation Activity andSelf-CareIntakeConscious Evidence of DiseaseLevel Death x x x x Totally bed Unable to do any activity Total careMouthDrowsy or coma bound Extensive disease care only +/- confusionPPS100% 90% 60% 50% 40% 30% 20% 10% 0% 70% 80% FullNormal activity and workFullNormalFull No evidence of disease FullNormal activity and workFullNormalFull Some evidence of disease FullNormal activity with effortFullNormal or Full Some evidence of disease Reduced Reduced Unable to do normal job/workFullNormal orFull Significant diseasereduced Reduced Unable hobby/houseworkOccasional Normal orFull Significant diseaseassistance neces.reducedor confusion Mainly sit/lie Unable to do any workConsiderable Normal orFull Extensive diseaseassistance req’dreducedor confusion Mainly in bed Unable to do most activity Mainly needsNormal orFull or drowsy Extensive disease assistancereduced+/- confusion 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 careMinimal toFull or drowsy bound Extensive disease sips+/- confusion Palliative Performance Scale V2 Palliative Performance Scale (PPS)

72 72 Assess: Needs of the family/caregivers

73 73 Assess: Additional need for support/referral ? 24/7 support. ?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.

74 74 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.

75 75 GP communication Dr. Romayne Gallagher

76 76 Critical importance of communication Six key components (in order): 1.Talking with patients in an honest and straightforward way. 2.Willing to talk about dying: Not abandoning/avoiding the dying patient. 3.Giving bad news in a sensitive way: Balancing being realistic with maintaining hope. 4.Listening to patients. 5.Encouraging questions. 6.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: 868-874; Curtis, J Gen Intern Med 2000; 16:41

77 77 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.

78 78 Video of dying young mom

79 79 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.

80 80 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.

81 81 Video of patient with dementia

82 82 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. ACP: Process and intervention

83 83 Who makes your healthcare decisions? 1.Capable adult (19 yrs). 2.Committee of person (court ordered). 3.Representative (representative agreement). 4.Temporary Substitute Decision Maker* (TSDM). a)Spouse (common law, including same sex) b)Adult children (equally ranked) c)Parent (equally ranked) d)Brother or sister (equally ranked) e)Another relative by birth or adoption f)Another person appointed by PGT *Capable, 19 years or older, no conflict, contact within 12 months, agrees to decide based on your wishes

84 84 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..?”

85 85 Video of failing older man

86 86 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?”

87 87 Patient wishes An Advance Care Plan ensures that the patient's wishes would be listened to no matter who is present. NG.pdf NG.pdf What if patient wishes are not medically appropriate?

88 88 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.

89 89 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?

90 90 Barriers to conversation

91 91 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.

92 92 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”.

93 93 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

94 94 End of Life MOA role Pat Porterfield, Josefa Kontogiannis

95 95

96 96 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.

97 97 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 Huddles, pertaining to overall plan Patient specific huddles Processes Billing Office methodology

98 98 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?

99 99 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.

100 100 Registry What is it? A list A database What is it used for? Tracking Maintaining Follow up What types are there? Paper list Excel spreadsheet Binder Flagged chart

101 101 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.

102 102 Assessment Using the assessment tools: Palliative Performance Scale (PPS) ESAS: Screening for Distress –When? –How? Pain and Symptom Diary Seniors Assessment Tool

103 103 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.

104 104 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.

105 105 Websites to obtain important forms BC Palliative Care Benefits Program application form Employment Insurance Compassionate Care Benefits ssionate.pdf Notification of Expected Death

106 106 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?

107 107 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.

108 108 Planning: What needs to happen next? Dr. Doris Barwich

109 109 Planning: What needs to happen next?


111 111 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.

112 112 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. Care plans

113 113 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

114 114 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.

115 115 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

116 116 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). care care

117 117 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.

118 118 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

119 119 Address issues related to functional decline Exercise. Equipment and supply needs. Falls prevention. Financial concerns. Caregiver burden and support needs.

120 120 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. BC Palliative Care Benefits Program

121 121 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.

122 122 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.

123 123 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.

124 124 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).

125 125 Getting the help you need from the team Della Roberts

126 126 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

127 127 Transitions in life-limiting illness Transitions Early Disease containment Maintaining function Decompensation Experiencing life limiting illness Decline and terminal Transitions Dependency and symptoms increase Transitions Death and bereavement Time Time of diagnosis McGregor and Porterfield 2009

128 128 Spectrum of collaboration –Parallel practice –Consultation/referral –Co-provision of care

129 129 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.

130 130 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.

131 131 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.

132 132 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.

133 133 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.

134 134 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.

135 135 Transition 4 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

136 136 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?

137 137 Collaborative practice: Table discussion Identify one aspect of care that you will do differently in your practice and when

138 138 How to support patient and family Dr. Douglas McGregor

139 139 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 survivingfamily.

140 140 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.

141 141 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.”

142 142 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.

143 143 Challenges of ensuring high quality care at the end stages What might some of the “issues” be in relation to the patient?

144 144 Challenges of ensuring high quality care at the end stages What might some of the family’s issues be?

145 145 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.

146 146 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”.

147 147 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.

148 148 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). End of Life care check list (continued)

149 149 Can the family do this? Practically? –Elderly couple. –Singles. –Confusion/ incontinence/costs. Psychologically? –Mental health or addiction issues. –Out of keeping with family’s expected role or usual activity.

150 150 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).

151 151 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?

152 152 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

153 153 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.

154 154 Preparations for death (continued) 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.

155 155 Preparations for death (continued) ?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.

156 156 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.

157 157 Supporting grief and bereavement

158 158 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.

159 159 Classes of grief Typical (Normal) Anticipatory Complicated Disenfranchised Unresolved

160 160 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?

161 161

162 162 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.

163 163 Resilience “The capacity to bounce back, to withstand harm to yourself” Insight Independence Relationships Initiative Creativity Humour Morality

164 164 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

165 165 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?”

166 166 “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?” Key phrases (continued)

167 167 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

168 168 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.

169 169 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.

170 170 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 4 - 6 weeks. Another at 6 months.

171 171 Grief versus depression FeelingGrief 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 directedAbsence of external anger, Internally directed Sadnessweeping 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

172 172 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.

173 173 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.

174 174 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.

175 175 Physician Health Program Dr. Andrew Clarke

176 176

177 177

178 178 Break

179 179 Evaluation Dr. Marcus Hollander

180 180 Billing criteria for new incentive payments Dr. Cathy Clelland

181 181 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. 14053 COPD CDM

182 182 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

183 183 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)

184 184 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

185 185 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 17100Office Visit 14018 Urgent (<2hr) Telephone advice from Spec/GP with spec training 10001 Respirologist billing code for the urgent telephone advice

186 186 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. 00120 Office Counselling (for daughter)

187 187 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

188 188 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

189 189 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

190 190 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. 14016 Community Patient Conferencing 00103 House Call 1X200 Out of office age appropriate visit fee for additional pts seen at house call

191 191 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. 13005 Advise about patient in community care 00103 Home Visit 1X200 Out of office age appropriate visit fee for additional pts seen at house call

192 192 Other fees 00127 +/- 13338 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, +/- 13334 Routine long term care visit. 00112, 01200-2 + out of office visit Specially called to see in acute care or hospice. 13008/13028 +/- 13338 Acute care visits. 14015 Facility Patient Conferencing.

193 193 Practice Support Program Dr. Cathy Clelland

194 194 GPSC and PSP General Practice Services Committee (GPSC) – who, what, why Practice Support Program (PSP) –Who, what, why –Reimbursement –Accreditation – Mainpro C, Mainpro M1

195 195 Train the Trainer sessional payments 2 x 1 day (max)GPSession x 4 $ 1,623* MOA16 hours$320 Session x 2$812* Action Period (1 period) Train the Trainer Sessions (2 days)

196 196 Develop office approach Dr. Douglas McGregor

197 197 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

198 198 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

199 199 Planning for action period Judy Huska

200 200 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)

201 201 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

202 202 Measurement The purpose of measurement is for learning not judgement

203 203 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.

204 204 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).

205 % 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. Measures: How will we know that a change is an improvement?

206 206 Data Tracker and Narrative Report

207 207 Just try it! Use of screening tools Better assessment and adequate pain control = Better death AP SD DATA Cycle 1: Try appropriate screening tools (ESAS, PPS) on patient A on Tuesday and encourage use of pain diary to assess effectiveness of intervention. 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. Cycle 1 Cycle 2 Cycle 3 Cycle 2: Recall patient A in one week to review pain diary. Was intervention successful? AP SD AP SD

208 208 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.

209 209 Action period expectations Try tests of change. Measure and track your progress. RSTs may want to schedule practice visits with GPs 2 nd week of January. Participate in monthly teleconferences in January and February – Report back on completed PDSA templates and Data Tracker and Narrative Report. Support throughout the action period you can expect: Practice visits from the coordinator.

210 210 Next steps Dr. Cathy Clelland

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

212 212 Thank you!

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