1. Practice Support Program
End of Life
Learning Session 3

2. Acknowledgements
End of Life Practice Support Program Committees: Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr. Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr. Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr. Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher, Pat Porterfield, Della Roberts, Christina Southey
BC Hospice Palliative Care Association Learning Centre for Palliative Care: Hospice Palliative End-of- Life Primary Care Provider Education Project
Fraser Health End of Life Care Program: Advance Care Planning initiative
Gold Standards Framework (
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

3. Welcome back 3

4. Patient/Family/Community’s voice
(10 minutes) 4

5. Report back
(60 minutes) 5

6. PSP Storyboard template for End of Life
Team Name:___________
Date:___________ 6

7. Team members – Team picture
List team members and roles 7

8. Our team aim An aim template for team:
We aim to improve _________(name of process or topic) in _____(location) so that _______ (a numerical goal), by ________ (time period) 8

9. Measures: Sample # of pts identified and placed on a registry
Practice Key Measures
Target
Baseline
Current results
# of pts identified and placed on a registry
% of pts on the registry that had an ESAS and or PPS (as appropriate)
% patient on registry who have been given My Voice (or other) and had an ACP conversation
% of patients on a registry with a collaborative proactive care plan in place
Additional practice measures (only if additional measures used)
Add your practice measures here – this is just a sample 9

10. What did we do? Summary of what you did
(if you tested multiple changes in the action period pick your top 1 or 2 to share)
Focus areas for action period
Identify patients early : Registry development
Identifying and collaborating with local team members
Initial discussion with 3-5 patient around end of life
Expand the MOA role in screening
Identify community resources
Referral to specialty or community resource 10 10

11. Study What did you learn?
Did things change from baseline in your measures? 11 11

12. Graphs 12 12

13. Patient story 13

14. Provider story 14

15. Summary of current status
Successes:
Challenges and/or barriers:
What we are planning to test next: 15

16. All teams share! Round table sharing
Encourage practices to talk about barriers and how they over came them as well as successes.

17. End-of-life symptom management & addressing the question of hydration
(20 minutes)
Based on materials from:
Mark Turris RN, MSN, CHPCN (C), “Symptom Management in the Last Days to Hours of Life”, Vancouver Home Hospice Consult Team
Pat Porterfield, Presentation on “Food & Fluids”, Victoria Hospice Medical Care of the Dying Course
Fraser Health Hospice Palliative Care Symptom Guidelines 17

18. Physical symptoms experienced at end-of-life
Pain
Shortness of Breath
Nausea & Vomiting
Agitation
These symptoms need to continue to be addressed, even at the very end of life

19. Physical symptoms/changes experienced at end-of-life (continued)
5. Fatigue
6. Sleepiness
7. Inability to Swallow
8. Loss of appetite
9. Dehydration
10.Incontinence
11.Confusion
Whereas these symptoms need to be assessed & may require intervention earlier in the illness, within the last days of life, these symptoms become anticipated changes and education for family will be the most appropriate intervention.

20. Actively Dying In the context of a progressive life-threatening illness
Low level of consciousness – sleep with occasional periods of alertness or sleeping continuously
Changes in breathing patterns – apnea, rapid shallow breathing, Cheyne-stokes, &/or moist respirations (respiratory congestion)
3. Incontinence of urine &/or feces
4. Color & temperature changes – cyanosed nail beds, pallor (face), coolness of extremities
In addition to the previous symptoms/changes, these physical changes can be anticipated as part of actively dying.

21. Managing pain at End of Life
Most common is use of sc meds, either continuation of previous opioid or initiation of low dose of hydromorphone or morphine
Transdermal meds can be continued, but usually available in too high a dose to initiate at this time
Sublingual & sub-buccal
Pain needs to be managed; when pt’s unresponsive, need to differentiate pain from “startle” at touch or low, gentle moaning.

22. Normal respiratory changes
Mouth breathing, therefore dry mouth
Provide mouth care with a soft tooth brush and water, plus non-petroleum gel to lips with turns or care

23. Respiratory congestion
Respiratory secretions – avoid unnecessary fluids or deep suctioning
Gurgly respirations – saliva over vocal chords
Glycopyrrolate mg sc q6-8h regularly; doesn’t cross Blood Brain Barrier
Atropine eye drops s/l or mg sc q4h regularly & prn
Scopolamine sc mg q4-6 h reg & prn

24. Dyspnea “ Opioids, Opioids, Opioids “
Likely work through opioid receptor, same as for pain
Often very low doses help, i.e. Hydromorphone 0.5mg s.c. q4h regularly and 0.1 mg q 30 min prn
Poor evidence for inhaled opioids
Dyspnea management: reinforce that opioids will reduce respiratory rate but used appropriately do not cause respiratory depression, are safe in advanced cardio-respiratory disease and do not hasten death. Encourage providers to also be sure to explain this to families as they still have a lot of myths about these meds.

25. Dyspnea (continued)
Nozinan: starting dose 2.5 to 5 mg q8h and titrate to effect. Start low to test tolerance as wide variation in patient response. Elderly patients generally respond better to nozinan than benzodiazepines.
Benzodiazepines: Lorazepam 1-2mg q4h sl/sc, midazolam intermittently or csci 1-4 mg/hr for for severe dyspnea & anxiety
Non-drug measures – fan, open window
Oxygen-if available, esp. if pt known to be hypoxic & oxygen has assisted in the past, and if does not increase restlessness; in imminently dying phase, do not monitor O2 sats & may remove O2 as death approaches & dyspnea no longer a concern

26. Terminal restlessness
Pt. unconscious and moving about in bed
Common - usually multifactorial – system failure, infections, pain, full bladder, etc.
Rule out any physical causes such as: pain, urinary retention, or constipation.
If all physical causes ruled out – may be psychological/existential
If cannot be reversed, needs to be treated pharmacologically

27. Terminal restlessness (continued)
Neuroleptics first choice for restlessness & agitation
Nozinan (methotrimeprazine) mg sc q4-8h and titrate,
Haloperidol mg sc q4-8 h
Benzodiazepines: lorazepam 1-2 mg sl/sc q4h prn on an adjunct basis – a Midazolam continuous sc infusion 1-4 mg/hr via CADD Pump for severe restlessness/agitation

28. Food & fluids at end of life
Useful questions to ask in assessing withdrawal from food & fluids during the illness:
Is the reduction in intake appropriate to the phase of the illness? Cancer treatment or palliation? Importance of performance status. Consider cachexia/anorexia syndrome
Is the patient’s mood/relationship with significant others normal?
Is the patient satisfied with their ability to eat and drink? If focus is palliation, this is most important.

29. Fluids within the terminal phase
Preference for oral sips and good mouth care
If concern re the need for hydration in other forms such as hypodermoclysis or IV, discuss family’s understanding & expectations:
withdrawing from food and fluid is a common aspect of the dying process
parenteral therapy is not nutrition
reduced food/fluid is not uncomfortable
thirst can be addressed with good mouth care; hydration does not prevent thirst

30. Burdens of hydration
Increased fluid can contribute to symptoms such as edema, ascites, resp. congestion, nausea & vomiting
Complexity and discomfort associated with administering fluids may increase agitation and create a need for restraint (chemical or physical)
May affect where the patient dies
Increased need to void
Dehydration may act as a natural anesthetic
May prolong suffering/dying rather than living

31. Benefits of hydration
Reduces cognitive impairment; may improve delirium/terminal agitation at the end of life esp. if related to neurotoxicity, hypercalcemia
May prolong dying/survival (which can be seen as helpful if pt/family waiting for an event etc.)
May fulfill pt/family expectations
Can be initiated as a trial

32. Resources for family to help with understanding the dying process
Patient education materials such as
Booklet: Preparing for the death of a loved one
Caregiver’s resources
Virtual Hospice website
“When death is near” article

33. GPAC Palliative Care Part III: Grief and Bereavement
(25 minutes) 33

34. 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.” 34 34

35. 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/reminisce 35

36. 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.
ANTICIPATION is essential
Patients and families may not have done this before – you need to “set the stage” for them. 36 36

37. Explaining the dying phase and preparing the family..
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 hemorrhage—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) 37

38. 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. 38

39. End of Life care check list for likely home death
Points to consider when patients enter the dying phase:
Reconfirm a patient's goals of care, preferred place of care, what to do in an emergency.
Connect with home nursing (already in place)
Ensure that required forms are completed (No CPR and/or Notification of Expected 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 39 39

40. 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). 40

41. Useful websites
When a home death is preferred:
Access your local Home Health service/palliative care providers and discuss an urgent referral. Information:
Completion of community based No CPR form: Includes
Room to document plan for time of death (No 911).
cas/302.1fil.pdf
Completion of the Notification of Expected Death form to clarify pronouncement of death and final disposition.
pected_death.pdf
When a home death is preferred: 41

42. If home death not an option………
Identify alternatives in your area.
If 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 42

43. At the time of death Management of terminal symptoms.
Support, with all team members, including spiritual care
Acceptance of dying as a normal process.
Acknowledge the death
Patient/family as the unit of care.
Effective communication
Check with family about all practical aspects
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 43

44. 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 44 44

45. Supporting grief and bereavement45

46. 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. 46

47. 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 unforgiving 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 understandable 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 anticipatory 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, avoided 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 47 47

48. 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. 48 48

49. Understanding normal grief and how to support it (continued)
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 49

50. Communication strategies to support grieving
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?” 50

51. Key phrases “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?” 51

52. 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 52

53. 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. 53 53

54. 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? 54

55. 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. 55

56. Billing criteria for new incentive payments
(10 minutes)

57. 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 57

58. 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 58

59. 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 59

60. 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 60

61. 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) 61

62. 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) 62

63. 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.
(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)
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 63

64. 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 64

65. 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 65

66. 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 66 66

67. 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 67

68. 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. 68

69. Continuing the improvements in your local community
(30 minutes)

70. You’ve had a head start!
The involvement of families and community members in your improvement work will help you sustain
More partners in care
Accountability and encouragement from team mates
Maximizing community and family support
The good news is that practice team involved in this module have had a head start because of your community approach to care.
This helps by:
Having more partners in caring for patients and their families to insure best practice care is being provided in a patient centered way
Team mates to keep you accountable and encourage you to keep going with improvements
Using the ability and willingness of patients and families to be partners in their care 70

71. We can all work as one to continue improving changes in our practice and community!
As we talk about sustainability of your changes, think about how you as a team can sustain the changes you have made. 71

72. Table Discussion
With your community team discuss what you would like to improve in the practice and community, is it:
A specific change?
A measured outcome from your efforts?
An underlying culture of improvement?
Relationships established in the community?
A combination?
(20 min)
Before you focus on specific strategies to sustain your changes over time, you need to be clear on what it is you are trying to sustain. You may be trying to sustain:
A specific change you implemented
An outcome you have achieved through your work
An underlying positive culture and attitude towards improvement
Relationships you have established that contribute to your success now and into the future
Or a combination of these
In your team, discuss what your group would like to sustain.
Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation and Improvement, 2007 72

73. Sustainability of Clinical Redesign in Your Practice!!
(20 minutes)

74. What are you trying to sustain
With your community team discuss what you would like to sustain in the practice and community, is it:
A specific change?
A measured outcome from your efforts?
An underlying culture of improvement?
Relationships established in the community?
A combination?
Before you focus on specific strategies to sustain your changes over time, you need to be clear on what it is you are trying to sustain. You may be trying to sustain:
A specific change you implemented
An outcome you have achieved through your work
An underlying positive culture and attitude towards improvement
Relationships you have established that contribute to your success now and into the future
Or a combination of these
In your team, discuss what your group would like to sustain.
Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation and Improvement, 2007 74

75. Strategies to sustain the changes
Be clear about the benefits (use measurement)
Establish and document standard processes and have a plan for ongoing training
Establish an ongoing measurement processes
Make changes to job descriptions and policies and procedures to reflect change
Celebrate success!
Some strategies for holding the gains once initial improvements have been made (tested and implemented):
1. To work towards sustaining a change long term patients, staff and providers need to be clear what the benefits are in terms of patient care, workplace satisfaction, and personal practice. Using measurement to show the improvements will help to support the change. When each stakeholder can explain ‘what’s in it for me’ the change is more likely to sustain.
2. The permanence of the change should not depend on specific people, but should become embedded in the work processes. One of the ways to do this is to establish and document standard processes, so that even if there are staff changes everyone will know what the new process is and be able to follow it. Additionally, a plan for training new employees will help to ensure that the new responsibilities and new processes are understood and carried out correctly, and ensues continuity in practice over time.
3. Data collection continues so that the practice has information about whether the gains are being maintained. It may be that the data collection schedule can be reduced, with data collection occurring less frequently or with a smaller sample. The objective here is to monitor the new system, and guide improvements as they are tested and implemented.
4. One suggestion for embedding the change and making it permanent is to review job descriptions so that new personnel will know immediately what is involved in their responsibilities. Additionally, make sure that any documentations of policies and procedures reflect any change in process.
5. It is important to celebrate when an achievement has been reached, but also important to celebrate when that achievement has been sustained for a period of time. Keep focus and energy up by celebrating with your team your continued best practice and reminding yourselves of the good work you have done.
Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation and Improvement, 2007 75

76. Predictors of sustainability
Staff, providers and patients can describe why they like the change and it’s impact
Providers and staff are confident and can assist in explaining to others
Job descriptions reflect new roles
Measurement is part of the practice and used to monitor progress
The change is no longer ‘new’, but ‘the way we do things around here’
Once you have made some changes towards sustaining your gains, how will you know that your work is paying off? There are some simple ways to tell if your change is more likely to sustain over time.
When you ask staff, providers and patients about the changes you have made they will be able to describe to you why the change is a good one and the impact it will have on both patient care and staff/provider experience in the clinic.
Providers and staff are confident that they could explain the new way of working to others and help to train new staff or providers.
Any effected job description has been changed to reflect changes in roles
Measurement is ongoing even after the change has been implemented. The measures are reviewed regularly to monitor progress and any changes indicating a loss in gains results in a correction.
People effected by the change do not describe it as ‘new’ or ‘being tested’ but accept it as the ‘new way of working’.
Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation and Improvement, 2007 76

77. Table discussion: Sustainability activity
At your table, develop a plan for increasing the probability of sustaining your improvement work
Use one or more of the strategies outlined in the previous slide, or come up with others
Share your ideas with the group
(10 min)
(Use the blank PDSA form)
At your table, develop a plan for sustainability of your improvement work
Use one or more of the strategies outlined in the previous slide
Be prepared to share your ideas with the group
Answer the questions:
What are you trying to sustain?
How will you know that your efforts are being sustained?
What changes will you try that will increase in chances of sustaining your changes? 77

78. This is just the beginning!
What would you like to achieve in the coming months?
How will you know that you’ve achieved it?
What small change can you make in the near future that will make further improvements?
This is the end of your first foray into improving your practice. Continuous improvement relies on always finding the answer to the following questions:
What would you like to achieve?
How will you know that you’ve achieved it?
What small change can you make in the near future that will make an improvement?
(Note: end with a real life example (story) of the impact that improved access can make on patient care) 78

79. Next steps … Ongoing support Informal meeting and calls 79
(3, 6, 12 months) - to help you sustain changes already made and continue to make improvements
Informal meeting & calls - to share new experiences and discoveries
Session evaluation
Compensation forms 79

80. Thank you! 80