1. Practice Support Program End of Life
Learning Session 1

2. Ambiguous dying “There will not be a distinct terminal phase.
The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of us with advanced heart failure,
we will have had a chance to live for six months on the day before we died”
Joanne Lynn: Sick to Death and Not Going to Take it Anymore (2004)
this slide sets the tone. repeated later with more content.

3. Agenda <as per your timing>
<note: slides with an are optional> O

4. How is a collaborative different than CME?
Action-oriented: try what you learn – “What are you going to do next week?”
Test and implement in small populations, then spread to the larger population
Discussion with colleagues

5. Learning Sessions and Action Periods
LS LS LS3
AP AP2

6. PSP physician payments
Module
# of Sessions
Total Payment
Learning Session 1
MOA salary replacement 1
4 $20/hr $ $
Action Period 1 2 $
Learning Session 2 $ $
Action Period 2
1.5 $
Learning Session 3
$ 2,890.77

7. Module aims

8. Module aims
Improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:
Early Identification (Registry Building)
Enhance and Improve physician confidence related to End of Life care (e.g. care planning, forms, communication, resources)
Improve Collaboration (clarity of roles, appropriate resource referrals, network of community resources, etc)
Improve the experience of the patient, family, physician, MOA and healthcare providers in End of Life care.

9. Module aims
Improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:
Early Identification (Registry Building)
Enhance and Improve physician confidence related to End of Life care (e.g. care planning, forms, communication, resources)
Improve Collaboration (clarity of roles, appropriate resource referrals, network of community resources, etc)
Improve the experience of the patient, family, physician, MOA and healthcare providers in End of Life care.

10. Module aims
To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:
Improving collaboration:
Identifying and referring appropriate patients to specialty palliative care and others for consultation and services.
Understanding provider needs, clarifying roles, tools and resources for practice support and collaboration.
Improving collaborative care planning, coordination and communication with patients/caregivers and physicians and other local health care and community providers.
“Integration
in Action” 10

11. End of Life Regional PSP Outline

12. PSP End of Life Care Algorithm

13. The patient and family voice

14. End of Life Care: Expanding the scope
Purpose of Expanding the scope section
Palliative intervention should occur earlier and beyond just those dying with Cancer.
Most GPs will identify with strong skills in Palliative care management for those dying with cancer, however, we are making the case this intervention should occur much earlier for patients with less predictable end of life trajectories.

15. Changing the face of dying
We are living longer.
By 2025:
30% of the population >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 20% of us will die with a recognizable terminal (“palliative”) phase.
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009.
The face of dying is changing and we need to adapt our processes of care to respond to this change.
We are living longer. As a consequence more people are dying from chronic rather than acute diseases.
Only 1/5 of us will die with a recognizable terminal phase
2/3 will die with 2 or more chronic diseases after months or years in state of “vulnerable frailty” – enduring several symptoms complexes for many years
By 2020: Increase of 33% more deaths from 2004
Lynn, Joanne. (2005). Living Long in Fragile Health: The new demographics shape End of Life care. Improving End of Life Care: Why has it Been so Difficult Hastings Center Report Special Report. 35(6): S

16. Cause of deaths in Canada

17. O
There are also different “trajectories” of dying. If we look at the 3 predominant disease groups – Cancer, organ failure and frailty – they have different typical trajectories of decline and timing of death.
Cancer typically has a path of long maintenance of good function with a time of weeks or months of rapid decline as the illness becomes overwhelming and leads to death. There are markers that enable clinicians to determine prognosis. This is the trajectory that palliative care programs were developed based upon but if we wait for a sign then we will miss 80% of deaths.
The trajectory of organ failure such as heart and lung disease is different. The course is more typical of slow decline in physical capacities punctuated by serious exacerbations, with death often coming rather suddenly. If patients survive an episode, they may well return home without much worsening of their everyday limitations. But at some point, rescue attempts fail and death may appear to be “sudden’ or unexpected.
Long term dwindling function needing years of personal care is the typical path of frailty and dementia. Dying often follows a physiological challenge that would have been managed well earlier in life – such as influenza, pneumonia, or a hip fracture or may come after long term decline and dwindling away from cachexia and dehydration.
Strategies to support the different trajectories of illness also need different emphasis. Symptom management and palliative care support strategies developed over the past 40 years have focused mainly on cancer patients and on identifying when someone is entering the “ palliative phase” of their illness. As a result those dying from chronic illnesses have often not received palliative care or support for End of Life needs. Yet 3 of 4 deaths in developed countries are caused by diseases other than cancer.
So using the cancer model of identifying when someone is certain to be in the last months of life, or ‘palliative’ does not work well for those with diseases of organ failure. If you’re waiting for someone to become “palliative” you will miss 80% of your deaths.
Lynn, Joanne. (2005). Living Long in Fragile Health: The new demographics shape End of Life care. Improving End of Life Care: Why has it Been so Difficult Hastings Center Report Special Report. 35(6): S

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

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

20. any questions from the group.

21. The Palliative Approach to life-limiting illness

22. Diagnosis of life-limiting illness
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
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009.
In Canada the CHPCA through a consensus process identified a model of care and standards and norms for the care of patients and families living with a life threatening illness in a document published in 2002.
Palliative approach as an integral part of care from time of diagnosis and through to death and bereavement.
Traditionally applied primarily to cancer patients. NOW expanding to all diseases…
Palliative Care IS NOT a program but an approach even for those with Chronic diseases as an approach to care which …
Is appropriate for any person and family living with a life-threatening illness
Affirms life and regards dying as a normal process
Focuses on the person and the family as the unit of care
Involves the patient in setting goals and determining individual choices for care
Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care: Based on National Principles and Norms of Practice. Figure #7 and #10.

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

24. Palliative Approach Guided by person centered goals of care:
Pain and symptom management.
Psychosocial care for person.
Psychosocial care for family.
Spiritual care.
Disease management.
Preparing for and managing dying.
Bereavement.
(Canadian Hospice Palliative Care Association: Norms, 2002)

25. Palliative Approach: Care through all the transitions
Time of Diagnosis
Decompensation
experiencing life limiting
illness
Decline and last days
Dependency and symptoms increase
Death and bereavement
Transition 1
Transition 5
Transition 4
Transition 3
Transition 2
Early
Chronic Disease Management
Survivorship
Seniors at risk
Disease advancement
This continues from expanding the scope – and will describe an approach with 4 transitions.
The traditional approach is focused on Transitions 4 and 5 (ie. The medical / symptom management of death). Whereas this approach is more comprehensive and provides a broader approach to end of life care in that it encompasses transitions 1, 2 and 3 (Early identification, registry building, and advanced care planning).
We need to make the case for early intervention.
Patient Journey
McGregor and Porterfield 2011

26. Best practice: Collaborative and interdisciplinary
Palliative Care Australia

27. Evidence for an expanded scope of the Palliative Approach to care in family and specialty practice?

28. Study design/Measures
151 participants (patients recently diagnosed with metastatic non-small-cell lung cancer) were randomly divided into either an early palliative care cohort or a standard care cohort
The study examined…
Quality of life
Mood
Survival

29. Improved quality of life
The three quality of life assessment scales used were
1) the Functional Assessment of Cancer Therapy-Lung (FACT-L) which ranges from and in which higher scores indicate a better quality of life. The graph demonstrates the median change between the two groups (the bands represent confidence intervals).
2) The Lung Cancer Subscale (LCS) ranges from 0 to 28 with higher scores indicating fewer symptoms. Again, the median change is represented on the graph
3) The Trial Outcome Index (TOI) Sum of scores of the LCS and the physical well being and functional well being subscales of the FACT-L. A statistically significant between groups difference was demonstrated on this scale.

30. Improved mood O Three Mood Scales were Used.
1 & 2) The HADS-D and A are measure Depression and Anxiety respectively. Scales range from 0 (indicating no distress) t0 21 indicating maximum distress and a score higher than 7 on either scale is deemed clinically significant.
3) The PHQ-9 (we know all about this one )
Y Axis shows % of patients in each cohort with symptoms of depression and anxiety. We can see that less pts in the early palliative group are suffering.

31. Improved survival
Survival was calculated from enrolment to time of death. The graph shows us that a greater % of patients survived for a longer period in the ‘early palliative care ‘ cohort. Median survival time was 11.6 months in the early palliative care group compared to 9.8 in the standard care group. 31

32. Study conclusions O
Those who were assigned to early palliative care had improved mood, more frequent documentation of resuscitation preferences and less aggressive end-of-life care. 32

33. Expected outcomes of an early palliative care approach
“Good death” in the most appropriate location.
Better pain and symptom management.
Better long term outcomes for bereaved relatives.
Improved experience of care.
Better quality of care.
Lower health care costs.
Zhang et al. Arch Intern Med Vol 169(5) Mar : 33 33

34. Table discussion
Think about your self-audit OR a recent death of a non- cancer patient you were involved with`
Were you satisfied with the experience?
If so, what made it work?
If NOT satisfied, why not?
What were some of the gaps in clinical care?
What could have been done differently?
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009.
Facilitator: Ask participants to take the self-audit forms from their packages or refer to the audits they completed prior to the session. Direct them to take a few minutes to read the audit forms. Think about a patient with a non-cancer diagnosis in their practice who has died. Consider the experience in relation to the audit questions.
Consider your experience
Handout: Practice Self-Audits
Table Discussion 34 34

35. Identification of patients who may benefit from a palliative approach: The first step to improve the patient and family experience of care
The purpose of this section is to sell the concept of registry development and to provide opportunities for discussion and examples of how this could be achieved. Should involve GPs and Moa teams

36. Who would benefit from a palliative approach?
Recognize all who life limiting illness will benefit, and those with indications of advancing illness have even more urgent needs and require coordinated care.
44 year old woman diagnosed with multiple sclerosis;
Woman in her 80’s with early frontal lobe dementia
Woman in 70s with CAD needing dialysis.
Woman in her 50s in hospital with COPD and pneumonia
Woman in her early 60s with advanced colon cancer 36 36

37. PSP End of Life Care Algorithm
This is where you begin in the module. The question is does the patient belong on the registry and if yes, which transition are they in.
Use the surprise question to build and refine your registry. Not all patients identified necessarily need immediate referral to Home and Community Care or Palliative Care team/resource. 37

38. Identify patients: Gold Standard Framework triggers
Three triggers for supportive/palliative care:
The surprise question: “Would you be surprised if this patient were to die in the next year?
Choice/need: patient makes a choice for comfort care only, or is in special need of supportive/palliative care.
Specific indicators: clinical indicators for each of 3 main EOL groups (cancer, organ failure, frail elderly /dementia).
Sentinel Events is another trigger to help identify patients.
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009.
Think first, how do we identify or ‘spot’ these patients?
The GSF developed to support identification through 3 triggers.
1. The first ‘surprise’ question has been validated in different settings. For our purposes we are asking to identify patients not surprised if they died in the next year.
2. Choice/need: A good example of patients who make choices for comfort along the trajectory – may be the patients with ALS who early on decides against any Bipap or ventilation.
3. Clinical indicators – the GSF outlines indicators of disease specific advanced disease
4. Sentinel events
From a perspective of patient readiness to address EOL issues, those who you identify as likely within the last year of life often are ready for EOL discussions. 38 38

39. WOULD I BE SURPRISED IF JAMES LEE DIED WITHIN THE NEXT YEAR?
This is the surprise question. Gauge audience reaction.

40. Identify: Use prognostic indicators
General:
Co-morbidity.
Recent, multiple ER visits/hospital visits.
Complications of recent hospital stay.
Reducing performance status (ECOG/Karnofsky/PPS).
Dependence in most activities of daily living (ADLs).
Impaired nutritional status despite attempts to improve
Serum albumin < 25 g/l.
Weight loss 5-10% of body weight (last 6 months).
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July Gold Standard Framework List of General Predictors of End Stage Illness
There have been general and disease specific indicators developed to support identification of patients with non-malignant disease. Often these have been developed with the intent to identifying when people qualify for services under palliative care – Hospice in US; Specialized HPC services in Canada.
It is important to note that although these are indicators of increasing risk of dying, the predictive value of clinical criteria in identifying last months is not well supported.
For seriously ill hospitalized patients with advanced chronic obstructive pulmonary disease, congestive heart failure, or end-stage liver disease, recommended clinical prediction criteria have not yet been developed that are effective in identifying a population with a survival prognosis of 6 months or less.
Fox E, Landrum-McNiff K, Zhong Z, Dawson NV, Wu AW, Lynn J. (1999). Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease. SUPPORT Investigators. Study to understand prognoses and preferences for outcomes and risks of treatments. JAMA;282: 40 40

41. Palliative Approach: Care through all the transitions41

42. Sentinel event questions
“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?” 42 42

43. Identification: Table discussion (15 minutes)
How will you think differently about identifying patients?
How will you communicate and to whom?
Registry building – what approach will you take?
Consider who should be involved in your community and when would it be appropriate to refer?
From: Curriculum Package / Facilitators’ Guide – The Palliative Approach to Chronic Disease Management, BCHPCA Learning Centre for Palliative Care, July 2009.
Appoint someone at your table to document and one to report back.
Think about the patients identified for your self-audit and those from your experience who you would say are ‘sick enough to die’.
At your table, discuss the patients you identified for the audit or can think of from within your practice and through the Health Authority?
What factors did you consider when identifying these patients?
Refer to GSF clinical indicators of advanced disease: Is the GSF useful? GSF (in handout package) 43 43

44. Patient registry and flagging charts
Include patients with advanced disease:
Cancer
AIDS
COPD and other chronic respiratory conditions
Chronic heart disease
Renal failure
Neurological conditions, including dementia
Frailty or multiple co-morbidities
Consider patients in residential care as a target population
Identify / Communicate / Assess / communicate / Plan / Communicate!! 44 44

45. Identification - what changes do you see?..... Flagging by MOA
Changes in appearance
Missing appointments
Admissions to Long Term Care or multiple hospital visits or even frequent doctors visits
Family members expressing concern, wanting to talk to the doctor about them
Changes in behaviour
Changes in gait
Decrease in ability to care for themselves
Changes in communication
Gut feeling
These are the things that will help you see with the Surprise question…. Are you noticing any of these things when seeing or talking to patients?...
Changes in appearance; where a patient was generally clean shaven or nicely dressed, they are not so much now
Missing appts either with your office or appts that you have booked for them to see a specialist
Admissions, to hospital or even multiple visits to your office…. You seem to be seeing them a lot more lately
Family members calling to talk to the doctor or asking you for information
Behavioural changes, where they were generally polite, they are now short and rude, or confused
Changes in gait; needing more support, now using a walker, walking slower, holding on to the wall, shaky etc
Decreased abilities; forgetting things, needing more assistance than normal
Changes in the way the communicate with you; are you noticing this at all
If so…..Ask the surprise question… then have a conversation with the doctor about them. 45

46. Identification: Pearls
What have we learned?
The whole team can seek to identify potential patients.
Tools are available to support identification
Surprise question (intuitive awareness of transition).
Choice (readiness of patient).
Clinical indicators (Functional/Prognostic signs).
Tools are available to support identification. 46 46

47. Break MOAs go to a break-out session
Chair explains what physicians and MOAs will be taught at their separate sessions.
* A/V tech: please go to next slide 47

48. Communication
This section can be taught in a number of ways. The videos consist of several vignettes that illustrate communication around end of life issues. These videos are not meant to be the “right way” to do it but to start conversations about what is important. These videos do not mean to suggest that physicians or nurses could accomplish all this conversation in one visit as reality likely dictates otherwise. You can show the videos in any order you choose depending on your audience. You can choose to have discussion after each video or try to hold comments until all the videos have been shown.
Ideally this section will be completed with time for role playing at the tables where people can play the role of the patient or the physician or the observer. We believe that this will provide people with important feedback on the way they communicate with their patients. While it is a forced situation there are learnings from these situations if people try to get themselves into the role. 48

49. Communication cont. Goals of this section:
Review and discuss key pearls pertaining to ACP discussions.
Review videos of ACP conversations and discuss.
Hear about your experiences holding ACP conversations. 49

50. Critical importance of communication
Six key components:
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: ; Curtis, J Gen Intern Med 2000; 16:41 50

51. Empathy
Listen for feelings, fears, concerns as well as who this person is and what is important to them
Where are they in disease trajectory?
Are they in transition from one stage to another
Even if you don’t think you can connect easily, you can learn to do this 51

52. Breaking bad news - SPIKES
Iatrogenic suffering – what families remember
Breaking bad news (Buckman)
Setting
Patient Perception
Invitation
Knowledge
Empathy
Strategy & Summary
not YIKES!
It is a strategy NOT a script
SPIKES a 6 point protocol for breaking bad news
S = physical Setting and listening Skills – privacy, involve those who need to be involved, sit down, eye level, look attentive and calm, listening mode, availability – switch off pager/ cell
P = Patient’s Perception - what do you know, think about, worry about this? Reflect patient/ family’s language
I = Invitation - are you the kind of family/ person who wants to know… how much information would you like me to give now…
K= Knowledge – prepare the patient – now I have to tell you some bad news, I’m afraid that this is not good…..
Same forms of language “lump” “spread”
Avoid technical speech forms
Small chunks
Check on absorption
Take the time it needs
E= empathy: “empathic response” see below
S = Strategy & Summary: check in with patient what they have heard and go over the main information points again
empathy: “empathic response”
3 steps
listen for the patient’s emotion
identify the source of that emotion
demonstrate that you have made the connection “I realise how shocking the results of the latest tests must be” 52

53. When to hold ACP conversations
Patients often give you an opening…..
Patient history form / intake assessment.
Annually for all adults: “I talk with all my patients about this and we talked a little about this last year…”
Part of chronic disease management: “Hope for the best but plan for the worst…” "This illness can have a fairly predictable course…here are some things you need to think about ahead of time…"
Following ER / Hospital admission: “I understand you have been in the hospital. What did the doctors say?”
From Fraser Health’s Advance Care Training
We must actively listen to patients for that opening that indicates they may be wanting to talk about end of life or advance care planning. “I thought I wasn’t going to make it that night in the hospital….” Listen for the chance to say “It sounds like you are concerned about the future. I am happy to talk about this as it is always wise to have a plan in place even before you need it….”
ACP conversations may be reviewed and revisited in:
Primary care (physician's office)
Include in patient history form/intake assessment. For example, “Do you have an Advance Care Plan?”
Annual physicals for all adults: “I talk with all my patients about this and we talked a little about this last year…”
As part of chronic disease discussions: "This particular illness can have a fairly predictable course…here are some things you need to think about ahead of time…"
Following emergency department/hospital admissions: “I understand you have been in the hospital. What did the doctors say?” 53 53

54. !!when available insert image of the MOH pt guide
“My Voice” is a guiding document for ACP conversations. Documents patients wishes concerning…
Medical Interventions
CPR/No CPR
Friends and family to assist in decision making on behalf of the patient.
Also describes location of other pertinent planning documents.
Provincial ACP guide available soon
Will include documentation re:
advance directives
representation agreements
providing contact information
for temporary substitute decision makers 54

55. Scripted question (see handout)
9. You and I have talked about CPR, and I gave you some booklets on it. What have you learned about CPR?
10. What do you understand about your health condition?
What does your family understand?
11. What do you know about the possible complications of
_______________ (kidney failure, COPD, CHF, etc.)?
12. Are there any other concerns you have about your health care wishes?
13. How has your illness interfered with your daily activities?
14. Tell me what you understand about the options for treating your illness.
15. What treatments/medications interfere with your quality of life?
1. What do you think is the cause of your health condition/symptoms?
2. How much intervention do you want? (i.e., No assisted ventilation? BIPAP? Better symptom control?)
3. What do you hope for with this current plan of care? What else do you hope for?
4. What fears or worries do you have about your illness or medical care?
5. What was your last hospitalization like? What did it mean to you?
6. Have you talked with your family about your wishes for future medical care?
7. If you weren’t able to make your own health care decisions, who would make them for you?
8. How comfortable are you talking with your family/friends about these wishes?

56. 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. 56 56

57. 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? 57 57

58. Group discussion
Your experiences with ACP conversations 58

59. Collaboration with your local team

60. Objectives Who is on the local Primary Care Team?
What does primary care team collaboration look like?
Involvement varies based on Transition
Working with
Home and Community Care
Specialty palliative care team
Non-palliative consultants (specialists)
Local resources + CHARD reference
Discuss when to refer in your community. 60 60

61. Who is the patient’s care team?
Patient, family and informal network
Family physician
Community pharmacist
Home Health / Community Care –
Nurses/rehab/home support
Nurse practitioners, community RT
Disease specific consultants / services
Hospice palliative care consult teams
Who are the members of this patient’s primary team? There are those key players for the patient and family from the health care team. And of course there are other people who form around the patient and family beyond health care providers: Neighbors, volunteers, family and friends.
May involve both primary care and specialists. How do you maximize the team as the patient’s illness advances? The patient’s family is very important and also needs to be a focus in your care.
Reference the James Lee Case study in your discussion. 61

62. Palliative Approach: Care through all the transitions
Time of Diagnosis
Decompensation
experiencing life limiting
illness
Decline and last days
Dependency and symptoms increase
Death and bereavement
Transition 1
Transition 5
Transition 4
Transition 3
Transition 2
Early
Chronic Disease Management
Survivorship
Seniors at risk
Disease advancement
Patient Journey
McGregor and Porterfield 2011

63. Transitions in life-limiting illness
The EOL algorithm, has embedded at each of the five transitions, a text box ‘roles’. This “roles’ text box links to the roles for the various team members that are key at that point in the patient’s illness trajectory. 63 63

64. Transition 1 Advancing disease
Would NOT be surprised if patient died in next year
Discuss goals, wishes & plans as illness advances. Initiate advanced care planning.
Identify other involved providers & ensure information exchange.
Medical assessment of patient symptoms, needs & supports.
Consider referral - Chronic disease clinics. Home and Community Care if functional status declining and home based supports needed.
** This is a recap of transition 1 **
Disease containment, focus on function –
For patient with increasing symptoms, visits to ER; needing help with personal care and/or symptoms
Patients with advancing illness most likely are connected with a specialist for their specific illness, respirologist, cardiologist, perhaps are connected with a chronic disease clinic. Team play and coprovision of care may already be the norm for patients such as James Lee. As his disease advances, so does the team. With indications of increasing frailty – referral to other services are essential. Through indicators and sentinel events such as ER visits, referral to community based services will create a further net of support. Services such as home support for help with bathing, or nursing for support with symptom management; maybe increasing connection with the chronic disease clinics. Identifying a main contact with Community care and ensure information exchange is essential to working in collaboration versus in parallel. For many patients with chronic disease, it will never be clear that there are in their last months of life, so these patients may never be enrolled on the palliative services in community – where greater certainty to die within months is required. Many patients may already be well-known to Home and Community Care as current clients. It is important to include the family in your assessment of need and determine how they are managing, what role they wish to take in care as illness advances and needs increase. 64 64

65. Transition 2 Decompensation
Prognosis months vs. more than a year; cancer-
PPS 50%
Focus on Integrated Care Planning & Coordination with Home and Community Care
Coordination of care conversation: GP and HCN.
Enable ready access to achieve co-provision of care vs. parallel practice.
Assess needs and develop plan
Tools – BC Palliative Care Benefits application (drugs & HCN assessment); GP letter from Home Health
For those patients when there is clarity that death is anticipated in months, referral to palliative home care is important. Those anticipated to have 6 months of less to live can be enrolled palliative benefits, and at the same time are automatically referred to home and community care services for assessment for palliative supplies and equipment and home care nursing services. This referral initiates closer home care nursing monitoring and coordination of care as illness advances. 65 65

66. Working together GP and Home and Community Care?
this is an opportunity to talk about referral and the role of H&CC
clients who are placed on the BC Palliative care benefits program should be referred to H&CC for assessment of needs, including equipment
if possible, ask H&CC staff to speak to this slide.

67. When to refer to HPC specialist: Indicators
Complex patient / family needs or anticipated illness course.
Distress with symptoms or coping remains
No resolution within 2-3 interventions.
Distress continuing.
Complex family dynamics and indications of total pain.
Self reflection - knowledge, skill and ability of involved team in relation to patient/family needs.
These are common indicators of referral for HPC consultation. Consultation with HPC is no different than other consultation, and is dependent on the skill, knowledge and ability of the providers. For an experienced Family physician who home visits and is experienced in symptom management, the services of the consultants may be needed in more complex circumstances than for a family physician who does not home visit, and has less experience with advancing illness and support at home. 67 67

68. Specialist-GP shared care
Communicate:
relevant patient-specific information
family issues if relevant.
Clarify early in Specialist-GP relationship:
roles in care of patient through transitions of Chronic Disease Management
needs, expectations and outcomes from the consultation
Indicate lines of communication/availability to share care effectively. 68

69. Specialty practice and EOL
O – when SPs are not attending
If palliative approach appropriate:
reflect in treatment recommendations
give GP permission/advice about stopping medications.
Inform patient/family
All options including palliative care with no active treatment
realistic outcomes of treatment options
Give patient ACP planning documents:
follow up with all care providers – include in communications to GP 69

70. Specialty practice and EOL
O – when SPs are not attending
Shared care through end of life
Include recommendations for disease specific symptom management as patient approaches end of life.
Indicate availability for access to advice throughout transition to support GP in the care of patient at end of life. (telephone fees available to both to support) 70

71. Telephone fees to support GP-Specialist shared care at EOL
O – when SPs are not attending
Urgent advice needed (< 2 hours)
Specialist fee G10001
GP with Specialty training fee G14021
GP requesting urgent advice fee G14018 (if brief)
Less urgent advice (up to 1 week)
Specialist fee G10002
GP with Specialty training fee G14022
G14077 GP Attachment Conferencing for conferencing with at least 1 other Allied Care Provider (includes physician, Home Care Nurse or other AHP) – per 15 minutes or greater portion – 2 units/day 18 units/calendar year per patient across any setting. This replaces G14015/16/17 for all FPs participating in Attachment (requires annual submission of participation codes G14070/G14071) 71

72. Collaborative practice: Table discussion
Think about your practice in relation to the palliative approach + transitions 1 and 2
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? 72

73. Collaborative practice: Table discussion
Identify one aspect of care that you will do differently in your practice.
What could I do differently in my practice, based on this workshop?
Each participant creates a specific action plan for identified practice changes, and identifies when this could begin. 73 73

74. Action period planning
The Model for Improvement is action-oriented, with immediate planning and testing of changes. “What are you going to test next Tuesday?” is the mantra. Test on a small scale, on a pilot mental health population. That way the impact will be confined and you can evaluate the results. If needed, you can refine the test and implement again. Evaluate the results… repeat the cycle until you are satisfied THEN implement the changes on to a larger population.. This is called a rapid-cycle testing of changes. The impact of changes is defined by improvement in data; measures are tracked using a run chart and changes are annotated. Tests of change along with outcome data are recorded on monthly basis.
Try – pilot, report back, experiment in your practice

75. Module aims
To improve the care of patients and families living with, suffering and dying from life-limiting and chronic illnesses by:
Improving collaboration:
Identifying and referring appropriate patients to specialty palliative care and others for consultation and services.
Understanding provider needs, clarifying roles, tools and resources for practice support and collaboration.
Improving collaborative care planning, coordination and communication with patients/caregivers and physicians and other local health care and community providers.
“Integration
in Action” 75

76. PSP End of Life Key Measures – Measured by practice
# 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 had an ACP conversation.
% of patients on the registry that had an ESAS and or PPS (as appropriate).
The key measures we ask you to track during your improvements are related to best practice in end of Life care. We know if your team sees progress in these measures you can expect improvement in the overall quality of care for patient in their last year of life. These measures should be tracked using the patient registry you will begin to develop in action period 1. 76 76

77. Key measures – non-practice based
% 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 ( 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.
The optional measures are measures that our module evaluation will cover.
This measures will help us to show that the improvements that are being collective made are making a difference in the above areas.
You will be asked to participate in this measurement by surveys.
You will not be asked to collect these measures at the clinic level. 77

78. Finding changes End of Life change package. Team ideas. Peer changes.
Once you have set your aim, and chosen your measures you need to start testing changes.
In your change package you will find descriptions of the various changes you can try and the resources that support them. These changes are derived from best practice guidelines and are proven ideas that can improve patient care. The changes are written so that they can be applied to any clinic setting and will need to be contextualised to your practice setting.
Your team may also have some ideas from what they have heard on specific changes to try.
Another powerful source of ideas will be your peers in the module. 78

79. Friendly reminder
The Action Period is the time in-between learning sessions
It’s where you do stuff
As you heard at the beginning of this session, the expectation is that you now go back to your practice, your world, and try these tools. It’s your ACTION period. 79

80. Action Period 1 planning <YOUR FORM>
Pt Identification
Communication
Collaboration 80

81. Payment forms O 81