Practice Support Program
End of Life
Learning Session 1
Ambiguous dying
“There will not be a distinct terminal phase.
The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of
us with advanced heart failure,
we will have had a 50-50 chance to live for six months on the day before we died”
Joanne Lynn:
Sick to Death and Not Going to Take it Anymore (2004)
2
Agenda
 <as per your timing>
 <note: slides with an
O
are optional>
3
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
4
Learning Sessions and Action Periods
LS1
LS2
AP1
LS3
AP2
5
PSP physician payments
Module
# of Sessions
Learning Session 1
MOA salary replacement
1
4 hours @ $20/hr
$
$
407.81
80.00
Action Period 1
2
$
815.62
Learning Session 2
MOA salary replacement
1
4 hours @ $20/hr
$
$
407.81
80.00
Action Period 2
1.5
$
611.72
Learning Session 3
MOA salary replacement
1
4 hours @ $20/hr
$
$
407.81
80.00
Total Payment
Total Payment
$ 2,890.77
6
Module aims
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.
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
To improve the care of patients and families living with,
suffering and dying from life-limiting and chronic
illnesses by:
 Improving collaboration:
o Identifying and referring appropriate patients to specialty palliative
care and others for consultation and services.
“Integration
in Action”
o Understanding provider needs, clarifying roles, tools and resources
for practice support and collaboration.
o Improving collaborative care planning, coordination and
communication with patients/caregivers and physicians and other
local health care and community providers.
10
End of Life Regional PSP Outline
11
PSP End of Life Care Algorithm
12
O
The patient and family voice
End of Life Care:
Expanding the scope
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.
15
O
Cause of deaths in Canada
16
O
17
End stage organ failure: Approaching End of Life
Terminal
Phase
Function
High
Low
Begin to use hospital more often, self-care more
difficult
Death
Time ~ 2-5 years.
Death usually seems “sudden”
Modified from Lunney JR et al. JAMA 2003: 289: 2387.
18
Ambiguous dying
“There will not be a distinct terminal phase.
The week we die will start out like any other and some unpredictable calamity will occur. Amongst those of
us with advanced heart failure,
we will have had a 50-50 chance to live for six months on the day before we died”
Joanne Lynn:
Sick to Death and Not Going to Take it Anymore (2004)
19
20
The Palliative Approach
to life-limiting illness
Canadian Hospice Palliative Care Association:
Model of care (2002) www.chpca.net
Bereavement
Care
Disease-modifying therapy
Palliative Approach to Care
Diagnosis of life-limiting
illness
Death
Illness trajectory
22
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
http://www.who.int/cancer/palliative/definition/en/
23
Palliative Approach
Guided by person centered goals of care:
1.
2.
3.
4.
5.
6.
7.
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)
24
Palliative Approach:
Care through all the transitions
Early
Chronic Disease
Management
Disease advancement
Survivorship
Decompensation
experiencing life limiting
Seniors at risk
illness
Dependency and
symptoms increase
Decline and last days
Death and bereavement
Transition 1
Transition 2
Transition 3
Transition 4
Transition 5
Time of
Diagnosis
Patient Journey
McGregor and Porterfield 2011
25
Best practice: Collaborative and interdisciplinary
Palliative Care Australia
26
Evidence for an expanded scope of
the Palliative Approach to care in
family and specialty practice?
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
28
Improved quality of life
29
O
Improved mood
30
Improved survival
31
O
Study conclusions
 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
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 9 2009:480-488
33
Table discussion
Think about your self-audit OR a recent death of a noncancer 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?
34
Identification of patients who may
benefit from a palliative approach:
The first step to improve the patient
and family experience of care
Who would benefit from a palliative approach?
36
PSP End of Life Care Algorithm
37
Identify patients:
Gold Standard Framework triggers
Three triggers for supportive/palliative care:
1.
The surprise question: “Would you be surprised if this
patient were to die in the next year?
2.
Choice/need: patient makes a choice for comfort care only, or is
in special need of supportive/palliative care.
3.
Specific indicators: clinical indicators for each of 3 main EOL
groups (cancer, organ failure, frail elderly /dementia).
Sentinel Events is another trigger to help identify patients.
38
WOULD I BE SURPRISED IF
JAMES LEE DIED WITHIN
THE NEXT YEAR?
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).
40
Palliative Approach: Care through all the transitions
41
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
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?
43
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
44
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
45
Identification: Pearls
What have we learned?
1.
The whole team can seek to identify potential patients.
2.
Tools are available to support identification
› Surprise question (intuitive awareness of transition).
› Choice (readiness of patient).
› Clinical indicators (Functional/Prognostic signs).
3.
Tools are available to support identification.
46
Break
Communication
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
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:
868-874; Curtis, J Gen Intern Med 2000; 16:41
50
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
Breaking bad news - SPIKES
 Iatrogenic suffering – what families remember
 Breaking bad news (Buckman)
Setting
Patient Perception
Invitation
Knowledge
Empathy
Strategy & Summary
not YIKES!
52
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?”
53
!!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
Scripted question (see handout)
1. What do you think is the cause of your health
condition/symptoms?
9. You and I have talked about CPR, and I gave you some
booklets on it. What have you learned about CPR?
2. How much intervention do you want? (i.e., No assisted
ventilation? BIPAP? Better symptom control?)
10. What do you understand about your health condition?
What does your family understand?
3. What do you hope for with this current plan of care?
What else do you hope for?
11. What do you know about the possible complications of
_______________ (kidney failure, COPD, CHF, etc.)?
4. What fears or worries do you have about your illness
or medical care?
12. Are there any other concerns you have about your
health care wishes?
5. What was your last hospitalization like? What did it
mean to you?
13. How has your illness interfered with your daily
activities?
6. Have you talked with your family about your wishes
for future medical care?
14. Tell me what you understand about the options for
treating your illness.
7. If you weren’t able to make your own health care
decisions, who would make them for you?
15. What treatments/medications interfere with your quality
of life?
8. How comfortable are you talking with your family/friends
about these wishes?
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
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
Group discussion
 Your experiences with ACP conversations
58
Collaboration with your local team
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
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
61
Palliative Approach: Care through all the transitions
Early
Chronic Disease
Management
Disease advancement
Survivorship
Decompensation
experiencing life limiting
Seniors at risk
illness
Dependency and
symptoms increase
Decline and last days
Death and bereavement
Transition 1
Transition 2
Transition 3
Transition 4
Transition 5
Time of
Diagnosis
Patient Journey
McGregor and Porterfield 2011
62
Transitions in life-limiting illness
63
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.
64
Transition 2 Decompensation
Prognosis months vs. more than a year; cancerPPS 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
65
Working together GP and Home and
Community Care?
66
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.
67
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
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
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
Telephone fees to support GP-Specialist shared care at
EOL
• Urgent advice needed (< 2 hours)
– Specialist fee G10001
O – when
SPs are not
attending
– 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
Collaborative practice: Table discussion
Think about your practice in relation to the palliative
approach + transitions 1 and 2
1.
2.
3.
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
Collaborative practice: Table discussion
Identify one aspect of care that you will do differently in your
practice.
73
Action period planning
Module aims
To improve the care of patients and families living with,
suffering and dying from life-limiting and chronic
illnesses by:
 Improving collaboration:
o Identifying and referring appropriate patients to specialty palliative
care and others for consultation and services.
“Integration
in Action”
o Understanding provider needs, clarifying roles, tools and resources
for practice support and collaboration.
o Improving collaborative care planning, coordination and
communication with patients/caregivers and physicians and other
local health care and community providers.
75
75
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).
76
76
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 (1-10
confidence scale).
 % of patients/caregivers who feel comfortable with their
End of Life care plan.
 % of caregivers who feel supported when caring for
patients at End of Life.
77
77
Finding changes
 End of Life change package.
 Team ideas.
 Peer changes.
78
78
Friendly reminder
 The Action Period is the time in-between learning sessions
 It’s where you do stuff
79
Action Period 1 planning <YOUR FORM>
Pt Identification
Communication
Collaboration
80
O
Payment forms