How can we move toward an integrated
palliative approach to care?
PEI Palliative Care Conference
Leanne Kitchen Clarke
June 12, 2014
1
Presenter disclosure
• I have received payment through my consulting
practice, Leanne Clarke Consulting, from two
commercial organizations in past two years.
• Provided consulting advice to Weber Shandwick, PR
firm, on stakeholder strategies for the “Healthy Grains
Institute”
• Provided mapping of patient groups for Astellas
Canada
2
Program Disclosure of Commercial Support
• No connection/support received for the development
of this presentation
3
Mitigation of bias
• No mitigation of bias required for this presentation
4
One other disclosure….
5
Overview
• The Way Forward initiative
• Changing face of dying – context for action
• Harris/Decima and Ipsos Reid survey highlights
• What Canadians are saying about hospice palliative
care. Are doctors and nurses saying the same
thing?
6
From the Blueprint for Action
• QELCCC’s Blueprint for Action 2010-2020 identified the
following priority:
– Ensure all Canadians have access to high-quality
hospice palliative and end-of-life care.
• Establish a multi-sectoral task force or working group that
crosses health and social services (e.g., health, education,
finance, human resources, First Nations, veterans, and
non-governmental organizations, such as unions and
insurance associations), whose role is to consult with
communities and make recommendations to advance
hospice palliative end-of-life care.
7
Funding
• The Way Forward is a three-year initiative led by the
Quality End-of-Life Care Coalition of Canada and managed
by the Canadian Hospice Palliative Care Association
• Funded through a 2011 federal budget commitment from
the Government of Canada for 2012 to 2015
8
Objectives
The initiative will address two key objectives:
1. To change the understanding and approaches to
aging among key stakeholders as it relates to:
 chronic, serious and life-limiting illness and dying
 hospice palliative and end-of-life care and advance care
planning
2. To enable stakeholders to move towards
community-integration of hospice palliative care
across all health and home care settings.
9
The National Framework
Next draft
10
Elements of the Framework
• Describes the integrated palliative approach
• Includes a vision and overarching principles
• Uses case studies to show how the palliative approach
can benefit individuals and families with chronic and
life-limiting illnesses
• Action steps by setting/sector and provider
o
o
o
o
Federal/provincial/territorial governments
Regional programs
HPC programs/providers
Primary care, home care, acute care, long-term care
11
The changing face of dying
The number of seniors 65 and
older in Canada projected to
more than double by 2036.
Only 10% die suddenly. The rest
of us need care and support –
but 65% who died last year not
designated as “dying”.
2/3 will die with 2 or more
chronic diseases after months or
years in “vulnerable frailty”.
Only 20% of us will die with a
recognizable terminal or
“palliative” phase.
1
The challenge for palliative care:
differing trajectories
13
Currently in Canada…
Hospice palliative care is:
• Equated with a specialized service
and/or program
• Associated with last
months/weeks of life
• Based on a cancer model which is
not transferable to most chronic
and life-limiting diseases
• Not received by most people
because they are never identified
as ‘dying’
14
Integrating the palliative approach…
• Focuses on improving quality of life of people with serious lifelimiting conditions, and their families.
• Involves physical, psychological, social and spiritual care, and
promotes understanding of loss and bereavement.
• With ongoing chronic disease management - acknowledge
changes will happen, and dying is part of living
• Is provided in all health care settings – long-term care, primary
and home care – with support when needed by specialist
palliative care team.
• Is not delayed until the end stages of an illness but introduced
early to maximize quality of life until the end of life.
15
What do Canadians across
Canada and PEI think about
hospice palliative care, ACP and
expectations about dying?
16
Awareness of Hospice Palliative Care Services
Question 18
One type of health care brings together a variety of services to relieve the suffering and improve the quality of
life for persons living with or dying from a chronic illness, as well as making services available for family
members of these individuals. Are you aware of these types of services?
Yes
National
No
49%
Prince Edward
Island
51%
53%
0%
20%
47%
40%
60%
80%
Base: All respondents (n=2,976)
17
100%
Type of Patient of Hospice Palliative Care
Question 24
To your knowledge, are hospice palliative care services available for…?
To all people at the end of their life regardless of their illness
Only patients dying of a life threatening or life-limiting disease like cancer or HIV/AIDS
Don't know
National
47%
Prince Edward Island
19%
42%
0%
20%
34%
21%
40%
37%
60%
80%
Base: All respondents (n=2,976)
18
100%
Knowledge of Locations Hospice Palliative Care is Offered
Question 22
To the best of your knowledge, is hospice palliative care offered in the following locations?
% Yes
National
Prince Edward Island
74%
In a long term facility or nursing home
79%
63%
In a hospital
61%
57%
In some other facility in your community
52%
49%
In your own home
42%
0%
20%
40%
60%
Base: All respondents (n=2,976)
19
80%
100%
Support for Hospice Palliative Care
Question 30
Hospice palliative care is an approach that improves the quality of life of patients and their families facing the
problems associated with life-threatening illness, through pain and symptom management, including physical,
psychosocial and spiritual. Care in the last days and weeks of life is just one component of palliative care. Overall,
what is your attitude towards this type of approach to end-of-life care?
Very supportive
Somewhat supportive
National
Somewhat opposed
66%
Prince Edward Island
Very opposed
30%
76%
0%
20%
40%
20%
60%
80%
Base: All respondents (n=2,976)
20
2%
2%
2%
1%
100%
End-of-Life Care Setting Preferences
Question 13
When thinking about end-of-life, is your preference to die in your home, in a hospital, or another health
care facility?
Home
Hospital
Other health care facility
National
75%
Prince Edward
Island
75%
0%
20%
40%
14%
14%
60%
80%
Base: Valid respondents (n=1,691)
21
12%
10%
100%
End-of-Life Care Setting Expectations
Question 14
And thinking about the care you will likely need in the months before the end-of-life, during those months,
do you expect to receive the bulk of your care in your home, in a hospital, or another health care facility?
Home
Hospital
National
Other health care facility
52%
Prince Edward
Island
54%
0%
20%
40%
26%
22%
23%
23%
60%
80%
Base: Valid respondents (n=1,772)
22
100%
Discussion About End-of-Life Preferences
Question 15
Have you ever talked to a family member, doctor, lawyer, friend, or financial advisor about your end-of-life care
preferences?
Note: This is a multiple choice response
National
Prince Edward Island
34%
33%
Yes, family member
11%
11%
Yes, friend
Have talked about end-oflife care preferences with
anyone:
National: 45%
Prince Edward Island: 45%
7%
Yes, lawyer
12%
5%
Yes, doctor
1%
5%
Yes, financial advisor
2%
55%
55%
No
0%
10%
20%
30%
40%
Base: All respondents (n=2,976)
23
50%
60%
Views on Planning for End-of-Life Care
Question 26
Which of the following statements comes closer to the way you feel?
People should start planning for end-of-life care when they are healthy
People should start planning for end-of-life care when they are diagnosed with a chronic illness
People should start planning for end-of-life care when they are diagnosed with a life-threatening illness
You can't plan for end-of-life care, it just happens when you need it
National
52%
Prince Edward Island
12%
63%
0%
20%
15%
10%
40%
60%
20%
8%
80%
Base: All respondents (n=2,976)
24
19%
100%
Importance of Discussion About End-of-Life Preferences
Prince Edward Island
Question 16
In your opinion, how important is it to discuss one’s end-of-life care with…?
Extremely important
Very important
Not very important
Not at all important
Family
member
Somewhat important
58%
Health Care
Provider
18%
Friend
13%
Lawyer
38%
23%
19%
Financial
Advisor
9%
0%
33%
29%
20%
10% 2%
1%
86%
33%
31%
8% 5%
56%
1%
35%
11%
48%
12%
32%
2%
19%
39%
40%
% Had
Discussion
28%
32%
23%
T2B
% Total
13%
12%
12%
60%
8%
17%
80%
100%
Base: All respondents (n=2,976)
25
Reasons for Reluctance to Discuss End-of-Life Care
Question 17
How strong do you think each of the following is for explaining why people might be reluctant to discuss
end-of-life care?
National
Extremely strong reason
Prince Edward Island
Very strong reason
Somewhat strong reason
T2B
Afraid of death
24%
21%
24%
16% 16%
Don’t want to upset family
17%
31%
28% 15% 9%
members
Creeps me out and makes me
17% 21%
26%
18% 17%
feel uncomfortable
I'm feeling healthy so I don't
16% 26%
28%
18% 11%
have a reason to think about it
Not enough knowledge about
10% 23%
37%
19% 11%
options to discuss
Nothing I can do about it so
10% 18%
33%
24% 15%
why bother
In my culture, we avoid talking
10%13% 25%
25%
27%
about death
0%
20%
40%
60%
T2B
48%
22%
26%
50%
19%
33%
40%
16%
42%
17%
22% 15% 15%
26%
22%
30%
9% 24%
23%
8% 18%
80% 100%
0%
20%
Base: All respondents (n=2,976)
26
19% 9%
38%
27%
22%
40%
17% 7% 53%
18% 19%
25%
33% 10% 26%
28%
24%
41%
46%
16% 10% 36%
24%
25%
60%
48%
15%
26%
33%
26%
80% 100%
Sources of Information on Hospice Palliative Care
Question 25
If you were in need of information of hospice palliative care services, to which of the following sources would you
go for information?
Responses shown only if greater than 1%. Responses 1% or less are rolled up into ‘Other’.
73%
75%
Family physician
38%
38%
A community health care centre
31%
32%
A public health or community nurse
24%
27%
A provincial telephone or tele-health service
National
Prince Edward Island
8%
7%
A pharmacist
5%
2%
Online/web site (unspecified)
3%
4%
Other
0%
20%
40%
60%
80%
Base: All respondents (n=2,976)
27
100%
How ready are primary care
providers to adopt a palliative
approach?
28
Consistent with the qualitative learning – two-thirds of physicians would
consider John palliative. But only 43% are very likely to discuss an ACP.
Should John be considered palliative?
Chronic CHF – Home Care
%Yes
• John is a 67yr old man, with CAD, HTN, and
Afib.
80%
Nurses
ON
QB
West
Atl
69%
68%
55%
78%
76%
92%
77%
77%
How likely is it that you would discussion an ACP?
• He lives at home with his 2nd wife, who is very
supportive. Both have children from previous
marriages.
Very likely
• John recovered from each event, but with
reduced heart function each time.
GP/FPs
• He is now quite weak, unsteady, and suffers
with SOB, fatigue and frequent chest pains.
Nurses
43%
50%
1
%Likely
Qualitative Feedback
65%
GP/FPs
• He has had several MIs in the last 2 years.
Each time he was “sick enough to die”. His
prognosis might be days or years…impossible
to know for sure.
• He sees himself as a “survivor” but knows
that could change.
Total
Somewhat likely
39%
36%
%Likely
82%
87%
ON
QB
West
Atl
GP/FPs
78%
80%
84%
94%
Nurses
84%
83%
90%
94%
Some would classify John as palliative given his multiple conditions, recent circumstances and strong
likelihood of deterioration. Others adopted a more restrictive definition of palliative care to mean specifically
care for terminally ill patients close to end of life and thus would not consider John as palliative at this stage.
An advance care plan would be more appropriate. There were calls for clarification (in Montreal in particular)
on what palliative care means to help physicians determine when it should be administered and to help the
public understand what is involved.
Base: All respondents (Physician n=286); (Nurses n=200);
29
Advance Care Planning Comfort and Knowledge
 There is an opportunity to make GP/FPs and nurses more comfortable discussing ACPs with patients (only 26%
of physicians and 18% of nurses are very comfortable).
 The lack of comfort is likely because many have limited knowledge of ACPs, knowledge is particularly low in
Ontario for physicians.
 One-quarter of physicians/nurses across Canada know little or next to nothing, 38%/37% say they know enough
to get by and only 4%/3% have expert knowledge.
Comfort Discussing Advance Care Planning
6%
20%
24%
Not at all
comfortable
Not very
comfortable
50%
70%
76%
26%
% Comfortable
ON
QB
West
Atl
51%
18%
GPs
Nurses
69%
72%
76%
50%
81%
80%
83%
77%
Somewhat
comfortable
Very
comfortable
Knowledge of Advance Care
Planning
I have expert knowledge
ON
QB
West
Atl
4%
2%
6%
4%
-
3%
2%
4%
3%
-
33%
27%
27%
37%
67%
34%
40%
8%
46%
35%
38%
32%
45%
43%
22%
37%
29%
54%
32%
35%
18%
26%
16%
13%
6%
21%
21%
29%
15%
24%
14%
6%
3%
6%
8%
4%
3%
6%
I have advanced knowledge
but not an expert
I know enough to get by
I know a little
I know very little/
next to nothing
14. Before today, which of the following best describes your level of knowledge of Advance Care Planning?
15. How comfortable are you initiating a discussion about Advance Care Planning with patients and/or their family?
Base: All respondents (Physician n=286); (Nurses n=200);
8%
6%
30
Perceptions of When People Should Start ACPs
 Nurses are more likely to believe that people should start ACPs when they are healthy, compared to physicians.
Four in ten physicians (41%) vs. six in ten nurses (61%) believe people should start ACP when they are healthy.
 Physicians in the west are more likely to believe people should start ACP when they are healthy.
According to a Canadian general population study conducted in 2013, 52% of the public
thought that people should start planning for end-of-life care when they are healthy.
GPs
Nurses
ON
QB
West
Atl
37%
30%
53%
39%
69%
38%
68%
77%
35%
25%
29%
39%
10%
17%
14%
12%
22%
21%
34%
14%
22%
20%
18%
33%
16%
6%
7%
10%
4%
4%
13%
2%
41%
People should start Advance Care Plans when they
are healthy
People should start Advance Care Plans when they
are diagnosed with a chronic illness
61%
31%
13%
People should start Advance Care Plans when they
are diagnosed with life-threatening illness
You can't start Advance Care Plans early, it just
happens when you need it.
6%
5%
27. According to a Canadian general population study conducted in 2013, 52% of the public thought that people should start planning for
end-of-life care when they are healthy.
Which of the following statements comes closer to the way you feel?
Base: All respondents (Physician n=286); (Nurses n=200)
6%
31
Discussing Advance Care Planning With Older Healthy Patients
 There is an opportunity to make GP/FPs and nurses more comfortable discussing ACPs. Most are at least
somewhat comfortable initiating a discussion about ACP with older healthy patients, with Ontario and west
physicians more comfortable than physicians from Quebec.
 If given sufficient training, only three in ten (29%) GP/FPs say they definitely would routinely initiate a discuss
about ACP with healthy patients over 65; however, over four in ten (44%) nurses would definitely initiate this
% Comfortable
discussion.
Very comfortable
Not very comfortable
GPs
Nurses
30%
Somewhat comfortable
Not at all comfortable
49%
36%
19%
46%
17%
Definitely would
Probably would
Might or might not (depending upon patient)
Probably would not
Total
ON
QB
West
Atl
79%
79%
64%
86%
94%
82%
89%
63%
86%
94%
% Would
Total
ON
QB
West
Atl
72%
73%
66%
77%
67%
77%
83%
67%
76%
82%
Definitely would not
GPs
Nurses
29%
43%
44%
22%
33%
23%
28. According to a Canadian general population study conducted in 2013, 52% of the public thought that people should start planning for
end-of-life care when they are healthy. Knowing this, how comfortable are you initiating a discussion about Advance Care Planning with
older healthy patients?
29. If you were given sufficient training and information about how to initiate a discussion about Advance Care Planning with older
healthy patients, how likely is it that you would routinely initiate this discussion with your patients over the age of 65?
Base: All respondents (Physician n=286); (Nurses n=200)
32
Confidence with Patient/Family Interactions
GP/FPs
 Only half or fewer GP/FPs are confident to perform these interactions independently. GP/FPs in Quebec are more
confident with some interactions, compared to those in Ontario.
 Notably, GP/FPs are least confident managing terminal delirium, limited patient decision-making capacity, informing
patients of supports available, and managing terminal dyspnea.
Confident to perform independently
Confident to perform with close supervision /coaching
I do not do this /this is not part of my job
Confident to perform with minimal consultation
Need more information/ need further basic instruction
53%
Managing reports of constipation
Answering questions about the effects of certain medications
35%
50%
Reacting to reports of pain from the patient
35%
% Confident to perform
independently
ON
QB
West
Atl
8% 5%
42%
59%
54%
72%
9% 6%
45%
53%
50%
61%
48%
35%
11% 7%
36%
53%
50%
72%
Supporting the patient or family member when they become upset
45%
37%
11% 7%
43%
38%
49%
61%
Answering patients questions about the dying process
44%
38%
10% 7%
36%
51%
45%
56%
Discussing different environmental options (eg hospital, home, family)
43%
11% 9%
37%
42%
47%
61%
Patient/family interactions and clinical management
42%
42%
11% 6%
37%
44%
41%
56%
Managing nausea / vomiting
42%
38%
15% 5%
32%
50%
41%
61%
36%
30%
51%
33%
Discussing patients wishes for after their death
37%
39%
38%
10% 9%
Managing limited patient decision-making capacity
30%
41%
17%
11%
25%
35%
29%
39%
Informing people of the support services available
30%
41%
16%
12%
28%
26%
32%
50%
Managing terminal dyspnea (breathlessness)
29%
21%
39%
28%
44%
18%
30%
18%
39%
Managing terminal delirium
23%
35%
35%
21%
18%
11%
21%
Values 4% and below not labeled
24. Please rate your degree of confidence with the following patient / family interactions and patient management topics, by checking
off the relevant box below
Base: All respondents (Physician n=286)
33
Confidence with Patient/Family Interactions
Nurses
 Less than six in ten nurses are confident to perform each of the following patient/family interactions independently.
 Similar to GP/FPs, nurses are least confident managing terminal delirium, limited patient decision-making capacity
and managing terminal dyspnea. Nurses are less confident in answering patient questions about the dying process
or discussing patient wishes for after their death than GP/FPs.
Confident to perform independently
Confident to perform with close supervision /coaching
I do not do this /this is not part of my job
Confident to perform with minimal consultation
Need more information/ need further basic instruction
Managing reports of constipation
57%
31%
Supporting the patient or family member when they become upset
56%
31%
Answering questions about the effects of certain medications
46%
Reacting to reports of pain from the patient
46%
ON
QB
West
Atl
60%
46%
57%
71%
9%
71%
29%
58%
59%
11% 5%
45%
46%
44%
53%
48%
42%
44%
53%
5%
37%
34%
% Confident to perform
independently
13% 5%
43%
27%
15%
13%
48%
33%
47%
35%
Discussing patients wishes for after their death
41%
31%
13%
13%
53%
17%
41%
59%
Managing nausea / vomiting
40%
10% 5% 6%
46%
29%
39%
53%
Informing people of the support services available
39%
10% 12%
47%
25%
39%
41%
15%
10%
45%
13%
35%
53%
14% 6%
42%
17%
39%
35%
10% 11%
30%
17%
27%
35%
15%
27%
4%
22%
29%
18%
17%
15%
24%
Answering patients questions about the dying process
Discussing different environmental options (eg hospital, home, family)
35%
Patient/family interactions and clinical management
34%
Managing terminal dyspnea (breathlessness)
Managing limited patient decision-making capacity
Managing terminal delirium
40%
36%
39%
44%
26%
20%
17%
33%
20%
33%
25%
27%
24%
19%
14%
Values 4% and below not labeled
24. Please rate your degree of confidence with the following patient / family interactions and patient management topics, by checking
off the relevant box below
Base: All respondents (Nurses n=200)
34
Challenges in Caring for a Patient with Chronic or Life-Threatening Illness
GP/FPs
 Control of pain is the most challenging issue that physicians face in caring for palliative patients (42% ranked it
first), but managing depression and the patient’s emotional needs are also common challenges. GP/FPs in
Quebec are more likely to rank ‘control of pain’ as the most challenging issue compared to those in Ontario.
GP/FPs
% Rank 1
Rank 1
Rank 2
Rank 3
ON
QB
West
Atl
36%
55%
41%
33%
12%
8%
10%
11%
10%
9%
10%
11%
15%
7%
7%
6%
6%
7%
14%
22%
11%
2%
9%
6%
4%
2%
4%
-
Communication with (other) doctors or nurses 4%5%
4%
3%
-
-
Communication with other palliative care staff 3%8%
-
3%
1%
6%
3%
2%
3%
6%
Control of pain
42%
Managing depression
10%
Ability to meet patient's emotional needs
10%
Uncertainty about what is best care
22%
18%
Ability to meet patient's spiritual needs 10% 6% 13%
Legal concerns
Other
6% 7%
3%
16%
18%
10% 12% 9%
Communication with family 8% 14%
14%
12%
11%
6. Please rank the following in order from 1 to 10, where 1 is the most challenging issue you as a physician or nurse face in caring for a
patient who has a chronic or life-limiting illness and 10 is the least challenging issue. If you have no other issue to add, please check 10
for ‘other’.
Base: All respondents (Physician n=286)
35
Challenges in Caring for a Patient with Chronic or Life-Threatening Illness
Nurses
 Nurses also rank control of pain as the most challenging issue they face in caring for palliative patients, even
more so than physicians (50% ranked it first). Managing depression and the patient’s emotional needs are also
in the top challenges that nurses face.
Nurses
% Rank 1
Rank 1
Control of pain
Managing depression
Ability to meet patient's emotional needs
Communication with family
Rank 2
50%
10%
8%
22%
23%
7% 9%
15%
Ability to meet patient's spiritual needs 6% 8% 12%
Rank 3
12% 8%
21%
16%
ON
QB
West
Atl
41%
63%
59%
24%
15%
13%
4%
6%
8%
-
8%
24%
12%
4%
6%
-
8%
8%
3%
6%
4%
4%
7%
6%
7%
4%
2%
12%
-
4%
-
-
-
-
-
-
Uncertainty about what is best care 5% 10% 10%
Communication with (other) doctors or nurses
Legal concerns
8% 4%
2%8%
Communication with other palliative care staff 3%4%
Other
6. Please rank the following in order from 1 to 10, where 1 is the most challenging issue you as a physician or nurse face in caring for a
patient who has a chronic or life-limiting illness and 10 is the least challenging issue. If you have no other issue to add, please check 10
for ‘other’.
Base: All respondents (Nurses n=200)
36
Perceived Early Introduction of Palliative Approach to Care
 There is strong agreement among GP/FPs, even stronger agreement among nurses, that initiating a palliative
approach earlier in the illness trajectory has a positive impact on patient care, except on patient survival.
 Quebec FPs are more likely to see a positive impact on depressive symptoms than Ontario GPs.
% Positive
Positive
Symptom
management
Patient quality of life
(QOL)
Patient satisfaction
with care
Quality of care
outcomes
Likelihood of patients
dying at home
Depressive symptoms
Little to No Impact
93%
GPs
Don't Know
Total
ON
QB
West
Atl
5%
93%
92%
97%
93%
83%
96%
94%
100%
94%
100%
90%
87%
94%
89%
94%
91%
93%
92%
88%
88%
90%
88%
95%
87%
94%
5%
91%
90%
96%
86%
100%
6% 7%
86%
84%
92%
82%
89%
93%
96%
92%
88%
100%
96%
Nurses
GPs
90%
Nurses
91%
GPs
90%
Nurses
91%
5%
5%
86%
GPs
93%
Nurses
GPs
81%
10% 8%
81%
82%
82%
80%
78%
Nurses
81%
11% 7%
81%
81%
79%
82%
88%
GPs
76%
6% 11% 7%
76%
71%
87%
73%
78%
Nurses
77%
6% 8% 9%
77%
76%
79%
74%
82%
7%
33%
32%
29%
32%
50%
36%
43%
29%
37%
24%
GPs
Patient survival
Negative
Nurses
33%
36%
58%
47%
14%
Values 4% and below not labeled
12. Do you believe that initiating a palliative approach earlier in the illness trajectory (ie. Before someone is designated as “dying” or
within the last weeks/months of life) has a positive impact, negative impact or little to no impact on the following:
Base: All respondents (Physician n=286); (Nurses n=200)
37
Most have not heard of the surprise question:
“ Would you be surprised if this patient died with 6-12 months?”
68%
33%
% Yes
Total
ON
QB
West
Atl
No
QUALITATIVELY, While most have not heard of
it, most felt it would be useful.
Yes
Participants generally responded positively to
the question, with the small number who had
heard of it and used it saying that it has helped
them in decisions.
69%
31%
GP/FPs
Nurses
33%
35%
26%
33%
39%
31%
39%
25%
33%
12%
I think it is a very simple question to start us thinking.
A minority did not find the question useful and
felt uncomfortable with having to answer this
type of question or felt wording should be
more definite e.g. expected to die, not just
surprised.
One of the hardest thing about palliative care is
prognostication because it is so unpredictable. I
find [this question] very useful […] and it really
helps me guide how I deal with patients.
To help you assess whether palliative care or an Advance
Care Plan is relevant for patients, it is suggested that they
consider the following prognostication question: “Would
you be surprised if this patient died in the next six to twelve
months?”
21. Have you heard of this ‘surprise question’ before today?
Base: All respondents (Physician n=286); (Nurses n=200)
38
Usefulness of Surprise Question
 Almost nine in ten GP/FPs and nurses feel the surprise question is at least somewhat useful to assess whether
palliative care is relevant and whether an ACP is relevant for patients, however these scores are fairly soft with
the majority of responses saying the surprise question is only somewhat useful for palliative care or an ACP.
% Useful
Do you feel the ‘surprise question’ is a useful way to assess…
Total
ON
QB
West
Atl
85%
88%
79%
84%
89%
88%
88%
83%
92%
88%
10%
88%
89%
84%
90%
83%
12%
87%
84%
88%
86%
94%
Palliative Care
GPs
28%
Nurses
29%
Advance Care Plan
Very
0% useful
Somewhat useful
GPs
35%
Nurses
33%
57%
12%
59%
Not very useful
11%
Not at all useful
53%
53%
22. Do you feel the surprise question is a useful way to assess whether palliative care is relevant for patients?
23. Do you feel the surprise question is a useful way to assess whether an Advance Care Plan is relevant for
patients?
Base: All respondents (Physician n=286); (Nurses n=200)
39
Useful Resources
 GP/FPs indicate that accredited education sessions on pain and symptom management would be most useful
to increasing their capacity to provide palliative care (80%) . This is followed by palliative care nurses (68%) ,
and access to a palliative care physician for telephone advice (65%). Many physicians believe that an online toolkit for ACP (65%) and ACP conversation starters would be useful (45%).
 Nurses are also interested in the above resources to increase capacity to provide palliative care, and in addition
report interest in an online tool-kit for ACP (77%).
GPs
ON
QB
West
Atl
87%
75%
76%
78%
81%
79%
82%
82%
68%
73%
74%
33%
81%
71%
83%
59%
65%
62%
68%
62%
70%
44%
59%
67%
65%
53%
65%
72%
68%
61%
44%
83%
75%
78%
59%
64%
60%
51%
44%
51%
33%
45%
35%
49%
55%
41%
50%
66%
63%
62%
59%
49%
43%
46%
56%
52%
54%
61%
41%
47%
45%
41%
50%
71%
50%
67%
65%
Nurses
80%
81%
A series of accredited education sessions on pain and
symptom management in palliative care
68%
77%
Palliative care nurses to liaise with you and support
community nursing services
Access to a palliative care physician 24/7 for telephone
advice
An online tool-kit for Advance Care Planning
An on-call system so that you personally do not have to be
available 24/7
Paper based tools and information
Mentorship from a palliative care physician
Conversation starters for an Advance Care Plan
77%
57%
43%
48%
63%
47%
54%
45%
64%
25. Which of the following resources would you find most useful to increase your capacity to provide palliative care?
Base: All respondents (Physician n=286); (Nurses n=200)
40
Next steps
• Revised National Framework, available now
• Ongoing discussions and priority setting with stakeholders to inform
final draft
• Organizations and individuals to champion elements of the
Framework
• Targeted efforts to engage various settings, sectors and providers:
• Reaching out to caregivers through the Canadian Home Care
Association
• Supporting “Speak Up” and efforts to promote Advance Care Planning
• Primary care (GP/FP and nurses) and oncologists/oncology nurses
survey report – national and regional
• Building the repository with tools and resources
• Ongoing activity through social media channels
41
Imagine a new reality, where hospice
palliative care is available to
Canadians when and where they
need it; where living well until
death is the goal of care.
Now imagine a plan to get there.
What can you do to integrate a
palliative approach to care across
all settings of care?
42
Thank You!
Resources available at
www.hpcintegration.ca
43
APPENDIX slides
44
Background and Objectives
Background:
In recognition of a growing gap between the end-of-reality and the availability
of hospice palliative and end-of-life care services as the population ages, The
Way Forward Initiative was developed to start up dialogue with professionals
and governments in all settings and sectors to shape a national Framework to
move forward with community-integrated hospice palliative care across all
health care settings.
Objectives:
The objective was to engage Canadians and understand attitudes toward
hospice palliative and end-of-life care when faced with a life-limiting illness or
aging with chronic diseases. This research will guide CHPCA to more specific
topics for discussion as the national Framework is developed to integrate
palliative care across settings at the community level.
45
Methodology
•
A total of 2,976 online surveys with Canadian adults. The survey sample included:
PE
NS
NB
NL
QC
ON
MB
SK
AB
BC
Total
Male
31
50
50
50
50
50
50
50
50
50
481
Female
29
49
50
50
51
50
50
50
50
50
479
Male
28
50
50
51
50
53
50
50
50
50
482
Female
60
50
50
50
50
50
50
50
50
50
510
Male
63
50
50
50
50
50
50
50
50
51
514
Female
60
50
50
50
50
50
50
50
50
50
510
271
299
300
301
301
303
300
300
300
301
2,976
18-34
35-54
55+
Total
•
•
•
The survey was completed using Harris/Decima’s proprietary online panel. As such, we are precluded from
reporting a margin of error.
Data were collected between July 5th and August 7th, 2013 and the survey length averaged 15 minutes.
The survey data were weighted using the 2011 Census to reflect the general population according to variables such
as gender, age and region.
46
Research Objectives
 There are 37 organizations that guide the Canadian Hospice Palliative Care Association, of which the collective
goal is to develop a national framework to promote The Way Forward, an integrated palliative approach to care
that focuses on the person and the family, and on their qualify of life through an illness – not just at the end of
life.
 The Canadian Hospice Palliative Care Association commissioned Ipsos Reid to conduct a research program with
the main objective of exploring and defining how family/general physicians currently handle approaching
palliative care with their patients.
 Initial qualitative research included:
 Focus groups (2) in three urban centres (Calgary, Toronto, Montreal)
 Ideation sessions (3) in rural regions (rural east, rural north, and rural west)
 The first quantitative phase research involves a survey among general practitioners/family physicians in Canada,
as well as nurses/nurse practitioners in Canada working in primary care.
 A second quantitative phase involves conducting a survey among Oncologists in Ontario and Quebec, and nurses
working in Oncology in Ontario and Quebec who belong to the Canadian Association of Nurses in Oncology
(CANO).
 The main objectives of the quantitative phases are to:
 Quantitatively validate, and build upon, the insights gathered from the qualitative phase;
 Probe how physicians and nurses handle patients who may be considered palliative; and,
 Identify potential barriers to discussing palliative care earlier in the illness trajectory.
47
Phase 1: Qualitative Methodology
Focus groups in urban centers
•
Calgary, Toronto and Montreal
•
2 focus groups per city
•
Focus groups in Montreal comprised French speaking doctors
•
Conducted between February 3rd – 4th, 2014
Ipsos Ideation sessions in rural regions
Ideation
Exchange
Ipsos Reid Qualitative Researcher
•
Rural east, rural north & central and rural west
•
1 session per region
•
Conducted on February 13rd, 2014
Profile of participants
•
General Practitioners and Family Physicians who have at least
monthly experience of managing/referring palliative patients
•
Maximum of 2 physicians per group/session from a Family Health
Team, Family Care Clinic or Family Medicine Group
•
Mix of men and women
•
Mix of years of practicing medicine in Canada
48
Phase 2: Quantitative Methodology
 Survey of GP/FP and Nurses in Primary Care
 Online survey of n=286 general practitioners/family physicians across Canada conducted between April 24
and May 12, 2014. A sample size of n=286 yields a credibility interval of +/- 6.6%, 19 times out of 20.
Interviews stratified as follows: British Columbia (n=31), Alberta (n=24), Manitoba/Saskatchewan (n=14),
Ontario (n=102), Quebec (n=96), Atlantic Canada (n=18), North (n=1)
─ Sub-group analysis of physicians in Ontario and Quebec provided where appropriate.
─ Overall data has been weighted to reflect true regional distribution of GP/FPs.
 Online survey of n=200 nurses in primary care settings across Canada conducted between April 24 and May
27, 2014. A sample size of n=200 yields a credibility interval of +/- 7.9%, 19 times out of 20. Interviews
stratified as following: British Columbia (n=xx), Alberta (n=xx), Manitoba/Saskatchewan (n=xx), Ontario
(n=xx), Quebec (n=xx), Atlantic Canada (n=xx).
─ Sub-group analysis among nurses in Ontario provided where appropriate.
49