canadian hospice palliative care association the way forward initiative - topline results (national...

Canadian Hospice Palliative Care AssociationThe Way Forward Initiative - Topline Results (National vs. Ontario) February 7, 2014

Objectives and Methodology

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 towardhospice palliative and end-of-life care when faced with a life-limiting illness oraging with chronic diseases. This research will guide CHPCA to more specifictopics for discussion as the national Framework is developed to integratepalliative care across settings at the community level.

Methodology• A total of 2,976 online surveys with Canadian adults. The survey sample included:

• 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.

PE NS NB NL QC ON MB SK AB BC Total

18-34Male 31 50 50 50 50 50 50 50 50 50 481

Female 29 49 50 50 51 50 50 50 50 50 479

35-54Male 28 50 50 51 50 53 50 50 50 50 482

Female 60 50 50 50 50 50 50 50 50 50 510

55+Male 63 50 50 50 50 50 50 50 50 51 514

Female 60 50 50 50 50 50 50 50 50 50 510

Total 271 299 300 301 301 303 300 300 300 301 2,976

Current Health and Health Care Behaviour

Ontario

National

0% 20% 40% 60% 80% 100%

18%

16%

36%

38%

33%

32%

11%

10%

3%

3%

Excellent Very good Good Fair Poor

In general, would you say your health is excellent, very good, good, fair or poor?

Perceived Health Condition

Base: All respondents (n=2,976)

Question 1

Ontario

National

60% 80% 100%

90%

86%

10%

14%

Yes No

Do you have a health care provider, as in, a family physician or regular place of care?

Health Care Provider


Question 2

Don't know

6 times or more

4 - 5 times

2 - 3 times

Once

None

0% 20% 40% 60%

1%

13%

16%

37%

23%

10%

1%

12%

16%

38%

25%

8%

National Ontario

In the past 12 months, how many times have you visited your family physician or regular place of care?

Frequency of Visiting Health Care Provider

Base: Those who have a health care provider (n= 2,617)

Question 3

Ontario

National

0% 20% 40% 60% 80% 100%

18%

18%

26%

25%

15%

14%

41%

43%

Yes, myself only Yes, family member only Yes, myself and family member No

Do you or a family member have a chronic health condition?

Chronic Health Condition


Question 4

Immune deficiency

Alzheimer/dementia

Organ failure

Neurodegenerative disease

Cancer

Diabetes

Lung disease

Heart disease/Hypertension

-10% 0% 10% 20% 30%

1%

8%

3%

4%

12%

18%

11%

15%

1%

1%

2%

2%

3%

10%

10%

15%

Yes, myself Yes, family member

Do you or a family member have a chronic health condition?

Chronic Health Condition

Base: Those with a chronic illness personally or immediate family (n=1,751)

Question 4

-10% 0% 10% 20% 30%

2%

11%

4%

6%

13%

19%

11%

16%

1%

1%

1%

3%

4%

11%

9%

15%

National Ontario

Ontario

National

0% 20% 40% 60% 80% 100%

33%

32%

67%

68%

Yes No

Do you have a chronic health condition?

Chronic Health Condition – Personal


Question 4

Ontario

National

0% 20% 40% 60% 80% 100%

25%

23%

75%

77%

Yes No

Have you been hospitalized in last year?

Hospitalization in Last Year – Personal

Base: Those who have a chronic health condition listed in Q4 (n=939)

Question 4a

Ontario

National

0% 20% 40% 60% 80% 100%

41%

39%

59%

61%

Yes No

Do you have a family member with a chronic health condition?

Chronic Health Condition – Family Member


Question 4

Ontario

National

0% 20% 40% 60% 80% 100%

36%

33%

64%

67%

Yes No

Has that family member been hospitalized in last year?

Hospitalization in Last Year – Family Member

Base: Those with a family member who has a chronic health condition listed in Q4 (n=1,241)

Question 5

Ontario

National

0% 20% 40% 60% 80% 100%

41%

43%

59%

57%

Yes No

Have you had an immediate family member die in the past 10 years?

Death of Immediate Family Member in Past 10 Years


Question 6

Other

Hospice

Care facility

Nursing/seniors/ retirement home

At home

In a hospital

0% 20% 40% 60% 80% 100%

3%

1%

5%

9%

19%

61%

5%

2%

5%

7%

19%

62%

National Ontario

Thinking of the most recent time an immediate family member died, did this family member die at home, in a hospital, or another setting?

Setting of Family Member Death

Base: Those with an immediate family member who died in the past 10 years (n=1,327)

Question 7

As far as you are aware, did this setting match the preference of the family member?

Setting of Death: Match Preference?Question 8

Ontario

National

0% 20% 40% 60% 80% 100%

76%

73%

24%

27%

Yes No


Reason for Family Member Death Not Matching Preference

Don't knowOther

Lack of treatment/care may have hastened deathShould have been in hospital/receiving proper care

They suffered/were in pain/died slowlyThe setting wasn't suitable

They preferred to be in a nursing home/care facilityThey died too young/too soon

They had a serious ailment (general)They did not want to go to/die in a nursing home

They didn't want to die alone/without family presentDeath was accidental/unexpected/sudden

They wanted to die at home/not die in hospital

0% 20% 40% 60% 80%12%

3%

3%3%

7%

17%58%

10%6%

1%1%1%1%2%2%3%4%4%

17%54%

National Ontario

Why did the setting of the family member’s death not match their preference?Question 9

Responses shown only if 1% or greater. Responses less than 1% are rolled up into ‘Other’.

Base: Those with a family member whose death did not match their preference (n=346)

Ontario

National

0% 20% 40% 60% 80% 100%

28%

27%

52%

50%

21%

24%

It was free of pain and symptomsThere was some pain, but it was managed wellThere were some issues relating to pain and symptom management

Thinking of the family member who passed away, which of the following best describes their end-of-life experience?

Perceived End-of-Life Experience of Family Member


Question 10

Attitudes Towards Sickness and End-of-Life

Ontario

National

0% 20% 40% 60% 80% 100%

12%

11%

36%

35%

34%

36%

12%

13%

6%

5%

Excellent Very good Good Fair Poor

Thinking about 10 years from now, please describe your expected health condition.


Question 11

Expected Health Condition 10 Years From Now

Ontario

National

0% 20% 40% 60% 80% 100%

76%

74%

24%

26%

Yes No

Do you ever think about end-of-life?


Question 12

Thoughts About End-of-Life

Ontario

National

0% 20% 40% 60% 80% 100%

76%

75%

13%

14%

11%

12%

Home Hospital Other health care facility

When thinking about end-of-life, is your preference to die in your home, in a hospital, or another health care facility?

Base: Valid respondents (n=1,691)

Question 13

End-of-Life Care Setting Preferences

Ontario

National

0% 20% 40% 60% 80% 100%

56%

52%

25%

26%

19%

22%

Home Hospital Other health care facility

When thinking about end-of-life, is your preference to die in your home, in a hospital, or another health care facility?

Base: Valid respondents (n=1,772)

Question 14

End-of-Life Care Setting Expectations

Have you ever talked to a family member, doctor, lawyer, friend, or financial advisor about your end-of-life care preferences?

Discussion About End-of-Life PreferencesQuestion 15

No

Yes, financial advisor

Yes, doctor

Yes, lawyer

Yes, friend

Yes, family member

0% 20% 40% 60%

51%

6%

5%

8%

13%

36%

55%

5%

5%

7%

11%

34%National Ontario

Note: This is a multiple choice response


Have talked about end-of-life care preferences with anyone: National: 45%Ontario: 49%

In your opinion, how important is it to discuss one’s end-of-life care with…?

Importance of Discussion About End-of-Life Preferences NationalQuestion 16

Financial advisor

Lawyer

Friend

Health care provider

Family member

0% 20% 40% 60% 80% 100%

10%

13%

16%

21%

57%

19%

23%

25%

29%

27%

34%

31%

34%

31%

13%

20%

18%

17%

10%

2%

17%

15%

8%

8%

3%

Extremely important Very important Somewhat important Not very importantNot at all important


% Had Discussion

34%

5%

11%

7%

5%

T2B% Total

83%

51%

40%

36%

29%

In your opinion, how important is it to discuss one’s end-of-life care with…?

Importance of Discussion About End-of-Life Preferences OntarioQuestion 16

Financial advisor

Lawyer

Friend


Family member

0% 20% 40% 60% 80% 100%

12%

15%

18%

23%

62%

20%

26%

24%

30%

23%

36%

32%

33%

33%

11%

16%

15%

17%

8%

2%

16%

12%

7%

6%

2%

Extremely important Very important Somewhat important Not very importantNot at all important

Base: Ontario respondents only (n=303)

% Had Discussion

36%

5%

13%

8%

6%

T2B% Total

84%

53%

42%

41%

32%

In my culture, we avoid talking about death

Nothing I can do about it so why bother

Not enough knowledge about options to discuss

I'm feeling healthy so I don't have a reason to think about it

Creeps me out and makes me feel uncomfortable

Don’t want to upset family members

Afraid of death

0% 20% 40% 60% 80% 100%

10%

10%

10%

16%

17%

17%

24%

13%

18%

23%

26%

21%

31%

21%

25%

33%

37%

28%

26%

28%

24%

25%

24%

19%

18%

18%

15%

16%

27%

15%

11%

11%

17%

9%

16%

Extremely strong reason Very strong reason Somewhat strong reason Not a strong reason Not a strong reason at all

0% 20% 40% 60% 80% 100%

12%

12%

11%

21%

18%

19%

27%

13%

21%

23%

26%

22%

31%

21%

23%

33%

40%

26%

26%

26%

22%

27%

21%

16%

17%

18%

16%

15%

25%

13%

10%

11%

16%

8%

15%

How strong do you think each of the following is for explaining why people might be reluctant to discuss end-of-life care?

Reasons for Reluctance to Discuss End-of-Life Care


Question 17

National Ontario

T2B

48%

50%

40%

42%

33%

28%

23%

T2B

45%

48%

39%

47%

34%

33%

25%

Knowledge and Attitudes Towards Hospice Palliative Care

Ontario

National

0% 20% 40% 60% 80% 100%

51%

49%

49%

51%

Yes No

Awareness of Hospice Palliative Care Services


Question 18One 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?

Ontario

National

0% 20% 40% 60% 80% 100%

32%

28%

22%

25%

22%

20%

12%

15%

9%

10%

2%

2%

Supportive palliative care Hospice palliative care Supportive end-of-life careEnd-of-life care Hospice supportive care Other

Term Associated with Hospice Palliative Care Services


Question 19What term would you associate with this type of service?

Ontario

National

0% 20% 40% 60% 80% 100%

58%

62%

42%

38%

Yes No

Awareness of Term ‘Hospice Palliative Care’


Have you heard the term hospice palliative care before today?

Question 20

Knowledge of Hospice Palliative Care Services

Base: Those who have heard the term Hospice Palliative Care before today (n=1,793)

*Comparable tracking data is not available

Thinking of the past decade, do you feel that your knowledge of hospice palliative care has increased, decreased or remained the same?

Question 21

Ontario

National

0% 20% 40% 60% 80% 100%

52%

48%

41%

43%

5%

4%

2%

4%

Knowledge has increased Knowledge has remained the same Knowledge has decreasedDon't know

In your own home/patients home

In some other facility in your community

In a hospital

In a long term facility or nursing home

0% 20% 40% 60% 80% 100%

51%

60%

56%

72%

49%

57%

63%

74%

National Ontario

Knowledge of Locations Hospice Palliative Care is Offered

To the best of your knowledge, is hospice palliative care offered in the following locations?% Yes


Question 22

Services Included in Hospice Palliative Care

To the best of your knowledge, does hospice palliative care include any of the following?% Yes

Assisted suicide or hastening death

Legal services and estate planning

Home-making such as help with household tasks

Spiritual care (values, beliefs, rituals)

Advance care planning

Psychological support (depression, anxiety)

Personal care (bathing, grooming and dressing)

Medical services (pain/symptom management)

0% 20% 40% 60% 80% 100%

12%

36%

57%

63%

69%

81%

83%

85%

16%

35%

56%

67%

73%

82%

84%

88%

National Ontario

Question 23


Ontario

National

0% 20% 40% 60% 80% 100%

44%

47%

19%

19%

37%

34%

To all people at the end of their life regardless of their illnessOnly patients dying of a life threatening disease like cancer or HIV/AIDSDon't know

Type of Patient of Hospice Palliative Care


Question 24

To your knowledge, are hospice palliative care services available for…?

Sources of Information on Hospice Palliative Care

If you were in need of information of hospice palliative care services, to which of the following sources would you go for information?

Other

Online/web site (unspecified)

A pharmacist

A provincial telephone or tele-health service

A public health or community nurse

A community health centre

Family physician

0% 20% 40% 60% 80%

4%

5%

8%

24%

31%

38%

73%

3%

5%

9%

26%

28%

40%

73%

National

Ontario

Question 25

Responses shown only if greater than 1%. Responses 1% or less are rolled up into ‘Other’.


Views on Planning for End-of-Life Care


Which of the following statements comes closer to the way you feel?

Question 26

Ontario

National

0% 20% 40% 60% 80% 100%

52%

52%

14%

12%

16%

15%

18%

20%

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 illnessPeople 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

Ontario

National

0% 20% 40% 60% 80% 100%

20%

21%

80%

79%

Yes No

Usage of Hospice Palliative Care Services


Have you or a family member ever used hospice palliative care services?

Question 27

Estimated Hours Per Week to Care For Dying Family Member in Home

How many hours per week do you think it would take to care for a dying family member in your home?


Ontario

National

0% 20% 40% 60% 80% 100%

1%

1%

13%

12%

13%

13%

32%

33%

17%

16%

8%

7%

5%

6%

2%

2%

11%

9%

0 1 to 12 13 to 24 25 to 48 49 to 72 73 to 96 97 to 120 121 to 144 145 to 168

Mean

54.4

56.4

Question 28

Ontario

National

0% 20% 40% 60% 80% 100%

37%

35%

63%

65%

Yes No

Devoting Time To Dying Loved One Given Current Schedule


Question 29Do you think you could devote this much time to caring for a dying family member, given your current schedule?

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?

Support for Hospice Palliative CareQuestion 30

Ontario

National

0% 20% 40% 60% 80% 100%

68%

66%

28%

30%

2%

2%

1%

2%

Very supportive Somewhat supportive Somewhat opposed Very opposed


0% 20% 40% 60% 80% 100%

44%

44%

50%

54%

53%

46%

50%

45%

40%

41%

9%

5%

5%

4%

4%

1%

1%

1%

2%

2%

Ontario

A palliative care approach could and should be integrated into care for all people with chronic, life-limiting conditions

A palliative care approach should be provided in a setting of the patient's choice

A palliative care approach improves quality of life for patients

A palliative care approach should involve all care providers including primary care, chronic care and long-term care practitioners

A palliative care approach greatly reduces the stress and burden placed on the patient's family

0% 20% 40% 60% 80% 100%

42%

42%

48%

49%

52%

49%

51%

46%

45%

42%

8%

5%

5%

5%

5%

2%

2%

1%

1%

2%

NationalStrongly agree Agree Disagree Strongly disagree

Please tell me if you strongly agree, agree, disagree or strongly disagree with each of the following statements.

Agreement with Statements About Hospice Palliative Care (Top Half)Question 31


In a health care system that has limited resources, it would be wrong to divert more money to end-

of-life

Palliative care should only be implemented once active treatment has been stopped

A palliative care approach results in lower healthcare costs

A palliative care approach should be available early in the course of a disease to address each patient's

needs

A palliative care approach helps a patient manage their choices along the way

0% 20% 40% 60% 80% 100%

9%

11%

23%

32%

37%

22%

30%

49%

55%

56%

44%

44%

23%

10%

6%

26%

14%

6%

3%

2%

NationalStrongly agree Agree Disagree Strongly disagree

0% 20% 40% 60% 80% 100%

9%

11%

24%

36%

38%

24%

26%

50%

51%

56%

45%

46%

21%

9%

5%

22%

17%

6%

3%

1%

OntarioPlease tell me if you strongly agree, agree, disagree or strongly disagree with each of the following statements.

Agreement with Statements About Hospice Palliative Care (Bottom Half)

Question 31


Ontario

National

0% 20% 40% 60% 80% 100%

37%

35%

37%

38%

21%

23%

2%

2%

2%

2%

Far too little priority is placed on hospice palliative careA bit too little priority is placed on hospice palliative careAbout the right priority is placed on hospice palliative careA bit too much priority is placed on hospice palliative careFar too much priority is placed on hospice palliative care

Priority Placed on Hospice Palliative Care


Question 32Right now, do you think provincial governments place the right amount of priority on hospice palliative care compared to other parts of the health care system?

Expectations of Hospice Palliative Care

Homemaking services

Personal care

Spiritual care

Social care

Advocacy and care-coordination

Psychological care

Medical care

0% 20% 40% 60% 80% 100%

14%

16%

16%

18%

19%

34%

44%

54%

56%

34%

46%

52%

44%

46%

26%

22%

20%

24%

20%

10%

7%

6%

5%

30%

12%

9%

12%

4%

NationalProfessional only Both professional and family Family member Will not need this care

0% 20% 40% 60% 80% 100%

14%

17%

17%

15%

21%

32%

45%

58%

58%

34%

48%

54%

47%

45%

24%

20%

20%

26%

16%

10%

7%

5%

5%

29%

12%

8%

11%

3%

Ontario

For each of the following, in thinking about your final months of life, do you expect this kind of care will be provided by a professional, by a family member, by both a professional and a family member, or do you expect you will not need this kind of care?

Expectations of Providers for Hospice Palliative CareQuestion 33


Ontario

National

0% 20% 40% 60% 80% 100%

12%

11%

55%

52%

33%

37%

I am currently involved in the care of one or more of my family membersI am not currently, but in the future I expect to play a role in the care of one or more of my family membersI am not currently involved in the care of any of my family members and I do not expect to be in the future

Expectations for Providing Care to Family Members


Question 34Which of the following describes your situation?

Current State of Advance Care Planning

Ontario

National

0% 20% 40% 60% 80% 100%

21%

21%

79%

79%

Yes No

Before today, had you heard of the term Advance Care Planning?

Unaided Awareness of Advance Care Planning


Question 35

Ontario

National

0% 20% 40% 60% 80% 100%

48%

47%

52%

53%

Yes No

[After definition given]Are you aware of Advance Care Planning?

Aided Awareness of Advance Care Planning

Base: Respondents who have not heard of the term Advanced Care Planning (n=2,322)

Question 36

%National

%Ontario

Yes, unaided 21% 21%

Yes, aided 37% 38%

No 42% 41%

Where do you think you would go to get information about advance care planning?

Sources of Information for Advance Care PlanningQuestion 37

Don't know

Other

Friend

Financial advisor

Family

Pamphlet

Lawyer

Internet


0% 20% 40% 60% 80%

11%

11%

15%

18%

24%

29%

43%

64%

14%

3%

12%

14%

20%

23%

25%

41%

60%

National Ontario


Ontario

National

0% 20% 40% 60% 80% 100%

13%

13%

87%

87%

Yes No

Have you prepared an advance care plan?

Preparation of Advance Care Plan


Question 38

Ontario

National

0% 20% 40% 60% 80% 100%

67%

64%

33%

36%

Yes No

Do you expect you'll put an advance care plan together in the future?

Expectation of Preparation of Advance Care Plan

Base: Respondents who have not prepared an advance care plan (n=2,592)

Question 39

%National

%Ontario

Yes, prepared 13% 13%

No, but will 55% 59%

No, and will not 32% 28%

0% 20% 40% 60% 80% 100%

23%

25%

29%

35%

34%

53%

38%

38%

40%

34%

40%

29%

29%

28%

24%

22%

22%

14%

7%

6%

5%

6%

2%

3%

2%

3%

2%

3%

3%

1%

Ontario

Caregivers panic and transfer care to a hospital

People don’t make a plan or discuss preferences

People imagine dying suddenly, instead of battling a terminal illness which is what happens more often

Pain management is better handled at a hospital

It is too overwhelming a challenge for the family

As death was imminent, the patient required treatment that could only be provided in a hospital

0% 20% 40% 60% 80% 100%

25%

25%

28%

34%

35%

50%

37%

38%

39%

37%

40%

31%

28%

26%

25%

20%

20%

14%

8%

7%

5%

6%

3%

3%

3%

3%

3%

3%

2%

2%

NationalLikely a very strong influence Likely a strong influence Likely a modest influence Likely a weak influenceNot likely an influence at all

Studies have shown that most Canadians prefer to die at home. However, the reality is that a hospital is where 70% of deaths occur in Canada. How strong an influence do you think each of the following play in why people end up dying at a hospital despite a preference to die at home?

Reasons Why Deaths Occurring in Hospital (Top Half)Question 40


0% 20% 40% 60% 80% 100%

14%

19%

16%

18%

22%

23%

26%

24%

36%

30%

36%

31%

37%

32%

29%

34%

30%

33%

15%

19%

11%

12%

9%

9%

7%

6%

8%

6%

3%

5%

Ontario

*People change their minds and decide they would prefer their end-of-life care occur in a hospital instead

*People change their minds and decide they would prefer their end-of-life occur in a hospital instead

Patients’ preferences are forgotten or unknown

Interference by medical professionals

Interference by family members

People are uncomfortable with having a deceased person in their home

0% 20% 40% 60% 80% 100%

14%

16%

19%

20%

22%

25%

29%

27%

36%

32%

39%

31%

34%

33%

30%

32%

28%

29%

16%

18%

10%

11%

8%

10%

7%

7%

5%

5%

3%

5%

NationalLikely a very strong influence Likely a strong influence Likely a modest influence Likely a weak influenceNot likely an influence at all

Studies have shown that most Canadians prefer to die at home. However, the reality is that a hospital is where 70% of deaths occur in Canada. How strong an influence do you think each of the following play in why people end up dying at a hospital despite a preference to die at home?

Reasons Why Deaths Occurring in Hospital (Bottom Half)Question 40


*Indicates a split sample

For more information:Doug Anderson, Senior Vice [email protected]: 613-751-5052

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health care settings

chronic health conditionbase

health care provider

perceived health conditionbase

immediate family n

integratepalliative

respondents n

chronic illness