1. 1 How can we move toward an integrated palliative approach to care? PEI Palliative Care Conference Leanne Kitchen Clarke June 12, 2014

2. 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

3. Program Disclosure of Commercial Support No connection/support received for the development of this presentation 3

4. Mitigation of bias No mitigation of bias required for this presentation 4

5. One other disclosure…. 5

6. 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

7. 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

8. 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 Funding 8

9. 9 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.

10. The National Framework Next draft 10

11. 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 Federal/provincial/territorial governments o Regional programs o HPC programs/providers o Primary care, home care, acute care, long-term care 11

12. 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.12

13. 13 The challenge for palliative care: differing trajectories

14. 14 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’

15. Integrating the palliative approach… Focuses on improving quality of life of people with serious life- limiting 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

16. What do Canadians across Canada and PEI think about hospice palliative care, ACP and expectations about dying? 16

17. Awareness of Hospice Palliative Care Services Base: All respondents (n=2,976) 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? 17

18. Type of Patient of Hospice Palliative Care Base: All respondents (n=2,976) Question 24 To your knowledge, are hospice palliative care services available for…? 18

19. Knowledge of Locations Hospice Palliative Care is Offered To the best of your knowledge, is hospice palliative care offered in the following locations? % Yes Base: All respondents (n=2,976) Question 22 19

20. 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 Care Question 30 Base: All respondents (n=2,976) 20

21. 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 21

22. 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? Base: Valid respondents (n=1,772) Question 14 End-of-Life Care Setting Expectations 22

23. Have talked about end-of- life care preferences with anyone: National: 45% Prince Edward Island: 45% 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 Preferences Question 15 Note: This is a multiple choice response Base: All respondents (n=2,976) 23

24. Views on Planning for End-of-Life Care Base: All respondents (n=2,976) Which of the following statements comes closer to the way you feel? Question 26 24

25. % Had Discussion In your opinion, how important is it to discuss one’s end-of-life care with…? Importance of Discussion About End-of-Life Preferences Prince Edward Island Question 16 Base: All respondents (n=2,976) T2B % Total 25

26. T2B 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 Base: All respondents (n=2,976) Question 17 National T2B 48% 50% 40% 42% 33% 28% 23% Prince Edward Island 26

27. 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? Question 25 Responses shown only if greater than 1%. Responses 1% or less are rolled up into ‘Other’. Base: All respondents (n=2,976) 27

28. How ready are primary care providers to adopt a palliative approach? 28

29. How likely is it that you would discussion an ACP? Consistent with the qualitative learning – two-thirds of physicians would consider John palliative. But only 43% are very likely to discuss an ACP. 29 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); Should John be considered palliative? Qualitative Feedback ONQBWestAtl 69%68%55%78% 76%92%77% Total%Yes ONQBWestAtl %Likely GP/FPs78%80%84%94% Nurses84%83%90%94%

30. Advance Care Planning Comfort and Knowledge 30  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. 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); Comfort Discussing Advance Care Planning Knowledge of Advance Care Planning ONQBWestAtl 2%6% 4%- 2%4%3%- 27% 37%67% 40%8%46%35% 32%45% 43%22% 29%54%32%35% 26%16% 13%6% 21%29%15%24% 14%6% 3%6% 8%4%3%6% % Comfortable I have expert knowledge 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 76% 70% ON 69%72% QB 76%50% West 81%80% Atl 83%77%

31. Perceptions of When People Should Start ACPs 31  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. 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) 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. ONQBWestAtl 37%30%53%39% 69%38%68%77% 35%25%29%39% 10%17%14%12% 21%34%14%22% 18%33%16%6% 7%10%4% - 13%2%6%

32. Discussing Advance Care Planning With Older Healthy Patients 32  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 discussion. 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) % Comfortable Total ONQBWestAtl 72%73%66%77%67% 77%83%67%76%82% % Would Total ONQBWestAtl 79% 64%86%94% 82%89%63%86%94%

33. Confidence with Patient/Family Interactions GP/FPs 33 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)  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. ONQBWestAtl 42%59%54%72% 45%53%50%61% 36%53%50%72% 43%38%49%61% 36%51%45%56% 37%42%47%61% 37%44%41%56% 32%50%41%61% 36%30%51%33% 25%35%29%39% 28%26%32%50% 21%39%28%44% 18%30%18%39% % Confident to perform independently Values 4% and below not labeled Managing reports of constipation Answering questions about the effects of certain medications Reacting to reports of pain from the patient Supporting the patient or family member when they become upset Answering patients questions about the dying process Discussing different environmental options (eg hospital, home, family) Patient/family interactions and clinical management Managing nausea / vomiting Discussing patients wishes for after their death Managing limited patient decision-making capacity Informing people of the support services available Managing terminal dyspnea (breathlessness) Managing terminal delirium

34. Confidence with Patient/Family Interactions Nurses 34 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)  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. ONQBWestAtl 60%46%57%71% 29%58%59% 45%46%44%53% 48%42%44%53% 48%33%47%35% 53%17%41%59% 46%29%39%53% 47%25%39%41% 45%13%35%53% 42%17%39%35% 30%17%27%35% 27%4%22%29% 18%17%15%24% % Confident to perform independently Values 4% and below not labeled Managing reports of constipation Supporting the patient or family member when they become upset Answering questions about the effects of certain medications Reacting to reports of pain from the patient Answering patients questions about the dying process Discussing patients wishes for after their death Managing nausea / vomiting Informing people of the support services available Discussing different environmental options (eg hospital, home, family) Patient/family interactions and clinical management Managing terminal dyspnea (breathlessness) Managing limited patient decision-making capacity Managing terminal delirium

35. ONQBWestAtl 36%55%41%33% 12%8%10%11% 10%9%10%11% 15%7% 6% 7%14%22% 11%2%9%6% 4%2%4%- 3%-- - 1%6% 3%2%3%6% Challenges in Caring for a Patient with Chronic or Life-Threatening Illness GP/FPs 35  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. 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) GP/FPs % Rank 1

36. ONQBWestAtl 41%63%59%24% 15%13%4%6% 8%- 24% 12%4%6%- 8% 3%6% 4% 7%6% 7%4%2%12% -4%-- ---- Challenges in Caring for a Patient with Chronic or Life-Threatening Illness Nurses 36  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. 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) Nurses % Rank 1

37. TotalONQBWestAtl Symptom management 93%92%97%93%83% 96%94%100%94%100% Patient quality of life (QOL) 90%87%94%89%94% 91%93%92%88% Patient satisfaction with care 90%88%95%87%94% 91%90%96%86%100% Quality of care outcomes 86%84%92%82%89% 93%96%92%88%100% Likelihood of patients dying at home 81%82% 80%78% 81% 79%82%88% Depressive symptoms 76%71%87%73%78% 77%76%79%74%82% Patient survival 33%32%29%32%50% 36%43%29%37%24% Perceived Early Introduction of Palliative Approach to Care 37 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) % Positive Values 4% and below not labeled  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.

38. Most have not heard of the surprise question: “ Would you be surprised if this patient died with 6-12 months?” 38 QUALITATIVELY, While most have not heard of it, most felt it would be useful. 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. 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. % Yes 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) Total 33%31% ON35%39% QB26%25% West 33% Atl 39%12% 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. I think it is a very simple question to start us thinking.

39. Usefulness of Surprise Question 39 Advance Care Plan Palliative Care 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) Do you feel the ‘surprise question’ is a useful way to assess… Total ONQBWestAtl 85%88%79%84%89% 88% 83%92%88% % Useful 88%89%84%90%83% 87%84%88%86%94%  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.

40. Useful Resources 40  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 tool- kit 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%). 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) A series of accredited education sessions on pain and symptom management in palliative care 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 ONQBWestAtl 87%75%76%78% 81%79%82% 68%73%74%33% 81%71%83%59% 68%62%70%44% 59%67%65%53% 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%

41. 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

42. 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

43. Thank You! Resources available at www.hpcintegration.ca 43

44. APPENDIX slides 44

45. 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

46. 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 5 th and August 7 th, 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. PENSNBNLQCONMBSKABBCTotal 18-34 Male 3150 481 Female 294950 5150 479 35-54 Male 2850 51505350 482 Female 6050 510 55+ Male 6350 51514 Female 6050 510 Total 271299300301 303300 3012,976 46

47. 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

48. Phase 1: Qualitative Methodology 48 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 3 rd – 4 th, 2014 Ipsos Ideation sessions in rural regions Rural east, rural north & central and rural west 1 session per region Conducted on February 13 rd, 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 Ipsos Reid Qualitative Researcher Ideation Exchange

49. 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