Inside Palliative Care. Presentation July 8 th, 2008

Transkript

1 Inside Palliative Care Presentation July 8 th, 2008

2 Method Two separate online surveys were conducted in this study. The first survey was among 2,626 adult Canadians, of which 1,212 were close to Palliative Care (meaning a close friend or family member had received Palliative Care). Of these, 356 were involved in providing the care themselves. The second survey was among 237 Registered Nurses, all of which work, to some degree, with Palliative/End-Of-Life Care. For this report, all graphs pertaining to the General Population survey will be shown in blue, while all graphs pertaining to the Nurses survey will be shown in red. 2

3 3 Awareness of Palliative Care

4 Canadians have Heard of but are Unfamiliar with Palliative Care Awareness of Palliative Care Familiarity with Palliative Care Very familiar 16% Not heard of Palliative Care, 14% Somewhat familiar 41% Heard of Palliative Care, 86% Not very familiar 30% Not at all familiar 12% 4 Have you ever heard of the term Palliative/End-of-Life care? How familiar are you with Palliative/End-Of-Life Care? (Base: Total n=2626)

5 Palliative Care is thought to be Care for the Dying Providing comfort to the dying Care for terminally ill/elderly Death Easing the pain of the dying Help people dying peacefully Caring and support for dying and family Incurable illness (cancer, AIDS) Hospices/ nursing homes Special facilities Specialized staff to help in last moments Home provided care for terminally ill Compassionate care Other Don't know 6% 6% 6% 5% 4% 3% 2% 2% 11% 11% 13% 15% 16% 20% 5 When you think of Palliative/End-Of-Life Care, what comes to mind? Anything else? (Base: Total n=2626)

6 Canadians are Not Knowledgeable about Palliative Care but Feel this Knowledge is Important Knowledge of Palliative Care Issues Importance of Knowledge of Palliative Care Issues Very knowledgeable 5% Very important 38% Somewhat knowledgeable 32% Somewhat important 50% Not very knowledgeable 44% Not very important 5% Not at all important Not at all 16% 1% 6 How would you rate your knowledge of Palliative/End-Of-Life Care related issues? How important is it to have a good knowledge of Palliative/End-Of-Life Care related issues? (Base: Total n=2626)

7 Few have Heard of Palliative Care in Media Don't know 6% Have heard of palliative care in media 33% Have not heard of palliative care in media 61% 7 Have you ever heard anything in the news about the state of Palliative Care in Canada? (Base: Total n=2626)

8 8 Experience with Palliative Care

9 Half of Canadians are Close to Palliative Care % % 17% 21% 14% Yes, my parents Yes, other close family Yes, friends No 9 Has any one among your family and friends received Palliative/End-Of-Life Care? (Base: Total n=2626)

10 Canadians Provide Emotional Support and Comfort, But Not at Home Where Care Took Place What Care Was Provided Other, 2% Emotional support 69% Comfort 62% Hospital, 42% Home, 22% Meals 31% Facility, 34% Personal care 29% Medical 21% Other 39% 10 Where did this care take place? How involved were you personally in his/her Palliative/End-Of-Life Care? (Base: Total n=1212)

11 From Personal Experiences, Palliative Care Could be Improved Perception of Quality of Care Total Well Medical care 37% 51% 88% Overall comfort 43% 42% 84% Personal care management 38% 46% 84% Somewhat well enough Very well 11 As far as you know, how was he/she taken care of in terms of: (Base: Total n=1212)

12 Nurses Spend Least Amount of Time on Personal Care Average Percentage of Time Spent Ensuring comfort 39% Medical care 37% Personal care (constipation, etc.) 13% Personal care (washing, etc.) 12% 12 What percentage of your job is? (Base: Total n=237)

13 13 Challenges of Palliative Care

14 Palliative Care is a Challenge to Nurses and the General Public Perceived Level of Challenge General Public Nurses Very challenging 53% Very challenging 31% Somewhat challenging 35% Somewhat challenging 56% Not very challenging 2% Not very challenging 11% Not challenging at all 1% Not challenging at all 2% 14 To what extent would you agree that it is challenging to manage the care associated with Palliative/End-Of-Life Care? Would you say that it is: (Base: Gen Pop n=2626, Nurses n=237)

15 Few Feel Very Able to Provide Palliative Care themselves, and Worry about its State Ability to Provide Palliative Care Personally Concern about State of Palliative Care in Canada Don't know, 5% Very concerned 27% Able, 40% Somewhat concerned 49% Not able, 55% Not very concerned 13% Not at all concerned 2% 15 To what extent would you agree that you are able to care for someone needing Palliative/End-Of-Life Care? How concerned are you about the state of Palliative/End-Of-Life Care in Canada? (Base: Total n=2626)

16 Canadians Do Worry about Palliative Care I worry about family needing palliative care 42% Total Agree 18% 61% In Canada, the dying receive the best care possible 27% 4% 31% Anyone can care for someone who is dying 11% 6% 17% I don't have to worry about palliative care 13% 4% 17% Somewhat agree Strongly agree 16 For each of the following statements, please tell me if you agree or disagree? (Base: Total n=2626)

17 Palliative Care is for Everyone Total Agree Palliative care is another way of saying pain management 21% 3% 23% Palliative care is for people with money 17% 2% 19% Palliative care is for certain lifestyles 5% 1% 6% Palliative care is for people with cancer 4% 1% 5% Somewhat agree Strongly Agree 17 For each of the following statements, please tell me if you agree or disagree? (Base: Total n=2626)

18 Palliative Care Has Issues that Could be Improved There has to be more done to help patients live comfortably 43% 39% Total Agree 81% There are effective medications for palliative care patients 48% 19% 67% Ensuring comfort is not as important as pain management 15% 4% 19% Pain medications have no side effects 7% 2% Somewhat agree Strongly agree 9% 18 For each of the following statements, please tell me if you agree or disagree? (Base: Total n=2626)

19 19 Palliative Care Concerns

20 Canadians are More Concerned with Comfort and Dignity than Constipation and Side Effects Ensuring comfort and preserving dignity are of the utmost concern when it comes to Palliative Care. While drug side effects and constipation are also a concern, they are secondary, with only half of Canadians saying they are very concerned about these aspects. Canadians are more concerned with emotional issues, psychological issues and relationships than they are with drug side effects or constipation. However, when examining potential side effects, constipation elicits the highest level of concerns, with approximately one-third being very concerned about nausea, headaches or anemia. 20 Even when examining those who are close to palliative care, 57% are very concerned with constipation, compared to the 88% who are very concerned with ensuring comfort.

21 Comfort and Dignity are of Utmost Importance Level of Concern Total Concerned Ensuring comfort 15% 80% 95% Preserving dignity 16% 79% 94% Personal care - washing 23% 70% 93% Emotional issues 26% 67% 93% Psychological issues 31% 61% 92% Relationships 32% 58% 90% Dealing with healthcare system 35% 54% 89% 21 Somewhat Concerned Very Concerned Nets may not add up due to rounding When it comes to Palliative/End-Of-Life Care for a family member, how concerned would you be about each of the following? (Base: Total n=2626)

22 Physical Side Effects are Somewhat Less Concerning than Psychological Issues Level of Concern Total Concerned Ability to have bowel movements 37% 52% 89% Drug side effects 41% 46% 87% Nausea 44% 40% 84% Headaches 47% 36% 83% Tiredness (anemia) 48% 33% 81% Respect for all cultures 33% 39% 72% 22 Somewhat Concerned Very Concerned Nets may not add up due to rounding When it comes to Palliative/End-Of-Life Care for a family member, how concerned would you be about each of the following? (Base: Total n=2626)

23 Nurses Also Find Comfort and Dignity More Important than Physical Side Effects Perceived Importance Preserving dignity 2% 98% Total Important 100% Ensuring comfort 2% 98% 100% Emotional issues 8% 92% 100% Psychological issues 10% 89% 99% Relationships 17% 81% 99% Personal care 43% 54% 98% Respect for cultures 23% 75% 98% Drug side effects 35% 61% 96% Ability to have BMs 36% 58% 95% 23 Somewhat important Very important Please tell me how important each of the following aspects are in a Palliative/End-Of-Life Care? (Base: Total n=237)

24 Canadians Lack Confidence in Potential Care Perceived Level of Care Ensuring comfort 51% 19% Total Well Cared 70% Personal care - washing 49% 19% 68% Relationships 47% 18% 65% Respect for all cultures Drug side effects Ability to have BMs 44% 52% 50% 19% 12% 13% 63% 63% 63% Preserving dignity 44% 19% 63% Emotional issues 43% 14% 57% Psychological issues 44% 13% 56% 24 Somewhat well enough Very well Personally, how well do you think you would be taken care of in terms of the following? (Base: Total n=2626) Nets may not add up due to rounding

25 Canadians feel Overall Comfort is Most Important as well as Needs Improvement 45% Most Important 29% 24% 19% 14% 12% Most Need of Improvement 19% 17% 14% 8% Overall comfort Personal care management Pain management Medical care Don't know 25 Of these four broad categories, if one could be improved to result in better/more care, which one is MOST IMPORTANT/In MOST NEED of Improvement? (Base: Total n=2626)

26 Nurses Have Some Confidence in Dealing with Constipation Preserving dignity Confidence in Providing Care 19% 80% Total Confident 99% Ensuring comfort 25% 73% 98% Personal care 19% 76% 95% Drug side effects 52% 43% 95% Ability to have BMs 41% 52% 94% Relationships 47% 46% 93% Emotional issues 46% 46% 92% Psychological issues 48% 38% 86% Respect for all cultures 49% 35% 84% Somewhat confident Very confident 26 Please tell me, how confident are you in providing your Palliative/End-Of-Life Care patients with the best possible care available on each of the following? (Base: Total n=237)

27 27 Discussing Palliative Care

28 Many Canadians Never Discussed Palliative Care % % 22% 7% 12% Yes, about myself Yes, about my family Yes, about someone else No, Never 28 Have you ever had a discussion about Palliative/End-Of-Life Care for yourself, a close family member or anyone else close to you? (Base: Total n=2626)

29 Few Have Discussed Palliative Care with a Healthcare Professional No, have not had discussion with Health Care professional 81% Yes, had discussion with Health Care professional 19% Why Discussed N=496 with Healthcare Professional Ill family member 45% Work in hospital 17% Needed advice 10% For future care 10% 29 Have you ever had a discussion about Palliative/End-Of-Life Care with a Healthcare Professional? (Base: Total n=2626)

30 Discussions Regarding General Care are Harder than OIC Personal discomfort discussing care 57% Easier for caregiver than patient Patient discomfort discussing care 79% Easier to discuss OIC than care Easier to discuss OIC than care Personal discomfort discussing OIC 37% Easier for caregiver than patient Patient discomfort discussing OIC 57% 30 To what extent would you agree that it is uncomfortable for a PATIENT/YOU to discuss certain aspects of the care? How comfortable would you be/ would most patients be in discussing Opioid-Induced Constipation with someone (including family members) in Palliative/End-Of-Life Care? (Base: Total n=2626)

31 Nurses are More Comfortable Discussing OIC, but Feel Patients May Not Be Personal and Patient Discomfort Discussing OIC 45% 50% 22% 29% 11% 6% 10% 12% 7% 8% Very uncomfortable Somewhat uncomfortable Not very uncomfortable Not at all Don't know Personal discomfort Patient discomfort 31 How comfortable are you/patients in discussing Opioid-Induced Constipation with someone in Palliative/End-Of-Life Care? (Base: Total n=237)

32 Nurses Comfortable Discussing All Care, but Patients May Not Be Personal and Patient Discomfort Discussing Care Rated Somewhat/Very Uncomfortable Personal care like constipation 6% 65% Personal care like washing 3% 52% Managing pain 6% 40% Medical care 8% 33% Patients discussing You discussing 32 To what extent would you agree that it is uncomfortable for YOU/ the PATIENT to discuss: (Base: Total n=237)

33 Nurses Often Discuss OIC Frequency of Discussing OIC Always/Often Total Discuss with doctor 40% 29% 60% Discuss with patient 37% 25% 62% Discuss with family 33% 23% 56% 33 Often How often do you discuss Opioid-Induced Constipation with: (Base: Total n=237) Always

34 34 Awareness of Opioid-Induced Constipation

35 Canadians Unaware of OIC but Those who are Aware are also Familiar Awareness of OIC Familiarity with OIC Have heard of OIC 18% Very familiar 23% Somewhat familiar 48% Have not heard of OIC 82% Not very familiar 26% Not at all familiar 4% 35 Have you ever heard of the term Opioid-Induced Constipation? (Base: Total n=2626) How familiar are you with the term Opioid-Induced Constipation? (Base: Those aware of OIC n=479)

36 Some Nurses Not Familiar with OIC % % 29% % % 12% Very familiar Somewhat familiar Not very familiar Not at all familiar 36 How familiar are you with Opioid-Induced Constipation? (Base: Total n=237) Nets may not add up due to rounding

37 Nurses, but not Canadians, are Aware of the Problem of Constipation Awareness of Constipation Side Effect Gen Pop Very aware 10% Most Common Side Effect of Pain Meds - Nurses Itching, 3% Somewhat aware 20% Nausea/vomiting, 31% Not very aware 22% Constipation, 62% Not at all aware 46% 37 Were you aware that constipation due to medication is one of the common symptoms among Palliative/End-Of-Life Care patients? (Base: Gen Pop n=2626) Based on your experience, what is the most common side effect of the pain medications given in Palliative/End-Of-Life Care? (Base: Total n=237)

38 While Awareness is Low, Constipation is Seen as a Major Issue to Canadians Relief from constipation helps people die with dignity 34% 56% Total Agree 89% Healthcare professionals will recommend constipation treatments 54% 21% 75% I would be more comfortable treating constipation without drugs 25% 8% 33% Constipation is a minor issue 13% 3% 15% 38 Somewhat agree Strongly agree Please tell me to what extent you agree or disagree with the following: (Base: Total n=2626) Nets may not add up due to rounding

39 39 Treatment of Palliative Care

40 Importance of OIC Relief Considered Less Important Perceived Importance to Provide Total Important Personal care 17% 79% 96% Pain management 13% 83% 96% Emotional support 16% 79% 95% Relief from OIC 27% 68% 95% Relief from other side effects 31% 64% 95% Somewhat important Very important 40 How important do you think it is to provide (Base: Total n=2626) Nets may not add up due to rounding

41 Relief from OIC Somewhat Less Important for Nurses Perceived Importance to Provide Total Important Emotional support 8% 92% 100% Pain management 1% 99% 100% Personal care 22% 77% 99% Relief from OIC 23% 71% 95% Somewhat important Very important 41 How important do you think it is to provide : (Base: Total n=237)

42 Nurses Feel Patient Care of OIC Needs Minor Improvement Perceived Need for Improvement in Patient Care Psychological issues 53% 33% Total Improvement 85% Emotional issues 52% 30% 82% Relationships 52% 26% 78% Respect for all cultures 48% 30% 78% Drug side effects 56% 18% 74% Ensuring comfort 48% 22% 70% Preserving dignity 44% 25% 68% Ability to have BMs 46% 12% 58% Personal care 33% 12% 45% 42 Some improvement Great deal of improvement Please tell me, if any, how much improvement is needed in caring for a palliative care PATIENT in each of the following aspects? (Base: Total n=237)

43 Nurses Feel Treatment Programs for OIC Needs Minor Improvement Perceived Need for Improvement in Programs/Services Psychological issues 53% 31% Total Improvement 84% Emotional issues 54% 28% 82% Relationships 54% 24% 78% Respect for all cultures 51% 27% 77% Preserving dignity 52% 21% 73% Ensuring comfort 52% 21% 73% Drug side effects 56% 17% 73% Ability to have BMs 47% 13% 60% Personal care 35% 14% 50% Some improvement Great deal of improvement 43 Please tell me how much, if any improvement is needed in Palliative/End-Of-Life Care PROGRAMS AND SERVICES for each of the following aspects? (Base: Total n=237)

44 Canadians are Unsure How OIC is Treated OIC Treatments Laxatives 10% Medication/ drugs 6% Enemas 4% Stool softeners 2% Natural laxatives 2% Other 2% Don't know 75% 44 How do you think Opioid-Induced Constipation is treated currently? (Base: Total n=2626)

45 Nurses Unsure of OIC Treatments OIC Treatments Stool softeners 27% Medication 14% Laxatives 11% Diet 6% Other 1% Don't know 41% 45 How do you currently treat for Opioid-Induced Constipation? (Base: Total n=237)

46 Some Nurses Need More Treatment Options Agreement that Nurses Have Sufficient Options to Treat Palliative Care Patients % % % % 12% 4% Strongly agree Somewhat agree Somewhat disagree Strongly disagree 46 To what extent would you agree that you have sufficient treatment options available to care for someone needing Palliative/End-Of-Life Care? (Base: Total n=237)

47 Nurses Can Receive Medication to Comfort Pain and Constipation Perceived Difficulty in Accessing Medications 33% 35% 40% 45% 23% 17% 3% 2% Very difficult Somewhat difficult Not very difficult Not difficult at all Comfort from pain Comfort from constipation 47 How difficult is it for you to have access to the medications that provide: comfort from pain/constipation for Palliative/End- Of-Life Care patients? (Base: Total n=237)

48 OIC Treatments have Somewhat Positive Impact Impact of OIC Treatment Emotional state 46% 14% Total Positive Impact 60% Psychological state 46% 15% 61% Physical state 36% 30% 66% Somewhat positive impact Very positive impact 48 Talking specifically about how of Opioid-Induced Constipation is treated currently, how do you think the current method of treating impacts: (Base: Total n=237)

49 Nurses Feel OIC Treatments are Appropriate for Comfort and Quality of Life 58% 57% 27% 25% 7% 7% 1% 1% 9% 9% Completely appropriate Somewhat appropriate Not very appropriate Not at all appropriate Don't know Patient comfort Quality of life 49 Overall, do you think the current method of treatment ensures patient comfort/quality of life? (Base: Total n=237)

50 50 Summary of Findings

51 There is a Gap in Knowledge of Palliative Care Canadians understand the importance of Palliative Care: Have heard of it; Are aware it is needed by all people, regardless of lifestyle, income or disease; If they have not been touched by it already, they know they will be someday; Do worry about the state of care in Canada and the level of care they or their family will receive; Know they do not have the ability to, nor do they feel they should provide it themselves. However, Canadians are lacking in knowledge about Palliative Care and do not try to gain more knowledge: Are not knowledgeable about issues surrounding it, even though they think this knowledge is important; Do not discuss it with family or medical professionals; Have not heard about it in the media. 51

52 Palliative Care is about Comfort and Dignity However, Not Linked to Constipation Both Nurses and the General Public believe Palliative Care to be a challenge and feel that more needs to be done to help patients live comfortably. While all aspects of Palliative Care are important, to both the Canadian General Public and Nurses, ensuring comfort and providing dignity are the most important factors. There is a disconnect with what comfort and dignity entails, as both the Canadian Public and Nurses perceive drug side effects and constipation as of less importance, even though it will greatly effect both comfort and dignity. When asked, Canadians can understand that constipation is an issue that needs to be addressed to allow patients to die with dignity. However, there is not a strong top-of-mind link between constipation and patient comfort. 52 Both Nurses and the Canadian Public are more concerned about the ability to deal with psychological issue than they are concerned about the ability to deal with physical issues such as constipation.

53 OIC Has Lower Significance in Minds of Nurses and Canadians in General Most Canadians are not aware of Opioid-Induced Constipation (OIC), do not realize that constipation is a side-effect of Palliative Care medications, and are unsure how it is treated. While the majority of Nurses are familiar with OIC, there is a portion who are not aware of it, and who do not consider constipation to be the most common side effect of Opioids. Some are also unsure of how it is treated. Reflective of the views of the General Public, while the treatment of OIC is important to Nurses, it is somewhat less so than emotional support and pain management. While Nurses are less confident about treating drug side effects and constipation than they are about providing comfort and dignity, many will still say that they are currently equipped to deal with OIC and that current treatment methods are appropriate to provide patient comfort and quality of life. 53 Both Nurses and Canadians in general feel that patients would experience some embarrassment talking about the issue of constipation.

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