Improving end-of-life care in Canada

Transcription

1 Improving end-of-life care in Canada John J. You, MD MSc FRCPC Associate Professor, Departments of Medicine, and Clinical Epidemiology & Biostatistics, McMaster University Sept 23, nd Annual TVN Conference Toronto, ON 1

2 Outline Where have we been? Where are we now? Where do we need to go? 2

3 My perspective Hospital based general internist Clinician-researcher Improvement of end-of-life communication and decision-making for seriously ill hospitalized patients and their families 3

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5 Trajectories of dying 5

6 Where have we been? 1960s: 1974: 1991: 2000: Dame Cicely Saunders (UK modern hospice movement) St. Boniface Hospital (Winnipeg) Royal Victoria Hospital (Montreal, Dr. Balfour Mount) Canadian Palliative Care Association Quality End-Of-Life Care: The Right of Every Canadian (Carstairs) Focus on palliative care for patients with terminal cancer 6

7 JAMA. November

8 Support for EOL research in Canada CIHR Palliative and End-of-life Care committee CIHR: 10 New Emerging Team (NET) grants ( ) Family caregiving Cancer-associated cachexia and anorexia Vulnerable populations Improving communication and decision-making at the end-of-life CARENET (Canadian Researchers at End of Life Network) 8

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10 How important is it To have trust and confidence in the Doctor looking after you Not to be kept alive on life support when there is little hope for a meaningful recovery That information about your disease be communicated to you in a honest manner % Extremely Important Good end-of-life communication and decision-making 44.1 To complete things and prepare for life s end 43.9 To have an adequate plan of care & services 41.8 available at home upon discharge To not be a physical or emotional burden 41.8 Heyland DK et al. CMAJ

11 End-of-life care in Canada may be improved for patients and their families by providing better psychological and spiritual support, better planning of care and enhanced relationships with physicians, especially in aspects related to communication and decision-making. 11

12 Where are we now? 12

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14 EOL communication & decision-making Conversations about wishes and preferences Substitute DM Advance Directive Advance Care Planning Decisions about Goals of Care in the moment Diagnosis/Prognosis Anticipated /Feasible outcomes Options for care Plans for crisis MOST form ACP Record Care Plans Documentation Primary Care Specialty/Acute Care and LTC

15 Patient preferences for EOL care 76% of patients have thought about the kinds of lifesustaining treatments they would want 89% of these patients have discussed with someone % of patients CPR Full medical, no CPR Comfort Mix Unsure 15

16 Documented goals of care are discordant with patient preferences 70% of the time % of patients CPR Full med, no CPR Comfort Mix Unsure Missing Other Patient's preferences Goal 16

17 Current social context vs. SUPPORT era Changing demographics End-of-life issues in the media Policy attention 17

18 Where do we need to go? End of Life Care: The Last 100 days, CAHS Forum, Ottawa, Sept 2012 Narrowing gaps between EOL care that patients prefer and what they actually receive should be a national priority The quantity and quality of advance care planning needs to be improved Burdens to family caregivers must be acknowledged and addressed Physicians in training need more and better education about palliative care Cook D, Rocker G, Heyland D. CMAJ Nov 5,

19 Recommendations 1. Delivery of care 2. Clinician-patient communication and advance care planning 3. Professional education and development 4. Policies and payment systems 5. Public education and engagement Institute of Medicine. Sept 17,

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21 Butler et al. Ann Intern Med. Sept 16,

22 Key findings Many decision aids widely available but not evaluated Most of those tested are proprietary or not publicly available Future efforts should focus upon: Development of more validated tools appropriate for patients across various settings Broad array of tools for use at various stages of life/illness trajectory Who should facilitate EOL communication and how Tapping potential opportunities in social media or other technologies 22

23 Where do we need to go? Patients & family members Clinicians Health system Social change 23

24 If we needed a cause to unite us all, improving end of life care should be that cause. -- Deborah Cook & Graeme Rocker,