Dr. Andrea Johnson Saskatoon Health Region/Saskatoon Cancer Centre September 30, 2016
Conflicts of Interest None... Our drugs are old and cheap (for the most part) so big pharma isn t really interested in us
WHO Definition of Palliative Care 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 the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative Care (WHO) provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patients illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
2015 Survey of CSPCP The majority of our members are opposed to legalization of euthanasia (73%) or assisted suicide (69%). Further: (74%) believe that euthanasia and physician assisted suicide should not be provided by palliative care services or palliative care physicians It is all of our responsibilities to accompany our patients on their journey and not abandon them regardless of our own personal beliefs
So how does palliative care fit in with MAID? It s about patients and families having a real CHOICE in their end of life care care What do people at the end of life want? Canadian qualitative study of 126 patients (split quite evenly between people on dialysis, with HIV, in LTC) Cancer literature is similar Domains identified: Adequate pain and symptom management Avoidance of inappropriate prolongation of dying A sense of control Relief of burden on families Strengthened relationship with loved ones
This fits with literature on MAID Study from the Oregon experience Reasons for requesting MAID: Loss of autonomy (93%) Fear of being a burden (49%) Fear of pain or other symptoms (28%)
Palliative care addresses these issues It s not just about the drugs (of course, symptom management is a big part of what we do) It s about: relationships (among patient/family/health care team) finding out what is important to that patient and advocating for it giving back some control providing the resources to support the patient in his/her journey (eg home care, respite) This takes a multidisciplinary team and community partnerships
I think we re pretty good at this 2010 Study published in the NEJM 151 patients randomized at diagnosis of NSCLC to standard oncologic treatment or standard+pall care 107 completed assessments at 12 weeks At 12 weeks, patients who received palliative care had: Higher quality of life scores Lower depression scores At end of life, palliative care patients had: Less aggressive treatment Longer median survival (2.7 months)
But most people don t have access... Numbers vary but, at most, 50% of Canadians have access to palliative care programs (I m being generous) Much lower in rural and remote areas Here in Saskatoon, we have only 12 acute care beds and no hospice We are the only major city in Canada that doesn t Calgary has 12 SHR funding for a 1.7 equivalent physician position, no MD coverage in nursing homes or community (especially for non-malignant diseases) All government committee papers have expressed need for increased palliative care so far we have not seen any results There is much discussion about having universal access and funding for MAID but ironically not much has been really said about increasing access to palliative care
Do patients and families really have a choice? Many people will choose MAID regardless of support available These are the people who value control and autonomy (not that I can relate) But what about the others? Improved symptom management, more home care or respite support We may be able to alleviate some of their suffering but we aren t given the chance with current resources
Going forward The Quality End of Life Care Coalition of Canada Blueprint for Action recommends the following four recommendations: Better access to tertiary care, hospice palliative care and a palliative approach in primary care. Caregiver support, including respite, grief and bereavement. Education, training and research to support all healthcare providers to provide a palliative care to patients with lifelimiting illnesses. Advance care planning for all Canadians and tools to help healthcare providers initiate conversations about wishes, hopes, and goals of care.
You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die. Dame Cicely Saunders