By Neil Hilliard, MD MCFP (PC)
May 20, 2016
“A survey of palliative care consultants in Fraser Health April 2015
revealed that only 1 of 21 thought MAID should be provided in hospices,
and only 2 of 21 on palliative care complex care units.
Even for the 24% who agreed that in some circumstances
MAID should be provided by the palliative care program,
they were of the opinion it should not be provided
in our hospices and palliative care units.”
Why is it that palliative care physicians are opposed to medical assistance in dying (MAID) being provided in hospice or specialized palliative care units? We have the experience and the patient stories that many may not know about.
The Fraser Health Authority provides health care to a population of 1.64 million people living in an area extending from Whiterock through Surrey to Boston Bar, British Columbia. It is the largest and fastest growing health authority in the province. Palliative care services are provided in patient homes, in each of 10 community hospices, and three palliative complex care units located in the three major referral centers. Palliative care consult teams consisting of a palliative care consultant, advanced practice nurse clinician, and social worker with access to spiritual care practitioner and advanced care pharmacist are available in each community to provide support to family physicians and home health nurses, as well as to patients and families, whether they are at home, in hospital, or in a hospice or palliative care unit.
A survey of palliative care consultants in Fraser Health April 2015 revealed that only 1 of 21 thought MAID should be provided in hospices, and only 2 of 21 on palliative care complex care units. Even for the 24% who agreed that in some circumstances MAID should be provided by the palliative care program, they were of the opinion it should not be provided in our hospices and palliative care units.
Provincially, in response to a survey by the Doctors of BC Division of Palliative Medicine March 2016, 87% of palliative care consultants agreed that direct participation in physician hastened death falls outside the scope and tenants of palliative medicine. Eighty per cent agreed with the statement that they would continue to support patients choosing physician hastened death, but recommend that this service should not be directly provided on a specialized palliative care unit or hospice.
Palliative Care is about living well until you die. According to the World Health Organization WHO Definition of Palliative Care, palliative care “intends neither to hasten or postpone death”. The WHO definition states that “palliative care is an approach that improves the quality of life of patients and their families facing the problem 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” .
The greatest misperception that the public and care providers have regarding palliative care is that it is care provided only when nothing more can be done, comfort care only, and that there is no hope. For this reason referrals are often late and too late for those facing life threatening serious illness to benefit from the resources available to help people live well until they die.
Palliative care services include discussions regarding goals of care and aid in decision making, impeccable pain and symptom management, and supports for patients and families. To be effective, a palliative approach to care must be offered early on in the trajectory of serious illness and alongside usual care. When offered early, there is good evidence to show that not only is quality of living improved, there is less depression, less aggressive care, earlier referrals to hospice, and even improved survival.
Even for an excellent population based palliative care program as provided in Fraser Health, there are still huge gaps of access to palliative care services. In 2003/2004 the Canadian Institute for Health Information reported that only 16 to 30 per cent of Canadians had access to palliative care services. In 2015, the BC Palliative Population Needs Assessment reported that in Fraser Health 52% had access to these services. This is certainly an improvement, but out of approximately 10,000 deaths per year, a full 3,400 who would benefit from palliative care services did not receive them. Ninety-two per cent of these 3,400 patients have a non-cancer diagnosis, dying from end stage chronic disease, frailty, or dementia. These are the vulnerable elderly who are not being offered the benefits of palliative care to alleviate their suffering, but now are being offered medical assistance in dying.
Furthermore, others are suffering needlessly because of late referrals. The average length of time from referral to the palliative care program until death has dropped from 108 days in 2007 to 68.5 days in 2015. More reflective of the actual length of time on the program, the median length of time patients received palliative care supports and pain and symptom management was 22.5 days.
Patients have refused to be seen by palliative care consultants or have refused to be admitted to a specialized palliative care unit despite intense suffering because of their concern that active treatment of their underlying condition will be stopped and they will just be ‘let go.’ Care providers have not referred patients who would benefit because of the patient’s wish to keep fighting until the end and not wanting to ‘give up.’ How much more confusion will there be about the benefits of palliative care and delay in referral if palliative care units and hospices are where MAID is provided?
On palliative care units and in hospices, family members speak with each other in the patient lounge and common areas. What will be their concern when in the room next to them, the patient suddenly departs because of MAID. Of course, patients may and do suddenly depart due to their underlying illness. Three years ago, when this happened to several patients in a hospice, the wife (a retired registered nurse) and both daughters (also registered nurses) who had their loved one in hospice, were convinced that euthanasia was occurring in the hospice. For this reason they did not trust the care providers and took shifts at the bedside of their husband/father 24 hours per day while he remained in hospice.
If in Canada, as in Belgium, 4.7 per cent of the deaths are by MAID, there would still be 95.3% of Canadians who wish to live well until they die. Unfortunately, even with well-developed palliative care programs in Canada, there is a huge gap in care for the 95 to 99 per cent. Access to a palliative approach to care should be at least as good as, and preferably many times better than access to MAID, for the vast majority of Canadians.
The Federal Government must give just as much and more emphasis to access to high quality palliative care for all Canadians. This will require protecting the vulnerable through providing palliative care services separate from MAID, promoting access to palliative care through a public health approach, education and research, and actually providing palliative care services through supporting training positions, care providers, patients and families. This requires legislation allowing palliative care sites to not provide MAID and also improved access to palliative care for all Canadians through a National Strategy for Palliative Care. Therefore, it is of utmost importance that palliative care should be a focus in the new Federal Provincial Health Accord.
Neil Hilliard, MD MCFP (PC)
Program Medical Director
Palliative Care Program
Fraser Health Authority
Surrey, British Columbia
Clinical Assistant Professor
UBC Faculty of Medicine