Patient Access to Medical Assistance in Dying
Nurses may agree or disagree with peers and colleagues about access to MAID. The process of sensemaking in relation to MAID and working through the powerful and perhaps even surprising emotions that may be evoked can be challenging, whether one is strongly supportive of MAID, opposed to it for reasons of conscience, or somewhere in between. Ask yourself: “Is the environment in the place I am employed or am a student one in which nurses can safely share and discuss their experiences, feelings, and beliefs with other nurses and in which potential tensions or conflicts can be managed respect- fully? How can we as nurses support our nursing colleagues, both those with whom we agree and those with whom we disagree?”
Patients, their families and friends, other patients or facility residents, and other health care providers, may also need understanding and support through the MAID process. Ask yourself: “What supports are available in the place where I am employed or am a student to assist others in the process prior to, during, and following MAID? What can we as nurses do to provide support and ensure that appropriate supports are available as needed for individuals, families and communities?”
In all of this questioning, the rising costs of end-of-life care, particularly in view of an aging population, has been something of an “elephant in the room. Extrapolating from cost analysis oflegalization of euthanasia in the Netherlands and Belgium, Trachtenberg and MdIlRS (2O 7) studied the economic outcomes and concluded that “if Canadians adopt medical assistance in dying in a manner and extent similar to ... the Netherlands and Belgium, we can expect a reduc- tion in health care spending in the range of tens of millions of dollars per year” (p. EiO4)
Trachtenberg and Manns (zOl7) decisively state their view that “neitherpatients nor physicians should consider costs when making the very per- sonal decision to request, or provide, this intervention” (p. Eio4). However, not everyone shares this view, and fiscal arguments for explicit consideration of costs can be made. Nurses providing end-of-life care who see that needed nursing care is not available because of costs may ask how our health care sys- tem can move forward to separate cost considerations from arguments about policy and practice in connection with MAID. From the perspective of many patients, consideration of the costs of end-of-life care has already arrived. It is typical for patients with a terminal illness and for whom death is reasonably foreseeable to depend on a combination of publicly funded health care, private health care, and help kom family and friends. For example, when palliative care. patients decide to die at home, some of their nursing care will be provided by the provincial or territorial health care system: The number of hours allotted depends on the policies of the local community health provider. Gaps may be filled by private caregivers and support from their family and friends. Patients may find that savings they had set aside for their retirement or to pass on to their children are quickly depleted. In the event that this patchwork approach is not sustainable, perhaps due to caregiver fatigue or the cost of private care- givers, palliative care patients may be admitted to a hospital to die. If fortunate, they will be admitted to a palliative
Limited access to palliative care in Canada can be seen in the broader context of resource allocation and about how to best deploy limited funds for persons and their families at the end of life. Coordinated nursing leadership is needed to help address the human and fiscal tensions we have noted above. Nurses can use their expertise to argue for policy changes that are fiscally, humanly, and ethically sustainable, such as strengthened home care support. Fortunately, as we indicated at the outset of this chapter, nurses are currently leading research and policy to make palliative support more widely access- ible by promoting pslliofive approaches to care throughout illness and dying trajectories (CNA, CHPCA, CHPC-NG, zoi5; Stajduhar & Tayler, zo14). Such approaches can be an excellent complement to the implementation of MAID, helping to ensure that MAID does not become a default.
The Emotional Toll on Nurses
In closing this chapter, we emphasize the need for nurses and other health care providers to continue to develop their knowledge and skills related to the kinds of end-of-life care challenges and opportunities we have illustrated. We have focused on how health care ought to happen for patients and their fam- ilies facing a life-limiting illness, including during the processes of dying and death. In so doing we have drawn on the wisdom of stories from patients, their families, their health care providers, and the courts. We have also drawn on the research and clinical experiences of Canadian nurse leaders who are promot- ing an overall palliative approach ta care to support patients and their families, which is a goal that has been recognized by the CNA and other nursing groups. As we noted earlier, Stajduhar (zoii) has argued that a “palliative approach recognizes that, although not all people with life-limiting illness require4O4 Concepts and Cases in Nursing Ethics
specialized palliative services, they do require care that is aimed at improving quality of life” (p. io). Stajduhar and other expert nurse colleagues have helped us to understand that while specialized palliative care services will always be needed and ought to be more widely available, there ought also to be more consistent ongoing support for patients and their families throughout their illness journeys. Fortunately, these recommendations are being picked up by national nursing and interprofessional associations in Canada. As noted in their Joint Position Statement, the CNA, the CHPCA and the CHPC-NG “sup- port the palliative approach to care and its central aim ...: to help people live well until death, across the lifespan, in all practice settings” (zoos.p ). The document also reminds us that all “nurses have a fundamental role in a pallia- tive approach to care” (p. i).
Many practical challenges for equitable access to specialized palliative care and more general palliative approaches to care remain. Conscientious nurses will continue to work to ensure that both specialized palliative care services as well as palliative approaches to care are widely available in rural as well as urban areas across Canada. Such services ought to include proactive approaches to support individuals and their families with their grief processes during illness and death as well as ongoing support for health care providers from all disci- plines to address any related moral distress.
CASE I: Margot Bentley and Advance Care Planning
Consent issues often arise with patients nearing the end of life who lack cap- acity, or whose capacity has been diminished. There may be disagreement about whether a patient has the capacity to consent, and what counts as evi- dence that consent has been given. If the patient is incapable of consent, have they previously expressed their wishes relevant to decisions to be made in a legally recognized advance directive? If there is such a directive, is it clear about what the patient would wish to happen in the particular circumstances that have come to pass? What rights and responsibilities does a substitute deci- sion-maker have with respect to refusal of treatment or of personal care? are the obligations of health care institutions as concerns the provision ofwhat is considered to be personal or basic care necessary for the preservation of life? The case of Mrs. Margot Bentley, an 8z-year-old woman with advanced Alzheimer's disease who had become unable to feed herself, engaged all of these issues and others yet. The issues came to a head because family mem- bers disagreed with the health care institution's decision to continue nourish- ing Mrs. Bentley by spoon-feeding her. The matter came before the Supreme Court of British Columbia in zo14, which
ruled against the family (Bentley v. Maplewood Seniors Care Society, 2O14). Following an appeal, this ruling was upheld by the British Columbia Court ofA realin zoi5 (Bentley v. MaplewoodSeniors Care Society, zoi5). Key facts about the case and the issues raised havebeen extracted from the zoi4 proceedings.