Medical Assistance in Dying and the Dementia Patients Right to Autonomy
The essence of Medical Assistance in Dying (MAiD) can be viewed as supporting a patient by alleviating insufferable physical and psychological anguish by assisting in life ending care; by doing this we are ensuring the promotion and well being of the patient and respecting their autonomy. Autonomy is viewed by some as the “self-determination in choosing…it pertains both to the freedom of the individual and to the exercise of moral agency.” (College of Family Physicians of Canada, 2015, pg. 5). Individuals suffering from dementia are being stripped of their right to choose what happens to their body, and therefore their autonomy is not being respected. We see this particularly when considering the ethical concern of the eligibility criteria as it pertains to MAiD. Chochinov & Frazee (2016) spoke to this when they indicated that “the law is far too restrictive, particularly by its refusal to allow patients with progressive diseases such as dementia to declare their desire for an assisted death in advance of losing capacity to give consent” (para 7). Grace Pastine, litigation director for the British Columbia Civil Liberties Association, said it best when she described the legislation as a “cynical, misinformed and unconstitutional piece of legislation which condemns many patients to lives of unbearable suffering and cruelty” (Chochinov & Frazee 2016, para 9). It should come as no surprise to hear that in just ten short days after the law was passed, the requirement that natural death be “reasonably foreseeable” and the wording within the legislation was challenged in a court of law.
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The purpose of this paper is to examine the ethical implication when autonomy, or the right to choose MAiD is removed as patients with dementia lose their ability to provide consent. It will also discuss the media’s interpretation of this ethical issue, outline nursing as a profession’s involvement, and propose suggestions of nursing actions aimed at addressing the ethics of the issue to promote and support patient autonomy.
Deontological ethics is the ethical position that judges the morality of actions based on their adherence to a rule or set of rules. It is based around the theory that people have the autonomy to choose the rules that bind them and provide the moral “right and wrong” in their lives and is very much so a testament to moral character (What is deontology?, n.d.). Contemporary deontology is more focused on the morality of actions and that harm is justified only if committed for a greater good (What is deontology?, n.d.). This shift in the public opinion over the equal rights in choosing how to live and choosing a dignified death, is believed to be the framework for encouraging the shift in views making MAiD culturally acceptable. Over time as societal views evolve on right and wrong, and laws are amended to reflect that; our approach must therefore reflect the need for change as well. For example, we are seeing the shift to patient centered care and respecting autonomy. This is an evolutionary leap away from the traditional medicine and Hippocratic oath, the current oath placing emphasis on the physicians’ views to do no harm and lacking in consideration for the patients views and autonomy. Sullivan & Taylor (2018) viewed the oath as “too vague, outdated, and rigid to be useful in modern medicine. It has a strong deontological focus, without any real philosophical underpinnings beyond mere tradition” (para 30). As MAiD is now a recognised medical treatment both legally and ethically, this requires changes to ensure the “goals of medicine are seen as the promotion of patients’ wishes and values relating to their own life, well-being and medical needs, advocating for adopting values that are internal to medicine and medical professionalism, not values espoused by the Hippocratic Oath” (Royal College of Physicians and Surgeons of Canada, n.d., para 35). Sullivan & Taylor (2018) agreed the concept of autonomy was nonexistent when they reported “The absence of autonomy is in stark contrast to our modern focus on patient-centered care…and certainly does not represent the current diversity of ethical opinions in the medical profession.” (para 31). It is apparent how the patients’ right to choose and have control over their own body (autonomy) would fit into this ethical framework that is based off of values specific to the individual and concerned with what people “do” and not the consequences of their actions. The argument that it is worse to watch an individual suffer in pain then to comfortably aide them in a dignified demise is one of the main areas for dispute. What if the right to choose this avenue is removed due to someone else’s opinion of your capacity? What if you were left to suffer in a neurodegenerative state where expressing your wishes is next to impossible in advanced stages, how would you feel?
One can not consider the deontological effects of autonomy without appreciating Immanuel Kant’s philosophical view that “autonomy is viewed in terms of self-control, self-direction, or self-governance. The individual capable of acting on the basis of effective deliberation, guided by reason, and neither driven by emotions or compulsions nor manipulated or coerced by others” (Secker, 1999, pg. 47) Kant’s work is one of the building blocks within the deontological framework that is being used to navigate MAiD. Ultimately, patients in advanced stages of dementia are being deemed incapable of making an autonomous decision and therefore are being stripped of their autonomous rights, and medical professionals are allowing this. Their wishes are no longer being considered as viable avenues for their care. Capacity to make decisions in dementia is fluid, however, as the disease is subject to fluctuations that may be affected by external factors such as dehydration, infections, and medications. This should be considered when passing judgment on capacity and a reassessment completed post intervention. The scholars seem to be either in favour of allowing the parameters to include people whom capacity may be in question or cautioning over the slippery slope our current trajectory may take us in.
In the Media over the last few years since the legalization of MAiD, a few exceptions to the rules have been witnessed with dementia patients being allowed to participate. More recently some patients have fought and won their right to choose within Canada, despite their progressing dementia. It has been met with mostly positive accolades for its promotion of autonomy. In particular, a BC man with dementia, went through with MAiD and the medias’ portrayal of his journey was one of coming to a dignified end. There was no outcry of abuse or misuse of power and most agreed with the physician decision to assist the patient with his wish to die. The primary physician was quoted as stating that " the majority of providers in this country have come to the conclusion that patients with dementia can be assessed for an assisted death, that some of them may be eligible in certain circumstances…"(CBC radio, 2019). The comments from the general population to this article had one consistent theme, relief it could be an option for them to end their suffering. Those undiagnosed stated that it gave hope to those suffering, and one courageously shared her story of watching a family member deteriorate so far, she forgot how to swallow and starved to death. This is why the right to choose is so essential, just because capacity changes does not mean that the persons wishes have. In fact, most of the recent articles in the news spoke to the call for advanced directives to be an acceptable alternative to take the place of capacity to consent for the procedure. They cited a few countries such as Belgium, Luxembourg, Colombia and the Netherlands that have already implemented this practice (Grant, 2019).
As a profession, nurses are tasked with the safeguarding of patients and to practice within the frameworks outline by our governing bodies. The College of Nurses of Ontario spoke to the responsibility nurses have to patients around the context of MAiD. As a registered nurse we are not permitted to legally be involved in the administration of the medication required for MAiD, therefore Nurses focus first and foremost remains the patient and the importance of a strong, therapeutic relationship (CNO, 2006). The document that best outlines our responsibility to the patient’s autonomy was the practice standard of the nurse client relationship particularly the section on client centered care. It spoke to the importance of “actively including the client as a partner in care because the client is the expert on his/her life, and identifying the client’s goals, wishes and preferences and making them the basis of the care plan” (CNO, 2006, pg. 6), The same document also dictated the importance of “demonstrating sensitivity and respect for the client’s choices, which have grown from the client’s individual values and beliefs” (CNO, 2006, pg. 6). These were all essential to the nurse role and key for maintaining the autonomy of the patient. The Canadian Nurses’ Association also had an interesting section within their ethical framework that spoke to persons capacity and the nurses responsibility for “Promoting the participation of persons considered incapable in consenting to care in the health-related discussions and decisions that affect them (e.g., minors, persons with impaired mental function)” (CNA, 2017, Pg. 19). As we continue in an age of client centered care as the nursing focus, it is important that patient autonomy remains the guiding principal in all care provided.
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Justice is what is missing for the patients suffering from dementia when they are stripped of their right to choose what happens to their body simply because their disease has progressed. The resolution would be the amendment of the law to include written advanced directives as a means of consenting for the MAiD procedure. Even the Ministry of health is calling for the recognition of medical directives when they stated, “the federal government needs to study the feasibility and appropriateness of allowing advance medical directives for medical assistance in dying.” (Ministry of Health, 2018, Para 24). This would ensure the patients wishes are expressed and adhered to regardless of disease progression. Cipriani & Di Fiorino (2019) also felt strongly about this when they stated “To respect the dignity of person living with dementia, the legal and moral philosopher argues that we should honour their autonomy, either as contemporaneously expressed if they are competent or, if incompetent, as expressed in a living will” (para 4). As a nurse a recognised role from the CNA with respect to ethical responsibility was to become “ well-informed about laws (eg. medical assistance in dying) and advocating for and working with others to create policies and processes that provide ethical guidance to all nurses” (CNA, 2017, Pg. 19). This would be the course of action I would take on, to right this social injustice, the advocate that will fight for the patients right to choose a peaceful death and end suffering. Whether that manifests as fighting to amend the law directly or simply educating those around me on the dementia patients’ fluidity in capacity that requires the exploration of all causes. Also, the need to retesting capacity prior to passing judgment and stripping them of their rights and deeming them incapable of autonomous decision-making processes.
In closing, one tends to wonder why advanced medical directives such as a DNR is an acceptable piece of paper to follow in instances of incapacitation, but not for MAiD. In the framework of deontological ethics, how is it moral for a legal document outlining expressed wishes to not be adequate consent? Moving forward the nursing profession will see changes to the laws if the general population continues on its quest to be part of the MAiD inclusion criteria and nurses continue to advocate for patient autonomy. Its time to advocate for change and stop allowing only certain demographics to be eligible for medical procedures, suffering and poor quality of life is not limited to select demographics. Ethically, we have an obligation to our patients to do so, and a call to action in the need to address this grievous disregard to patient autonomy.
- B.C. man is one of the first Canadians with dementia to die with medical assistance | CBC Radio. (2019, October 27). Retrieved from https://www.cbc.ca/radio/thesundayedition/the-sunday-edition-for-october-27-2019-1.5335017/b-c-man-is-one-of-the-first-canadians-with-dementia-to-die-with-medical-assistance-1.5335025.
- Canadian Nurses’ Association (CNA). (2017). Code of Ethics for Registered Nurses. Retrieved from https://www.cna-aiic.ca/-/media/cna/page-content/pdf-en/code-of-ethics-2017-edition-secure-interactive.pdf
- Chochinov, H. M., & Frazee, C. (2016). Finding a balance: Canada's law on medical assistance in dying. Lancet, the, 388(10044), 543-545. doi:10.1016/S0140-6736(16)31254-5
- Cipriani, G., & Di Fiorino, M. (2019). Euthanasia and other end of life in patients suffering from dementia. Legal Medicine, 40, 54-59. doi:10.1016/j.legalmed.2019.07.007
- College of Family Physicians of Canada. (2015) A Guide for Reflection on Ethical Issues hConcerning Assisted Suicide and Voluntary Euthanasia. http://www.cfpc.ca/uploadedFiles/HealthPolicy/PDFs /Guidefor%20EuthanasiaENFInal.pdf
- College of Nurses of Ontario. (2006) Therapeutic Nurse- Client Relationship, Revised 2006. Retrieved from http://www.cno.org/globalassets/docs/prac/41033_therapeutic.pdf
- Grant, K. (2019, October 12). From dementia to medically assisted death: A Canadian womans journey, and the dilemma of the doctors who helped. Retrieved from https://www.theglobeandmail.com/canada/article-from-dementia-to-medically-assisted-death-a-canadian-womans-journey/.
- How does deontological ethics define morality? What is deontology? (n.d.). Retrieved from https://www.compellingtruth.org/deontology.html.
- Ministry of Health. (2018). Medical Assistance in Dying. Retrieved November 13, 2019, from http://www.health.gov.on.ca/en/pro/programs/maid/.
- Royal College of Physicians and Surgeons of Canada. (n.d.). Retrieved from http://www.royalcollege.ca/rcsite/bioethics/cases/section-5/providing-medical-assistance-dying-e.
- Secker, B. (1999). The appearance of kant's deontology in contemporary kantianism: Concepts of patient autonomy in bioethics. The Journal of Medicine and Philosophy, 24(1), 43-66. doi:10.1076/jmep.126.96.36.1994
- Sullivan, D. M., & Taylor, R. M. (2018). The ethical landscape of assisted suicide: A balanced analysis. Ethics & Medicine: An International Journal of Bioethics, 34(1), 49-3.
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