This blog is part of "Monitoring Matters", a special series of guest blogs by VPS Advisors.
By Sister Nuala Kenny O.C., M.D., F.R.C.P. (C)
I am a Roman Catholic Religious, a pediatrician, medical educator and physician ethicist opposed to medically assisted death (MAiD). Since its legalization in Canada I have worked to minimize the harms of this practice especially for the most vulnerable among us, for persons who object in conscience to involvement for faith-based and other reasons and for the medical profession itself. In my experience each of these three concerns powerfully influences the others.
Protection of conscience and protection of the vulnerable are two crucial issues in minimizing the harm of a practice which rejects the 2,400-year tradition of Hippocratic medicine against providing “a deadly drug, even at the request of a patient”. Both of these protections have been guaranteed in the Supreme Court decision in Carter and in Bill C-14, which established MAiD in Canadian law.
A robust monitoring system of all elements in this policy and practice is essential to fulfill the promise of these essential protections. These elements include: the clinical response to persons considering or requesting MAiD; determining competence and free and informed choice; the efficiency of the final procedure and complications; and the reporting of the death in sufficient detail for the sophisticated analysis necessary to recognize trends demonstrating vulnerabilities.
The VPS has properly focused on practitioner spheres of responsibility with specific attention to the protection of autonomy, understanding suffering, non-discrimination and perpetuation of stigma and provision of options. My deep concern is that the fulfillment of these responsibilities requires an acceptance of ethical/moral duties and sensitivity to the essential moral core of medicine. Here, my own formation in the philosophical basis of medicine and my experience of medicine as a moral endeavour identifies profound challenges from four factors:
- the shift from a moral to a market model of medicine;
- rejection of the importance of personal and professional conscience;
- the dominance of patient autonomy, rights and choice; and
- pressure to normalize MAD in direct contradiction to robust monitoring and safeguards.
Shift from a moral to a market model of medicine
The Hippocratic tradition and modern professionalism recognized the essential moral and vulnerable nature of the patient-doctor encounter. This was expressed in the principles of beneficence, non-maleficence and justice and in the late nineteenth century, medical professionalism emerged with codes of ethics and a communal understanding of standards of care and professional conscience. In response to paradigm-shifting medical advances from the 1960’s to 1980’s and increasingly pluralistic societies, medical ethics was replaced by contemporary bioethics. This newer field has been dominated by “mid-level” principle-based reasoning which is disengaged from any sense of the intrinsic goals and limits of medicine.
The principle of respect for autonomy, which emerged as the dominant value through this reasoning, resulted in acceptance of a consumer model of the physician-patient relationship, and the commodification of the practice of medicine. It is this shift to a market model of medicine which is embodied in the SCC decision. The consequences of commodification include transformation of the patient to a customer and erosion of the moral agency of the doctor, whose role has become one of morally neutral service provision. This profound shift was evident in the Canadian Medical Association’s response to the SCC decision which was not based in the Code of Ethics but in a “principles-based” response prioritizing the autonomy of patient-consumers.
Conscience understood as an issue of competing rights
In this context, implementing the guaranteed protection of conscience for practitioners has revealed deep divisions about the concept. Many claim conscience as a private and religious claim that has no place in the physician-patient relationship. In the shift from medical ethics, there has been a rejection of communal, professional conscience directed by a moral understanding of medicine and its limits. The conscience debate is presented as a conflict between the physician’s right to conscience protection and the patient’s right to legally sanctioned medical interventions. But conscience is about forming the moral core of our acts and decisions. Without conscience development, sensitivity to the suffering of patients and families and recognition of those most vulnerable to requesting MAD is compromised.
Rights, choice and vulnerability
Because autonomy, rights and choice are so valorized in our society, commitment to protection of the vulnerable is seen by many as condescending and patronizing. But autonomy, rights and choice are all compromised by inherent vulnerability. It is neither condescending nor patronizing to recognize needs and dependence, demoralizing features in environments of care and pathogenic vulnerability in policies and practices of neglect, abuse and stigma, including those designed to alleviate suffering. Disability, mental health issues, poverty, social isolation, unemployment, violence, abuse and insecurity all compromise choice. Decisions are neither voluntary nor informed if there is disordered insight and self-stigma related to depression, hopelessness or guilt, inducements and coercion.
Persons rarely request assisted death for pain but rather, for psychological distress and care needs, including uncertainty about the future, desire to control death, fear of dependence, feelings of loss of dignity, fear of abandonment, and guilt at being a burden to others. These are not issues of pain and symptom control where medicine has much to contribute but issues of human suffering. It is not clinical skill, but a practitioner’s moral and ethical sensitivity that are called for to recognize vulnerability and human suffering and to respond appropriately.
Pressure to normalize MAID in direct contradiction to robust monitoring and safeguards
Perhaps the greatest impediment to a regulatory regime capable of protecting the vulnerable from abuse and error is the pressure from many quarters to normalize MAiD and treat it just like any other medical decision. Evidence from other jurisdictions shows that once medically assisted death is legal the response of practitioners to patients considering it shifts from re-assessing care needs to determining eligibility. As normalized practice, there is a push to remove special considerations regarding competence, free choice, vulnerability and the process itself. This is abetted by governmental and professional bodies that want to simplify paperwork and those so fixed on privacy that inadequate information is gathered to identify the vulnerability of the elderly isolated in under-staffed and under-resourced long term care facilities, the homeless with chronic mental illness experiencing an acute health care crisis, those suffering from devastating neuro-degenerative conditions without palliative care, those newly diagnosed with dementia and so many other situations where socio-economic disadvantage and stigma prevail.
Monitoring: the challenge and the promise
While protection of the vulnerable from medically assisted death is a social and governmental responsibility, the VPS focus on physician responsibility for protection of autonomy, understanding suffering, non-discrimination and perpetuation of stigma and provision of options is correctly placed. The challenge lies in responding to these issues in the context of a shift away from the moral core of medicine and towards a market model. This is a great challenge.
Monitoring, as the VPS has framed it, may help us to meet this challenge. By clearly affirming physician responsibilities against the backdrop of the de-moralization of medicine, many clinicians may re-awaken to the moral core of their practice.
I hope and pray this promise is fulfilled.