Some weeks ago I noted that Quebec’s Bill 52 – An Act Respecting End-of-Life-Care has gathered and polarized public debate. The Bill begins to provide the legislative framework for a death with dignity. However, it raises flags for those of us who have been concerned about the issue. A colleague and friend of mine in Montreal, Lorine Besel, has through letters to the Montreal Gazette been suggesting ways of improving the legislation. Death with dignity is a complex issue. While I am not an expert, I have gathered my thoughts, along with Ms. Besel’s and am making them “public”. Why? Because I think it is important that we engage in a national conversation on how we can manage end of life care in a manner that is ethical, legal and responsible. Change begins with you and me.
BONNIE L. LENDRUM
November 29, 2013
A Compassionate Canadian Proposal For a Death With Dignity
A majority of Canadians would welcome a medically assisted death if they had an incurable illness, and had reached the point at which they no longer wished to live. However, under Canadian law, a medically assisted death is considered a criminal act. If dying were guaranteed to be a peaceful process few people would fear death. But when there is unmanaged pain, respiratory distress, loss of bowel and bladder control,or loss of mobility, then dying can be grim. Quebec’s Bill 52 – An Act Respecting End of Life Care attempts to address these fears. The Bill however is flawed and has rightly attracted controversy.
Lorine Besel* is a champion of palliative care and medical aid in dying, yet she is concerned about Quebec’s Bill 52 and has explained why in letters to the Montreal Gazette. Unlike other objectors, Ms. Besel has introduced an alternative idea which would be ethical, responsible, and legal. That idea is a “Trial by Jury for a Death with Dignity.” She suggests that in the presence of an incurable illness, it should be possible to have a medically assisted death that is supported by law and subject to public scrutiny through an adjudicated process. It may seem like a radical idea, and may even be unfeasible. However if it is set in the context of the evolution of palliative care, Advance Medical Directives, and Bill 52, her idea may provide direction for future legislation.
Palliative Care in Canada began at Montreal’s Royal Victoria Hospital. Pain control was a priority. The management of pain required a paradigm shift amongst health care professionals. Prior to the hospice movement, physicians and nurses worried about creating addictions in patients with unrelenting and unbearable pain—the type of pain that can accompany advanced malignant disease. Opiates were administered on a strict schedule, not as the patient needed relief. Giving an opiate before the designated due time, or when the patient needed the medication, was a breach of practice that would result in disciplinary measures. Margo McAffery, a nurse, introduced a paradigm on pain management by noting that, “Pain is whatever the experiencing person says it is, existing whenever he says it does.” Today it seems preposterous that a loved one facing death might be required to wait for pain relief, but that is the way it was.
While palliative care was a beginning it still did not address patients’ needs for autonomy. The concept of Advance Medical Directives (AMDs), introduced in the 1990’s, was intended to guide physicians in their decision-making as an individual approached death. The directives were a written statement that one could prepare, in advance, to designate how one’s health care treatment would be managed if there were no hope of recovery. There could be statements about not being kept alive by medicines and/or machines, or requesting “Do Not Resuscitate.” AMDs began to address how one might have a dignified death in hospital. But AMDs were not legally binding. Furthermore a dignified death was no certainty after one had been disconnected from a ventilator and a myriad of infusion and drainage tubes. Neither palliative care, nor AMD’s have met the needs of people approaching death who wish to die without pain, without respiratory distress, or without loss of control of bodily functions — in other words, to die with their dignity intact.
Quebec’s Bill 52 – An Act Respecting End of Life Care passed second reading on October 31, 2013. The proposed legislation provides for “terminal palliative sedation” and “medical aid in dying”. There have been and still are many objections. Palliative care practitioners object because they have not been consulted in the design of the Bill and they also object to “medical aid in dying” or euthanasia which is not a component of palliative care philosophy, and is a criminal act. Advocacy groups for vulnerable or disabled people object to “terminal palliative sedation” fearing that it is a step on to a slippery slope. If the patient is unable to provide consent, the procedure allows for consent from “the individual authorized to consent to care on behalf of the patient.” Faith based objections essentially state that humans should not be intervening to promote death.
Ms. Besel objects to the Bill on two counts:
1. Public oversight of the procedures will be conducted after the deaths have occurred. Bill 52 requires that two physician must concur on the decision to end a life; a provincial commission will review the aggregate from each institution and report to the Minister annually.
2. “Medical aid in dying” will be denied to patients until the individual requesting it is suffering “from constant and unbearable physical or psychological pain which cannot be relieved in a manner the person deems tolerable.” Ms. Besel protests that it is unreasonable for anyone to have to endure that level of suffering.
Ms. Besel’s proposal, published in the Montreal Gazette on July 5, 2013 and October 11, 2013, is a “Trial by Jury for a Death with Dignity”. She contends “that any death, by any form of human intervention deserves, indeed requires, that society exposes that event to public scrutiny and have laws written to state its position on these deaths.” That scrutiny and such laws are called upon to determine guilt and to examine the nature of a sentence for an individual who has committed a death without choice (murder). A parallel trial process, subject to public scrutiny—a judge and jury—and conducted in a timely manner is what Ms. Besel is recommending for a medically assisted death. Unlike a murder trial where the accused is present, at a “Death With Dignity Trial” the duly notarized request from the person wishing a medically assisted death would be put on “trial”, not the individual seeking the death.
Given the delays that occur within our current court system, it is not likely that a “Trial by Jury for a Death with Dignity” is feasible. However, the idea of a formal adjudicated process that takes place before a requested death has merit for patients and contains safeguards for society. Such a process would:
1. provide an individual who is alert, capable, and faced with an incurable illness the option to have a death at a time, and place, and with conditions that met the individual’s requirements;
2. be a formal decision-making process subject to public scrutiny with laws written to protect the individual seeking the death and the physician administering the medication;
3. permit physicians to uphold the ethical imperative to do no harm. In the presence of an incurable illness that imperative would mean relieving the patient of the fear of loss of mobility, loss of bowel and bladder control, choking, aspiration, respiratory distress, and/or pain.
Ms. Besel’s proposal is provocative. The court process complete with judge and jury would be unwieldy and decisions could arrive belatedly. However, her proposal does speak to the opportunity to design a formal process, supported by legislation that is guided by the principles of autonomy, informed decision-making, public scrutiny, and timely responsiveness. The management of the formal process could be decentralized to a “Life Tribunal”, a formalized group of professionals charged with decision-making, or to the local health authority that had responsibility for acute, long term and community care. If such a process, underwritten by legislation, were developed it would be legal, responsible, and ethical.
One might ask, “Had Dr. Donald Low applied for an adjudicated process would his application have passed?” The answer is most likely, “Yes!” Perhaps the stories that panelists would hear about people’s lives, their hopes, their expectations, and their worries would, much like Dr. Low’s video, bring dying out of the closet. Perhaps we could start giving as much attention to the end of life as we do to the beginning. Perhaps we could even begin to celebrate a life well-lived while individuals are still alive to enjoy accolades.
To paraphrase Margo Mcaffery, “A dignified death is whatever the person approaching death says it is, and a dignified death should happen whenever the person approaching death says it should.” Medical aid in dying is not a substitute for palliative care, but it may be the last palliative measure available to ease suffering of individuals diagnosed with an incurable illness. Sue Rodriguez and Dr. Donald Low would have understood.
* Ms Besel was the Vice-President Nursing at Montreal’s Royal Victoria Hospital (RVH) when that hospital opened the first Multidisciplinary Palliative Care Unit in a Canadian Teaching Hospital in 1973.
BONNIE L. LENDRUM, November 29, 2013