I recently met with a couple I have known for years. They had requested the meeting to discuss their “living will,” also known as an advance directive. The husband brought along a document that had been completed 20 years before; it contained many euphemisms such as “no heroic care” but lacked details about some of the common challenges that exist in contemporary end-of-life situations.
Based on my medical experience— almost 40 years as a physician in Canada as well as in a number of jurisdictions with universal healthcare systems—these documents often provide no assistance to caring family members and may actually result in terrible conflicts as families struggle to make decisions. The couple confided that they had met with their two sons to discuss the issue, and one of them was so upset by the subject that he withdrew, saying, “how morbid can you be to talk about dying!” This is generally a signal that advance care planning must be given serious consideration in order to pre-empt conflicts and negative experiences that result when difficult decisions have to be made. Modern medicine often leads to interventions that try and salvage a person’s life when what is really needed is proper palliative care. These important issues should be discussed with loved ones, especially those who may fulfill the role of substitute decision makers (SDMs). I found a recent New York Times article, entitled “Coverage for End-of- Life Talks Gaining Ground” to be an ironic commentary on the sad state of contemporary American medicine. The article started with the following: “Five years after it exploded into a political conflagration over ‘death panels,’ the issue of paying doctors to talk to patients about end-of-life care is making a comeback, and such sessions may be covered for the 50 million Americans on Medicare as early as next year.” Now—very incrementally—the American people, physicians and bureaucrats are beginning to develop funding mechanisms for what is now recognized as a very important, humane and respectful process of discussions.
These are key components for assuring that one receives the desired care when one’s life is coming to its end. Immortality is not part of the human condition, and thus this is an undertaking that must be seriously addressed. In most jurisdictions—including Canada, where much but not all of the negative stigma of end-of life planning has been overcome and advance care planning does exist—there is ample evidence that it greatly supports patients, their families, and healthcare and social service professionals. I have not practised for many decades in the United States, but I have dealt with American family members going through end-of-life situations.
I was appalled by the focus on technologically prioritized treatments in contrast to palliative care philosophy- based decisional options in cases where invasive medical treatments are likely to be futile. This is less common but not completely so in Ontario, where I currently work and have had those conversations for many years. The important message is that these conversations are crucial. I witness it when patients are admitted to the palliative care unit where I work. Most, but not all, patients and their families understand what the stakes are, and are prepared to make the best palliative and comfort care decisions in co-operation with the dedicated healthcare professional staff, with a focus on symptom management and psycho-social issues rather than on elusive technological treatments. This should be the standard of practice in this century.
Modern medicine has many “tricks” up its ever-expanding technological sleeve. Physicians must help patients and their families know when it is time to say “enough.” End of life should be dignified with very little physical and emotional suffering.
Dr. Michael Gordon is Medical Program, Director of Palliative Care at Baycrest Geriatric Health Care System.