It’s been five years since my grandmother died, and I still remember how sterile, cold, and distant her hospital room felt, no matter my family’s loving efforts to make it look more like home.
I still remember the guilt-feeling too, of having to work up the nerve to visit her there. You see, some days were better than others for her; she experienced a lot of physical and psychological suffering during the last years of her life. There were good days, when she accepted her condition with ease, grace, and humor. And, I’m happy to say, there were a lot of these days.
But there were also days when she resented, and was traumatized by, being stuck in a bed, only to be moved back and forth between an emergency room and a long-term-care facility until the day she died ‘naturally,’ in-hospital.
I was recently reminded of the suffering Nan endured during her declining years, when I read the story of Susan Griffiths; a Canadian citizen who was assisted to die in Zurich, Switzerland on April 25. Susan suffered from multiple systems atrophy. Before her death, she gave voice to her personal belief that a prolonged and medicalized death is unduly painful, undignified… futile even. She regarded the legally-accepted Canadian practices of palliative care and withdrawal/withholding of life-sustaining interventions not as options, but rather the cruelest of death sentences. Her only recourse was to travel to Switzerland in order to die on her own terms, and she considered herself fortunate that she and her family could afford to do so.
What people like Susan and my grandmother show us is that the way a person dies may be of so much significance to her that it can profoundly affect her life-structure – the meaning she has created, her identity, accomplishments, and her core interests – in tragic ways… in ways that far exceed the physical deterioration of the body. Knowing this, and knowing that our society has the technology to enable a pain-free death, gives rise to the issue of whether physician-assisted dying should be part of Canadian medical practice for terminally-ill patients.
It is my belief that what should be weighted in end-of-life care is not merely the presence of life itself and the state of the body, but also the value of that life for the patient. When the law hamstrings physicians to act on the basis that more life is always better, some terminally ill patients are left suffering, held hostage by a life that they do not want. An individual should not be forced to let a terminal illness reduce her to a shadow of her former self. She should be free to end a life she no longer wants in a way that is not violent, and does not involve discovery by friends and family.
I want to be clear that I am not arguing for physicians to help people to end their lives for any reason whatsoever, but rather to regard suffering as a legitimate medical condition and thereby broaden what it is we mean by the medical principles of mercy and non-abandonment. These principles must extend to treating persons, not just their bodies.
When the law only enforces one kind of value – when it only cares whether a person’s heart is beating – we leave little, if any, room for a person’s overall best interests at the end of life. Our current law’s focus on the patient as an object to be treated, cured, and restored to ‘normalcy’ is coming at the expense of other dimensions of human existence. More focus must be devoted to patient experience and choice.
Terminally ill patients who are not depressed, who are competent, and who have formed enduring decisions should have the power to choose if, when, and how to use the medical technology that is supposed to be for their good, to determine for themselves what they are willing to endure.
For some patients the harm is not in dying, but in being kept alive.