Hanging on to life
We all know that we are not immortal. But most people go through life thinking of the end as “over there,” sort of like the end of a rainbow.
We usually talk about death in the abstract unless it occurs to someone dear to us. Then, a whole range of emotions surfaces. But our own death is an abstract, even for the practical and action-oriented people who plan for their funerals, make sure all their documents are in order, write their eulogies and carefully construct their wills and living wills. But it is still, for most, “over there.”
With all the discussion in the past few years about advance care planning, with its emphasis on conversations with your loved ones accompanied by the implementation by many of living wills, one would think that attempts to stretch out the end would be rare, and perhaps only for those with strong religious reasons.
It might be thought that most people, especially when there are few if any medical options and quality of life is severely compromised, would accept death with a degree of equanimity. In such cases, whether it is the person making the decision or a substitute decision maker (SDM), such decisions might be made with the main focus of treatment on comfort, compassion and care, which would be within the usual principles of palliative and end-of-life care.
In the usual models of palliative and end-of-life care, the focus is primarily on symptom management, with a special but not exclusive focus on pain. Many people erroneously believe that pain is the primary source of suffering at the end of life, especially in the face of malignancies. Actually, other symptoms are no less important, but within the broad practices and principles of palliative care, most disquieting and uncomfortable symptoms can be controlled and people’s suffering alleviated.
With this background, I found it somewhat surprising that, according to a large-scale study that’s repeated on a periodic basis, the percentage of individuals, be they patients or SDMs, who request more acute medical interventions at the end of life is in fact growing.
This spread between those prepared to accept symptomatic care as they approach the end of life and those who ask that “everything medically that can be done should be done” flies in the face of the expectations of the medical community and of those who have promoted advance care planning.
So how does one explain this quest for prolonged life even when many would say the life is without any quality, or there appears to be excessive suffering or that further treatments would be futile?
The study looked at as many factors as possible that might explain such expectations and hopes, and there was no consistency from religious, social, ethnic or other parameters that stood out. Maybe it is something more profound and a reflection of the absence of the rituals and rites associated with the end of life that existed prior to the modern medical era.
Families hovering, religious people saying prayers, family members reciting favourite poems or singing favourite melodies, or the aroma of scented candles or special herbs and spices, the chanting of hymns – all these old-fashioned rituals have been replaced by the pinging of monitors, the wrist band of identification, the computer-generated test results and the discussions of evidence-based options and salvage treatments.
Even the idea of using CPR on a person who is clearly dying is now sometimes considered part of the “normal” menu offered by modern medicine. It’s important because after it is all over, when family and friends discuss and review the person’s life and the last days, family members can say that “everything that can be done was done.” Rarely is there any acknowledgment that much of what was done had no impact on the actual outcome, but it may have affected how loved ones look back on the event in ways that reinforce their feelings of love and devotion to the person who “passed away,” the phrase often used euphemistically for “died.”