Wednesday, April 9, 2014

Timbre at Death: Fragments on End of Life Care

By: Mohini Banerjee

This post is a small collection of impressions and quotes, hopefully prompting us to ruminate and reflect on the end-of-life.

“Nothing that you do in science is guaranteed to result in benefits for mankind. Any discovery, I believe, is morally neutral and it can be turned wither to constructive ends or destructive ends. That’s not the fault of science.”—Arthur W. Galston Quoted in an obituary piece for the New York Times.

Last week I attended an informal lunch discussion around the circumstances of a “good” death. In full bioethics form, we discussed the voluntary stopping of eating and drinking and physician assisted suicide. However, within ten minutes the discussion turned to music—that is, what would you want to hear when you go? I’ve never considered that question. It seemed oddly specific, macabre, and perhaps a little too eager. The scholars I conversed with seemed more comfortable discussing various likes and dislikes (certainly no Vivaldi), and I suggested my own favorite, Holst’s “Jupiter”. We talked about music and how Pete Seeger died with his friends and family singing in his hospital room. Persons and lovely harmonies seemed to soothe the often painful experience of dying. Some around the table discussed personal experiences, family or others, and the decisions taken towards the end-- meant to provide for oneself, while trying hardest to protect ones left behind. Their understanding of loss was completely enveloped in an ethical discourse on agency and patients’ needs.

“In quixotically trying to conquer death doctors all too frequently do no good for their patients’ “ease” but at the same time they do harm instead by prolonging and even magnifying patients’ disease.” 
 Jack Kevorkian, Prescription: Medicide: The Goodness of Planned Death 

Which words we choose around hastening death are particularly important since “euthanasia”, “physician assisted suicide”, “death with dignity”, “aid in dying”, “suicide”, “voluntary stopping”, "palliation", and “no extraordinary measures” are only some of the terms that contain their own emotional valences and particular historical backgrounds. Often this language gets conflated, bringing about both confusion and some misunderstanding. Some, for instance, would object to my inclusion of a quote by Dr. Kevorkian given the potential harm in including his ideas into any “reasonable” discussion on aid in dying. I agree that the mistaken assumption that aid in dying means euthanasia is harmful to a movement towards choices at the end of life. However, if we’re considering values at the time of death then our discussion should consider the reasoning of those who advocate for marginal positions.

“With terminal illness, your fate is sealed. Morally, we’re more comfortable with a situation where you don’t cause death, but you hasten it. We think that’s a bright line.” –Arthur L. Caplan Quoted in “True Freedom” Time Magazine.   

As a society we may want to be thinking more about the music and people we want in the room than the particular medical intervention that would make us most comfortable. We may not want to think of this at all. A melody chosen in the midst of a hypothetical conversation only signals our hope for a certain mood, however distant and contrived. Death, on the other hand, is uncomfortable both in actuality and in how we refuse to acknowledge its reality. Discussing medical decision-making at the end forces a contemplation of physical and mental anguish, but considering our soundtrack does not. In that potential future we are free of pain. And, whatever fear of the unknown we began with is pacified. We simply surrender to the trumpets blaring, drowning out the likely beeping machines. 


Mohini graduated from Smith College in May 2013 and is a research assistant at The Hastings Center, an independent non-profit research institute in bioethics. She founded Bioethx Under 25 in January and acts as Editor in Chief. For interest in the blog please email her at bioethicsunder25@gmail.com.

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