A number of years ago, I was asked to offer a lecture series on the ethics of care for the terminally ill for hospice administrators. Although I spent several classes discussing the “hard cases” that involve complex ethical decisions (like artificial hydration and determining the physiological criteria for death before harvesting organs), I spent several other classes exploring the “ethics of care.” In those lectures I reflected on the more personal, less technical aspects of care that include how medical professionals should relate to the patient, to the family, as well as the role of the faith community and mental health care. Though participants found the hard case discussions useful, they found the ethics of care topics much more compelling, and said that it was this more “human” approach to medicine that drew them into hospice work. Once someone has been diagnosed as terminally ill, the temptation to reduce the person to a problem lessens precipitously.
I used Five Wishes to reflect on what it might mean to “prioritize” various aspects of medical care. All agreed that the personal touches of care and compassion were foundational, and that the technical and problem-solving approaches should always presuppose them. One woman said, “Although it’s difficult to invest yourself personally in others, and it takes some real boundary work, the dividends pay off in abundance. Making sure people feel safe, listened to, are connected with important people in their life – that’s gold. But when they feel cut off, alone, threatened, it’s counterproductive. The mind-body unity responds well to love.” I agreed, and said that’s precisely why the vision of Five Wishes is not only for end-of-life medical care. It’s also a prophetic call to the entire medical profession to privilege the humanity of patients and make technology and problem-solving a servant of care for the whole person.
This blog doesn’t normally concern itself with popular music, but last week I heard the new Twenty One Pilots cover of My Chemical Romance’s 2006 song, “Cancer.” It’s a heartbreaking lament by someone dying of cancer, and the themes it raises interface beautifully with what Five Wishes is all about – the need for human connection; fear of isolation; the need to express meaningful sentiments to loved ones; personalized care; attentiveness to physical discomfort; and family. Take a few minutes to listen to the song, and if you’ve known anyone who has died of cancer while undergoing chemotherapy, your heart will be stirred, as was mine.
Tom Neal, PhD is Academic Dean and professor of Spiritual Theology at Notre Dame Seminary in New Orleans, Louisiana and author of the popular blog Neal Obstat.
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