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The Importance, and Limits, of Advanced Care Planning

Abraham Schwab

As many of you may know, Diane Rehm recently agreed to limit her participation with Compassion and Choices. Her involvement with the group became more publicly known in February, but her dissatisfaction with our current end-of-life choices was catalyzed by her husband’s passing on June 23, 2014.

As he approached the end of his life, his options for ending it on his terms were limited. His physician refused to give him an (illegal) prescription for physician-assisted suicide. And so, John Rehm made the conscious choice to stop eating and drinking. Over the course of the following days, he slowly descended to his death.

It was only a couple of months after John Rehm’s passing that Brittany Maynard made national headlines. She was also dissatisfied with the options available to her. In her home state of California, she was left with the same options John Rehm had. Starve herself or wait until the disease killed her. She moved to Oregon, where physician-assisted suicide is legal, and in early November 2014, she took advantage of Oregon’s provisions and took her own life.

The common wisdom or our times suggests that these two cases are obviously different. But what makes them different?

In both cases, an individual takes the steps necessary to end their life with the full knowledge of medical staff. In both cases, the patients make a choice to end their lives and follow through with it. And in both cases, medical care and treatment were part of the dying process (for John Rehm—the alleviation of pain; for Brittany Maynard—the medication to end her life). Given these many commonalities, why are they treated so differently as a social and legal matter?

I reached out to a colleague, Thaddeus M. Pope (who has been a guest on Diane Rehm’s show), and asked him about the difference. He’s published in both law and bioethics journals about what’s called VSED (Voluntarily Stopping Eating and Drinking) and he pegged the difference as one between negative liberty (refusal of food and water) and affirmative intervention (prescribing a medication).

I can appreciate how one might draw this distinction in this way, much as one distinguishes between those old enough to vote and those who are not. Some distinctions, even if they wouldn’t stand up to serious scrutiny, serve a practical purpose. But I wonder if the distinction between physician assisted suicide and VSED still serves a practical purpose.

Today, April 16, 2015, is National Healthcare Decisions Day, a day committed to Advance Care Planning (ACP). The first steps of ACP involve assigning a health care representative. In some states (like Indiana), this first step is more important than it is in other states (like West Virginia). But Brittany Maynard and John Rehm were well past these first steps. For them, ACP would involve preferences about certain kinds of treatment, about resuscitation after cardio-pulmonary arrest, or about intubation or other pulmonary support.

"Lerner and his family now faced a choice: follow the directives of his father the physician or acquiesce to the requests of his father as he fades. Adhere to the plans laid by a cognitively capable person, or follow the requests of one whose cognitive functions are impaired."

Barron H. Lerner recently wrote about his father’s Advance Care Planning and reflected on the decisions leading up to his father’s passing. Lerner’s case had a specific kind of problem that we don’t often think about, but that many of us will face just the same. You see, Lerner’s father had repeatedly told his wife and children not to prolong his life near the end. Because Lerner’s father had been a physician treating those at the end of life, he had watched too many patients have their suffering extended in ways he disapproved of. But then, right at the end, Lerner’s father changed his tune. When he was in exactly the point of life when he thought so many patients were being treated aggressively when they shouldn’t have been, whose suffering was being unduly extended, Lerner’s father asked for the treatment he had planned to refuse.  

Lerner and his family now faced a choice: follow the directives of his father the physician or acquiesce to the requests of his father as he fades. Adhere to the plans laid by a cognitively capable person, or follow the requests of one whose cognitive functions are impaired.

And so, while I think we should use National Healthcare Decisions Day to remind people to assign a healthcare representative and to think about the kind of care they want in the twilight of their life, I think we should also do something more. We need to take a closer look at what kinds of decisions we allow people to make in their advance care plans. Should they be allowed to request the cessation of nutrition and hydration for their future, cognitively incapable self? Should they be allowed to request other kinds of help in ending their life? And should we respect those requests when they appear to change their mind, even though their mind may no longer appear to be all there?

On this National Healthcare Decisions Day, I challenge each of you to think seriously about what you want for the twilight of your life. And I challenge you to think about the limits we should put on the plans you’re allowed to make.


Abraham Schwab is an associate professor of philosophy and a medical ethicist at IPFW.

Opinions expressed in this column are those of the individual writer and do not necessarily reflect the opinions of the staff, management or board of Northeast Indiana Public Radio. If you want to join the conversation, head over to our Facebook page and comment on the post featuring this column.

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