End-of-Life Ethics: Family Members, Conflict, and Politics

Kenneth W. Goodman, PhD


November 16, 2010

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Kenneth W. Goodman, PhD: Hi, my name is Ken Goodman and I direct the Bioethics Program at the University of Miami. What I want to talk about are the challenges we face in end-of-life care, especially in a post-Schiavo world.

A common misunderstanding of the use or utility of bioethics is that it consists of saying, "Stop, don't do that, slow down." In fact, when ethics is at its best, it helps to solve all kinds of ordinary clinical problems for physicians and other health professionals. I think you could make the case that one of the best examples of that is the tools that we have for managing end-of-life care.

For any patient, there are 3 parts to valid consent: adequate information, voluntariness, and capacity. I have to know what's going on, it has to be a free choice, and I have to be, generally speaking, able to understand and appreciate the information. You can't make me consent, though. The point of it being voluntary is that I get to say, "no." That means I can refuse any treatment I want, even life-sustaining treatment. If I happen to be incapacitated, we have processes in place for me to appoint surrogates. If I haven't appointed one, all states have a list of proxies who are able to step in and help make those decisions. The important thing though is that no means no, even if it will lengthen my life, even if the treatment is life sustaining. It may make us sad, and it's going to cause great grief to family members when a loved one dies, but the beauty of this is that ethics has managed to say, "Here are ways in which you can make something that's sad, make a bad thing as positive as possible."

Death is generally a bad thing. We don't wish it; we don't seek it any sooner than necessary, generally speaking. But what the rules of valid consent and refusal give us are means for people to say, "We don't value treatment that's become burdensome. We understand there might be trade-offs, but all things being equal, I'd rather for example, die peacefully and pain-free at home with my family than in a critical care unit with people banging on my chest." If someone wants to have someone bang on their chest, that's a different matter all together.

Sometimes that agreement about the utility of ethics when it comes to end-of-life care encounters different social perturbations. I'm mindful of the fact of the Terry Schiavo case is still something that people continue to think about, talk about, and in fact, it's had a role in some of the recent political campaigns. It's important for ordinary people to understand that the Schiavo case was not typical. The Schiavo case was a case that seemed to be about end-of-life care, but I think it was really about other sorts of things. It was about families in conflict or family dysfunction even.

In fact, most ordinary doctors know that some of their greatest challenges and most difficult challenges, especially at the end of life, involve family members who are in conflict. Perhaps a daughter disagrees with a father's decision or a spouse disagrees with his wife's. How you manage that as a physician is a great source of controversy, and it's something that frankly we have the privilege of teaching students in medical schools but don't spend enough time addressing. How do you work with family members? How do you make sure they know they've done all they can do?

We see in many jurisdictions family members insisting on the overtreatment of their loved ones, not for the sake of the loved one, but so the family member won't feel bad about not having done everything possible. This includes family members who didn't care very much about their loved one before they got sick, but who now, when their loved one is on a death bed, somehow think they need to rise to the occasion. Overtreating patients for their family member's sake I think is widely agreed to be inappropriate.

In some cases, the Schiavo case being perhaps the best recent one, you have a son-in-law in conflict with his in-laws. It's not the only time that happens, but in the Schiavo case it involved litigation. It involved court filings ultimately it caused -- basically captured the interest of the country and the world for years. It ended, by many people's lights, the way it should have ended earlier, namely by the peaceful death of Ms. Schiavo as the result of the termination of artificial hydration and nutrition.

Be careful, there were people usually with political access who would say that something bad happened or that she suffered or that she was somehow done wrong. Don't believe them. Those are people who place politics ahead of patient care. In fact, what we've learned is that patients in permanent or persistent vegetative states actually feel nothing and suffer nothing and that's what the neurologists agree was her diagnosis. That case moved forward based on politics, extremist politics to be sure, but nevertheless it was politics.

Here's what has to happen next. There are judges in some jurisdictions who have actually said, "I don't want to be Schiavoed," meaning they are inclined to rule not in favor of a patient's rights or a patient's refusal of treatment, but in favor of the complaining family member. That's not the right thing to happen for a number of reasons, not the least of which is it impedes high-quality medical care. Patients and their doctors tend to make best decisions when they work together, and when they communicate well. Family members in denial or when legislators with an axe to grind are not the way that end-of-life decisions should be made. That has always been, and thanks to the tools of bioethics, ought to be in the hands of doctors and patients.

It's true that death is inevitable, but ethics, in many cases, can help physicians and patients work together to make the best of it.


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