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What should you do when a patient refuses lifesaving treatment?

Stacy Weiner , Senior Staff Writer
May 7, 2019

Arthur Derse, MD, JD, one of the country’s leading bioethicists, discusses today’s most complex ethical issues — and guiding principles for moving forward.

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When should physicians end lifesaving treatments? How can we balance pain relief against the risk of addiction? Are patients prepared to handle revealing genetic information? All these and more are the day-to-day domain of biomedical ethicists. Weaving lofty values into gritty realities, bioethicists help patients, families, and providers make some of the most difficult, painful decisions they may ever face.

Over the past 30 years, Arthur Derse, MD, JD, has monitored and molded the field of bioethics. He has influenced hundreds of students as a professor of bioethics at the Medical College of Wisconsin (MCW) and co-author of Practical Ethics for Students, Interns, and Residents: A Short Reference Manual, 4th Edition. Derse also directs MCW’s Center for Bioethics and Medical Humanities, has served as an ethics consultant and committee chair for several hospitals, and is a fellow at the prestigious Hastings Center. He co-authored the American College of Emergency Physicians Ethics Manual and has been quoted on some of society’s most pressing ethical quandaries by the Washington Post, New York Times, NPR, and numerous other publications.

Derse talked to AAMCNews about some of today’s most complex biomedical dilemmas and helpful ethical guideposts physicians can use to handle them.

What compelled you to go into bioethics?

I went to medical school at the University of Wisconsin School of Medicine and Public Health, where I took an introductory course in bioethics taught by a pediatrician, a lawyer, and a philosopher. It was fantastic. That's what first got me interested.

Then the specialty I chose was emergency medicine, and the people who oversaw my residency were not as interested in ethics. They felt there really weren’t any ethical issues in the emergency department. You admitted the patient and sorted out any ethical issues after that. But I thought there were a lot of ethical issues, including that people would sometimes refuse life-sustaining treatment in the emergency department, and you had to consider, “Should I respect the patient’s refusal? Did the patient really understand the risks of refusing treatment?”

That kind of issue kept showing up and would later be the basis of some very prominent legal cases. I was interested in legal issues in general, so I obtained a law degree, but I found that knowing the law in a given situation still leaves many ethical issues to be sorted out.

Approaches to bioethics have evolved significantly since you first entered the field. Can you talk about that?

Back in the day it would not be uncommon to override a patient’s wishes, such as if the patient refused a blood transfusion because of their religious beliefs. That was then, this is now. A number of benchmark court cases have recognized the patient’s right to refuse life-sustaining treatments such as transfusion, ventilation, nutrition, and hydration. That was a major shift.

Today those original ethical issues remain, but they also have expanded because we now have more technologies that allow us to prolong life, and patients and their families therefore demand these treatments in the wish to “do everything.” Unfortunately, sometimes doing everything will only prolong the dying process with no real medical benefits.

What is the role of the bioethicist in such situations?

In the old days of paternalism, a doctor might say, “Well, we need to stop treatment.” But in the new days of shared decision-making and family communication, a physician might say, “Oh, it doesn’t look good, what do you want us to do?” That puts a huge burden on the family.

The old approach has not always been replaced with an effective and strong approach to advising families. People often look to their physician to say, “Based on my experience and your values, here’s what I recommend you do.” Patients are looking for a counselor. They are looking for someone who has the judgment to help them make the best decision. When the physician isn’t able to do that in a supportive way for the patient and the family, the ethicist’s role should be to advise the physician and the family about what the best ethical choice would be in the situation. Of course, no one has to follow the ethicist’s advice.

Other than end-of-life issues, what are some compelling concerns in bioethics today?

One is assisted reproduction. There are many related ethical issues like determining who are the parents, whether someone should be able to carry a child for another couple, whether that person should be paid for those services. That’s a burgeoning area.

Pain relief also is an ethical issue. Years ago, there was concern about the addictive qualities of opioids. Then there was a sea change that said that pain needed to be addressed as a fifth vital sign, but now the pendulum has swung back. The ethical considerations here are, How do you balance the benefits for the patient, their personal wishes for pain management, and the need to avoid causing harm? It’s a medical decision, but it’s also an ethical question.

Your center is exploring ethical issues related to genomic medicine. Can you talk about some of those?

With publicly available websites for sharing genetic information, we now have the genetic information for a significant portion of the population. That allows all sorts of connections, including the ability to identify previously unknown suspects in terrible crimes because of their genetic relationship to other people in the databases. So, there are the issues of privacy and confidentiality in genomics.

And there are ethical issues with having your own genetic information as a patient. For example, if you know that you have a gene that predisposes you to breast or colon cancer, that presents opportunities for prevention but also some tough dilemmas about what to do with that information for yourself and for your relatives.

Of course, there’s also technology such as CRISPR that allows the genome to be modified. The ethical dilemmas that have come along with that are huge and expanding. Some of it is very hopeful. The possibility of successfully treating people genetically with sickle cell disease is exciting, and modifying female mosquitoes so they are unable to reproduce to transmit malaria is exciting as well — but these developments have unknown consequences as well.

Are there some basic principles that help pave a path for those who make bioethical decisions?

There are four widely accepted principles that many bioethicists use as a common framework and language. They are beneficence, or doing good; nonmaleficence, or not harming patients; respect for patient autonomy; and justice, which is often a matter of making sure health care goods are distributed fairly in society. Of course, how you apply these principles depends on the individual case.

Bioethical decisions are complex. You have to be very cautious about asserting any view in black and white.

The first time one of our physicians allowed a patient to die from refusing a transfusion, she was absolutely devastated even though everyone in the patient’s family was supportive of her decision, which was made with ethical consultation, to respect the patient’s wishes. She felt awful but she also wouldn’t have felt good about forcing the transfusion. Ethics is about trying to make the best possible choice among tough choices.

What types of case might keep a bioethicist up at night?

It’s always distressing when a patient who is dependent on life-sustaining medical treatment that you think could have a good quality of life wants to stop that treatment. A perfect example is someone who is paralyzed after spinal injury who wants to stop their ventilator. You know that studies show that people who have paralysis, over a period of time, will report lives that are as happy as those who do not have paralysis. You think this person could be pulled through, could get to the “other side.” But that patient’s right to autonomy overrides your beneficent wish as a physician, or as an ethicist.

There’s a famous case of a patient named Dax Cowart who was burned terribly and blinded. He wanted to stop his life-sustaining treatment. They pulled him through against his wishes. He would later go to law school and marry and the decision by the doctors seemed in retrospect like a really good decision. They asked whether he was glad they had forced treatment upon him. He essentially said yes, I’m glad I’m alive now, but you should have stopped the treatment. He stated that he did not want to go through what he went through to get where he was. If a patient has the ability to make decisions, then you have to respect the decision.

Is bioethics as a field growing and if so, why?

Around 40 years ago, most hospitals didn’t have an ethics committee at all. Now, every accredited hospital must have some mechanism to address patient ethical issues, and many provide that service right at the bedside.

In part that’s because so many issues have arisen, and many are quite complex. Hospitals have become more advanced with the technology they offer, which is expensive and requires intensive effort. There are cases of patients who are in — or appear to be in — a persistent vegetative state that bring a lot of ethical questions. With the vast array of technological interventions, physicians experience many challenges and ask for advice more often, and happily there are ethics advisors who can help out.

You direct the medical ethics curriculum at your medical school. Does every medical school teach ethics, and are the curricula fairly similar?

Yes, every medical school in the United States must have some instruction on ethical issues in medicine because it’s a requirement for accreditation. But the extent of the curriculum and the topic areas are not uniform.

If you go to a medical school with a religious foundation, for example, it may have a particular point of view on some ethical issues. You may learn that some OB-GYNs won’t offer some procedures and some will, and both are in good ethical standing with their professional organizations. Every medical school should teach the areas of ethical consensus and the areas of ethical controversy like physician-assisted death where there isn’t a complete legal or ethical consensus. In those cases, a good medical school should teach the various ethically defensible viewpoints.

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