Hospital ethics consultants mediate end-of-life care

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Hospital ethics consultants mediate end-of-life care

Specialists try to forge compromise when families, caregivers disagree about patient's future
Brian Donohue

[Editors’ note: This is the sixth in a series of seven articles about bioethics. Q&A’s include UW experts discussing the beginning of lifeend of life/futility, clinical consultationpain careresearch and teaching. An overview started the series.]

The principal accrediting organization for U.S. hospitals, the Joint Commission, requires institutions to have a mechanism by which staff, patients and families can get help addressing ethical issues. Denise Dudzinski, UW associate professor and director of graduate studies in the Department of Bioethics and Humanities, co-chairs UW Medical Center’s ethics committee. She has been a committee member since 2001.

Q. What’s the purpose of a hospital ethics committee?

A. We have three missions: Provide consultation in clinically and ethically complex cases to support providers and patients. That’s the bulk of our work. Second, we review, analyze and write policies, such as the withholding and withdrawal of life-sustaining treatment. The third mission is to educate healthcare providers about ethical issues that frequently arise.

“Let’s be OK disagreeing, and then see if we can walk through it and find a compromise,” Denise Dudzinski said about her role as a clinical ethics consultant.
picture of Denise Dudzinski

Q. What’s UW Medical Center’s committee look like?

A. We meet monthly and have 10 to 15 people, depending. That includes community members, physicians, nurses, social workers, professors. In some hospitals, the entire committee also provides ethics consultation. We don’t do that here; we have five or six committee members who do consults, and one of us is always on-call.

Q. Do case consultants have advanced training?

A. Requirements for performing ethics consults vary widely because there are no national standards. Our consultants have advanced degrees, fellowship training, and/or have been teaching bioethics for a long time. In other hospitals, you might need only to attend a CME course like our summer ethics seminar.

Q. What happens during an ethics consultation?

A. Ninety-plus percent of cases involve end-of-life decision-making. Typically the patient is on life-sustaining treatment like dialysis or a ventilator, and the question everyone is facing is whether those interventions are still beneficial. People have differing points of view, informed by their professional and personal values, and our job is to listen for areas of agreement and disagreement, provide an analysis and see if we can help carve compromise in a respectful way. Each month, consultants present their cases and recommendations to the full ethics committee for peer review.

Steve Garfield | Flickr
A newspaper editorial weighs in on a proposed law regarding end-of-life decision-making.
A newspaper editorial weighs in on a proposed law regarding end-of-life decision-making

Q. You make a recommendation, not a decision?

A. Yes. We are not judges. We provide analysis that helps people identify the sources of agreement and disagreement, so everyone can come up with options we might not have thought of before. The final treatment decision remains with the attending physician and his or her team, and the patient and his or her surrogate decision-maker. But our recommendations influence those decisions, so we need to be grounded in integrity.
Q. Is the patient usually aware?

A. Usually by the time we’re involved, we are working with a surrogate, usually a family member. The patient is no longer actively making decisions because of their illness. Not always, but usually.

Q. Do calls come in at all hours?

A. Occasionally. The consultant on call would do an intake to find out what’s happening.  They might call another consultant for input, even in the middle of the night. In the rare cases when it’s an emergency, people have to act quickly and don’t have time for a full consult, but we can provide information to help the caller. We typically have hours or days to conduct the consultation, and it can take that long to get everyone’s point of view.

Q. Over time, are cases so similar that you can predict how one will play out?

A. We see themes but they play out differently in each case. One common theme is that too many people are talking with the surrogate about the goals of care and the surrogate is getting exhausted and frustrated. They might feel like no one is listening to them. The relationship between providers and family breaks down. So we might suggest one person to be on point to talk with the family; it may be a member of the palliative care team or a trusted clinician. The consultant’s obligation is to pay close attention to the details.

Clare McLean
Surgeons implant an artificial heart at UW Medical Center; such devices can add complexity to discerning a patient's likely survival.
picture of surgeons implanting an artificial heart at UW Medical Center

Q. What’s an example of a complicating detail?

A. Sometimes we have to learn about the technology as we’re doing the consult – mechanical circulatory devices (that assist blood flow), for example. We’ve gone from left ventricular-assist devices to total artificial hearts. So what does dying or comfort care look like for patients with total artificial hearts? How can we support clinicians as they care for patients with these devices? How can we support the patient and their family? These questions also arise with dialysis or any other life-sustaining measure.

Q. Do you also mediate disagreements between caregivers?

A. Sometimes. There can be differences of opinion about what treatments should be offered or whether to recommend a shift to palliative care because we think we’ve exhausted the benefit of life-sustaining therapies. One group of providers might say, “Yes, we should broach this topic.” Another group might think, “We’re not there yet.” Or the question of whether to code (provide cardiopulmonary resuscitation to) a patient. One group might recommend against, saying, “We’re just going to hurt them and have no chance of helping them.” Others might say, “If the patient’s family wants (resuscitation attempted), we should try.”

Q. And they all are trying to do the right thing?

A. Right. Reasonable, caring people often disagree about what to do in an ethically complicated case. That’s the nature of an ethical dilemma.

Brian Donohue
Members of UW Medical Center’s ethics committee participate in a grand rounds session this past fall. Dr. David Woodrum, a pediatrician and neonatologist, is speaking.
Members of UW Medical Center’s ethics committee participate in a grand rounds session this past fall. Dr. David Woodrum, a pediatrician and neonatologist, is speaking.

Q. Do some cases merit more than one consultant’s opinion?

A. We are a single-consultant model, but when a case involves disagreement about whether to withdraw life-sustaining interventions, and there’s been persistent disagreement, we often need to figure out who should make the final decision. This issue has been debated for years and society hasn’t come to consensus. The primary consultant will enlist another consultant’s input, as a rule, before making the recommendation in the interest of ensuring a fair consultation.

Q. You mean whether the family or the physician makes the call?

A. Yes. Every consultation is unique. We help people figure out: If we have to lean one way or another, which way should we lean? We can help discover middle ground, too. For example, let’s do a timed trial of this treatment. After a week we’ll see if the family thinks there’s been improvement and the provider thinks there’s been improvement. Then we can reconvene.

Q. Are patients and families surprised that they have an advocate in your group, and that the hospital’s ethics consultant isn’t automatically on the physician’s side?

A. I think they see us as part of the structure of the hospital. We’re another consultant who’s coming in to talk to them.

My recommendation may read as supportive of one side or the other, but ethics consultants are not advocates for anyone. I don’t walk into a consultation thinking, “I’m going to be a patient advocate” or “I’m going to be a hospital advocate” or doctor advocate. What I’m advocating for is a fair process. It would be a failure to me if I did an ethics consult and didn’t hear from the surrogate or from a specialist who was very involved – especially if I found out later that they disagreed with my
recommendation. Those would be failures because the fairness has broken down.

The disputed continuation of Terri Schiavo’s medical care went all the way to the U.S. Supreme Court. She was kept alive on a ventilator in what doctors called a “persistent vegetative state” for 15 years before she died in 2005.
Photo of Terri Schiavo

Q. When an ethics consultant is brought in, does that input typically yield a resolution that satisfies both sides? Does the family appreciate your expertise?

A. Sometimes. It’s not uncommon for everyone involved to be sad. By the time we’re involved, people are dealing with tragedy. People don’t cheerfully think everything’s going to get better. I think they can appreciate the idea that we are trying to understand everybody’s point of view before everyone makes a huge decision that people have to live with forever.

Q. Say you’ve made a recommendation in a case. During the peer review, do you ever land in a different place than you were in with your recommendation?

A. Do we find that we should’ve handled something differently, or do I wish I had handled it differently? Yes, that does happen, and we take it seriously; we don’t want to repeat that. If there’s follow-up we can do in the particular case, we do.

Q. When the whole committee analyzes a hospital policy, is a patient case typically motivating that evaluation?

A. Sometimes but not always. For example, a policy about organ donation after cardiac death reflects a broader trend in organ recovery. When the Death with Dignity Act was passed, that’s a broader policy issue that every hospital had to figure out how to handle.

Q. What’s the tenor of committee meetings? Are there disagreements?

The organization Engage with Grace encourages people to discuss "The One Slide."
a picture of several questions about choices regarding care in case of terminal illness

A. We welcome candor and encourage everyone to speak. There’s a lot of give-and-take and we like to debate. It’s all in the spirit of challenging each other to do a better job, and to think of things we wouldn’t have considered unless we were challenged.

Q. What do you enjoy about working on the ethics committee?

A. I like that we can help people step through disagreement and diffuse the anger or tension that comes with it, just by acknowledging that caring, reasonable people disagree about really important things. Let’s be OK disagreeing, and then see if we can walk through it and find a compromise.

Q. Would you expect the Affordable Care Act and new consciousness about costs to influence physicians’ decisions about withholding and withdrawal?

A. I’m sure it will but it’s difficult to predict how. In general, while allocation of healthcare resources is always a part of what we do here, it’s not always at the forefront of people’s minds when making decisions about individual patients.

I do see the potential for alleviating some issues. For example, one vexing issue is a patient who no longer needs acute care and should move out of the hospital but isn’t ready to live alone at home. And skilled nursing facilities won’t take their insurance. This is so hard on everybody: the patient, family members, the social workers, the caregivers. It’s possible that the Affordable Care Act, if it results in more options over time, will start to alleviate situations like that.