COMMENTARY

When Families and Hospital Docs Disagree

Arthur L. Caplan, PhD; Nancy N. Dubler, LLB

Disclosures

May 07, 2015

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Arthur L. Caplan, PhD: I want to welcome you to Close-Up, an interview program that I host where we talk with leaders in medicine, healthcare, health policy, medical ethics, and health law.

Why a Clinical Ethicist?

I've got a great guest today, Nancy Neveloff Dubler, one of the founders of clinical ethics consultation. Nancy spent a long career at Montefiore, in New York City (NYC), as professor of bioethics and director of the Division of Bioethics. She's also Professor Emerita, Department of Family and Social Medicine at Albert Einstein College of Medicine in NYC.

She won't admit this, but she's sort of part-time now with the New York University (NYU) Medical Ethics Division, and still thinking about how to teach mediation and how to work around clinical ethics consults. She really is a pioneer in the field, and it's a great thrill to have you here.

Nancy N. Dubler, LLB: Thank you. It's a pleasure to be here.

Dr Caplan: Let's explore a bit. You are an attorney. Attorneys are not known for mediating or seeking alternative resolutions. I think many people are suspicious that all attorneys do is sue. How did you get into clinical ethics consultation? What made you interested? It was in the late 1970s, I think.

Ms Dubler: I graduated from law school in the mid- to late 1960s. I joined the Vera Institute of Justice in NYC to work on bail reform issues. Then I helped them set up something called the Manhattan Bowery Project, which was an alternative to the criminal justice system for alcoholics in the Bowery who passed out on the street.

But I've been interested in medicine and law for a long time. In fact, in my last year in law school, I and another law student, Harvey A. Silverglate—now a big civil rights lawyer in Boston—took the fourth-year psychopathology course with the medical students. We were two law students and, I think, 10 med students in the course, and we studied psychopathology, which included seeing patients.

What Is a Clinical Ethics Consultation?

Dr Caplan: You had an experience, hands-on almost, with patients that got you really interested in some of those issues. Let me ask this. Some wonder what clinical ethics consultation is. Some physicians certainly know about it. They've talked to somebody—a committee chair, somebody who carries a beeper and comes when asked to consult. How would you define it?

Ms Dubler: Clinical ethics consultation is the attempt by someone trained in principles of bioethics and in facilitating discussion—I argue they also need techniques of mediation—to help patients, families, and staff agree upon a care plan when there's disagreement and conflict.

Dr Caplan: It doesn't have to be just end-of-life care issues or terminal illness for which there is a consult?

Ms Dubler: No: There are all kinds of issues on which patients, families, and providers disagree. Often they're about end-of-life care, but they can be about any choice in which values play a part, because medicine is science but medicine is also value-laden, both from the side of the physician and the care team and from the side of the patient and family.

Elbowing Out the Physician?

Dr Caplan: Some physicians will say, "It's my job to handle disputes. It's my job to handle the patient and the patient's family. Why would I go outside of that relationship and get help?"

Ms Dubler: That's interesting. When I was at Montefiore for some 45 years, by the time I left people would say, "Call Dubler. She doesn't usually make it worse, and sometimes she makes it better."

Why call someone to help? If the conflict is difficult, if it's causing a lack of coherence in the care plan, if it's upsetting the staff, if the family is distraught, there are people who are trained to come in and give a hand. That doesn't mean they take over the job of the attending physician. Lord knows they are a consult service.

They come in and say, "Thanks for asking us; let's hear what's happening." They're naive to the situation—that is, they did not participate in any particular plan that went wrong. If everything went right, nobody calls for a consultation. A consultant comes in and is on neutral turf. They ask questions, and they listen.

Sometimes there are disputes between and among the staff. That is common in medicine, because data are interpreted differently by different people and there are power differentials in the hierarchy of medicine. When there are disagreements among the staff and it seeps out to the patient and the family, there is confusion, misunderstanding, and discord.

There are all kinds of things that a neutral person can do. That begins with just looking at the lay of the land and telling people what he or she sees.

Ethics Consult vs Ethics Committee

Dr Caplan: I've heard about ethics committees. What's the difference between an ethics consult service, or ethics consultation, and ethics committee work?

Ms Dubler: Ethics committees are very useful parts of any institution. They usually address policy issues, education...

Dr Caplan: ...defining such things as brain death or when a do-not-resuscitate (DNR) order can be issued—that sort of thing?

Ms Dubler: Right. They can work with the hospital to hone its policies around bioethics issues. It's much more common now for clinical societies to participate in the development of policies. But 30 years ago, that was not the case. The ethics committees do work on the development of policies. They work on education, and often they do case reviews. They might say, "Here's a case. It was a difficult case. Tell us what happened."

Dr Caplan: Kind of an ethics autopsy?

Ms Dubler: An ethics autopsy would be a good way to think about it. "What happened, and what can we learn from it?" That's very useful.

Sometimes ethics committees also participate in ethics consultations—that is, they intervene in a case that's ongoing, to help clarify and change the course of care. I'm opposed to that because it intensifies the imbalance of power between the care team and the patient and family.

It's hard enough for patients and families to cope with changes in staff, with white coats, with everybody looking the same. Then you come in with 20 people and the family says, "Wow. What do we have to say to these people?" So I'm actually opposed to that.

Dr Caplan: You think it loads up the disparity too much between the committee—which works with and for the hospital—and the staff, vs a vulnerable patient, a vulnerable family.

First Steps of the Consultation

Ms Dubler: The patient and family are always vulnerable in medicine because they're hurting. There's something wrong. They're scared. They're not on their own turf. They don't understand the terminology. To be overwhelmed then by a group of people who are knowledgeable about the terminology and who are on their home turf is to create a power imbalance, which I think is unethical.

There's a big difference between a committee consulting and a clinical ethics consult person or maybe a consult team. Teams are useful because you can't always think of everything, and it is terrific to have a colleague you trust pick up a point you've missed.

A clinical ethics consult team comes in and—I always argue that this is the first thing you do—meets with the staff, because if there are disagreements among the staff, that's going to spill over. You also want to try to get a sense of what the issues are.

You have to read the chart. You have to be educated about what the case is. But you are neutral, and you bring this neutrality into a difficult situation.

Once you've met with the staff, read the chart, and understand where you are, then you've got to meet with some small set of the staff, together with your patient and family.

STADA: How It Proceeds

Ms Dubler: The reason I don't just meet with the patient and family is that I don't want to set up a dichotomy. I don't want to set up a his/hers, you/them situation. There will be some staff, and the patient and their family.

Then there is an acronym I use: STADA, S-T-A-D-A.

  • S, sit. Now that may sound funny, but most of the staff whom the patient and family have dealt with walk in, stand at the bed, and walk out. You never know when they're leaving. So the first thing I do is have everybody sit.

  • T, tell me about Mama. Usually it's the family, not the patient, who is there. The staff is the expert on medicine, but the family is the expert on Mama. Tell me about Mama. Who is this person? What was she 2 weeks ago, or a month ago, or 6 months ago? Now she's very sick, not communicating, looking awful, but what was she like?

That does two things. Number one, it makes the patient as much as possible part of the discussion. It creates the fiction of presence, even though presence isn't there. They're in the room somehow.

It also empowers the family to talk about the patient. It helps redress the imbalance of power. Sit; tell me about Mama. And the next step is to admire.

  • A, admire. One of the things that mediators do is stroke, make people feel good. Thank you for coming, family. I know it's hard for you to get here. I know you had to take time off from work, but we appreciate it so much because you are the experts on Mama. Here are the experts on medicine.

  • D, discuss what's happening. That's step four. A lot of consultants come in and say to the intern or resident, as they would on any consult, "Please state the case." No, no, no, no, no. That's the fourth step: Let's discuss what's happened.

  • A, ask what should happen. This is the final step. It may not happen at that first meeting, because one of the things that a mediator does—as a bioethics person—is try to be certain that all the options are clear. Here's where the patient is medically. There are many choices for what could happen, and those need to be identified and explained before people can think.

Dr Caplan: Many of our readers are not in a hospital, they're not in nursing home; they may be in a clinic, or even in private practice in a rural area. Would those steps, the STADA steps, be useful in dealing with families anyway?

Ms Dubler: Always. It's so important to understand how scared the patient and family are always. The staff isn't scared. They may be concerned; they may be puzzled. But the family is terrified. Something important is happening, and it may be that it will lead to negative health consequences. Maybe it will lead to death. They're scared, and they need to be stroked, comforted, and empowered.

One of the strands that led me to mediation is the notion that the job of the mediator is to level the playing field—to do away or to limit the disparities of power and knowledge that separate the parties.

In Cases Like Terri Schiavo's?

Dr Caplan: This a rich area that has evolved quite a bit since the early days. I think some of us still have it in our minds that what we're talking about is Terri Schiavo—about families divided about feeding tubes and battles that maybe make it into the local newspaper, or court cases threatened.

What is the range of situations that you deal with? What are the cases that wind up getting mediated? I'm not asking what types are 80% and what types of cases make up 10%—just what is the range?

Ms Dubler: There's an enormous range. Let me give you examples. A 40-year-old woman is dying of AIDS, obtunded on a ventilator. She had been a drug addict for many years of her life and tried to break the habit and couldn't. Her children were raised by her mom. They were very loving and caring of the patient, their mother, and she remained the central figure in everyone's life.

The family wanted to take her home to die. The spokesperson for the family was a daughter, an amazing young woman who had a full-time job and was in college. She couldn't meet with me until seven in the evening. I waited to meet with her, and we talked about what her mom would want. Her mom would want to die at home with the family, and the family all wanted her to do that. The daughter, let's call her Joyce, was the healthcare proxy—the official decider for her mom.

She laid out all of this, and I asked whether she would be the person to decide what should happen. She said "No. My six siblings and my grandma and her husband and my aunt and uncle are all involved. So I think they all have to be involved." The next day, we convened.

Dr Caplan: You convened an orchestra.

Ms Dubler: We convened an orchestra. One of the doctors from the intensive care unit (ICU) was bilingual—Spanish and English—and he translated.

First of all, they didn't understand how sick she really was. We began by sitting down, something like 18 of us in the room next to the ICU. We got them to talk about Mama and what a terrific person she was, and how she struggled against her addiction and how she just couldn't make it. Then the AIDS took over. We talked about that, and we thanked everyone for coming. Then the doctor from the ICU explained how very sick she was.

Dr Caplan: You think at this point they were listening better, or ready to hear it?

Ms Dubler: They had done some grieving. And they were all together hearing the information. They heard finally that she was dying. They had never heard that before as a group, and that was really important. She's not going to make it. She can't hear you anymore, and there's no way we can keep her comfortable at home because she needs too much care.

There was a lot of crying and a lot of hugging, and then the acknowledgement that the family would allocate one person to be with her in the hospital at a time, around the clock, to hold her hand so that she wouldn't be alone. She died, I think, 5 days later.

Dr Caplan: That's a nice illustration of the consult producing a care plan, and family involvement that wouldn't have happened otherwise.

Ms Dubler: I don't think so, because first of all you needed...this was a very close-knit family, and they needed to be together to hear everything in the same way and to ask questions.

Helps Difficult Care Decision

Ms Dubler: Let me give you a contrasting case.

There was a young girl—I think she was 11 at the time—with terrible scoliosis. The scoliosis was impinging on her lungs, making it difficult for her to breathe. The question was whether to do surgery or not.

It was a very difficult surgery, very involved. The surgeon did not know whether the child would survive the surgery, but everyone knew that if they didn't operate, her death would be slow and awful from her compromised pulmonary function.

The team did not want to make that decision on its own. They really felt that the parents had to own the choice. The team was equally divided on whether the surgery should happen.

On the other hand, the more the members of the team talked, the more they came to the decision that the surgery gave the girl a chance for life. Not performing the operation consigned her to a terrible death. They owned that.

They then came to the family and said, "We're not saying it's your choice. We're taking responsibility. We're urging you to let us try the surgery, but we don't know if she'll make it."

What does that illustrate? First of all, there was disagreement among the team. Second of all, when we met and facilitated their discussion, there was a gradual emergence of a solution. They agreed that the risk was worth it, because not to take the risk meant she would have a terrible death.

Dr Caplan: Very good, even though there's a little bioethics heresy in there because you didn't say, "Let's agree to present options to the family and let them make a decision." The team came with a recommendation.

Don't Leave It All Up to the Family

Ms Dubler: I am a big believer that providing options without recommendations dodges the responsibility of the care team. The genius of bioethics consultation is to remove the sense of ultimate responsibility from the family without disempowering the family. That's tough. But to let the parents think that if their daughter died on the table, they caused it, is a dereliction of duty.

Dr Caplan: I stress that point because I think a lot of physicians and nurses believe that the only role they have is to give choices—that they shouldn't make recommendations, say what's best. I agree with you: I find that odd. It's like going to an oil change place and saying, give me my options. The guy's supposed to say, you're due for an oil change; I would change your oil.

It doesn't seem to me ethical or the right use of medical expertise to throw it all back on the parents or on the patient. They want advice. They want to hear what the team thinks or the doctor thinks is the best way to go. They shouldn't automatically believe the physician's or team's recommendation, but they do want to hear it. There's usually a lot of experience behind those judgments.

I find that a very important point: Don't be afraid to give your advice, to make a recommendation. I think that's inconsistent with what we usually think of as the patient being in the position to give informed consent.

Ms Dubler: Aha! I don't talk about informed consent. I talk about advised consent, precisely for that reason. It's not a smorgasbord. You don't say to the family, "Here we are. You can pick up some salami and some cheese and some pickles, and put it on your bread and make your sandwich."

That's a rather punitive notion, the doctor or the team taking the attitude of, okay guys, you want to make the decision? We'll let you—the patient and the family—make it alone. Not fair, not fair, because doctors have experience and expertise. They have a little distance from the issue, too, all of which is crucial.

Do Consults Reduce Legal Suits?

Dr Caplan: Do you think ethics consultation reduces liability, or do you care?

Ms Dubler: Does it reduce liability? I'll answer that obliquely. We know that a relationship between a provider and a patient and family lessens the danger of lawsuit. There are data to show that. But this is not my area of expertise.

The reason for malpractice is malpractice. The second reason for malpractice is that in a society that doesn't support people in their medical emergencies and their exigencies, people would be crazy not to sue. Therefore, we have a system that encourages lawsuits.

On the other hand, the medical sociologists have demonstrated that the stronger the relationship between the doctor and the patient and family, the less likely there is to be a lawsuit. I think a bioethics consultation often helps to strengthen that relationship.

Training for Physicians

Dr Caplan: Last question: Should doctors get training in this? Should they become the bioethics consultants? I know you said there's sometimes a need for some distance, and sometimes you don't want to have everybody in a white coat dealing with it.

Do you see a role for doctors and nurses to take on some of this? Let's say they don't have an ethics consult service and they never will have an ethics consult service?

Ms Dubler: Absolutely; I think doctors, nurses, social workers, and physical therapists are terrific people to be trained in clinical ethics consultation. In fact, as you know, Art, we're working now with NYU to do a continuing medical education (CME) course that would give people the skills of mediation and some understand of bioethics issues so that, in fact, they would come armed with some of these skills.

Dr Caplan: In fairness, there are other CME courses out there, other places to go. Training is available if they want to pursue it.

Ms Dubler: I think they should, especially if a physician is in a rural area or an area without a clinical ethics consultant. I think it's your obligation to understand the basics and have those skills that will help you best to facilitate practice.

Dr Caplan: Thank you, Nancy Dubler. This has been Close-Up With Art Caplan. Please enter your comments below.

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