When physicians and patients disagree

Preserve patient autonomy in difficult situations, including requests for futile care and AMA discharges.


No physician enjoys disagreements over patient preferences, said Carrie Herzke, MD, MBA, FACP. “You get your patient list and you're like, ‘Yes! This patient's threatening to leave AMA [against medical advice], and this family is demanding chemotherapy even though they're on life support. This is going to be a great day!’” she joked.

But there are ways to handle these conflicts more smoothly, Dr. Herzke and other experts told attendees at Hospital Medicine 2019 sessions on patient autonomy and requests for medically inappropriate care or refusals of care.

“We can think about some strategies so that you're not feeling, for lack of a better word, bullied by families to do things that we don't feel are medically appropriate and we don't feel like we're coming up to a family saying no to things, but we're really reaching a point of shared decision making,” said Nicole Adler, MD, FACP. “We can come to, if not a middle ground, at least a place of understanding.”

Requests for care

Photo courtesy of Dr Adler
Photo courtesy of Dr. Adler

The process of resolving a patient's or family's request for inappropriate care starts with understanding their goals, said Dr. Adler, who is a clinical lead for value-based management at NYU Langone Health and an assistant professor of medicine at New York University in New York City.

“Oftentimes when we talk about goals of care, we're thinking about code status or advance directives,” she said. However, when there's a disagreement, the focus should be broader, encompassing patients' values and needs, she added.

“One of my favorite questions [about values] is, ‘What is a good day for you?’ Trying to really to understand what is an acceptable outcome for the patient will really help go a long way,” said Dr. Adler. She also recommended inquiring about a list of values, asking how important it is to patients to be able to live alone, to feed themselves, or to be able to get out of bed, for example.

Moving on to needs, a physician can ask what can be done to provide more good days for the patient. “It helps you understand what is really vital for the patient,” she said. The elaboration of goals and needs might also reveal that a patient has unrealistic expectations of treatment.

For example, it may turn out that a hospitalized patient with end-stage cancer has been requesting additional chemotherapy because her goal is to attend a wedding in six months. “That helps us pare our recommendations based on goals and realistic expectations,” Dr. Adler said. The physician will have to explain that even more chemo won't make that goal achievable.

Ethan Cumbler, MD, FACP, offered another example of how unrealistic expectations can lead to inappropriate requests for care, during his debate on patient autonomy with Melissa Mattison, MD, FACP.

They discussed a hypothetical hospitalized patient with dementia and chronic kidney disease. “The daughter says, ‘I think my mom would want you to try to bring her back, but she wouldn't want to be on life support,’” said Dr. Cumbler, professor and associate chief of hospital medicine at the University of Colorado in Aurora. “So you end up with a code preference that sounds like this: Yes to CPR, yes to code drugs, yes to defibrillation, no to intubation.”

Such a “partial code” status is inappropriate and impossible to follow, said Dr. Cumbler, who compared television portrayals of successful resuscitations to real research showing that 69% of patients with chronic kidney disease required intubation after a code.

On the other hand, “Honoring our patient's wishes is important to what we do every single day, and a partial code status request could conceivably be appropriate,” countered Dr. Mattison, who is an associate professor of medicine at Harvard Medical School and chief of hospital medicine at Massachusetts General Hospital in Boston. She gave the example of a patient who might want artificial pressor support to get over an infection, but not to be resuscitated.

Although they took different sides on the question of whether partial codes are ever acceptable, the experts agreed about the causes of them. “Partial resuscitation requests are a byproduct of poor patient, or their surrogate decision-maker, understanding of what is being proposed,” said Dr. Mattison.

They also concurred on the optimal resolution of such requests. “Understand what the patient's wishes are and describe a realistic scenario of what could be afforded to the patient in keeping with her wishes,” Dr. Mattison recommended. “It's a good time to remind ourselves that true shared decision making requires the recognition of both the patient as an expert in what they want . . . and the doctor as an expert in how medical science can help them achieve that vision.”

“That is your chance to explain why it's not a viable option and then to re-explore ‘the why’ that caused them to make that request in the first place, so you as a professional can make a decision about the best treatment plan to get to that goal,” added Dr. Cumbler.

Specialist involvement

What can either facilitate or complicate the process of getting to a mutually agreeable treatment plan? Subspecialists.

Drs. Cumbler and Mattison also discussed the example of an end-stage cancer patient requesting additional chemo, although in their case the patient's oncologist also wanted to pursue chemotherapy that seemed futile to the treating hospitalist.

“You are concerned that the oncology team is misleading the patient and his wife,” described Dr. Mattison.

Once again, the optimal solution is more communication, advised Dr. Cumbler. “When there's conflict between the hospitalist and the consulting team, the next step is to sit down and really try to work through understanding what each person's perspective is, and certainly avoiding a chart war,” he said.

If all parties can't come to agreement, at least the patient and one physician must. “You have to be brave to ignore a consultant's recommendation. You have to be sure it's what the patient wants, and that the patient has made the decision to forgo the recommended treatment or therapy in an informed way,” said Dr. Mattison.

Other times, subspecialists can help to bring patient and hospitalist into accord. Dr. Adler offered tips for requesting what she calls an “alliance consultation” in response to a patient's request for inappropriate treatment.

“This is calling in a consultant and saying, ‘Here is the complex situation before me. My opinion is that this patient would not benefit from chemotherapy. I'd like you to come in and see this patient with all the information that is in front of us all already,’” Dr. Adler said.

To help hospitalists get their desired results from such consults, she recommended initiating them yourself by calling the subspecialist attending, being clear about what you have recommended to the patient, and asking the consultant to talk to you before offering recommendations to the family. And then make sure the other doctor gets the concept.

“Given the nuances of this,. . . I would just have them check back with you to ensure they understand what you're asking of them,” said Dr. Adler.

Refusing treatment

A patient trying to leave the hospital might seem like the polar opposite of one wanting futile chemo, but there are “similarities and overlap between managing those seemingly disparate problems,” said David Alfandre, MD, an associate professor of medicine and population health at NYU and a health care ethicist with the Veterans Affairs' National Center for Ethics in Health Care in Washington, D.C.

Patients have the right to leave AMA, of course, but there's still a lot hospitalists can do about such a desire. “The worst possible interpretation is to wash our hands of it and say, ‘Patients can do whatever they want,’” Dr. Alfandre said. “Part of our ethical obligation is helping patients, vulnerable patients, when they're making challenging decisions like this, to help promote their best interest.”

To do so, the hospitalist should first acknowledge the patient's autonomy. “Do whatever you can in your care to provide control to the patient,” he said. “Remind them that they get to make that ultimate decision at the end.”

Photo courtesy of Dr Herzke
Photo courtesy of Dr. Herzke

Then, try to find out what motivated this desire, recommended Dr. Herzke, who is an assistant professor of medicine at Johns Hopkins Medicine in Baltimore. “What is the issue? Is that he wants to go smoke and you said no, but the guy last night let him go smoke?”

It might be possible to come to a mutually acceptable agreement on such issues, for example, allowing a patient 10 minutes off the floor twice a day, not checking vitals during the night, or loosening restrictions on fluid or carbohydrate consumption. “Let's think about what can we do to get you where I think you need to be,” said Dr. Herzke. “This does not mean sell your soul . . . . Think about things that you think are medically appropriate.”

Such agreements should then be documented, because inconsistency among clinicians can be a source of patient frustration, she noted.

An apology can also improve the patient's outlook. “The blameless apology can get you far. There's always something you can apologize for and it never means that it's your fault,” said Dr. Herzke, offering examples. “‘I'm really sorry that you're in the hospital. I know it's miserable and the food is terrible and they checked your vitals every four hours last night and you got no sleep.’”

Dr. Alfandre agreed. “Arguing rarely works in these situations,” he said. “Empathy has a much more significant role in helping patients remain hospitalized.”

He also recommended involving the patient's family, friends, or primary physician, and addiction care, if any of these seem likely to help. “Many of these patients have substance use disorders, so use the input of your addiction specialist colleagues in the hospital. They can really help reduce the rate of AMA discharges,” he said.

And if the patient leaves despite these efforts, consider whether you have to say “AMA.” “There's emerging literature to suggest that the designation of a discharge as AMA is low-value care. There's really no identified benefit to the designation, and we know that it may harm patients by stigmatizing them or reducing their access to care,” said Dr. Alfandre. “Within the system where I practice, there's no legal requirement to make a discharge AMA. What's required is that we have an informed consent discussion with the patient, and we document it in the record.”

Finally, whether the problem of the day is a patient requesting inappropriate treatment or demanding to leave the hospital, remember to handle your own emotions, Dr. Herzke advised.

“To be good doctors and providers, we have to have feelings, but we want to think about those feelings honestly before we enter the room. If you don't manage that, it's hard to not bring those feelings into the patient's room,” she said.

After a stressful visit, go decompress, Dr. Herzke recommended. “When I go in a patient's room and we have a difficult encounter, I often, when I walk out, spend like 10 minutes, with a nurse usually, and say, ‘Oh, that was really difficult,’” she said. “Notice I haven't said anything like, ‘That guy was really a jerk.’ You can say, ‘Oh, that was difficult,’ and it's not disrespecting the family or the patient.”