Understanding the Emotions of Patients Who Refuse Treatment : Oncology Times

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Understanding the Emotions of Patients Who Refuse Treatment

Carlson, Robert H.

doi: 10.1097/01.COT.0000457346.26547.f4
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HOUSTON—It's an ethical dilemma in palliative care when patients refuse a treatment, or similarly, request treatment the physician recommends against, a topic that was discussed here at the Interdisciplinary Conference on Supportive Care, Hospice and Palliative Medicine, sponsored by the University of Texas MD Anderson Cancer Center.

Although refusal is a basic human right, as is asking for treatment the physician may consider futile, physicians can resolve the problem a big percentage of the time, said Eduardo Bruera, MD, Chair and Professor in MD Anderson's Department of Palliative Care and Rehabilitation Medicine. “Patients have to make decisions under extremely difficult circumstances, particularly when they are getting to the level of having a very advanced cancer. The emotional component drives a lot of the decision-making. Cognitive aspects—where my cancer is, what my odds are—are only part of patients' decision-making, so we need to understand their emotions.”

Emotions that drive refusal for treatment may stem from exhaustion, depression, or a desire not to be a burden to loved ones. Or patients might unreasonably request continuing treatment because of a profound fear of death, the pressure of their families, or because they want to be with the family to celebrate some milestone such as a child's graduation from college.

“Always remember, decisions are being made in the context of not feeling well,” he said.

There is an emotional impact on the oncologist and the palliative care team as well, who may feel saddened or angered by the fact that patients are not taking advantage of their recommendations and knowledge.

The first step in resolving the conflict is to clear up misunderstandings: “Find out exactly what the patient wants and figure out why they want this. Do they not really understand what we are offering and what the consequences are of not taking it? What did the last team or doctor say? What is the perspective of the team and the patient and family?”

Second, determine whether the refusal of treatment is coming from a sense of profound depression and exhaustion. In that case, depression management can help, he said.

In addition, consider that the person may be having undiagnosed delirium and is therefore not able to understand and process the information—a situation that Bruera said happens to some 85 percent of people near the end of life.

Finally, what is the family's influence? Is the family influencing the patient toward or against treatment? “If we cover those four angles, we cover 95 percent of the reasons there is disagreement,” Bruera said.

Decision making does not follow specific pathways or clinical guidelines, he continued. “Clinical care guidelines are useless in situations that call for personalized care. What we are managing is the person, and there are a lot of factors involved with the decision that have nothing to do with the disease or the stage. What's important for the oncologist to understand is that decision-making is always personal, and we don't understand all the personal aspects that impact that.”

Time-Limited Trials

Bruera said time-limited trials are a very important tool: “The doctor can say ‘Okay, Mr. Smith let's do this, or not do this, for a couple of days and see if it works. Then we can revisit it in two days or three days and see how it is doing.”

EDUARDO BRUERA, MD. EDUARDO BRUERA, MD: “Skilled practitioners get better results at resolving these dilemmas in a shorter amount of time.”

Remember that situations change over time, he said, citing an Australian study that showed that only 31 percent of patients wanted the same management plan after the situation changed. With the passage of time, something refused before might now be acceptable.

And what does the family have to say in all this? Bruera said he would like to see the family involved 100 percent of the time. A conference with all family members present can reveal who is the driver of the request/refusal, and why.

Futility for Whom?

The efficacy of a situation as shown in clinical trials is irrelevant in these situations, Bruera said. What is relevant to the patient is effectiveness—how does that intervention work in the real world.

It's also true that a request can be ethically denied—the physician cannot be forced to do anything that he or she considers harmful to the patient.

Avoid the “f word”—futility—with patient and family, he said. “A futile request that is not harmful should rarely be denied in palliative care. The emphasis must be on well-being—never on futility.

Ask: “Futility for whom—from the perspective of the insurer, the doctor, the drug company paying for the trial, the hospital, society, or the patient?”

Making decisions at a stage of life most of us will be in one day is always going to be multidimensional, Bruera summed up. “We can help resolve a lot of issues, but there will always be suffering and distress.”

He concluded, though, with an optimistic note: “Skilled practitioners get better results at resolving these dilemmas in a shorter time.”

© 2014 by Lippincott Williams & Wilkins, Inc.
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