When refusal of care endangers patient safety

'No' may just be start of conversation

An elderly or frail — yet competent — patient refuses treatment and insists on returning home, where he or she lives alone or with an equally elderly or frail relative. This common conflict between respect for a patient's wishes and the physician's concern for the patient's well-being and protection doesn't need to be the end of the discussion.

"The important thing is not to see the patient's refusal [of care] as the end of the game," says Joseph A. Carrese, MD, MPH, of the Phoebe R. Berman Bioethics Institute at Johns Hopkins Bayview Medical Center in Baltimore. "Rather, see it as a starting point, where you can step back and explore what the disconnect is all about."

Navigating ethical issues that arise over refusal of care includes, among other things, avoiding the mindset that the patient's wishes are "bad" or "wrong."

"It is a temptation [to view such decisions as wrong], because doctors spend time thinking about a course of action, whether it's diagnostic or treatment, and when they arrive at what they think is the best course of action and it's met with resistance, that can be frustrating," Carrese says.

Urged by codes of professionalism and the Hippocratic Oath, physicians are required both to render medical care and proceed cautiously for the good of their patients. It can be argued that by refusing care, patients effectively deny their doctors the ability to fulfill those requirements; on the other hand, if a doctor forces treatment on patients against their wishes, patient autonomy is overruled.

Acknowledging a competent patient's autonomy requires that health care providers let them make their own choices, and to approach those decisions with respect — even when sick patients refuse needed tests and treatment, or demand to leave the hospital when their medical providers advise against it.

Explore possibilities with care

When a patient refuses care, Carrese suggests, the physician should view that as a starting point to explore the reasons behind that decision, while continuing to acknowledge the patient's right to decide.

"Perhaps it's something as simple as a miscommunication" that leads to the patient's refusal of care, he explains. "Does the patient really understand what the risks are, and what the benefits are of doing what the doctor recommends?

"Sometimes it can be as simple as that, and maybe no one's taken the time to explore that possibility [with the patient]."

Eliciting answers about why the patient feels the way he or she does — rather than focusing on convincing the patient that the physician is right — can at least lead to a better understanding of the patient's motives and mindset.

"You can ask, 'Why are you not going along with this?' or, 'Have you had a prior experience that didn't go well?'" Carrese says. He further suggests asking, "Has a neighbor given you advice or told you something that concerns you?" or, "Do you have cultural or religious concerns?"

In "Refusal of care: Patients' well-being and physicians' ethical obligations," (JAMA 2006; 296:691-695), Carrese writes of an ill, elderly woman who upon discharge from Johns Hopkins was unable to care for herself and lacked the financial and social resources to be at home safely. Nonetheless, she adamantly refused to enter a nursing facility, posing an ethical challenge for her medical providers.

"It seemed in that case that one possible factor was an experience this woman had had while visiting nursing homes earlier in her life, where she formed a strong opinion about nursing homes, that they were a bad place to be," he says.

An ethics consultation team at Johns Hopkins, after reviewing the medical team's concern [that the patient would be at risk if she went home alone] and the patient's ultimate desire (to go home and stay home), arrived at a way of presenting the evidence to the patient in a way that appealed to her long-term goal. Her doctors explained that her care was not complete, and that 30 days in a skilled nursing facility would strengthen her to a point that, they hoped, she would be able to return home and stay there, with the assistance of home health care nurses, and to the satisfaction of the patient and medical team, she agreed.

Carrese says an experience like the one described in the JAMA paper can have a lasting effect on physician-patient interactions.

"Once you've [explored with a patient his or her refusal of care], it can help you recalibrate what you need to be doing as a physician," he explains. "In terms of interacting, maybe you're not saying the right things, or not saying them clearly enough. You learn to persuade without coercing."

Talking with friends, family, and other members of the patient's circle of support can shed light on the patient's motivations; clergy may be able to communicate with patients about perceived religious reasons for refusing care.

"A patient might be refusing care because they feel it violates a particular religious edict," Carrese says. "They might be right, but they might be wrong, so clarifying that with a spiritual leader or clergy member might help make that clear to the patient."

Assuming that the patient has the capacity to make his or her own health care and treatment decisions, there may come a point at which the physician has done what he or she is able to do to reconcile what is medically recommended with what the patient wants, and the patient steadfastly refuses treatment.

"Then you have to sort of go along with that," Carrese says. "That is a good point to consider other resources like an ethics consultation. Bring in a third party — a psychiatrist, or ethics consult team — and get their take on it."

Even if the intervention by a third party doesn't change anything, "I feel that I can live with a decision better if another party has intervened," he adds.

Carrese says while physicians are not obligated to violate their own standards or values in order to uphold a patient's right to refuse care, physicians who feel they have no choice other than to transfer care of the patient to another doctor should carefully examine whether upholding the patient's wishes is truly an untenable option.

"Think as hard as you can, weigh all the considerations, weigh as best you can all the pros and cons, and consider that it's entirely possible that someone else looking at the situation would reach a different conclusion," Carrese says. "If you can demonstrate that you thought long and hard and carefully, I think it's easier to defend and justify what you decide."