Give them choice or give them guidance?

Giving patients complete control over their end-of-life care sometimes causes physicians to withhold their own recommendations. A study in the May JAMA Internal Medicine examined how clinicians' approaches to balancing these priorities are shaped by their respective institutions' cultures and policies.

The study's lead author interviewed 58 internal medicine physicians from 4 academic medical centers—3 in the U.S. and 1 in the U.K.—between March 7, 2013, and Jan. 8, 2014. They found 2 of the U.S. institutions ultimately prioritized patient autonomy, whereas 1 U.S. institution in the Pacific Northwest and the U.K. hospital followed best-interest policies.

Trainees at the former pair of hospitals “appeared to have an unreflective deference to autonomy and felt compelled to offer the choice of resuscitation neutrally in all situations regardless of whether they believed resuscitation to be clinically appropriate,” the authors said, while those at the latter hospitals were more likely to recommend against resuscitation when survival was unlikely.

While overseas completing her PhD at the University of Cambridge, lead author Elizabeth Dzeng, MD, MPH, MPhil, MS, spoke with ACP Hospitalist about her findings—and what she believes to be the best approach to counseling patients on end-of-life decisions.

Q: What led you to explore this issue?

A: When I was working as a resident at Columbia [University Medical Center], I felt ethical tensions between respecting patient autonomy and [providing] treatment that may not be in a patient's best interest. Moving from Columbia to [Johns] Hopkins [School of Medicine], I noticed some differences between these two hospitals in how doctors conceptualized autonomy and how they make recommendations to patients.

Q: What are the biggest differences in end-of-life care policies between the U.K. and the U.S.?

A: New York State policy states that even if a physician thinks that a treatment would be futile, they still have to do it if a patient or family wants the patient to be resuscitated. It's a very autonomy-focused policy. In contrast, the U.K.'s General Medical Council policy states that the physician has the ultimate say regarding a decision about a resuscitation order, and that that decision should be based on what is in the patient's best interest. The family should be consulted, and they should be kept in the loop of what's going on, but ultimately it's the doctor's assessment of what's in the patient's best interest.

Q: Does this study or your work in general tell us which value—autonomy, beneficence, or a hybrid—allows hospitalists to provide the best care?

A: I think that the reason why American medicine has focused on autonomy is because there's been this drive toward wanting to empower patients and give them the ability to make a choice. It's part of a larger movement toward consumerization. But if you're being given a choice, but you're not being given the tools to make that choice—for example, you're not being given the guidance, the recommendation—that actually can be as disempowering as not having had the choice at all … so I think that this simplistic focus on autonomy is problematic. I think that a focus on beneficence, best interest … is a better system because it gives doctors the freedom to come to a consensus with the patient.

Q: So best-interest policies don't necessarily sacrifice patient autonomy?

A: Exactly. Sometimes people can confuse beneficence with paternalism. And I think we've gone the right way [in that] we shouldn't be paternalistic, but I think we've swung too far focusing solely on autonomy. Best interest is not about telling the patient what they should do or doing things to patients without their permission—it's about bringing the patient and doctor together into a conversation.

Q: The more experienced physicians you spoke with seemed to take a more balanced approach to the issue, but the trainees seemed to view their hospitals' policies more stringently. How do you think that education regarding these practices could be improved?

A: It seemed as if the more experienced doctors … felt that doing the right thing ethically was very important. They weren't willing to let an unreflective focus on autonomy trump their professional commitment to also act with beneficence. So how can we foster this in trainees? I think medical education should focus more on care rather than merely choice. I also think that there's a huge influence of the hidden curriculum. I think that fostering environments that focus on care, compassion, community, and empathy would be helpful.

Q: Since you have experienced these cultures firsthand, what can physicians in the U.S. and U.K. learn from each other?

A: I think that in the U.S., we've seen a shift in the conversation regarding end-of-life care. Several years ago, Sarah Palin started “death panel” debates, and as a result, the dialogue surrounding death and dying ceased—it became a third rail in politics. But I'm now seeing an encouraging shift in the national conversation toward understanding that Americans aren't dying the way that we want to—we're dying very aggressively in hospitals when people actually want to die at home. I think that increasing palliative care and ethics consultation services in hospitals can help improve end-of-life care and encourages more dialogue on these issues. In the U.K., there is actually a drive from the current standard of best-interest decision making toward autonomy and choice. I think that the U.S. should remain a cautionary tale for the U.K. While patient autonomy is important, we need to foster empowered choice rather than dismiss best-interest decision making.