When Can Doctors Say 'No'? Patient Autonomy and Futile Care

Alok S. Patel, MD; Melissa L. Mattison, MD; Ethan Cumbler, MD


May 01, 2019

This transcript has been edited for clarity.

Alok S. Patel, MD: Hi. This is Dr Alok Patel. I recently attended the Society of Hospital Medicine Conference 2019 and had the opportunity to speak with Drs Melissa Mattison and Ethan Cumbler about patient autonomy versus futile care. Check it out.

Going Beyond What the Guidelines Recommend

Patel: Dr Cumbler, thank you for chatting with us.

Tell me something: At most of the talks that I go to at the Society of Hospital Medicine Conference, I am seeing guidelines, protocols, and a stepwise way to manage problems. Does that apply to patient autonomy and futile care? Or is there more to it?

Ethan Cumbler, MD: I think that this talk that Dr Mattison and I are doing illustrates some of the full range of what the Society of Hospital Medicine brings to its conference. Part of it is about asking, how do we standardize? How do we add value? How do we reduce harm?

Another part is the art of medicine. When I think about how frontline clinicians find balance between ethical principles, that's all about the art. There is not—and will never be—a guideline that answers how to handle challenging cases, such as the balance between futile care and a patient or family who might want that care to continue.

Patel: Which makes total sense to me because you cannot standardize guidelines when you are dealing with different people and their cultural and spiritual beliefs.

In your personal experience, do you find that you have to approach every one of these tough situations as a new situation? Or can you apply previous protocols to each one?

Cumbler: That is a good question. For me, there are underlying principles, which are the guidelines that we follow. How do they play out in an individual scenario? Each patient is unique and each scenario is different. Using a standard approach helps guide me through the uniqueness and diversity that we find in the real world.

What Is 'Futile' and What Isn't?

Patel: Dr Mattison, how are you and Dr Cumbler defining futile care? For me, personally, I think about when my clinical judgement goes against what a patient or family wants. Is that where we are going with futile care?

Melissa L. Mattison, MD: That is precisely it. Sometimes there are disagreements within the clinical team about what is futile and what isn't. You can imagine that an oncologist may think that a patient should receive another round of chemotherapy, whereas the internal medicine attending says, "This is it. Why are we doing yet another round of treatment?"

Patel: On a day-to-day basis, when you bring this topic up in the hospital—which obviously happens all the time—are you finding that this kind of debate or conversation occurs between specialists, between yourself and the patient or the family, or all of the above?

Mattison: I think it is all of the above. It depends on the scenario. We are presenting two cases tomorrow, and one of the cases involved nursing, patient, family, and the clinical team—the whole squad of people who were there to support the patient during their acute illness.

Patel: I think one topic that comes up a lot in the media that the public knows about is when there is a conflict between what family members or a spouse wants. One member says, "Do not intubate. Do not resuscitate." And somebody else wants to constantly continue. Do you find that scenario happens often, as well?

Mattison: I think that, at the end of the day, clinicians always do their best and what is right by the patient. It is not always black and white. Sometimes it can be a bit more of a gray area, and that can be hard to navigate.

Having Difficult Conversations With Patients

Patel: This is not an easy topic. Our viewers have all read the news, and we are scared of the stories we hear when we're in medical school. A patient has a wish about they want, but they may not have the agency or the liberty to do that.

You have a family member who tries to coerce them and says, "No, this is what we want." Then, you have a physician in some specialties who wants something else. It's a tough scenario.

Do you feel like young providers are given the training to dive into this? Or is this something that you just have to learn on the job?

Cumbler: I think we're doing a better job than we used to in teaching people how to approach these complex and difficult conversations, but I think that some of this comes with experience.

Patel: Do you feel like we need more palliative care or more ethics departments to help mitigate this when you have a smaller hospital, a community hospital, or a place where people do not have your level of experience? Are we doing enough with the support?

Cumbler: We have come so far! If you look back 50 years ago at the paternalistic approach to medicine, we have come miles from where we started. At the same time, I see huge value in palliative care consultation teams, and in having colleagues who you can bounce some of these tough cases off of and hear how they would approach it.

Key Takeaways on Patient Autonomy

Patel: What is one message about patient autonomy and where we fit in that everyone should know?

Cumbler: For me, it comes back to the patient. When you run into conflict between ethical principles, just like when you have a difficult conundrum, you're trying to make a difficult diagnosis, and you're stumped, you go back to the bedside, redo the physical exam, and redo the history. The same thing is true in conflict. When you are stumped, come back to the bedside and re-engage in the conversation.

Patel: Can you give me one take-home message about patient autonomy and what clinicians really need to start doing in 2019?

Mattison: In 2019, with patient autonomy, we have to allow patients to partner with us as we navigate a very complicated world of what medical science can deliver. We need to look to them as experts in what they want and what care aligns with their wishes. We need to be the experts in the clinical space, navigating the waters for the patient, and telling them what medical science can do for them in keeping with their wishes.

Patel: It is all about harmony. Dr Mattison, thank you so much for talking to us.


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