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Initiating End-of-Life Discussions: Timothy E. Quill, MD, discusses initiating end-of-life discussions with seriously ill patients.
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Initiating End-of-Life Discussions: Timothy E. Quill, MD, discusses initiating end-of-life discussions with seriously ill patients.
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Segment:0 .
>> I'm Joan Stephenson, Editor of JAMA's Medical News & Perspectives Section. Today I have the pleasure of speaking with Dr. Timothy Quill about initiating end-of-life discussions with seriously ill patients. Dr. Quill, why don't you introduce yourself to our listeners? >> Okay, my name's Tim Quill, and I'm a Professor of Medicine, Psychiatry, and Medical Humanities at the University of Rochester, where I run a large palliative care program. >> Dr. Quill, when should end-of-life discussions be initiated?
>> End-of-life discussions should probably be initiated when you're taking care of somebody that you would not be surprised if they died in the next 6 to 12 months. It's different than the usual question we ask, when we're sure somebody's going to be dying in the near future. So when we discuss their hopes and fears, what they're most worried about, perhaps then we discuss prognosis. If we could normalize the discussion in those circumstances, that would be good. Usually we wait till the last minute to have these discussions, so we have them when people are imminently dying, or perhaps when there's severe suffering and a poor prognosis.
That's a good one to make yourself walk back into that room and have a discussion about prognosis and end of life. Occasionally we'll have it when somebody starts talking about wanting to die and being ready to die, asks questions about hospice. Again, those are late times to have the discussion. So the idea would be to have it, I think, earlier when we're starting to think the prognosis is not looking too good. >> Who should be responsible for starting such discussions? >> Well, these discussions really need to come from clinicians, primarily physicians.
Sometimes it may be the subspecialist, the main treating subspecialist if they're the main treating physician. It might be the primary care physician who has a close relationship with the patient. Sometimes it's left to the palliative care consultant if everybody else has not had that discussion. So ideally, if there are lots of physicians involved in a more complicated case, they get together, decide who's the best person to have that discussion, and then that person sits down with a patient and family and goes over what's really happening.
>> What elements should typically be included in end-of-life discussions? >> Well, there's a sequence that generally one goes through or thinks through of making sure that the -- first, that the patient and family understand the clinical situation and prognosis. So are they aware of how sick the patient is? And then you're trying to get a sense of in light of their sickness, what are their goals? How much do they want an emphasis on life prolongation at all costs? How much do they want an emphasis on quality of life at all costs?
Or do they want some kind of a balance? And then you may get down, after you've had those overarching conversations about specific treatments, CPR, intubation, perhaps advanced care planning. So things like a do not resuscitate discussion don't really make much sense unless you -- the patient and family really understand their clinical situation and we understand their goals in light of that. >> What kind of questions should physicians ask patients when discussing various end-of-life issues?
>> Well, there's questions about advanced care planning, for example, which is a imagining into the future that you know your situation now, if you got so sick that you couldn't speak for yourself, what kinds of treatment would you want? And then who should make decisions on your behalf if you can't make them for yourself? And just naming a person is insufficient. They clearly need to have a conversation with that person so that that person understands their views and values. And their views and values may change. Many people want very aggressive treatment when they can speak for themselves, but wouldn't want such treatment if they couldn't speak for themselves any longer.
Similarly, the conversation about CPR is really a very invasive procedure that is not very successful when a patient has got multiple chronic diseases. So again, we may ask questions like "We want to do everything we can to help you, but we wouldn't want to do treatments that would only hurt you. And CPR, in my opinion, would really only hurt you in this point. It wouldn't help." So we really try to guide people through these discussions in light of our medical knowledge and in light of our knowledge about what these procedures can and can't do.
>> What are some of the barriers to end-of-life discussions on both the part of the physician and the part of the patient and/or family? And how can these barriers be overcome? >> Well, the barriers that we have as physicians are not dissimilar to the barriers that patients and families have, in the sense that they don't like, and we don't particularly like discussing end-of-life issues. You know, we need to always have hope, and we have this -- a tremendous desire to preserve hope, as if discussing what's really happening would undermine hope.
In fact, the evidence that that really happens is non-existent. So I think hope, it takes on a new light once one knows one is really sick, and we have to really learn how to think through that and overcome that. There are some cultures where discussing end of life is just not something that's done. And I think if we care for such a patient relatively rare that this occurs, but if we care for such a patient, then we have to figure out, how do we communicate perhaps with the family? I think we're trying to bring these conversations up earlier so that they're just part of the normal discussion process.
If we wait till people are imminently dying, they're clearly so much more poignant and challenging, particularly if they've been avoided throughout a long illness. So this whole high suffering, poor prognosis, as people start to suffer more as their prognosis goes down, we simply have to figure out how to have the discussion. >> And what problems could arise if physicians avoid having these end-of-life discussions with their patients? >> Well, I think the problems are very evident in our current healthcare system that we have tremendous amount of over-treatment of people who are really sick.
They are being offered and provided treatments that really are of marginal benefit and are very invasive. There's over-utilization of aggressive treatment when it really is not going to benefit a patient. And ultimately, if we really -- it's okay to do these things if patients and families are going into it with their eyes open. We haven't decided as a society we're not going to offer such treatments in these circumstances. But if they're going into it without having been told what's really going on, then they are really unprepared for what's most likely to occur.
And that leads to a lack of trust and a lack of confidence that the medical system's going to really look out for their own interests. >> Is there anything else you would like to tell our listeners about end-of-life discussions? >> A couple of quick tips. I use a lot of wish statements when things aren't looking good "I wish medicine was more powerful than it is." "I wish we had better treatments for your disease." Which really allies with their wishes, but also says that, you know, we really don't have such options.
So I think that puts us on the same side of the table. And also that ultimately, patients and families are really grateful if we will talk with them with both honesty and compassion. That's the challenge, to be clear with them about what's really going on, but to do so with caring and compassion. >> Thank you, Dr. Quill, for your insights into initiating end-of-life discussions with seriously ill patients. And additional information about this topic is available in the first chapter of the JAMAevidence publication "Care at the Close of Life." This has been Joan Stephenson of JAMA talking with Dr. Timothy Quill about initiating end-of-life discussions with seriously ill patients for JAMAevidence.
