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Beyond Advance Directives: James A. Tulsky, MD, discusses moving beyond advance directives when communicating with patients at the end of life.
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Beyond Advance Directives: James A. Tulsky, MD, discusses moving beyond advance directives when communicating with patients at the end of life.
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Segment:0 .
>> I'm Joan Stephenson, editor of JAMA's Medical News and Perspective Section. Today I have the pleasure of speaking with Dr. James Tulsky about "Beyond Advance Directives, Importance of Communication Skills for Care at the End of Life." Dr. Tulsky, why don't you introduce yourself to our listeners. >> Certainly. I'm James Tulsky, and I am Professor of Medicine and Nursing, as well as Director of the Center for Palliative Care at Duke University. >> Dr. Tulsky, what are written advance directives, and why are these documents so important?
>> Advance directives are documents that allow a patient to say in advance, to write down in advance, what kind of treatments they might want in the event that they're no longer able to make decisions for themselves. And the written form usually includes two documents, one is a living will, and the other is a healthcare power of attorney, which allows the person to name a surrogate, or healthcare proxy. And these documents are important because many times patients may find themselves in a situation in which they cannot express their wishes.
Others would not know them, or there may be conflict around what kinds of wishes they would want. And this allows individuals to make sure that they get the treatment that they desire. >> When should advance directives be created? And also when are advance directive documents needed? >> I think that anyone can consider creating an advance directive. Many people frequently do it at the time that they do a property will. And it's just a good opportunity for people to sit down and think about the kinds of values they have and the kinds of goals they might have were they to become very sick.
But the truth is that that's hard for a lot of people to do. And so certainly anyone who has a serious illness, anyone who has a chronic disease of any sort, at that point in time it's usually very useful to sit down and think about communicating one's wishes, not only in writing, but also having that conversation with loved ones and with one's physician. These documents are particularly needed when there are situations where someone anticipates disagreement within their family or when one anticipates there might be disagreement or conflict between one's family, or one's own belief in providers, for example, if one holds somewhat unique religious beliefs about care.
And finally, I would encourage people who are part of non-traditional families, whether someone is a friend but very close and a decision maker for someone, or for example, same sex partners, where those relationships may not be recognized in some situations, it's very important for people like that to complete an advance directive. >> Dr. Tulsky, how can clinicians establish trust with patients and families? >> This is probably the most important thing we do as healthcare providers, to be honest.
Gaining and engendering trust in our patients, because without that trust, we really can't do the sorts of things we want to do in their interest. Several things help with this. First, encouraging patients and families to talk about their concerns and about their illness. And when I first see someone, I generally say, "tell me what you understand about your illness," and I ask them what's most important. It's also very important to be humble and to recognize when we don't know everything.
The patient may have a concern that we might downplay from a scientific point of view, but that we need to recognize that it's something important to that individual, and we need to listen very carefully in giving them their care. Other things that can help with engendering trust are demonstrating respect to patients. I think that, particularly for caregivers, they work very, very hard caring for their loved ones, and often don't feel good about themselves, and when we can praise them and show respect for the work they're doing and telling them, for example, how impressed I've been with the care you've given your father, people then see that you see how much they're putting into this, and they will be more likely to trust you.
And finally, I would recommend that, particularly around the issue of decision making, that we not try to force an agenda, that we listen very carefully to patients and families, try to elicit their values, try to outline their goals of care, and then do our best to match treatments to those goals of care and to give them time to make those decisions. >> It's often the case that multiple clinicians are caring for a patient at the end of life. What challenges to communication about end of life issues arise because of the situation?
>> This is one of the most difficult things that we encounter, and particularly in busy hospital settings with lots of consultations. The problems are, first, that patients and families may hear different messages from different clinicians. And they don't know which are exactly correct. Sometimes these messages may even be contradictory. For example, one physician may give a prognostic estimate that looks more optimistic or more pessimistic than another, and the family isn't sure which is really correct.
In addition, different clinicians may actually have different goals. They may believe that a treatment has a better or worse possible effect, and therefore make different kinds of recommendations. And families have a very hard time sorting through these different recommendations from different physicians. >> What can clinicians say to patients to help them make decisions while maintaining a hopeful outlook? >> I think there are several different techniques that people can use.
The one I often use is to encourage patients to hope for the best while preparing for the worst. That, in other words, as a friend of mine once said, you can pack for two different trips at the same time. That we could be very hopeful with patients and say that we're really hoping that the outcome that they want most will happen, and we're going to do everything to make that happen. At the same time, ask them, can you imagine what would happen if this didn't work out the way we're hoping for, and get them to think a little bit about it, get them to prepare.
Some of that preparation is emotional or mental. Some of that preparation may be practical, in terms of making certain kinds of arrangements for their family or so forth. I think we can also try to help people reframe hope and to think about hope not just in terms of curing a disease but also in terms of other outcomes that can happen, in terms of family relationships, in terms of things that they can complete in their last days, weeks, or months of life.
And then, finally, we have a tendency, particularly at the time that we're pulling back on certain kinds of treatments, particularly treatments oriented toward cure, to talk about the things that we won't be doing. I find it much more useful with patients to talk about what I will be doing. These are all the things that we will be doing for you to help you achieve your goals. And I think when we do that we can help people be hopeful. >> Is there anything else you would like to tell our listeners about communicating effectively with patients at the end of life?
>> I think the most key piece of communicating, not just at the end of life, but at all times, is empathy. And I believe that most physicians are extremely empathic toward their patients, and they really do have a sense of what they're going through and they care. The problem is we don't always demonstrate that, and patients don't always know that we feel it. And to do so requires real direct verbal expressions of empathy, saying things like I know this must be really hard, I can't imagine what you're going through right now, I'm going to be there with you, I'm so impressed with how you're dealing with this disease.
All of these things help and are, in fact, much more helpful than what we tend to do as physicians, which is to give a lot of information. In the setting of end of life, more information is not usually what patients and families need, more caring and more presence is. >> Thank you, Dr. Tulsky, for your insights into advance directives and the importance of good communication skills for care at the end of life. Additional information about this topic is available in the JAMAevidence publication, "Care at the Close of Life." This has been Joan Stephenson of JAMA, talking with Dr. James Tulsky about the importance of communication skills for engaging with patients at the end of life for JAMAevidence.
