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End of Life Care in the ICU (Encore)
12 Plays3 years ago
This is an encore for a previous episode of Critical Matters. One in five US residents receives ICU care at the end of life. In this episode, we discuss different aspects of end of life care in the ICU. Our guest is Dr. BJ Miller, a physician, author, and speaker. He is a practicing hospice and palliative medicine physician and is best known for his 2015 TED Talk, "What Really Matters at the End of Life." BJ has been on the teaching faculty at UCSF School of Medicine since 2007. He is a powerful advocate for the role of our senses, community, and presence in delivering palliative care and for ushering in a new perspective on living with death.
Additional Resources:
What really matters at the end of life, BJ Miller presented at TED 2015: https://bit.ly/3EcOslB
Clinician-Family Communication About Patients' Values and Preferences in Intensive Care Units.
Scheunemann LP et al, JAMA Internal Medicine, 2019: https://bit.ly/3jzNqqD
A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death. BJ Miller and Shoshana Berger: https://amzn.to/3rpl6LM
Vital Talk courses, a set of online and in person courses designed to equip clinicians with the tools to have difficult conversations with patients and families: https://www.vitaltalk.org/courses/
Books Mentioned in this Episode:
Man’s Search for Meaning. Viktor Frankl: https://amzn.to/37l3Mk9
Mortally Wounded: Stories of Soul Pain, Death and Healing. Michael Kearney: https://amzn.to/3xsyAKI
Bering Mortal: Medicine and What Matters in the End. Atul Gawande: https://amzn.to/3Jz3OlG
The Denial of Death. Ernest Becker: https://amzn.to/3vfQ22e
Recommended
Transcript
Introduction to 'Critical Matters'
00:00:06
Speaker
Welcome to Critical Matters, a sound podcast covering a broad range of topics related to the practice of intensive care medicine.
00:00:14
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Sound provides comprehensive critical care programs to hospitals across the country.
00:00:19
Speaker
To learn more about our programs and career opportunities, visit www.soundphysicians.com.
00:00:26
Speaker
And now your host, Dr. Sergio Zanotti.
Statistics on ICU and End-of-Life Care
00:00:33
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One in five U.S. residents receive ICU care at the end of life.
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More than a quarter of Medicare dollars are spent on patients during the last year of life.
00:00:41
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These staggering statistics illustrate that death in the ICU is common.
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Unfortunately, the available literature seems to indicate that we are doing a poor job and there is ample opportunity to provide our patients and families significantly more humane care at the end of their lives.
00:00:56
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In other words, provide our patients a good death.
00:00:59
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In today's episode of Critical Matters, we will discuss end-of-life of care in the ICU.
Dr. B.J. Miller on End-of-Life Care Discussions
00:01:04
Speaker
We are extremely honored and lucky to have Dr. B.J.
00:01:07
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Miller as our guest.
00:01:09
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Dr. Miller is a palliative care physician at the University of California, San Francisco, and a former executive director of Senn Hospice Project.
00:01:17
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He is a powerful advocate for the role of our senses, community, and presence in delivering palliative care.
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He's also a true champion in promoting a new perspective on living with death.
00:01:27
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His TED Talk, What Really Matters at the End of Life, has generated over 9 million views.
00:01:34
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BJ, welcome to Critical Matters.
00:01:37
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Thank you, Sergio.
00:01:38
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Nice to be here.
00:01:40
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So I think we can start with the big question, which really applies not only to physicians, but I'll ask it from the intensivist perspective.
00:01:48
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But why is it so hard for physicians and intensivists to talk about death?
00:01:54
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Well, you know, that's a, you're right, that's a big question.
00:01:57
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And I think there are a number of reasons.
00:01:59
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I mean, we can start with the conventional answers, which is really of any stripe, but particularly interventionalists and intensivists and those doing sort of procedures and those who are geared towards sort of fixing a problem.
00:02:17
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But no matter, even if you're going into geriatrics, I think the bottom line is that medical education is
00:02:22
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uh the traditions of medical education since the you know flexner report in the early 20th century we've you know medical education has not changed much and uh so the bottom line there is we just don't get trained we don't get trained very well in how to communicate heart issues we don't get trained really at all in terms of how to sit with suffering that we can't fix
00:02:49
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So that's the conventional answer, is that we just don't, it's just not part of our training and not really part of the ethos of medicine, which for the last 150 years or so has pretty much been hell-bent on sort of the scientific method, rooting out disease and curing disease at all costs.
00:03:07
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So you put those together, and that means that we as an industry are not very well suited to when our cures don't work.
00:03:16
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So that's one answer.
Challenges in ICU Environment and Death Discussions
00:03:18
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And I think it's extra hard in the ICU setting and among the workforce in the intensive care kind of setting because, now this is me guessing, but because that's where it's sort of the least natural environment in healthcare.
00:03:39
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It's the most, like, you're basically, you've created an entirely artificial environment
00:03:46
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experience, internal experience in a hospital.
00:03:49
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Where nature, where you're really hell-bent on intervening on a natural course.
00:03:56
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And all the momentum that goes into practicing medicine and the experience of medicine, all that, all that, those big wheels get turning and they get turning real hard and real fast in the ICU.
00:04:09
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And so it's just, death is, it's just even more anathema in the ICU.
00:04:15
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the idea that we can intervene and fix everything is even more the case in the ICU, et cetera.
00:04:22
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So it's sort of like the ICU is the extreme version of the rest of medicine.
00:04:26
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And in this sense, super removed from the natural flow of life.
00:04:31
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And the natural flow of life is where death hangs out.
Integrating Palliative Care in ICU
00:04:34
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And I think that with education, one of the things that strikes me is that in my fellowship days, we didn't recognize maybe how important this is.
00:04:43
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Now with the growth of
00:04:45
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palliative care, supportive medicine, we are recognizing the importance, but to some extent, we've abdicated that responsibility to our colleagues in your field.
00:04:54
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And now I feel that a lot of our younger doctors get no experience, no exposure to this.
00:04:59
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And that is also, I think, a growing problem.
00:05:03
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Oh, you're so right on that, Sergio.
00:05:05
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This is one of the sort of, you know, like, it's sort of like discussing the, you know, the environment and climate.
00:05:12
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It's sort of like,
00:05:13
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we have to realize that in medicine and in healthcare, that there's a downside to all of our progress.
00:05:22
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You know, that we keep inventing new cures, new fixes, new technologies that can have the promise to extend life, but that just gets us farther and farther afield from what happens when those things don't work.
00:05:38
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So,
00:05:39
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that's a preamble to say, well, gosh, in my time in practicing medicine the last 15 years, it's been really heartening to see the progress in this case is that palliative care has grown, has become more and more accepted, more and more embraced and sought after.
00:06:00
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So that's a success, right?
00:06:03
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On some level, certainly from my field's point of view, that's a success.
00:06:06
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Now, okay, the fallout,
00:06:09
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The downside is that I meet a lot of younger docs, hospitalists, and intensivists who are totally down with palliative care, you know, totally accept the idea of palliative care, the importance of it, et cetera.
00:06:22
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But then they say, well, now, you know, I love palliative care.
00:06:25
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I just, I call the palliative care guys when someone's suffering or when someone's dying.
00:06:29
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And so to your point, Sergio, even a really sensitized, well-meaning intensivist, then we'll end up
00:06:36
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outsourcing this very important piece of the puzzle and then therefore having less and less experience themselves dealing with the struggle at the end of life.
00:06:47
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Absolutely.
00:06:48
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And I think that what we'll try to touch on throughout the conversation today is how to maximize the team effort.
Clarifying Medical Terms for Better Communication
00:06:54
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And some circumstances might prevent you from having a palliative care colleague, but also we'll talk a little bit later of how we can best integrate them into the ICU team.
00:07:06
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to provide the greatest benefit for our patients.
00:07:09
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I do think that words matter a lot in terms of the meaning that they carry.
00:07:16
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And one of the things that I find, BJ, when we talk about this whole end of life topic, which includes a lot of terms,
00:07:22
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is that many people use words interchangeably that don't mean the same thing.
00:07:27
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And many times because of that, there are tremendous misconceptions.
00:07:31
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And you see this at all levels, when you're talking with families, when you're talking with your team, when you're trying to convince maybe a CT surgeon to involve palliative care.
00:07:40
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So what I would like to do in the next block is maybe give you a couple of words that you can maybe contrast and better define for us in some different groups.
00:07:50
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Would that be okay?
00:07:52
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That sounds great.
00:07:53
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Yep.
00:07:54
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So the first pair is code status versus goals of care.
00:08:01
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Right.
00:08:02
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Really important distinction, right?
00:08:03
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So code status is a very specific, it's a piece of the sort of, or an outcome of goals of care conversations.
00:08:13
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It's a piece of the puzzle.
00:08:16
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But I think what ends up happening, I've heard too, I've seen it too often, is that someone says,
00:08:21
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that you're treated one way in the hospital if you're full code and you're treated another way if you're DNR.
00:08:27
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And it really, that code status comment, really it should be treated as a very narrow piece of the puzzle.
00:08:35
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It is simply what to do when that patient is actually in the throes of dying.
00:08:42
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It shouldn't have anything to do with the amount of care and attention that patient receives or the concern they receive.
00:08:49
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how invested we physicians are in their care.
00:08:54
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It only means how are we going to respond at that moment when they begin to die.
00:09:03
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That's it.
00:09:04
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Whereas goals of care.
00:09:06
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Yeah, go ahead.
00:09:06
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Sorry.
00:09:07
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Yep.
00:09:08
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No, go on.
00:09:09
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No, I was going to say that it only applies when the heart stops, right?
00:09:13
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Which is extremely, extremely narrow.
00:09:17
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Yes.
00:09:19
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That's right.
00:09:19
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And you really are.
00:09:21
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And right.
00:09:21
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And in that vein, you're, you're, you're, you're the, the, the sort of the categories within a code status are very fixed and very like, look, are you going to do essentially, I mean, you can parse intubation from chest compressions from, you know, whatever you can, you can parse it out.
00:09:40
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But essentially, I think we all know practically speaking,
00:09:44
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It's kind of either like either you want us to do all these things to try to pull you back from the cliff's edge or that that being full code or DNR, we're going to kind of just tend to your comfort.
00:09:57
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That will be the thrust of our work.
00:09:59
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It really is two choices, essentially, practically speaking, and inherently narrow.
00:10:05
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So, and it's really also a phenomenon of the hospital.
00:10:09
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And of course, intensivists, you guys are in the hospital.
00:10:12
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It's not really outpatient intensive care.
00:10:16
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So this is, so it's very narrow.
00:10:17
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It's specific to the hospital, generally speaking.
00:10:21
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Now, goals of care, that too, of course, is a little bit of a misnomer because goals of care is not just simply what are your goals?
00:10:31
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It's not just what the words say there.
00:10:36
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Goals of care really is the idea that you have conversations with patients and their families over time about their changing priorities.
00:10:49
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So as someone moves for like in a cancer diagnosis, you move from stage one or stage two where it's potentially curable and you're largely in the outpatient setting, but then as you move to the more advanced stages, you're more likely to be sick, you're more likely to land in the hospital,
00:11:05
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as you move into stage four metastatic disease, that essentially for most cancers means it is not curable.
00:11:13
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And of course, there's a huge distinction there.
00:11:15
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So if something's not curable, we know this, right?
00:11:18
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I mean, back to the code status, if I have stage four lung cancer, you know, our defaults, you might advocate that the defaults in the system for people with stage four cancer, that code status should be DNR because we know
00:11:36
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that the percent of people who are actually successfully revived and leave the hospital who have stage four disease is infinitesimally small, approaching zero.
00:11:46
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So anyway, that's a little bit of a tangent.
00:11:48
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But back to the goals of care, this is a conversation that happens over time where what you're really trying to do as a clinician, you are trying to ask questions, you're trying to evince your patient's personality, their values, their beliefs,
00:12:05
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It's entirely subjective, but the idea is if you know your patient very, very well and you know what they want and they are informed, well, then your role as a clinician is to help advocate for them and to link their goals with the intervention that suits those goals.
00:12:24
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So goals of care is much larger.
00:12:27
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It's relevant inpatient, outpatient.
00:12:29
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Goals of care are expected to change over time as people move through a disease process.
00:12:37
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And yeah, it is a way, the idea of Goals of Care is to make sure that the treatments we are prescribing and offering and giving link up to what the patient wishes for within the context of their illness
00:12:58
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So, yeah, sorry, I'm going to start repeating myself.
00:13:00
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Does that make sense, Sergio?
00:13:01
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Absolutely.
00:13:01
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Do these big distinctions make sense?
00:13:03
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I think it's an important distinction for several reasons, but the reason why I wanted to make sure that we expanded on that is that often I'll talk with a colleague or a young intensivist or a fellow when I was in academia and ask about, do we have a goals of care discussion?
00:13:20
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And the response is, yes, they're full code or yes, they're DNR.
00:13:22
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Well, yes.
00:13:23
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Like you said, that's part of it, but it's a very small part and narrow part of it, and there's a lot more.
00:13:29
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The other reason why I wanted to make sure that we talked about this, BJ, is that last month in JAMA Internal Medicine,
00:13:37
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There's a fascinating study that looked at a subgroup of patients from a large randomized study where they recorded conversations between the ICU team and the families and really looking at clinician family communication about patients' values and preferences in intensive care unit, so goals of care.
00:13:57
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And not surprisingly,
00:13:59
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The amount of discussion around what patients really value was minimal.
00:14:05
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The amount of discussion about integrating that into decisions about therapy was almost non-existent.
00:14:11
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So clearly, when we study this, we're doing a very, very bad job in the ICU.
00:14:17
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Yeah.
00:14:19
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And don't be too hard on yourselves.
00:14:21
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It's not just the ICU.
00:14:23
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This is sort of medicine at large.
00:14:26
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And again, you guys are just sitting at the most sort of concentrated, intensive part of it.
00:14:30
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But yeah, this is a huge problem.
00:14:34
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And I'll just say, there's plenty to talk about here, but I'll just simply say, this is where you start realizing that I think we have a design flaw in the system.
00:14:43
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Because obviously you, Sergio, and your colleagues care about patients' values and preferences.
00:14:49
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You care to be delivering things to your patients that actually help them in ways that they feel helped.
00:14:58
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I mean, of course you guys want that.
00:15:01
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But the whole orientation in healthcare for so long, especially in the ICU where sometimes your patients are non-communicative and there's so much technology at play,
00:15:10
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The orientation of our work is so much centered around our perspective as clinicians versus the patients.
00:15:19
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And you start, once you sort of get turned on to that distinction, you'll see it everywhere, including this problem around goals of care.
00:15:27
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That whole purpose of goals of care is really to help shift the orientation into the patient's point of view, into the patient's perspective, because that is what we need to be serving.
00:15:38
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Absolutely.
00:15:38
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And I think that we talk a lot about patient-centered care, but the reality is that from a design point, everything we do in medicine is designed around the providers and not the patients, especially the ICU.
00:15:50
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The whole idea of an ICU is around how do we provide care more efficiently, not how do we make a difference from a patient's perspective in terms of what they really need.
00:16:01
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But I do think it's important because the other thing that you mentioned that without diving further into it,
00:16:08
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we can go to another topic, was the DNR does not mean do not treat me.
00:16:11
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It just means if my heart stops, don't call a code.
00:16:14
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But I think that I often hear from colleagues that they don't want to bring a patient to the ICU because they're DNR.
00:16:20
Speaker
Well, what does that mean?
00:16:22
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Right?
00:16:22
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I mean, there's plenty of things you can do in the ICU, sort of a code that might make a difference and might be aligned with what the patient values and what the patient's trying to achieve in terms of their goals of care.
00:16:33
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So I think that's a great distinction.
00:16:36
Speaker
Now, let me ask you one that I'm sure that really falls into your domain because I hear it all the time when I suggest that maybe we should bring supportive medicine and palliative care.
Understanding Hospice vs. Palliative Care
00:16:48
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So palliative care versus hospice care.
00:16:51
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Okay.
00:16:53
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Thank you.
00:16:53
Speaker
I love your question.
00:16:54
Speaker
These are such...
00:16:57
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I think so much pain gets perpetuated based on these sort of basic misunderstandings.
00:17:02
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So thank you.
00:17:03
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So, right.
00:17:04
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So hospice is a subtype of palliative care.
00:17:08
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So let's start with palliative care.
00:17:10
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I mean, there are definitions that are several paragraphs long.
00:17:14
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If you Google palliative care, CMS, for example, you get a few paragraphs, or the World Health Organization.
00:17:20
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So it's a difficult thing to synopsize,
00:17:26
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really clearly, but basically palliative care is simply the interdisciplinary science of feeling as well as possible within the context of serious illness.
00:17:38
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So all our work is helping people within the context of their illness feel as well as can be.
00:17:44
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So sometimes palliative care is symptom management.
00:17:48
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Sometimes it's more psychological support.
00:17:51
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Sometimes it's just holding someone's hand and not abandoning them when they're most vulnerable.
00:17:56
Speaker
know and and it's absolutely irrespective of the clock so nothing in the definition of palliative care tells you anything about their proximity to death so if you were to come to my palliative care clinic at ucsf you'd meet patients that are i've been seeing for a dozen years who are nowhere near death who may even be in remission but they're still struggling with symptoms or issues around their identity or whatever so so
00:18:23
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In palliative care, our call to arms is suffering, period.
00:18:29
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And so that's palliative care.
00:18:32
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Hospice is a subtype of palliative care that is focused around the final months of life.
00:18:40
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So it is end-of-life care.
00:18:41
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It is the subset of palliative care that is designed for the end-of-life.
00:18:48
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That's the big distinction.
00:18:50
Speaker
The other thing to know about hospices
00:18:54
Speaker
it has several meanings because since 1982, there has been a Medicare hospice benefit.
00:19:03
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There is an insurance classification and designation for who qualifies for hospice.
00:19:09
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There is no such designation for palliative care.
00:19:12
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It's wide open.
00:19:13
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But for hospice, you need two doctors to say that the patient has six months or less to live.
00:19:19
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And you need that.
00:19:19
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And if someone's going to sign on to hospice, they also need to give up
00:19:23
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any curative intended efforts.
00:19:28
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So to go on to hospice, it is a real crossroad.
00:19:31
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So to go on to hospice, in other words, to onto the hospice benefit, for that to be covered, you have to be dying soon and your goals have to convert to comfort.
00:19:45
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Hospice will not pay for curative efforts.
00:19:48
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So it's a real fork in the road, right?
00:19:50
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And palliative care has no such fork in the road.
00:19:53
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Out of care works great.
00:19:55
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Yeah, sorry.
00:19:57
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I was going to ask you, because I think it's very important to distinguish this, because on one hand, hospice is much more than my patient is going to be extubated, I'm going to stop the vasopressors, and they're going to die in two hours, right?
00:20:12
Speaker
Right.
00:20:13
Speaker
And the literature would suggest from what I read, and I was going to ask you that for many patients, they probably will live longer in hospice with active medical treatment and not only live longer, but better for those months that they have.
00:20:26
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And I think that in the ICU, it's too late many times.
00:20:32
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But the other side of that discussion, which I think is very important and I'm trying to convey to our clinicians, is that you don't have to be dying to benefit from palliative care in the ICU.
00:20:44
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There is a hell of a lot of suffering in the ICU that can be alleviated with the right team.
00:20:49
Speaker
And I think that the role for palliative care in the ICU is much broader, right?
00:20:55
Speaker
Absolutely.
00:20:56
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Huge, huge point.
00:20:58
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So,
00:20:59
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Right, palliative care, like for starters, to your point, just to echo, both hospice and palliative care at large, there are mounting data to suggest that they actually can help you live longer.
00:21:13
Speaker
Surprise, surprise, when you're less stressed out and living comfortably and living well and being heard and listened to and seen, well, you tend to feel better and you tend to live longer.
00:21:24
Speaker
So that used to be when I was in training, I don't know how many years ago,
00:21:28
Speaker
the thinking was, well, you can go on to hospice or palliative care, you'll get quality of life, or you cannot go that route and live longer, but more miserably.
00:21:41
Speaker
So we now know that that's just, that's total bogus, that's not true.
00:21:45
Speaker
If you wanna live as long as possible, there's still a big role for hospice and palliative care in your life.
00:21:50
Speaker
Okay, so that's one major, major point.
00:21:55
Speaker
Now, the second thing is, as you just said,
00:21:58
Speaker
So because palliative care doesn't require you to give up any other type of care, palliative care in a hospital setting is a consulting service.
00:22:08
Speaker
It's an added layer of support that you intensivists would welcome into the mix when your patient or their family is really struggling, is really suffering.
00:22:17
Speaker
It's just you guys getting more help to help them feel well.
00:22:20
Speaker
And they'll probably live longer with palliative care involved.
00:22:24
Speaker
And then the palliative care team can also be a source of continuity.
00:22:27
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So when it comes time for that person to transition out of the ICU, the palliative care team will follow them to the floor and some programs can follow them on to home and be a source of continuity of care as well.
00:22:38
Speaker
So long story short, for intensivists, they're really, on paper, there should be zero downside and only upside to involving the palliative care team when your patient is really struggling.
00:22:52
Speaker
Absolutely.
Long-term Effects of ICU and Palliative Care Benefits
00:22:53
Speaker
And I think that one of the aspects that really we have just started talking about in critical care, BJ, which is really the tip of the iceberg, is the very serious effects that survivors of ICU have in terms of PTSD, in terms of anxiety, cognitive dysfunction, physical impairment.
00:23:14
Speaker
So surviving a critical illness in the ICU can often become a chronic condition of suffering.
00:23:19
Speaker
And like you said, I think that
00:23:21
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Allowing them to connect with the palliative care team early might help them tremendously down the road in alleviating that suffering once they're able to leave the hospital.
00:23:29
Speaker
So I think it's a very important point that the ICU is slowly embracing, but we still have a lot of work to do with some of our colleagues in specialties and in the surgical field.
00:23:39
Speaker
But we'll keep pushing that narrative.
00:23:44
Speaker
Yes, let's do it.
00:23:46
Speaker
The last one that I wanted to ask you about was this whole concept of withdrawal of care versus comfort measures.
00:23:53
Speaker
I just feel like my heart falls to the floor when I get a sign out and somebody says we're withdrawing care.
00:24:00
Speaker
What do you mean?
00:24:01
Speaker
We should never stop caring.
00:24:02
Speaker
These patients need more care and these families need more care.
00:24:05
Speaker
Maybe there are better ways of talking about this.
00:24:09
Speaker
Oh, you're so good, Sergio.
00:24:10
Speaker
Yeah, amen.
00:24:11
Speaker
That's one of those, every time I hear that phrase, I just bristle.
00:24:14
Speaker
And there again, of course, your colleagues don't mean to stop caring, of course, but our language reveals some problems.
00:24:22
Speaker
And when we use that language, we send signals that are just not helpful to anybody.
00:24:28
Speaker
And so, yeah, I think that phrase should just be banished.
00:24:32
Speaker
I mean, there really should be no such thing as withdrawing care.
00:24:36
Speaker
I know what, you know, we know what people mean by that, but it's absolutely the wrong language and the wrong flavor.
00:24:43
Speaker
And God forbid a family hears us say that.
00:24:47
Speaker
So, yeah, couldn't agree with you more.
00:24:49
Speaker
So would you suggest comfort measures only or compassionate extubation?
00:24:54
Speaker
Are there better ways of connoting what we're trying to do?
00:24:57
Speaker
Because I do think that what we say conditions behavior in a subliminal way, right?
00:25:03
Speaker
So if I get a sign out for withdrawing care, that patient falls off my radar in terms of visiting in my first round around the ICU that night, right?
00:25:12
Speaker
So what would be terms that you would suggest, BJ?
00:25:17
Speaker
Well, so I think you're, I think the, let's start with like what we're trying to convey, I think is that you as intensivists are, are gonna, you're just, it's just moving the mode of sort of like your intensive efforts will move from intensively trying to help like this person survive.
00:25:39
Speaker
And they're going to move from that goal to our intensive effort is to help them eke out some comfort.
00:25:46
Speaker
So, you know, when I was a fellow to make this point that it doesn't mean less care, we started using this phrase intensive comfort measures, you know, because it keeps the word intensive in there and says, hey, okay, no, no, we're not going to sleep here.
00:26:04
Speaker
We're going to stay vigilant and we're just, instead of reaching for our, you know, our fancy machine,
00:26:12
Speaker
We're going to maybe reach more liberally for the fentanyl or whatever it is.
00:26:16
Speaker
But the idea is, it's just stay intensively involved, stay caring.
00:26:21
Speaker
There's just your, your goal is moving from survivor, from survival to comfort.
00:26:27
Speaker
That's, that's the only distinction.
00:26:28
Speaker
So I like this intensive comfort measures.
00:26:31
Speaker
I like that a lot.
00:26:32
Speaker
I've never used that word, but I will actually, I like that.
00:26:34
Speaker
And it even has an acronym.
00:26:35
Speaker
So that's, that's perfect.
00:26:37
Speaker
ICM.
00:26:38
Speaker
Yeah.
00:26:40
Speaker
I love it.
Patient and Family Needs at End of Life
00:26:41
Speaker
So,
00:26:42
Speaker
You obviously, I mean, have cared for many, many patients at the end of their lives.
00:26:48
Speaker
You have a lot of experience.
00:26:49
Speaker
I mean, I think a lot of the premise of the TED Talk you gave several years ago in terms of redesigning the experience is based on that experience.
00:26:57
Speaker
But what do patients really want at the end of life or what do families really want at the end of life when it's in the ICU?
00:27:04
Speaker
Could you share some of your thoughts along those topics with us?
00:27:09
Speaker
Yeah, I mean, of course it varies.
00:27:11
Speaker
And part of the trick to this kind of work is, you know, you especially as intensive as you have to kind of you have to grok.
00:27:20
Speaker
You're moving from a much more sort of objective mode of operating to a much more subjective one.
00:27:28
Speaker
And I think that's why it gets so tricky, because because in this subjective realm, you know, your patients have a different kind of power.
00:27:35
Speaker
they have more power.
00:27:37
Speaker
They're the ones who tell you what's important to them.
00:27:40
Speaker
They're the ones who have to feel what we're doing to them.
00:27:44
Speaker
First is sort of the objective, more science side, like we doctors are the experts.
00:27:48
Speaker
The patients are a much more passive vessel receiving our expertise.
00:27:53
Speaker
But when you move into sort of preferences, that flips the power dynamic.
00:27:57
Speaker
And I say that just to sort of name why it can feel kind of clunky and odd and strangely difficult sometimes and kind of vague, because it is.
00:28:06
Speaker
Um, so, so one is to just, I think for your listeners, you just have to kind of cop, you're moving from a moment where an objective zone where you know more than the patient to at a subjective mode where the patient and their families know more than you do.
00:28:22
Speaker
And that's tricky.
00:28:23
Speaker
So just to call it out.
00:28:25
Speaker
Um, but looking for themes, um, you know, I think most people at the end of life are, uh,
00:28:35
Speaker
concerned for their families and their loved ones.
00:28:38
Speaker
So you'll see a lot of folks who are in their final moments when they realize death is coming, much of their worries will be about their family.
00:28:48
Speaker
So sometimes the best thing you can do for your patient may be to spend a little time with their family and to let that patient know, say, hey, I'm going to sit with your family and we're going to talk things through and I'm going to be there for your family.
00:29:03
Speaker
Even if you're asleep or even after you die, I want you to know I'm going to be helping your family too.
00:29:09
Speaker
I'm going to be making sure they get the attention they deserve or something like that.
00:29:14
Speaker
If you can impart that to your patients, that you're going to care about them essentially, even after they're gone, even for a moment, you're going to look after their family.
00:29:23
Speaker
That's a huge, that's a beautiful gift to them.
00:29:26
Speaker
And that will help bring down their anxiety.
00:29:30
Speaker
That's a big one.
00:29:32
Speaker
A second one, of course, is really around the basics of symptom management.
00:29:36
Speaker
Most people are not interested in suffering physically at the end of life.
00:29:41
Speaker
So getting really, really good with your opiates and your benzos and how to help people suffer less from sort of a medication point of view.
00:29:52
Speaker
That's something that you guys can do well yourselves, and that's something that your palliative care colleagues might also be able to help you with.
00:29:58
Speaker
So that's huge, of course, too.
00:30:01
Speaker
And then of course, most Americans identify, yeah, we're a secularizing society, but most Americans still do identify as religious, and many of those who don't identify as religious will identify as spiritual.
00:30:15
Speaker
So one way or another, and especially at the end of life, I mean, this is where you gotta realize your patients are approaching the horizon, the abyss.
00:30:27
Speaker
And that can be a terrifying
00:30:31
Speaker
notion.
00:30:32
Speaker
I mean, we are wired to run away from death.
00:30:34
Speaker
I mean, look, the ICU is born of this impulse to do everything we can to keep death at bay.
00:30:41
Speaker
But when it's coming, you know, your patients are going to be staring at a huge a bit.
00:30:47
Speaker
And so sometimes the intervention is to bring in their chaplain or to ask them, hey, you know, do you have, this is
00:30:59
Speaker
Do you have a pastor that you love to speak with or someone from the outside that I can call and invite in to come see you?
00:31:07
Speaker
Or would you like to see our chaplain or whatever it is?
00:31:10
Speaker
Some connection to their spiritual life can be hugely helpful and tends to be a very important piece of the puzzle for patients and family.
00:31:20
Speaker
And this is where I think this is where, you know, you and ICU docs, you got plenty to worry about.
00:31:25
Speaker
So you don't need to play priest yourself, but what can be very helpful is linking people to chaplains and other spiritual resources.
00:31:36
Speaker
So that's huge.
00:31:39
Speaker
And lastly, it's sort of related, is this the power of bearing witness?
00:31:44
Speaker
It's a spiritual notion, but it's also a humanitarian notion.
00:31:49
Speaker
And I think of it for most of us in our own life, maybe you've had an experience, Sergio, where you can remember
00:31:55
Speaker
you know someone someone somewhere who just sees you for who you are warts and all isn't trying to fix you because you know when you're trying to fix someone you're implying they're broken and even when someone's body may be broken their spirit or their persona doesn't isn't necessarily broken um you know and you can you can do so much for someone by just
00:32:21
Speaker
By a little touch, maybe it's holding the hand, maybe it's eye contact, maybe it's holding silence for a moment.
00:32:28
Speaker
It doesn't have to be a big thing or maybe just sitting down and sharing a moment of silence and witnessing someone, seeing that person, not judging them, dropping your concerns about the future or about work just for a moment.
00:32:42
Speaker
That is one of the most healing kind of modes I've ever come across.
00:32:46
Speaker
And it ain't fancy and it doesn't take a lot of time.
00:32:49
Speaker
It just takes some courage on your part to just sit there for a second and see the person, even maybe even love them.
00:32:57
Speaker
That's huge.
00:33:00
Speaker
And then, I mean, we could talk for hours on this, but I think you already named a big one is just acknowledging that what happens in an ICU
00:33:09
Speaker
tends to be is traumatic.
00:33:13
Speaker
Obviously what lands people in the ICU can be traumatic, but the experience in the ICU itself can be traumatic and understanding what trauma does to a nervous system, either the patients or their families, just being sensitized to how they're gonna walk away from this experience is really powerful.
00:33:32
Speaker
So sometimes that simply means maybe a little extra effort in the room
00:33:37
Speaker
to make it look like anything but a hospital room.
00:33:39
Speaker
Maybe it is at the end of life.
00:33:40
Speaker
You do take a little extra moment to clean up the patient's body, to remove the tubes or to cover them up.
00:33:47
Speaker
But something, and this will be my final, I'm rambling here, but my final point is some way of de-pathologizing the scene.
00:33:58
Speaker
You guys are so, you're dealing with so much stuff and so much pathology.
00:34:04
Speaker
But remember, that's our word.
00:34:06
Speaker
That's our notion.
00:34:07
Speaker
That's still a human being in there, and they still are trying to feel like a human being.
00:34:12
Speaker
So after we've pathologized our patients, however we can remember at the end to de-pathologize them and return them to a basic human being, that helps them, that helps the families, and it also will help you guys not burn out.
00:34:30
Speaker
Yeah.
00:34:31
Speaker
And I think if you get to the root of it, compassion is really recognizing everything that you have and you feel in another person and feeling their pain, but also figuring out the things that would help you, would help them and taking that moment.
Paradoxes and Compassion in ICU Care
00:34:47
Speaker
And I think that
00:34:48
Speaker
One of the things that I always find fascinating in BJ is that we are not very good human beings in general and being very rational.
00:34:55
Speaker
Even when we have proof of things, we kind of forget.
00:34:58
Speaker
And the two paradoxes that I've always been fascinated by in my professional life as an ICU doctor is, A, we spend all our energy and intellect in avoiding death.
00:35:11
Speaker
Yet, as far as I could check, since we've recorded time, mortality remains at 100% for everybody.
00:35:18
Speaker
Right.
00:35:18
Speaker
That's right.
00:35:19
Speaker
And two.
00:35:19
Speaker
That's right.
00:35:20
Speaker
Yep.
00:35:21
Speaker
And the second thing is that often every intensivist will recognize, even though they forget it, that it's often family members of patients who died who are the most grateful of our care.
00:35:35
Speaker
And it's probably because they don't remember what you said.
00:35:37
Speaker
They don't remember what you knew.
00:35:39
Speaker
But they remember how you made them feel at that moment.
00:35:41
Speaker
And that is very powerful.
00:35:42
Speaker
And I think that's something that we should remind ourselves and I think speaks to what you were identifying as things that matter.
00:35:51
Speaker
Yeah.
00:35:51
Speaker
Amen, Sergio.
00:35:52
Speaker
And again, I want to be really careful with your listeners and for both of our sakes, too, is because we're all so darn busy.
00:36:00
Speaker
And I don't want any of this to feel like yet another thing on your very long to do list.
00:36:06
Speaker
It's more of sort of a spirit that you bring with you to your work.
00:36:11
Speaker
It's more in an attitude, in your demeanor.
00:36:16
Speaker
Maybe it is how you, again, hold silence, or maybe how it is you ask an open-ended question, like, hey, how are you doing today, Mr. Jones, or whatever.
00:36:25
Speaker
These very relatively, a hand on the shoulder, sometimes a hug.
00:36:31
Speaker
Or sometimes, guess what, some of the most powerful experiences I've ever had or witnessed is when a physician actually cries with a family.
00:36:39
Speaker
Obviously, you can't stage that, but if you find yourself welling up, that is not a problem.
00:36:44
Speaker
That is not a failing.
00:36:45
Speaker
That is not a weakness.
00:36:46
Speaker
That is a very human moment, and patients and families will love you only more if they've seen that you are actually moved by this thing that they're going through.
00:36:57
Speaker
That is a stunning and of course that's just good for you too.
00:37:01
Speaker
So you don't stay all bottled up.
00:37:04
Speaker
And I think that genuine respect and compassion should not take a lot of time.
00:37:10
Speaker
I think we're all like they have a long to do list.
00:37:12
Speaker
We feel we're busy.
00:37:13
Speaker
But the reality is that having a, like you said, humane and compassionate moment is not going to put you behind in your day or in your shift.
00:37:22
Speaker
and it will make a huge difference for that family.
00:37:25
Speaker
And that's why I'm so upset with the withdrawal of care, because I think that the more you visit these families for patients who are dying and getting comfort measures, even if it's just for a couple of minutes and making sure they're comfortable and checking on the family, probably makes a big difference.
00:37:42
Speaker
It definitely makes a big difference.
00:37:45
Speaker
And remember, too, I mean, these final, especially at the very end of life, when we're talking about the death moment in the ICU,
00:37:52
Speaker
You know, the imagery is going to be part of what can be part of this sort of re-traumatizing memory for family members.
00:38:01
Speaker
Now, so it's loaded.
00:38:03
Speaker
So the potential to do harm in those moments is great.
00:38:09
Speaker
You can accidentally set families up to feel even worse about the death of their loved one.
00:38:16
Speaker
But looking at it from a different angle, you have so much power to affect that.
00:38:22
Speaker
If the final imagery when the patient dies and the final imagery is you guys, the nurses, maybe the MAs, the folks at the desk, anyone, you can ritualize this.
00:38:35
Speaker
And maybe everyone gathers around the bed and just holds a moment of silence.
00:38:39
Speaker
And then circle back for a minute and check on that family.
00:38:44
Speaker
You do that and the final imagery for that family when they look back on this is not going to be wincing
00:38:51
Speaker
trauma response, it's going to be, oh my Lord, what a beautiful human moment that was.
00:38:57
Speaker
And that sets your families up to have a wholly different experience with grief, et cetera, et cetera.
00:39:04
Speaker
And you will feel different too.
00:39:06
Speaker
And there again, it ain't much.
00:39:07
Speaker
It's just a simple kind of human moment at the end.
00:39:10
Speaker
But just keep in mind that that imagery, more than the things you say, that imagery, the feel is what's going to be seared into families.
00:39:18
Speaker
And you can do a lot to just humanize that.
00:39:21
Speaker
I think it's like the power of a moment, right?
00:39:24
Speaker
It doesn't have to be long, but the power of that moment is what really transcends.
00:39:28
Speaker
And when these images are revisited in the future, it's much nicer to have that than a bloody room or people doing CPR and what we usually see in the ICU.
00:39:39
Speaker
Exactly.
00:39:40
Speaker
Absolutely.
00:39:41
Speaker
Yeah.
00:39:43
Speaker
I always talk about time as being the great equalizer, but often I find that in the ICU, it's a little bit different maybe when you have a long relationship with a patient in
Aligning Patient-Family Perspectives on Death
00:39:53
Speaker
palliative care.
00:39:53
Speaker
But a lot of times it seems that the patient, whether they're intubated or trying to talk with us, there's all the signals that they're really ready to die and the family's not ready.
00:40:05
Speaker
And a lot of times this creates a lot of conflict.
00:40:08
Speaker
Obviously, this is another situation where I think supportive medicine and palliative care can be very helpful as a mirror to the family in terms of trying to identify what the patient would really want.
00:40:17
Speaker
But any suggestions or tips that you could give us when we have these misalignments?
00:40:25
Speaker
Yeah, boy, it's really hard.
00:40:27
Speaker
It's so darn hard, especially if you have a non-communicative patient who can't really chime in.
00:40:33
Speaker
And sometimes you're left with an advanced directive that seems to be in conflict with the family or within the family there are competing voices.
00:40:40
Speaker
You know, it's just so easy for this to get tricky just because human communication is tricky, period.
00:40:51
Speaker
So, I mean, I think one thing we have to remember, I've seen, I've been involved with it too, where you have a non-responsive patient who may have stated their wishes, you know, for comfort measures, for example.
00:41:03
Speaker
But they're intubated, not making a noise, not speaking up, and you have a spouse or a close family member pleading with you to do the next thing, to try the next thing to help them live longer.
00:41:17
Speaker
And boy, is that a difficult moment.
00:41:19
Speaker
You have a quiet patient who can't really speak for themselves, even though they kind of did an advanced directive.
00:41:25
Speaker
But you've got this poor living, breathing person in front of you pleading with you, and
00:41:30
Speaker
It's very natural, very human to say, okay, well, I'll go with the family members, please, because she's in my face right now and I need to respond.
00:41:39
Speaker
I can't just let them die.
00:41:42
Speaker
Well, yeah, you can.
00:41:43
Speaker
I mean, I think what's going to start happening in here is it used to be, I think, that from a legal point of view,
00:41:50
Speaker
A lot of things were done in a hospital from a sort of a CYA point of view, cover your tush.
00:41:56
Speaker
Like I have to intubate, I have to give pressure, I have to do all these things, even though I know it's not going to work, because if I don't, I'll get sued.
00:42:04
Speaker
The family needs to, and it has to have the appearance that I, quote, did everything.
00:42:09
Speaker
And of course, what a monumental waste of resources, time, and then you set up this charade of care, or like a soft code, for example.
00:42:18
Speaker
You know, we need to be more courageous than that.
00:42:21
Speaker
And the courage is to say, I'm so sorry, you know, I can't do that either because they stated their wishes or because I know it's futile and I'll only be making your loved one hurt more.
00:42:33
Speaker
I want, and I'm going to be here.
00:42:35
Speaker
I'm going to make sure they're as comfortable as can be.
00:42:37
Speaker
And I will hold your hand all the way through it.
00:42:40
Speaker
But I know you and I, Mrs. Jones, I know you and I both
00:42:45
Speaker
Neither of us wants your husband to suffer more than he has to and so because of that I'm not gonna I'm not gonna give him presses or blah blah blah But I'm not gonna run away either.
00:42:56
Speaker
It's sort of like you need to hold the line You're the professional.
00:42:59
Speaker
You're the one who knows you need to hold that line Don't don't you don't you don't need to shy away from the things that you know to be true and even when that family members pleading with you to do differently and
00:43:10
Speaker
What they're really pleading with you is they're really pleading with God.
00:43:13
Speaker
And they're pleading with you, you're someone who they're venting to.
00:43:19
Speaker
So you don't necessarily take them literally.
00:43:21
Speaker
You just hear their pain in their pleas.
00:43:24
Speaker
You do what you know to be right, but then you tend to the suffering of that family member.
00:43:29
Speaker
That's what they really need.
00:43:30
Speaker
They don't need you to follow their orders as much as they need you to hear them and be there for them.
00:43:38
Speaker
Does that make sense, Sergio?
00:43:39
Speaker
It does, and I think it's a great lead way to my next question, which really relates to how we should talk with patient families in the ICU in a better way in terms of goals of care.
00:43:50
Speaker
Because I think that too often we are asking the wrong questions.
00:43:54
Speaker
We're asking them, what do you want me to do from a medical perspective?
00:43:57
Speaker
And my sense is that we should be asking what does the patient or their loved one value?
00:44:03
Speaker
And in the context of what's going on, what would this mean for their future?
00:44:07
Speaker
And I think that one of the things that I've always admired, obviously, from the professionals, from the palliative care team, is that you never go into a family discussion without a game plan.
00:44:18
Speaker
You have a framework that you use.
00:44:21
Speaker
right?
00:44:22
Speaker
You're much better at listening, at asking the right questions.
00:44:26
Speaker
And I think that a lot of times that is missing because of our training and people who are not in that field.
00:44:31
Speaker
Could you just give us maybe some tips or some actionable items in terms of conducting better discussions with family members in the ICU where perhaps palliative care is not available?
00:44:44
Speaker
Yeah.
00:44:45
Speaker
So, you know, and it tends to be
00:44:48
Speaker
You know, not fancy stuff.
00:44:49
Speaker
It tends to be, again, the idea of not running away, sort of being able to sit with suffering that you can't fix, knowing how to exercise the compassion that you feel.
00:45:00
Speaker
You know, it's not exotic stuff.
00:45:02
Speaker
And there are training models.
00:45:03
Speaker
I mean, like I should mention, things like Vital Talk is a really great communication course that's geared towards clinicians, especially physicians.
00:45:12
Speaker
You know, so you can augment your training, you know,
00:45:14
Speaker
with other things.
00:45:16
Speaker
I really encourage folks to consider things like VitalTalk.
00:45:19
Speaker
So you can go acquire sort of communication skills.
00:45:23
Speaker
But meanwhile, I think just remembering that this is, in these moments, you're doing things, you're working on two levels.
00:45:32
Speaker
You're working as an expert technician, and you're working as a fellow human being.
00:45:37
Speaker
And you need to learn to toggle between the two.
00:45:40
Speaker
So as a technician,
00:45:43
Speaker
It makes no sense to say to our patients, hey, do you want us to do everything?
00:45:51
Speaker
It's just about the worst thing you could say.
00:45:53
Speaker
Of course I want you to do everything to help my mother.
00:45:57
Speaker
So that's just a non-starter question.
00:46:01
Speaker
But don't feel the need to ask, do you want chest compressions?
00:46:05
Speaker
Don't feel the need to do the Chinese menu thing.
00:46:09
Speaker
You're the expert.
00:46:10
Speaker
Like you don't go, you don't take your car in.
00:46:13
Speaker
It's not working.
00:46:14
Speaker
And the mechanic doesn't turn you and say, hey, well, would you like me to, I don't know, fix your air conditioning, even though the problem is your is your radiator?
00:46:25
Speaker
Like, no, like, you know that for a patient who's dying, no matter what, that intubation, for example, is the wrong tool, not going to help them.
00:46:34
Speaker
And when you know that, you shouldn't offer it.
00:46:37
Speaker
You don't need to hear your patient say, no, doctor, I do not want intubation.
00:46:41
Speaker
Instead, you need to say, hey, what's the most important thing to your loved one here?
00:46:47
Speaker
Have you guys talked about what the end of life might look like?
00:46:51
Speaker
Is comfort really, is comfort, has your husband or wife ever said anything about their attitude towards suffering or comfort?
00:47:00
Speaker
What do you think is most important to your husband now?
00:47:03
Speaker
These kinds of sort of value-based questions will get you get a sense of who this person is.
00:47:08
Speaker
You know, some people say, well, my husband's a fighter.
00:47:10
Speaker
He'll want to go down swinging.
00:47:12
Speaker
You know, I get that phrase.
00:47:13
Speaker
And then, hey, even if I know it's likely futile, I might suggest full code because for that person, they need to know that there's something in the fight for them.
00:47:26
Speaker
But most people don't have that.
00:47:28
Speaker
So, you know, again, you just need to ask them,
00:47:31
Speaker
about their values towards suffering, towards comfort.
00:47:36
Speaker
Have they talked about death?
00:47:37
Speaker
Have they talked about where they want to be when they die?
00:47:40
Speaker
I don't know.
00:47:41
Speaker
Things like this, sort of value-based things.
00:47:43
Speaker
These are so situation-dependent.
00:47:45
Speaker
But you do not need to ask them whether they want specific interventions.
00:47:50
Speaker
You're the expert.
00:47:51
Speaker
That's your job.
00:47:53
Speaker
Does that make sense on the technical side?
00:47:56
Speaker
And I think it's very important because it's very interesting to me to find that some of my colleagues have no problem when a surgeon comes and says, and somebody who's on three pressers and on 100% oxygen saying, well, I really can't take him to the OR, it would be futile.
00:48:12
Speaker
Yet we seem to not...
00:48:14
Speaker
equate that that's one type of medical therapy and maybe futility applies to many others that we do in the ICU as well like initiating dialysis and somebody who already has five failing organs and is on three vasopressors or doing or their heart stops when they're getting liters of epinephrine to do a code and give them a milligram of epinephrine per ACLS.
00:48:36
Speaker
These things I think that sometimes escapes patients and
00:48:39
Speaker
and be very
Communicating Clearly about Death
00:48:40
Speaker
clear.
00:48:40
Speaker
The other thing that I wanted to ask you about, DJ, which I think is also missing a lot of our conversation, is clarity about death, using that word specifically.
00:48:50
Speaker
I think that too often I've seen that they say the big problem with communication is the illusion that it has occurred, right?
00:48:57
Speaker
And if we don't say very clearly what's going to happen, then the patient family says, well, I didn't know he was going to die.
00:49:03
Speaker
What do you mean?
00:49:03
Speaker
We talked about that.
00:49:04
Speaker
So any suggestions there?
00:49:08
Speaker
Yeah, a couple.
00:49:09
Speaker
So one is, and there's a cultural overlay here too that we all need to be sensitive to and we need to be humble before because language and body language, tradition, idioms, they're specific to individuals and groups of people.
00:49:25
Speaker
And so it's really tricky, but I would say as a rule, you just need to dare to say death.
00:49:37
Speaker
It's usually our problem.
00:49:38
Speaker
We're the ones who are more afraid of it oftentimes, I think, than our patients and our family members.
00:49:43
Speaker
So often I've watched all this dancing around a patient happen and people using only euphemisms.
00:49:50
Speaker
And then finally a palliative care guy will come up or someone else will dare to say something about death.
00:49:57
Speaker
And that's received as a great relief because on some level, oftentimes patients and families too know that that's probably coming.
00:50:05
Speaker
And when someone finally dares to mention that possibility, it's like, oh, thank God, okay, I'm on the same planet with this person.
00:50:16
Speaker
And of course, it can be terrifying too to mention death, and sometimes families will fall apart when you do.
00:50:24
Speaker
But that's okay.
00:50:25
Speaker
A family member or a patient emotionally falling apart in the ICU should be considered normal.
00:50:32
Speaker
That's not a failing.
00:50:34
Speaker
That's nothing to try, you don't go to too many, too great lengths to avoid that.
00:50:37
Speaker
That is normal human stuff playing out and that's what you want.
00:50:42
Speaker
So don't try to like sorrow, tears, these are not the enemy.
00:50:49
Speaker
Dishonesty or false realities, wasting people's time, that's the real enemy.
00:50:57
Speaker
So dare to say death.
00:50:58
Speaker
You know, for example, back to your last question, Sergio,
00:51:01
Speaker
A great code conversation that I've heard, one of my teachers did this, and he sat on the edge of the bed with a patient and said, you know, have you ever really given thought to the end of your life?
00:51:14
Speaker
And you might preamble around, it depends on your relationship, but you might ease into it by a general conversation about mortality or the human condition.
00:51:24
Speaker
But essentially you can say, have you ever thought about
00:51:27
Speaker
what you would want when you, when it's your time, when, not if you die, but you know, when you die, we're all going to die.
00:51:34
Speaker
So quit saying if, when you die, have you thought about what, how you'd want to be treated at that moment?
00:51:42
Speaker
That's a great way to get into the code conversation.
00:51:45
Speaker
And though most people say, well, yeah, I just, if it's really common, I just want to be comfortable, you know, and I don't want a bunch of machines.
00:51:53
Speaker
I just want to become, most people say it when asked that way.
00:51:56
Speaker
It's a very different question than saying, hey, do you want us to try to bring you back?
00:52:01
Speaker
Or do you want us to do everything?
00:52:03
Speaker
Or do you want to live?
00:52:05
Speaker
We all do.
00:52:07
Speaker
Yeah, yeah.
00:52:08
Speaker
Most of us do.
00:52:10
Speaker
So anyway, so dare to use the D word.
00:52:12
Speaker
Just don't load it up yourself.
00:52:15
Speaker
You're going to project your own fears on the patients as the bigger risk than they're going to be freaked out by you using the D word.
00:52:21
Speaker
And talk about it as a normal piece of the puzzle, not a failing.
00:52:25
Speaker
You know, little subtle things, again, like when you die, not if.
00:52:29
Speaker
That kind of stuff sends really powerful signals.
00:52:32
Speaker
Does that sound right to you, Sergio?
00:52:36
Speaker
And I think that in my experience also, a lot of times when we have conversations with families, which is more common in our world, saying very clearly, your mother is dying, right?
00:52:49
Speaker
Despite what we're doing right now, she's actively dying.
00:52:53
Speaker
right just saying that out and explaining how you could make that more natural more peaceful surrounded by people who love her is is another way to get into that conversation and instead of saying would you want us to do cpr and a lot of times you might as you go in that conversation say
00:53:10
Speaker
Because she's already getting all the medications I would use if her heart stops, if her heart stops, we will let her go peacefully.
00:53:17
Speaker
And I think it's a different conversation because like you said, we are the experts on the medical part, just getting the family on the same page and understanding what is actually happening.
00:53:26
Speaker
That's right.
00:53:27
Speaker
That's right.
00:53:28
Speaker
And you can say things, you can soften it because the truth is right.
00:53:31
Speaker
I mean,
00:53:32
Speaker
it's hard to call futility because maybe someone has a 5% chance of working or a 10% chance, so it's unlikely, but is that really futile?
00:53:42
Speaker
It's a tough line to call.
00:53:44
Speaker
So you can soften it and say, I'm really worried.
00:53:50
Speaker
When you put it on yourself, this will tend to work well.
00:53:53
Speaker
I, clinician, I, physician, I'm really worried that your mom
00:53:58
Speaker
that your mom's not responding to this, that, or the other thing.
00:54:02
Speaker
I'm really concerned that death may be close, or I may, I'm really worried that she's dying soon.
00:54:10
Speaker
And then, so that, first of all, you conveyed that you care, like you, you have concerns, you have feelings of your own, and you're also conveying that you want to help, you know, you're not, you're not punting.
00:54:22
Speaker
You're going to stay there and deal with this.
00:54:25
Speaker
And, uh,
00:54:26
Speaker
Once you're in that mode, then you can also say, you know, and if I'm wrong, hey, I'll be, we'll celebrate together.
00:54:33
Speaker
You know, or I often hear myself saying like, and just so you know, I'm not going to get in the way of any miracles.
00:54:40
Speaker
I really want your mom to survive too.
00:54:42
Speaker
I'm just, I just, I'm concerned that that's not going to be possible.
00:54:47
Speaker
But I promise you we're going to do, we're going to keep our eyes open and we're going to see if there's anything to push back on or I'm not going to get in the way of a miracle, I promise.
00:54:56
Speaker
Little things like that, just a slight hedge to make it clear to your families that your eyes are open, you're still caring, and sure, maybe you're wrong.
00:55:05
Speaker
Even if you know you're not, that little humility, that can send a really sweet signal to the family.
00:55:13
Speaker
And I think that's a powerful message.
00:55:16
Speaker
And I think the other thing I want to just reiterate, because for me it was a very powerful message,
00:55:21
Speaker
insight is when we have the opportunity to talk with patients themselves in the ICU is reassuring them that we will care for their family once they're gone.
00:55:31
Speaker
Really making sure that they know that I think that's very powerful and I never thought about it that way BJ thanks for sharing that with us but I think it's something that we do have the opportunity it might be very reassuring for them as well in terms of yes we will be here for your family we will be here I mean to help them during that time.
Introducing 'The Beginner's Guide to the End'
00:55:51
Speaker
So I think that we could go on for hours here, but I do think that I want to be respectful for your time.
00:55:59
Speaker
And I wanted to close with some questions not related to palliative care and end of life issues.
00:56:06
Speaker
Would that be okay, BJ?
00:56:09
Speaker
Sure.
00:56:09
Speaker
Yeah.
00:56:09
Speaker
Yeah.
00:56:10
Speaker
So I always ask our guests about books, but before I ask you about books, I do want to ask you about your book.
00:56:18
Speaker
And I understand that you are publishing a book entitled The Beginner's Guide to the End, Practical Advice for Living Life and Facing Death.
00:56:27
Speaker
Could you share with us a little bit about that book?
00:56:31
Speaker
Yeah.
00:56:32
Speaker
Yep.
00:56:32
Speaker
It's Simon & Schuster publishing it.
00:56:34
Speaker
It comes out, I think, July 16th.
00:56:38
Speaker
You know, and it's exactly as it sounds, The Beginner's Guide to the End.
00:56:41
Speaker
It is meant for the public.
00:56:45
Speaker
It's sort of a generalist book.
00:56:48
Speaker
And it's a guidebook.
00:56:50
Speaker
So we cover everything from receiving a diagnosis, communicating the news to others, how to talk with your doctor, how to navigate the hospital, tips for sort of how to get through the hospital with the least amount of trauma.
00:57:10
Speaker
And then it has a chapter on sort of basics of symptom management.
00:57:15
Speaker
It has chapters on grief.
00:57:18
Speaker
And chapters also for the family members around how to write a eulogy or what's the difference between a funeral home and a mortuary.
00:57:25
Speaker
So it's really soup to nuts, a general guide to all the issues that come up around the end of life and meant to contextualize it.
00:57:35
Speaker
So medicine is a big piece of that puzzle, but I think it's important for all of us to remember that dying is not just a medical event.
00:57:42
Speaker
The medicine is a big piece of it.
00:57:45
Speaker
But in the end, this is very much a human and spiritual event, not simply medical.
00:57:50
Speaker
And the book buys to kind of map that territory out a little bit.
00:57:53
Speaker
Yeah.
00:57:54
Speaker
And so we'll definitely add that to the show links.
00:57:56
Speaker
I also will add some of the articles that we mentioned.
00:57:59
Speaker
And I think that the vital talk, of course, sounds like something that we should look into and maybe share with our clinicians as well.
00:58:06
Speaker
So, yeah.
00:58:07
Speaker
The question I have related other books is, is there a book or books that have influenced you significantly or a book that you have gifted often to others?
00:58:19
Speaker
You know, there's not an A book per se, but there's a few of them that I think are really good, whether you're coming at this from a professional or personal angle as a clinician or whatever else.
00:58:35
Speaker
Viktor Frankl's Man's Search for Meaning is sort of a classic in the palliative care field.
00:58:44
Speaker
And I think that's a short and easy read and very compelling and can help you.
00:58:50
Speaker
I think one other thing for all of us to do is I think part of our homework, even if your job, even if your desire, Sergio, is to be the best intensivist in the world, you know, your homework to that end is for you to deal with your own mortality.
00:59:05
Speaker
For you, I think probably, I'm surprised I didn't say this earlier, like the most important thing for any of us to do is for us to deal with our own lives and deal with our own fears and to come to terms with the fact that our time is limited too.
00:59:19
Speaker
Because if you have grokked those things in your own life, your affect will be different.
00:59:25
Speaker
You'll be more able to sit with patients who are themselves in that zone.
00:59:29
Speaker
So I think that's actually the most important anything that any of us can do.
00:59:33
Speaker
So Man's Search for Meaning is a good book to help you get there.
00:59:38
Speaker
Michael Carney is spelled K-E-A-R-N-E-Y.
00:59:42
Speaker
He's an Irish palliative care doc and an author.
00:59:46
Speaker
He's an amazing dude.
00:59:47
Speaker
He now works in Santa Barbara.
00:59:49
Speaker
I happened to have gotten lucky enough to work with him.
00:59:52
Speaker
He's also, he's written several books.
00:59:54
Speaker
I like Mortally Wounded, and that kind of gets us back into this sort of shared human thing of being mortals ourselves.
01:00:04
Speaker
I think Mortally Wounded is a wonderful read for your listeners.
01:00:07
Speaker
And then I think any of the existentialists, Kierkegaard, Heidegger in particular, write about subjects, matter of mortality very nicely.
01:00:19
Speaker
Mortally Wounded by Atul Gawande.
01:00:22
Speaker
And then I think the last thing I'll mention is if you're particularly interested from a sort of social science point of view, the cultural anthropologist Ernest Becker's book, The Denial of Death,
01:00:34
Speaker
from I think 1974 is a fascinating read.
01:00:38
Speaker
Not an easy one though.
01:00:40
Speaker
Be warned, right?
01:00:42
Speaker
Not an easy one.
01:00:44
Speaker
That's right, but boy, is it fascinating.
01:00:46
Speaker
And it just, all these books will help explore, you know, this thing that to us as clinicians that can be so, the problem that sort of reductive science is that we reduce life to a heartbeat.
01:00:58
Speaker
And in fact, life's way more mysterious than that, way more interesting than that, way more subjective than that.
01:01:04
Speaker
So all these books will basically help you explore this really tricky terrain and expand it in your mind rather than overly reduce it.
01:01:13
Speaker
Absolutely.
01:01:13
Speaker
And I do think that there is, the reason why we always ask this question is that I think that innovation is usually taking ideas from other worlds and bringing it to the ICU.
01:01:25
Speaker
And clearly there's a lot to learn
01:01:27
Speaker
from what other people have thought in the past or looked at in different situations.
01:01:31
Speaker
And all these books, I think, have really exemplified this.
01:01:36
Speaker
I have not read any book from Michael Kearney, but definitely, I mean, Viktor Frankl and Anders Becker are books that I highly recommend.
01:01:43
Speaker
So we'll include that as well in the show notes.
01:01:47
Speaker
The second question, BJ, relates to what do you believe to be true in medicine or life that most other people don't believe?
01:02:00
Speaker
Oh, that's a good one.
01:02:01
Speaker
You know, I'm tempted to slightly cheekily answer that question by saying, I believe that we die.
01:02:10
Speaker
Because you can, especially you can get the feeling in an ICU setting that death is kind of optional or the death is some sort of a failing rather than the most normal thing that has ever been.
01:02:23
Speaker
So one answer to that question would be like, I happen to believe that we all actually die.
01:02:28
Speaker
And I like to treat my life accordingly.
01:02:31
Speaker
And I think that that's, that's very, very, very powerful.
01:02:34
Speaker
And I think it fits very well because most people, whether they believe or not or don't, that they will die, they don't act like they will the way they live.
01:02:42
Speaker
And I think that's the difference, right?
01:02:44
Speaker
You have recognized that and have really tried to live your life according to that.
01:02:50
Speaker
Well, you know, Sergio, that reminds me, man, this is so, there's so much you're talking about.
01:02:53
Speaker
Like you're, that's, that's,
01:02:56
Speaker
That's really, really important point.
01:02:58
Speaker
And just as you put it, and I guess I also, it's an excuse to also say to your listeners, you know, you can do everything right.
01:03:07
Speaker
You can say just the right words.
01:03:08
Speaker
You can put your hand on the shoulder at just the right moment.
01:03:12
Speaker
You know, you can frame everything just so.
01:03:15
Speaker
And death can still be just hard as hell.
01:03:20
Speaker
And, and the experience may just simply be, uh,
01:03:25
Speaker
a misery for a patient and their family, you know, no matter what you do.
01:03:29
Speaker
So one thing to just get across is like, yes, we all need to do our part.
01:03:34
Speaker
And part of doing our part is realizing that we can't control everything and, and, and, and families are still going to suffer and still struggle no matter what we do.
01:03:43
Speaker
And I, I think that's so important for us all to remember.
01:03:45
Speaker
So at the end of the day, we don't accidentally feel horrible for not working a miracle.
01:03:52
Speaker
And so that's the idea of this normalizing death is for ourselves, our own protection and our patient.
01:03:59
Speaker
But it's still going to be hard.
01:04:01
Speaker
And very often the problem is that patients and families, that people, ourselves included, we don't turn our attention to this fact of death until it's so late in the game.
01:04:12
Speaker
And then you realize, oh, shit, my time was.
01:04:15
Speaker
And if I really realized how precious time was, I would have spent it differently.
01:04:21
Speaker
And the risk is that because we don't pay attention to this part of reality, we get to the end of our lives, too late to realize just how precious it was in the first place, too late to appreciate it in ways that we could have, and then we're left with a steaming pile of regrets.
01:04:37
Speaker
And that's not something that you're necessarily gonna fix in the ICU.
01:04:40
Speaker
So just try to minimize your own regrets in your own life by turning your attention to death, and just remember that not everyone has done that homework
01:04:50
Speaker
And you may be bumping into misery at the end of life, but there's just nothing you can do about it.
01:04:55
Speaker
And I think that to that point, BJ, one of my mantras, I mean, if I call it a mantra, but a phrase that I think about very regularly is one that was coined by the Stoics, memento moron, which means that remember you will die.
01:05:12
Speaker
And I think it really guides you in terms of not only what you do,
01:05:16
Speaker
but the things that you give value to, is this really something that is important for me in the future or should I just let it slide?
01:05:23
Speaker
Right.
01:05:24
Speaker
Is this something that I want to spend my time with?
01:05:26
Speaker
And I think that it's a very powerful reminder.
01:05:29
Speaker
And I think it fits very well because most people act as if they're not going to die.
01:05:33
Speaker
And I think that's a problem.
01:05:36
Speaker
Amen.
01:05:37
Speaker
I think it's so true.
01:05:38
Speaker
And I, you know, Lester, you know, I think one of the secrets is, and it sounds like you've learned this secret, Sergio, is,
01:05:44
Speaker
A lot of times people will learn I do some hospice end of life work and say, gosh, isn't that just depressing?
01:05:49
Speaker
Aren't you just miserable all the time?
01:05:51
Speaker
Well, yeah, you know, it's hard.
01:05:52
Speaker
And yeah, it's your sorrow in there for sure.
01:05:57
Speaker
But for myself and most of my colleagues, thanks to our sort of inborn professional memento mori,
01:06:04
Speaker
you kind of find yourself with a sort of lightness and a joy in life because you are so appreciative of the moments you actually get to feel good and actually the moments you're free because you just don't take them for granted.
01:06:16
Speaker
So turning your attention in this direction as you're doing surgery and you're helping your listeners do, the payoff is huge for you personally and professionally.
01:06:25
Speaker
You're much more likely to see the beauty in life once you realize just how precious it is.
01:06:30
Speaker
And the last question is, what would you want every intensivist who's listening to us to know?
01:06:38
Speaker
Well, yeah, you know, I think we covered a lot today, Sergio.
01:06:44
Speaker
I guess I mentioned this one.
01:06:45
Speaker
I'll just – this is, I think – I will end on this reminder that, you know, in the ICU, you know how you divide, like, your node and how you present patients.
01:06:55
Speaker
You divide people up by organ system, et cetera.
01:06:59
Speaker
And again, this idea that an ICU is sort of the least natural place on the planet.
01:07:06
Speaker
And just reminding yourself, no matter how much time you spend in that environment yourself, no matter how normal the ICU has become to you, just remember that pathology and thinking about people by organ system, that these are conventions.
01:07:22
Speaker
These are not realities.
01:07:25
Speaker
These are little tricks that we use rhetorically and otherwise to help us students of life to, to, to grasp reality.
01:07:35
Speaker
They're there.
01:07:35
Speaker
So I guess the tip is don't confuse your conventions with the reality that the conventions are trying to help you digest.
01:07:48
Speaker
So don't forget to de pathologize your patient at the end of the day.
01:07:52
Speaker
Don't forget to,
01:07:54
Speaker
put them back together again once you've divvied them up by organ system.
01:07:59
Speaker
Don't confuse your conventions with the reality they're meant to help you understand.
01:08:05
Speaker
And I think that that's a great place to stop.
01:08:07
Speaker
I really appreciate your time, BJ.
01:08:09
Speaker
This was a fascinating discussion.
01:08:11
Speaker
Would love to have you back again.
01:08:12
Speaker
There's so much we can talk about.
01:08:14
Speaker
But again, I think this will be very helpful for our audience and for people working in the ICU.
01:08:18
Speaker
Thank you, thank you, thank you.
01:08:21
Speaker
Thank you, Sergio.
01:08:22
Speaker
I'm so glad you're doing this.
01:08:24
Speaker
I think we can all benefit from talking about the subject more and the work you guys do is so, well, pun intended, is so critical.
01:08:33
Speaker
So thanks for taking the time to care so much.
01:08:35
Speaker
I really appreciate it.
01:08:38
Speaker
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01:08:42
Speaker
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01:08:48
Speaker
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01:08:52
Speaker
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