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Name:
James Hallenbeck, MD, discusses palliative care in the final days of life.
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James Hallenbeck, MD, discusses palliative care in the final days of life.
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>> This is Christopher Muth, Fishbein Fellow and Medical Editing at JAMA and I'm interviewing Dr. James Hallenbeck, who wrote a chapter entitled, "Palliative Care in the Final Days of Life" in JAMAevidence, Care at the Close of Life. Thank you for joining us today, Dr. Hallenbeck. Can you please tell us about yourself? >> My pleasure. My name is Jim Hallenbeck and I'm the Associate Professor of Medicine at Stanford University School of Medicine in the Department of General Medicine and I'm also Associate Chief of Staff for Extended Care at the VA Palo Alto Healthcare System in Palo Alto, California.
>> Your chapter on palliative care focuses on providing care for patients who are actively dying. Can you please explain the term active dying for our listeners? >> Well, I'll try to. While some people die suddenly without warning, in fact most people will have a transition period of some hours to a day or so before they pass away. We can call this period active dying. Signs may include that the person is less responsive or confused, unable to speak or drink.
Often there's a change in the breathing pattern. Often, like a lack of a cough or a gurgling sound, the so-called death rattle or irregular breathing, as with Cheyne-Stokes respirations. The skin can become mottled, and the pulse weakened. While these signs are not infallible, they usually suggest that death will occur in a matter of hours to a day or so. Identifying active dying should prompt clinicians to review therapies and make any necessary adjustments. For example, stopping oral meds, but far more important, I think, is the notification of loved ones that time is precious in order to give them the opportunity to say or do whatever needs to be said or done.
>> So it sounds like these signs of active dying can give clinicians a sense of how much time a patient might have left. But having said that, I think still sometimes determining prognosis is difficult. So you can help us understand, how should physicians go about discussing prognosis with patients and their families, given that it's not always entirely clear exactly how much time someone might have left. >> Well, you're absolutely right about that. Prognosis, even at the end of life, can be very difficult.
It does depend to some degree, I would say, on the actual diagnosis. For example, in my experience, I'm often better at predicting accurately dying in patients with cancer. And most of the work that's been done in looking at prognostic accuracy toward the life in the last few days of life, has been around cancer, while other diseases or disorders such as cirrhosis are notoriously more difficult to prognosticate. However, given the inherent uncertainty in all prognosis, it's actually important to incorporate this uncertainty into the prognostication itself.
In other words, it's a mistake, I think, to see prognosis as something like target shooting. It's not about just how accurate you are, but it really is to see it, I think, as a process of communication. And this communication is at least as important as prognostic accuracy. Inviting questions or concerns and educating. And as we may talk a little bit more about coaching families in terms of what is happening and how they might participate. >> Given the difficulties inherent in prognostication, I imagine it's best to frame prognosis by giving a range of time rather than a precise number.
>> That's exactly right. You want to talk -- not going to say he's going to die today or tomorrow but to use ranges. So the ranges that we typically use will -- and this can go well before the last few days of life to months to years, days to months, hours to days or often, toward the very end, hours to minutes. >> Can you talk about some of the common and distressing symptoms that patients with life-limiting illnesses might experience towards the end of their lives and what steps can the clinicians take to ease some of these symptoms?
>> Well, most symptomatology at the end of life is actually quite similar to whatever symptoms the patient had preceding it. So in the majority of cases, there's a radical change toward the end of life, even though this is often what families, in particular, and patients, when they're clear thinking, fear. The good news is that with good symptom management, most symptoms such as pain typically do not worsen at the end of life. And this is a major fear that both patients and families have. So for example, if a patient has had his or her pain well controlled going into the last few days of life, it's extremely uncommon, as best we can tell, for that pain to accelerate or exacerbate toward the very end.
Now there are some changes that are relatively specific of people enter this phase of active dying. Most obviously, most patients are considerably weaker, they may be less responsive, and a dry mouth is an extraordinarily common symptom. In many cases, patients aren't really able to respond verbally to questions and this can cause great distress for family members who may fear the worst, as they imagine distress such as pain or shortness of breath, that the patient cannot communicate. Reassurance and education, for example, explaining that Cheyne-Stokes respirations are not bothersome, can really help with symptom management in such cases.
>> Okay, and then, obviously, use of medications to palliate symptoms comes into play as well. It obviously would depend on what type of symptom the patient is experiencing, but what are some of the most common medications that you find yourself using in palliative care? >> Well, since pain is very common in many disorders, not just cancer, we are often using opioids. We may use a variety of sedating medications if agitation is a concern. There also, with the so-called death rattle, which is really retained secretions in the respiratory system, we may use drying agents and cholinergic agents that will dry those secretions out.
Often that use of a drying agent such as glycopyrrolate, or atropine drops are commonly used, I have to admit, it may be sedating the patient a little bit, but it may be also treating the family, because as best we can tell, when people are retaining respiratory secretions, often the patients themselves are not bothered by those symptoms. But it can be incredibly distressing to family members. >> Okay, and I want to talk a little bit more about opioids. As you mentioned, they're commonly used for pain control and they can also be used to treat dyspnea near the end of life.
But they can also decrease respiratory drive. And my sense is that even in the lay public and also even some healthcare professionals feel that the line between using opioids to palliate symptoms and using them to hasten death is blurry at times. Can you tell us more about what the evidence shows us regarding opioids and palliation of symptoms and also suppression of respiratory drive? >> It's a very complicated question, but you're right. This is a great concern for good reasons for many people, including clinicians.
And I think there are a lot of misunderstandings about the effect of opioids on respiratory drive. Opioids absolutely can and indeed do suppress respiratory drive, but this effect is predominantly driven by the rate of rise of the opioid. The faster the dose increase, the greater the risk of suppression. Thus, with the opioid epidemic, for example, when we have drugs such as heroin, parenterally administered drugs, or fentanyl that have an incredibly lipophilic drugs rapid rate of rise, they can cause respiratory depression and cause death, unfortunately.
Fortunately, the effects of opioids, as best we can tell, on dyspnea, like pain, relate far more to the steady state effect of the opioids, not the rate of rise. Another misunderstanding, I think, is people thinking that the transient sedating effect of opioids, which is also related primarily to the rate of rise, is what is giving rise to dyspnea. We are fairly sure that these are not significant effects if opioids are used judiciously for dyspnea.
We know this because a number of studies have demonstrated significant relief of dyspnea with no affect on net or minute ventilation. Sedation, and unfortunately, the addictive potential of opioids are also strongly related to the rate of rise of opioids. Thus, in treating dyspnea with opioids, the key is to increase, if necessary, the dose slowly within ranges found to be generally safe. That can often be after peak effect has been obtained in the range of somewhere between 25 and 100% doubling of the dose.
It's also important to communicate clearly to other clinicians and family members, both what one's intent is and to titrate the dose against clear signs of distress. So rather than just say give opioids in some escalating fashion for signs of agitation, you might want to write the order saying dyspnea or pain or agitation as manifest by X, Y or Z, depending on the situation. It may bear mentioning that there's something called the last dose effect, and almost too obviously, everybody will have a last dose of something.
And this last dose may be a dose of an opioid, even if it's an entirely appropriate and indicated dose. In the article I wrote for JAMA, I suspect that may have been when it came up. Discussing this as a possibility, if there's any concern and reassuring other clinicians and family members one's intent is symptom relief, not hastening of death, can relieve a lot of unnecessary concern and angst about that. >> Yes, I agree. I think that's key, to be very clear about your intentions when you're prescribing any type of intervention for a palliation of symptoms.
>> Absolutely. >> Symptom management becomes more challenging, though, when patients are confused or non-verbal. What's the best approach to symptom management for patients who can't communicate their symptoms or their level of discomfort? >> This is an area where it really helps to have a lot of experience caring for dying people, as the clues to what might be happening can be very subtle. I guess my main advice would be to slow down, sit and really observe the patient for a while. For example, if a patient is calling out, does this represent a nonspecific periodic arousal such as a partial wakening from a dream, which is very common, or does it happen with a specific movement, suggesting perhaps pain?
I can remember, for example, a woman whose only hint to her agitation was her hand drifting toward her groin and a bladder scan revealed urinary retention. Her distress was alleviated with catheterization, which I think was a far better way to do it than with a benzodiazepine. >> Yes. In your chapter, you also talk about the process of pronouncing death. Can you describe the basics of this process for our listeners and then perhaps, more importantly, can you also talk about how physicians should interact with others that might be in the room, family members or friends, during this process?
>> Sure. I'd be glad to. And just as an editorial comment on this, it's still sad to me that often young doctors learn pronouncement from a person when you're a senior, and they rarely have an opportunity to observe people who have done this a number of times. And this is rarely taught still to this day, I believe, in medical school and residency. I think it's really important for clinicians, especially young clinicians, to understand that pronouncement is not a diagnostic dilemma. Death is usually a very easy diagnosis.
Rather, it's better to think of pronouncement as an important ritual, both for family members and often the clinicians themselves. If called to pronounce a person, one should inquire generally about the circumstances. If you don't know, is the family present, was the death expected those kinds of things. Before entering the room, the clinician may want to create his or her own small ritual. For me, it's a moment of mindfulness, taking a slow breath. The key is to try to become fully present when entering the room and leaving aside for just a little while any other concerns that one might have from the busy day.
If the family is present, first thing I do is try to look to see how they're handling things. Two most common reactions I tend to see are something I call waiting to exhale, and the other would be the family is overtly grieving. With waiting to exhale, the family seems to really need the ritual of pronouncement to acknowledge that the person is gone. When I listen with a stethoscope and feel for a pulse, really what I'm doing is feeling for a lack of pulse. It's a part of this important ritual.
About the only thing that can fool you is a prolonged period of Cheyne-Stokes respirations. If this is possible, then just observing for a while will resolve that. When finished with the ritual stethoscope or feeling for a pulse, then I acknowledge clearly to the family that the patient is gone in whatever way seems appropriate. I think it's also important to mention what not to do, and unfortunately, I think this still happens on occasion. Things like sternal rubs, or opening the eyes, which may be useful in trying, for example, to diagnose someone who might be in a coma, strike me as very inappropriate, and frankly, disrespectful to the deceased and can be very disturbing to the family.
So I would advise strongly against that. If a family is actively grieving, then I do not use the stethoscope usually but rather just join the circle. I put my hand gently on the person's chest, modeling really more my saying goodbye, than any formal pronouncement. And then there usually follows a moment that I think of as a, in a sense, a sacred silence in which all of us are really beyond words and just people standing, humbled before this mystery that is death.
This moment can be extremely difficult for families and clinicians, and there is a real temptation to fill up that space with verbiage. Clinicians may too quickly go on to inquire about autopsy donation, autopsies or tissue donation or explanation of what happened, and I've even seen families jump in too quickly to say, well, what are the next things that we have to do? So in coaching the family, I often find it important to just say just slow down, just for a minute and sit here with this for a second and be here with it.
>> How are topics such as autopsy, organ donation, and spiritual and cultural practices related to after-death care best broached with families? >> Well, I think if possible, it's best discussed actually prior to a person's death because at the time of death, people are extremely emotional. They may have conflicting feelings. I have to admit, though, that's easier said than done. It's not something that I would say as an overall medical culture we've really figured out how to do.
I think some of the challenges there have to do with who's really responsible. Patients may have strong preferences about they would like to do, particularly, for example, around organ donation. But then what happens if conflict come up later among family members? So it's a challenging topic in terms of things like autopsies and organ donations. And I think those technically medical aspects then often really do intersect at times in awkward ways with spiritual or cultural practices related to after-death care and I would say as a broad generalization that when people pass away that's obviously an incredibly important transition for family members within a cultural context.
And so we often see sort of a flourishing of spiritual and cultural practices at the time of death. It's wise, I think, to the extent in one can, to inquire about whatever special spiritual or cultural practices may be important to the family prior to the death so as to know how best to interact with that. Some of these are, I would say, generally well known in terms of beliefs about internment or cleansing of the body after death, but I would caution listeners not to make assumptions.
For example, just because someone appears to be of a similar race or ethnicity to assume that you share some commonality in terms of spiritual or cultural beliefs. So my advice would be to try to weave all of these in, if there is time to allow this, prior to death so that there are as few unanticipated surprises at the time of death. >> That makes a lot of sense. Can you talk a little bit about the role of physician follow-up with family members after one of their loved ones has passed away?
And then also even the importance of physicians taking care of themselves after the death of a patient. >> So I would say, as a part of our medical culture, it is not generally a clear expectation that a physician follow up with family members after a death. And oddly that presents us all, I think, with a special opportunity, such that if one has a special relationship with a patient and a family, if a physician goes out of his or her way to either send a note or to call, that is seen by many family members as something very, very special and very much valued.
And so I'd really encourage young clinicians and physicians to really think about that. For example, in our hospice unit, we have really formalized a process of sending a card to everyone who passes away within our unit. And then we also, in an interdisciplinary way, have people take turns, often a couple weeks after the person has person has passed way, to do a follow-up bereavement call. That's both, frankly, an exercise of respect and concern for the family, but it also allows us to do an assessment for the possibility of complex bereavement and any suggestion that we may need to give them any additional advice in terms of supportive counseling.
For the physicians, and I would include among with physicians, other clinicians, I really do think we need to do a better job as an overall medical culture in encouraging folks to take time off to really process their own feelings after a patient's death. Not all deaths are likely to hit us the same way. At times it may be because we had a particular investment in the patient. It may be that we have some regrets about some aspect of care that we're involved in.
But it may be something that's totally out of left field. It may be, for example, my mother passed away from Lewy Body Dementia, so if I'm taking care of someone who is dying of Lewy Body Dementia, in some ways that's a help because I think I understand the disorder a whole lot better. But it also hits me in a different way when in fact, the time comes and takes some practice to deal with that. So what advice I generally give is to try to first give physicians to give themselves permission to take that time out and to really be up front with that with their peers.
I think most people are quite understanding, if you say hey, listen, I just had a tough one, I need a little bit more time to process this. Or it may be to find either a peer or a mentor with whom you can relate to discuss any concerns. Am I reacting normally? Family members of physicians and other clinicians can help in this, but there's a part of this where sometimes physicians and other clinicians will say, you know, my wife or my husband, I'm really close to them, but they just don't get it.
And so really finding peers that can provide peer support is also extremely important, especially if it's a death that one finds particularly difficult. >> Thank you very much for those insights. Is there anything else you'd like to tell our listeners about palliative care in the final days of life? >> Well, just share one reflection since you're doing a series of podcasts on this. It was two to three years into the JAMA series on end of life that, as best I can tell, the editors of that series said, gee, well, maybe we really ought to have an article on the actual active dying, what we've talked about a little bit today.
And I think that's kind of remarkable. It's remarkable in the sense that if you think about the opposite, for example, birth. Would you really go two to three years before actually describing a process of giving birth? And I say that with the greatest respect and real friendship with the editors involved in this series. I think what it reflects is that I've often thought about death itself as something like a black hole.
That's a strong gravitational force on all of us that we can't actually see. And the closer we get to it, the stranger it becomes -- really quite mysterious. We're all eventually kind of sucked into it, that we talk around it and we study around it. We don't actually see into it. So where I'm going with this is that in an end-of-life series, we all have to be humble, I think, for death itself. There's a part of this and the closer we get to this event horizon of the black hole of death, the more mysterious it is.
I've been practicing in this area for over 20 years and I'm still really awed before the mystery of death. And while I have perhaps a bit more experience than other folks at this, I think it's incredibly important to be humble and to really appreciate the fundamental mystery of what we're dealing with here because death, after all, is a part of life. >> Thank you, Dr. Hallenbeck, for taking the time to speak with us. You've been listening to Chapter 23, "Palliative Care in the Final Days of Life" from JAMAevidence, Care at the Close of Life.
This is Christopher Muth, Fishbein Fellow and Medical Editing at JAMA with this JAMAevidence Podcast.
Segment:0 .
>> This is Christopher Muth, Fishbein Fellow and Medical Editing at JAMA and I'm interviewing Dr. James Hallenbeck, who wrote a chapter entitled, "Palliative Care in the Final Days of Life" in JAMAevidence, Care at the Close of Life. Thank you for joining us today, Dr. Hallenbeck. Can you please tell us about yourself? >> My pleasure. My name is Jim Hallenbeck and I'm the Associate Professor of Medicine at Stanford University School of Medicine in the Department of General Medicine and I'm also Associate Chief of Staff for Extended Care at the VA Palo Alto Healthcare System in Palo Alto, California.
>> Your chapter on palliative care focuses on providing care for patients who are actively dying. Can you please explain the term active dying for our listeners? >> Well, I'll try to. While some people die suddenly without warning, in fact most people will have a transition period of some hours to a day or so before they pass away. We can call this period active dying. Signs may include that the person is less responsive or confused, unable to speak or drink.
Often there's a change in the breathing pattern. Often, like a lack of a cough or a gurgling sound, the so-called death rattle or irregular breathing, as with Cheyne-Stokes respirations. The skin can become mottled, and the pulse weakened. While these signs are not infallible, they usually suggest that death will occur in a matter of hours to a day or so. Identifying active dying should prompt clinicians to review therapies and make any necessary adjustments. For example, stopping oral meds, but far more important, I think, is the notification of loved ones that time is precious in order to give them the opportunity to say or do whatever needs to be said or done.
>> So it sounds like these signs of active dying can give clinicians a sense of how much time a patient might have left. But having said that, I think still sometimes determining prognosis is difficult. So you can help us understand, how should physicians go about discussing prognosis with patients and their families, given that it's not always entirely clear exactly how much time someone might have left. >> Well, you're absolutely right about that. Prognosis, even at the end of life, can be very difficult.
It does depend to some degree, I would say, on the actual diagnosis. For example, in my experience, I'm often better at predicting accurately dying in patients with cancer. And most of the work that's been done in looking at prognostic accuracy toward the life in the last few days of life, has been around cancer, while other diseases or disorders such as cirrhosis are notoriously more difficult to prognosticate. However, given the inherent uncertainty in all prognosis, it's actually important to incorporate this uncertainty into the prognostication itself.
In other words, it's a mistake, I think, to see prognosis as something like target shooting. It's not about just how accurate you are, but it really is to see it, I think, as a process of communication. And this communication is at least as important as prognostic accuracy. Inviting questions or concerns and educating. And as we may talk a little bit more about coaching families in terms of what is happening and how they might participate. >> Given the difficulties inherent in prognostication, I imagine it's best to frame prognosis by giving a range of time rather than a precise number.
>> That's exactly right. You want to talk -- not going to say he's going to die today or tomorrow but to use ranges. So the ranges that we typically use will -- and this can go well before the last few days of life to months to years, days to months, hours to days or often, toward the very end, hours to minutes. >> Can you talk about some of the common and distressing symptoms that patients with life-limiting illnesses might experience towards the end of their lives and what steps can the clinicians take to ease some of these symptoms?
>> Well, most symptomatology at the end of life is actually quite similar to whatever symptoms the patient had preceding it. So in the majority of cases, there's a radical change toward the end of life, even though this is often what families, in particular, and patients, when they're clear thinking, fear. The good news is that with good symptom management, most symptoms such as pain typically do not worsen at the end of life. And this is a major fear that both patients and families have. So for example, if a patient has had his or her pain well controlled going into the last few days of life, it's extremely uncommon, as best we can tell, for that pain to accelerate or exacerbate toward the very end.
Now there are some changes that are relatively specific of people enter this phase of active dying. Most obviously, most patients are considerably weaker, they may be less responsive, and a dry mouth is an extraordinarily common symptom. In many cases, patients aren't really able to respond verbally to questions and this can cause great distress for family members who may fear the worst, as they imagine distress such as pain or shortness of breath, that the patient cannot communicate. Reassurance and education, for example, explaining that Cheyne-Stokes respirations are not bothersome, can really help with symptom management in such cases.
>> Okay, and then, obviously, use of medications to palliate symptoms comes into play as well. It obviously would depend on what type of symptom the patient is experiencing, but what are some of the most common medications that you find yourself using in palliative care? >> Well, since pain is very common in many disorders, not just cancer, we are often using opioids. We may use a variety of sedating medications if agitation is a concern. There also, with the so-called death rattle, which is really retained secretions in the respiratory system, we may use drying agents and cholinergic agents that will dry those secretions out.
Often that use of a drying agent such as glycopyrrolate, or atropine drops are commonly used, I have to admit, it may be sedating the patient a little bit, but it may be also treating the family, because as best we can tell, when people are retaining respiratory secretions, often the patients themselves are not bothered by those symptoms. But it can be incredibly distressing to family members. >> Okay, and I want to talk a little bit more about opioids. As you mentioned, they're commonly used for pain control and they can also be used to treat dyspnea near the end of life.
But they can also decrease respiratory drive. And my sense is that even in the lay public and also even some healthcare professionals feel that the line between using opioids to palliate symptoms and using them to hasten death is blurry at times. Can you tell us more about what the evidence shows us regarding opioids and palliation of symptoms and also suppression of respiratory drive? >> It's a very complicated question, but you're right. This is a great concern for good reasons for many people, including clinicians.
And I think there are a lot of misunderstandings about the effect of opioids on respiratory drive. Opioids absolutely can and indeed do suppress respiratory drive, but this effect is predominantly driven by the rate of rise of the opioid. The faster the dose increase, the greater the risk of suppression. Thus, with the opioid epidemic, for example, when we have drugs such as heroin, parenterally administered drugs, or fentanyl that have an incredibly lipophilic drugs rapid rate of rise, they can cause respiratory depression and cause death, unfortunately.
Fortunately, the effects of opioids, as best we can tell, on dyspnea, like pain, relate far more to the steady state effect of the opioids, not the rate of rise. Another misunderstanding, I think, is people thinking that the transient sedating effect of opioids, which is also related primarily to the rate of rise, is what is giving rise to dyspnea. We are fairly sure that these are not significant effects if opioids are used judiciously for dyspnea.
We know this because a number of studies have demonstrated significant relief of dyspnea with no affect on net or minute ventilation. Sedation, and unfortunately, the addictive potential of opioids are also strongly related to the rate of rise of opioids. Thus, in treating dyspnea with opioids, the key is to increase, if necessary, the dose slowly within ranges found to be generally safe. That can often be after peak effect has been obtained in the range of somewhere between 25 and 100% doubling of the dose.
It's also important to communicate clearly to other clinicians and family members, both what one's intent is and to titrate the dose against clear signs of distress. So rather than just say give opioids in some escalating fashion for signs of agitation, you might want to write the order saying dyspnea or pain or agitation as manifest by X, Y or Z, depending on the situation. It may bear mentioning that there's something called the last dose effect, and almost too obviously, everybody will have a last dose of something.
And this last dose may be a dose of an opioid, even if it's an entirely appropriate and indicated dose. In the article I wrote for JAMA, I suspect that may have been when it came up. Discussing this as a possibility, if there's any concern and reassuring other clinicians and family members one's intent is symptom relief, not hastening of death, can relieve a lot of unnecessary concern and angst about that. >> Yes, I agree. I think that's key, to be very clear about your intentions when you're prescribing any type of intervention for a palliation of symptoms.
>> Absolutely. >> Symptom management becomes more challenging, though, when patients are confused or non-verbal. What's the best approach to symptom management for patients who can't communicate their symptoms or their level of discomfort? >> This is an area where it really helps to have a lot of experience caring for dying people, as the clues to what might be happening can be very subtle. I guess my main advice would be to slow down, sit and really observe the patient for a while. For example, if a patient is calling out, does this represent a nonspecific periodic arousal such as a partial wakening from a dream, which is very common, or does it happen with a specific movement, suggesting perhaps pain?
I can remember, for example, a woman whose only hint to her agitation was her hand drifting toward her groin and a bladder scan revealed urinary retention. Her distress was alleviated with catheterization, which I think was a far better way to do it than with a benzodiazepine. >> Yes. In your chapter, you also talk about the process of pronouncing death. Can you describe the basics of this process for our listeners and then perhaps, more importantly, can you also talk about how physicians should interact with others that might be in the room, family members or friends, during this process?
>> Sure. I'd be glad to. And just as an editorial comment on this, it's still sad to me that often young doctors learn pronouncement from a person when you're a senior, and they rarely have an opportunity to observe people who have done this a number of times. And this is rarely taught still to this day, I believe, in medical school and residency. I think it's really important for clinicians, especially young clinicians, to understand that pronouncement is not a diagnostic dilemma. Death is usually a very easy diagnosis.
Rather, it's better to think of pronouncement as an important ritual, both for family members and often the clinicians themselves. If called to pronounce a person, one should inquire generally about the circumstances. If you don't know, is the family present, was the death expected those kinds of things. Before entering the room, the clinician may want to create his or her own small ritual. For me, it's a moment of mindfulness, taking a slow breath. The key is to try to become fully present when entering the room and leaving aside for just a little while any other concerns that one might have from the busy day.
If the family is present, first thing I do is try to look to see how they're handling things. Two most common reactions I tend to see are something I call waiting to exhale, and the other would be the family is overtly grieving. With waiting to exhale, the family seems to really need the ritual of pronouncement to acknowledge that the person is gone. When I listen with a stethoscope and feel for a pulse, really what I'm doing is feeling for a lack of pulse. It's a part of this important ritual.
About the only thing that can fool you is a prolonged period of Cheyne-Stokes respirations. If this is possible, then just observing for a while will resolve that. When finished with the ritual stethoscope or feeling for a pulse, then I acknowledge clearly to the family that the patient is gone in whatever way seems appropriate. I think it's also important to mention what not to do, and unfortunately, I think this still happens on occasion. Things like sternal rubs, or opening the eyes, which may be useful in trying, for example, to diagnose someone who might be in a coma, strike me as very inappropriate, and frankly, disrespectful to the deceased and can be very disturbing to the family.
So I would advise strongly against that. If a family is actively grieving, then I do not use the stethoscope usually but rather just join the circle. I put my hand gently on the person's chest, modeling really more my saying goodbye, than any formal pronouncement. And then there usually follows a moment that I think of as a, in a sense, a sacred silence in which all of us are really beyond words and just people standing, humbled before this mystery that is death.
This moment can be extremely difficult for families and clinicians, and there is a real temptation to fill up that space with verbiage. Clinicians may too quickly go on to inquire about autopsy donation, autopsies or tissue donation or explanation of what happened, and I've even seen families jump in too quickly to say, well, what are the next things that we have to do? So in coaching the family, I often find it important to just say just slow down, just for a minute and sit here with this for a second and be here with it.
>> How are topics such as autopsy, organ donation, and spiritual and cultural practices related to after-death care best broached with families? >> Well, I think if possible, it's best discussed actually prior to a person's death because at the time of death, people are extremely emotional. They may have conflicting feelings. I have to admit, though, that's easier said than done. It's not something that I would say as an overall medical culture we've really figured out how to do.
I think some of the challenges there have to do with who's really responsible. Patients may have strong preferences about they would like to do, particularly, for example, around organ donation. But then what happens if conflict come up later among family members? So it's a challenging topic in terms of things like autopsies and organ donations. And I think those technically medical aspects then often really do intersect at times in awkward ways with spiritual or cultural practices related to after-death care and I would say as a broad generalization that when people pass away that's obviously an incredibly important transition for family members within a cultural context.
And so we often see sort of a flourishing of spiritual and cultural practices at the time of death. It's wise, I think, to the extent in one can, to inquire about whatever special spiritual or cultural practices may be important to the family prior to the death so as to know how best to interact with that. Some of these are, I would say, generally well known in terms of beliefs about internment or cleansing of the body after death, but I would caution listeners not to make assumptions.
For example, just because someone appears to be of a similar race or ethnicity to assume that you share some commonality in terms of spiritual or cultural beliefs. So my advice would be to try to weave all of these in, if there is time to allow this, prior to death so that there are as few unanticipated surprises at the time of death. >> That makes a lot of sense. Can you talk a little bit about the role of physician follow-up with family members after one of their loved ones has passed away?
And then also even the importance of physicians taking care of themselves after the death of a patient. >> So I would say, as a part of our medical culture, it is not generally a clear expectation that a physician follow up with family members after a death. And oddly that presents us all, I think, with a special opportunity, such that if one has a special relationship with a patient and a family, if a physician goes out of his or her way to either send a note or to call, that is seen by many family members as something very, very special and very much valued.
And so I'd really encourage young clinicians and physicians to really think about that. For example, in our hospice unit, we have really formalized a process of sending a card to everyone who passes away within our unit. And then we also, in an interdisciplinary way, have people take turns, often a couple weeks after the person has person has passed way, to do a follow-up bereavement call. That's both, frankly, an exercise of respect and concern for the family, but it also allows us to do an assessment for the possibility of complex bereavement and any suggestion that we may need to give them any additional advice in terms of supportive counseling.
For the physicians, and I would include among with physicians, other clinicians, I really do think we need to do a better job as an overall medical culture in encouraging folks to take time off to really process their own feelings after a patient's death. Not all deaths are likely to hit us the same way. At times it may be because we had a particular investment in the patient. It may be that we have some regrets about some aspect of care that we're involved in.
But it may be something that's totally out of left field. It may be, for example, my mother passed away from Lewy Body Dementia, so if I'm taking care of someone who is dying of Lewy Body Dementia, in some ways that's a help because I think I understand the disorder a whole lot better. But it also hits me in a different way when in fact, the time comes and takes some practice to deal with that. So what advice I generally give is to try to first give physicians to give themselves permission to take that time out and to really be up front with that with their peers.
I think most people are quite understanding, if you say hey, listen, I just had a tough one, I need a little bit more time to process this. Or it may be to find either a peer or a mentor with whom you can relate to discuss any concerns. Am I reacting normally? Family members of physicians and other clinicians can help in this, but there's a part of this where sometimes physicians and other clinicians will say, you know, my wife or my husband, I'm really close to them, but they just don't get it.
And so really finding peers that can provide peer support is also extremely important, especially if it's a death that one finds particularly difficult. >> Thank you very much for those insights. Is there anything else you'd like to tell our listeners about palliative care in the final days of life? >> Well, just share one reflection since you're doing a series of podcasts on this. It was two to three years into the JAMA series on end of life that, as best I can tell, the editors of that series said, gee, well, maybe we really ought to have an article on the actual active dying, what we've talked about a little bit today.
And I think that's kind of remarkable. It's remarkable in the sense that if you think about the opposite, for example, birth. Would you really go two to three years before actually describing a process of giving birth? And I say that with the greatest respect and real friendship with the editors involved in this series. I think what it reflects is that I've often thought about death itself as something like a black hole.
That's a strong gravitational force on all of us that we can't actually see. And the closer we get to it, the stranger it becomes -- really quite mysterious. We're all eventually kind of sucked into it, that we talk around it and we study around it. We don't actually see into it. So where I'm going with this is that in an end-of-life series, we all have to be humble, I think, for death itself. There's a part of this and the closer we get to this event horizon of the black hole of death, the more mysterious it is.
I've been practicing in this area for over 20 years and I'm still really awed before the mystery of death. And while I have perhaps a bit more experience than other folks at this, I think it's incredibly important to be humble and to really appreciate the fundamental mystery of what we're dealing with here because death, after all, is a part of life. >> Thank you, Dr. Hallenbeck, for taking the time to speak with us. You've been listening to Chapter 23, "Palliative Care in the Final Days of Life" from JAMAevidence, Care at the Close of Life.
This is Christopher Muth, Fishbein Fellow and Medical Editing at JAMA with this JAMAevidence Podcast.
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