Cadmore media player playing audio Psychological Considerations, Growth, and Transcendence at the End Of Life: Interview With Susan D. Block, MD
Audio Player
Accessibility
Using forms mode, you can utilize keyboard shortcuts to make usability more efficient.
Space bar will play and pause the audio. Pressing escape will close all displays and pressing it again will jump to the end of the player.
You can press A to open the Keyboard Shortcut Dialog which also provides an audio description of the player and all of its features.
Transcript
Result Count
of
Search
Segments
Result Count
of
Search
Name:
Psychological Considerations, Growth, and Transcendence at the End Of Life: Interview With Susan D. Block, MD
Description:
Psychological Considerations, Growth, and Transcendence at the End Of Life: Interview With Susan D. Block, MD
Thumbnail URL:
https://cadmoremediastorage.blob.core.windows.net/ef425a79-35ee-46a4-a916-a43674149426/thumbnails/ef425a79-35ee-46a4-a916-a43674149426.jpg?sv=2019-02-02&sr=c&sig=%2BYjwiwGhS4BkXMnREXw9mXwUfK1LVhjNYa0TgBcllIs%3D&st=2024-12-21T17%3A09%3A20Z&se=2024-12-21T21%3A14%3A20Z&sp=r
Duration:
T00H24M57S
Embed URL:
https://stream.cadmore.media/player/ef425a79-35ee-46a4-a916-a43674149426
Content URL:
https://cadmoreoriginalmedia.blob.core.windows.net/ef425a79-35ee-46a4-a916-a43674149426/14842691.mp3?sv=2019-02-02&sr=c&sig=l8ONxusm%2B0RNAAiUW5zwmfpD%2FHwEDGPUqYBv8JvHl8E%3D&st=2024-12-21T17%3A09%3A20Z&se=2024-12-21T19%3A14%3A20Z&sp=r
Upload Date:
2022-02-28T00:00:00.0000000
Transcript:
Language: EN.
Segment:0 .
>> This is Christopher Muth, Associate Editor at JAMA, and I'm interviewing Dr. Susan Block, who wrote a chapter entitled "Psychological Considerations, Growth, and Transcendence at the End of Life The Art of the Possible" in JAMAevidence, Care at the Close of Life. Thank you for joining us today, Dr. Block. Can you please tell us about yourself? >> Sure. I'm a Professor of Psychiatry and Medicine at Harvard Medical School, the Founding Chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Brigham And Women's Hospital, the Founding Director of the Harvard Medical School Center for Palliative Care, and the Director of the Serious Illness Care Program at Ariadne Labs.
>> In the chapter that you wrote, you highlighted the various challenges that patients face at the end of life, including the physical, but also the psychological, social, and perhaps spiritual challenges. In my experience, physicians tend to focus on managing the physical symptoms at the end of life, but the other domains can be a little bit more difficult to talk about with patients, let alone help patients in those domains. What do you think are some of the reasons for this? >> Well, I think that we in medicine are trained to focus on the physical aspects of suffering, and to approach them through a process of diagnosis, and then development of treatment plans appropriate for a particular diagnosis.
And we don't have the kind of education that I think clinicians need to be able to communicate about many of the deeper issues that people who have serious illnesses are struggling with. We don't know the questions to ask. We may be uncomfortable with the answers we receive. We haven't been trained in what can be psychologically helpful and meaningful to patients in these situations. We're afraid of asking questions that will elicit problems that we don't know how to solve, and we're just, frankly, more comfortable on the physical turf.
I think, especially spirituality is an uncomfortable topic for many clinicians, and there's a concern that we may be in some way offensive in something we say, that because of religious or spiritual difference, we may not be able to be helpful or may not be able to understand. And so, there are those kinds of reluctances. I think also, because of the intensive time pressures on most physicians who are in practice now, there's a perception that we don't have time to focus on the quote "soft stuff" unquote.
And yet, if you really reflect on where people live and what experience is like, much of our own experience of being alive or being ill, is a psychological experience. And we're worried, we're scared, we're concerned about our families, we're anticipating suffering, we're worried about whether we have money to provide for our healthcare needs. There are a whole panoply of concerns that we have. We might be concerned about the afterlife or whether we've done something bad in the past that may make us subject to punishment after we're gone.
And there are so many things that go through people's minds that we kind of ignore in medicine, even though they may be, and I think usually are, the central part of an individual's experience with a serious illness. >> Yes, I agree. I think the physical evaluation is something that most physicians are comfortable with, but in your chapter, you also mention the importance of conducting a comprehensive psychosocial and spiritual assessment when you're developing treatment plans for patients at the end of life.
What kinds of questions or how do you go about sort of conducting that psychosocial and spiritual assessment? >> I ask very simple questions in a pretty down to earth way, or at least I try to, and they're questions like, "How are you holding up with your illness?" You know, "How do you think your family is doing?" "What are your fears and worries about what might be ahead with your illness?" "What's your understanding of your illness?" "How does your faith fit into your way of coping with your illness, if you have a faith?" "Are there moments where you struggle with, you know, doubts about your own faith?" if this is somebody who has a strong spiritual belief system.
You know, I spent a lot of time asking people about their goals. "What are the things that you find matter most to you at this point in your life?" "What kinds of ways do you want me to guide your treatment to be able to help you meet those goals or address the things that are most important to you?" I also think people with serious illness want to and need to talk about their future with their illness, especially as they become sicker. And so, questions about, "How much are you willing to go through for a chance at having more time?" "What quality of life would be acceptable and unacceptable to you if your illness were to progress?" "What kind of involvements do you want your family to have in decisions about your medical care?" "What are the most important goals as you think about your life going forward from here, especially in the context of your illness?" These are all questions that I think elicit the kinds of issues that are on people's minds when they're living with a life-threatening illness.
>> Okay. I also want to talk about people's psychological responses at the end of life or to the end of life. Obviously, every person's response to his or her mortality is going to be different and might change over time, but are there any sort of general types of responses or ways of coping that people tend to have near the end of life? >> Well, you know, I think as people approach the end of life, there's often more physical symptoms. There's more physical distress, and there's often more anxiety about what's going on in the moment and fear about what's ahead.
So, I think that here are some, you know, very challenging psychological states that people are contending with as they get sicker, and what's really remarkable to me is that most people do okay in managing those difficult physical and psychological states. If you look at the literature, only about 25% of patients develop clinical depression in the setting of a serious and advancing illness approaching the end of life.
I think there's a broad assumption that, oh, if I were dying, I would be depressed or anyone would be depressed in that state, and the reality is that most people are not. They're grieving. They're sorrowful. They're sad. They may be anxious, but most people are able to also get pleasure from the things that have always been meaningful to them, if only in small doses because of fatigue or other symptoms. They're able to interact with the people they care about and able to find a sense of sort of hope and purpose in kind of carrying on.
I think one of the hardest things for many people as they get sicker is a kind of loss of the capacity to contribute, and one of the most important ways we can be helpful to people with serious illness is to offer them ways of continuing to contribute, either through sharing wisdom or sharing stories or providing forms of teaching about things that have been meaningful and important to them.
And I think that's a very important way that we can support people who are approaching the end of life. I think another challenge for many patients is concerns about dependency. Most people fight pretty fiercely to grow up and become pretty independent, and then to have to surrender that is, I think, a major internal challenge for people. Similarly, control is something that people struggle with as they get sicker. There are more and more things out of their control, and that's a challenge for people.
I think the biggest feelings for people are feelings of loss and grief about losing the people who are most important to them, losing the future, not knowing how things will turn out. And those are all normal and painful experiences, and most people, remarkably, given the sort of psychological challenges that they face when they're seriously ill, most people find ways of tolerating those difficult emotions, especially when they have good support from people around them.
>> Now, you mentioned grief and the grieving process, and it's a natural response. There are some constructs that are used to help people understand the grieving process. I know one I think is the Kubler-Ross model, the five stages of grief. >> Yes. >> Is that something that you use in your own care for patients? I guess I've sort of found it to be a little bit abstract, but I'm wondering if there's an understanding of the five stages of grief, sort of how does that help with patient care, for example?
>> I think the literature shows that the five stages of grief are real, but also that they are not, you know, necessarily linear and sequential as Dr. Kubler-Ross described, and that people have a complex of different feelings as they're dying. And the five stages are denial, anger, bargaining, despair, and acceptance. In the patients that I've seen, I usually see a mixture of multiple stages at any one time, with maybe one or two of them being more prominent than some of the other ones.
But that human beings need denial to live. If we were constantly confronting the worst possible things that could happen to us, we wouldn't be able to get out of bed in the morning. And so, denial has a function in allowing us to live in the face of hard things. And anger is something that, for many people, is kind of mobilizing, and you know, the idea about being a fighter is a kind of angry stance. And yet, I think in our culture, especially, we think of that as being a kind of noble stance to take.
I think bargaining refers to this idea about if I'm only really good, if I do everything I can in my power to follow the doctor's orders, to do everything that I'm told to do, to live a healthy life, that I'm going to be okay. And so, you see people trying to live that way. I think that the depression or despair is an acknowledgement of the feelings of loss that everybody is feeling as they feel their old lives slipping away and have to adjust to new realities that they don't want and that nobody would want, as they feel their lives kind of diminishing.
And I think acceptance is something that most people have at least in some measure that has to do with some recognition that this is the way of the world. This happens to all of us. We're all vulnerable people who suffer in our lives at different times. And people hold these different emotions, you know, in different relationships with each other, and I think there is a progression over time towards more acceptance in many, many, many patients.
There are people who never get to that point and who are fighting all the way to the end. The problem with that stance is that it gets very hard to maintain as people get really sick and as the evidence of their deterioration becomes stronger and stronger. And so, I think that the stages have a value because they allow a clinician to think about the many different emotions that people are going through, and I think the construct of trying to move people toward some form of peacefulness or acceptance of their illness allows for more of a calmness for the patient, but also it allows family members to be more settled and to be able to cope with the loss in a less anguished way.
>> You also, you mentioned earlier the distinction between grief, which is a normal response to death, versus depression, and you mentioned a certain percentage of people do develop depression. Can you talk a little bit more about how clinicians can maybe try to sort through the differences between grief and depression and then what a clinician should do if they suspect their patient actually is suffering from depression? >> I think the big differences between grief and depression have to do with the intensity and the ability of the feeling to be affected by circumstances in the moment.
Let me start with grief. In general, grief tends to wax and wane. It becomes very intense in ways, and then it often recedes. Something nice happens, and the person is able to feel a sense of joy and pleasure and enjoyment. Somebody with depression isn't able to feel pleasure at all in those circumstances, and the feeling of a low mood in depression is much more autonomous and unresponsive to nice things that might happen in the person's setting.
People with grief may have moments of hopelessness, but it's not persistent. In depression, it tends to be much more persistent. There are also feelings of helplessness and worthlessness and guilt that go along with depression, which generally are not as intense in people with grief. And people who are grieving, they may wish that death would come soon, or they may feel like they're tired and they're ready for the end.
People with depression are more likely to think about doing active measures to end their lives prematurely and have what we call suicidal thoughts. And in general, people with grief may have moments of very intense low mood, but they're not present all the time. Whereas, in depression, they tend to have this constant, unremitting quality. In spite of the fact that people think that it's normal to be depressed when you're dying, it isn't, and there are treatments that can be extremely effective, and for people who are very ill, probably the most effective and well-tolerated treatments are psychostimulants such as methylphenidate or dextroamphetamine.
Those drugs have a very positive affect on mood. They often provide the person with a little bit of energy which allows them to be a little more engaged with the world and have the pleasures that the world can bring in their lives. It tends to improve thinking that may be slowed by some of the other medicines that they may be taking for other symptoms that they're having. It may improve appetite, and it may improve pain control.
And so, these agents, these psychostimulants, can be extremely effective in multiple different ways, not just for mood but for other symptoms that are pretty common in patients with serious illness. Other antidepressants, such as the selective serotonin reuptake inhibitors are also effective, although they have a much longer duration before they take effect than psychostimulants which can take effect within hours or days. And so, for people who have a time limited horizon, psychostimulants can make them feel better in one or two days.
Whereas most SSRIs can take weeks before they have an effect. And that's why in general for people with limited time horizons, many clinicians tend to prefer the psychostimulants. >> Another common psychiatric disorder at the end of life is delirium. Can you talk a little bit about how common that is and what it typically presents like? >> Yeah. Delirium is a very common syndrome for people at the very, very end of life. About 70% of people who are dying have some form of delirium during that process.
It's usually multifactorial in its base origin, and there may be parts of the delirium that are reversable and parts that are irreversible. For example, somebody may have kind of brain failure related to low oxygenation or other factors, and that part is probably not reversable, but if they have some delirium related to being on opioid medications, that can be reversable. And so, I think the first strategy is to look for reversable causes, and if there are reversable causes, to do what can be done to kind of reverse them.
Psychoactive drugs, sedatives, hypnotics, and particularly opioids are among the most common drugs that contribute to delirium. Being in a strange environment, not having familiar people or objects around can contribute, and simple things like warm milk, massage, and so on. Pictures of familiar people, all those kinds of things have been shown to be helpful in treating people with delirium. And the important thing about delirium is it can be a very terrifying state for the patient as well as for the family and can be quite traumatizing.
And if you ask people who've been through delirium what the experience was like, they often can tell you afterwards that it was just horrifying. There's a lot of uncertainty right now about what the best treatment for delirium is, and there have been some recent trials that show that the usual medications, which are antipsychotic medications, may be associated with premature death, particularly in very sick patients. But there are other studies that show that drugs like benzodiazepines which are commonly used to treat delirium make the delirium worse.
So, I think that there is a lot of uncertainty right now about what the best approach is to treating delirium. The one area of consensus is around the uses of nonpharmacologic measures, like massage, you know, keeping lights on, pictures of loved ones around, these kind of environmental manipulations, that can be somewhat helpful. But if people are flagrantly and extremely delirious, I think you have to treat them with medications, and I think that even though there may be some risk of an antipsychotic medication increasing by a small amount, the risk of death in someone with a delirium at the very end of life, I think it's probably worth taking with the full understanding of the patient's family, since they probably won't be able to speak for themselves, as a way of just reducing the kind of terror that can often come with delirium.
There have been other studies that show that sometimes adding low doses of the benzodiazepine to an antipsychotic may be another kind of effective way of minimizing the adverse effects of both drugs on the patient who has a delirium at the very end of life. >> Another interesting idea I found in the chapter, you know, death, I think is often considered something scary and negative in our society, but in your chapter, towards the end, you talk about the idea of a good death. What do you mean by that, exactly?
>> You know, at some level, I'm not sure I really believe in the idea of a good death, but there are certainly better deaths and worse deaths. And there are patients for whom death is better than the alternative, and you know, I think about my dad, for example, who, in his late 80s, with ten years living as a partial quadriplegic and having increasing symptoms that meant that he would have to go to a nursing home, basically decided that he didn't want any more treatment, that he was done.
He'd rather be home and end his life in his own home, in his own bed, with his children and his dog present, than to have to go to a nursing home. And so, he decided to stop his treatment, to come home from the hospital, and to receive care that would just allow him to be peaceful and comfortable at home and to end his life in that situation. All things considered, he had a pretty beautiful death. He was comfortable. He was at peace. He said goodbye.
His dog was lying by the bed. His children were surrounding him. There was beautiful music playing, and he felt that he had some control and that this ending at that time was much better than something that would happen later after a time in a nursing home, which was a place that he never, ever, ever wanted to be. So, I think that's an example of, you know, a better death, and it was a beautiful death. It wasn't a good death from the point of view of his family because we miss him.
But it was still a pretty beautiful death. >> And in terms of relationships with friends and family, sometimes, I think knowing that the end of life is near can bring people closer together. People maybe will move in with a family member or something like that, but sometimes, I think it can also be quite stressful in terms of relationships with friends and family, especially if there are new living situations or new financial costs related to medical care.
Is there anything that clinicians can do to help patients maintain or develop these relationships with family and friends in a positive way towards the end of life? >> Well, I think we need to remember that more than 1/3 of patients lose all or most of their savings in the course of dealing with a serious, life-threatening illness and that that is a huge stressor for many families. That the role of caregiver as a spouse or a daughter or sometimes a son is, as you say, a very stressful, lonely, isolating, and depressing role, especially when it goes on for many years.
And the most important thing we as clinicians to do is also an incredibly simple thing, and yet we rarely do it. And that is to ask the family member, "How are you holding up? What's it like to take care of your husband day after day when he's this sick?" and just ask and acknowledge and give them some kind of recognition for what they're doing. "You're doing an amazing job. It takes a lot of strength to be able to hang in there day after day and do the kind of caregiving that you do." Those small comments, that take almost no time, are so deeply meaningful, helpful, valuable to caregivers that we really need to learn that and do that on a regular basis.
>> And do you have any advice for how clinicians can engage patients in discussion about their own lives, sort of finding meaning in their life as they reflect back on their legacy as they're approaching death? >> Well, there are lots of different kind of approaches that have been tried, but I think questions and exploration, like, "What are you most proud of about your life?" "Who've been the critical people who've had the most influence on you as a human being?" "What would you like people to remember about you?" "What would you like your legacy to be?" "What kinds of wisdom have you accumulated over your life that you'd like to share with other people?" "What advice would you give to your children or to your grandchildren?" I think those kinds of questions can give space for the person to reflect on their life and to be able, also, to share and pass on some of what they've learned in a way that could be meaningful to them as well as to other people.
>> Thank you, Dr. Block, for taking the time to speak with us. You've been listening to a discussion of chapter 24, "Psychological Considerations, Growth, and Transcendence at the End of Life The Art of the Possible" from JAMAevidence of Care at the Close of Life. This is Christopher Muth, Associate Editor of JAMA, with this JAMAevidence podcast.
Segment:0 .
>> This is Christopher Muth, Associate Editor at JAMA, and I'm interviewing Dr. Susan Block, who wrote a chapter entitled "Psychological Considerations, Growth, and Transcendence at the End of Life The Art of the Possible" in JAMAevidence, Care at the Close of Life. Thank you for joining us today, Dr. Block. Can you please tell us about yourself? >> Sure. I'm a Professor of Psychiatry and Medicine at Harvard Medical School, the Founding Chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Brigham And Women's Hospital, the Founding Director of the Harvard Medical School Center for Palliative Care, and the Director of the Serious Illness Care Program at Ariadne Labs.
>> In the chapter that you wrote, you highlighted the various challenges that patients face at the end of life, including the physical, but also the psychological, social, and perhaps spiritual challenges. In my experience, physicians tend to focus on managing the physical symptoms at the end of life, but the other domains can be a little bit more difficult to talk about with patients, let alone help patients in those domains. What do you think are some of the reasons for this? >> Well, I think that we in medicine are trained to focus on the physical aspects of suffering, and to approach them through a process of diagnosis, and then development of treatment plans appropriate for a particular diagnosis.
And we don't have the kind of education that I think clinicians need to be able to communicate about many of the deeper issues that people who have serious illnesses are struggling with. We don't know the questions to ask. We may be uncomfortable with the answers we receive. We haven't been trained in what can be psychologically helpful and meaningful to patients in these situations. We're afraid of asking questions that will elicit problems that we don't know how to solve, and we're just, frankly, more comfortable on the physical turf.
I think, especially spirituality is an uncomfortable topic for many clinicians, and there's a concern that we may be in some way offensive in something we say, that because of religious or spiritual difference, we may not be able to be helpful or may not be able to understand. And so, there are those kinds of reluctances. I think also, because of the intensive time pressures on most physicians who are in practice now, there's a perception that we don't have time to focus on the quote "soft stuff" unquote.
And yet, if you really reflect on where people live and what experience is like, much of our own experience of being alive or being ill, is a psychological experience. And we're worried, we're scared, we're concerned about our families, we're anticipating suffering, we're worried about whether we have money to provide for our healthcare needs. There are a whole panoply of concerns that we have. We might be concerned about the afterlife or whether we've done something bad in the past that may make us subject to punishment after we're gone.
And there are so many things that go through people's minds that we kind of ignore in medicine, even though they may be, and I think usually are, the central part of an individual's experience with a serious illness. >> Yes, I agree. I think the physical evaluation is something that most physicians are comfortable with, but in your chapter, you also mention the importance of conducting a comprehensive psychosocial and spiritual assessment when you're developing treatment plans for patients at the end of life.
What kinds of questions or how do you go about sort of conducting that psychosocial and spiritual assessment? >> I ask very simple questions in a pretty down to earth way, or at least I try to, and they're questions like, "How are you holding up with your illness?" You know, "How do you think your family is doing?" "What are your fears and worries about what might be ahead with your illness?" "What's your understanding of your illness?" "How does your faith fit into your way of coping with your illness, if you have a faith?" "Are there moments where you struggle with, you know, doubts about your own faith?" if this is somebody who has a strong spiritual belief system.
You know, I spent a lot of time asking people about their goals. "What are the things that you find matter most to you at this point in your life?" "What kinds of ways do you want me to guide your treatment to be able to help you meet those goals or address the things that are most important to you?" I also think people with serious illness want to and need to talk about their future with their illness, especially as they become sicker. And so, questions about, "How much are you willing to go through for a chance at having more time?" "What quality of life would be acceptable and unacceptable to you if your illness were to progress?" "What kind of involvements do you want your family to have in decisions about your medical care?" "What are the most important goals as you think about your life going forward from here, especially in the context of your illness?" These are all questions that I think elicit the kinds of issues that are on people's minds when they're living with a life-threatening illness.
>> Okay. I also want to talk about people's psychological responses at the end of life or to the end of life. Obviously, every person's response to his or her mortality is going to be different and might change over time, but are there any sort of general types of responses or ways of coping that people tend to have near the end of life? >> Well, you know, I think as people approach the end of life, there's often more physical symptoms. There's more physical distress, and there's often more anxiety about what's going on in the moment and fear about what's ahead.
So, I think that here are some, you know, very challenging psychological states that people are contending with as they get sicker, and what's really remarkable to me is that most people do okay in managing those difficult physical and psychological states. If you look at the literature, only about 25% of patients develop clinical depression in the setting of a serious and advancing illness approaching the end of life.
I think there's a broad assumption that, oh, if I were dying, I would be depressed or anyone would be depressed in that state, and the reality is that most people are not. They're grieving. They're sorrowful. They're sad. They may be anxious, but most people are able to also get pleasure from the things that have always been meaningful to them, if only in small doses because of fatigue or other symptoms. They're able to interact with the people they care about and able to find a sense of sort of hope and purpose in kind of carrying on.
I think one of the hardest things for many people as they get sicker is a kind of loss of the capacity to contribute, and one of the most important ways we can be helpful to people with serious illness is to offer them ways of continuing to contribute, either through sharing wisdom or sharing stories or providing forms of teaching about things that have been meaningful and important to them.
And I think that's a very important way that we can support people who are approaching the end of life. I think another challenge for many patients is concerns about dependency. Most people fight pretty fiercely to grow up and become pretty independent, and then to have to surrender that is, I think, a major internal challenge for people. Similarly, control is something that people struggle with as they get sicker. There are more and more things out of their control, and that's a challenge for people.
I think the biggest feelings for people are feelings of loss and grief about losing the people who are most important to them, losing the future, not knowing how things will turn out. And those are all normal and painful experiences, and most people, remarkably, given the sort of psychological challenges that they face when they're seriously ill, most people find ways of tolerating those difficult emotions, especially when they have good support from people around them.
>> Now, you mentioned grief and the grieving process, and it's a natural response. There are some constructs that are used to help people understand the grieving process. I know one I think is the Kubler-Ross model, the five stages of grief. >> Yes. >> Is that something that you use in your own care for patients? I guess I've sort of found it to be a little bit abstract, but I'm wondering if there's an understanding of the five stages of grief, sort of how does that help with patient care, for example?
>> I think the literature shows that the five stages of grief are real, but also that they are not, you know, necessarily linear and sequential as Dr. Kubler-Ross described, and that people have a complex of different feelings as they're dying. And the five stages are denial, anger, bargaining, despair, and acceptance. In the patients that I've seen, I usually see a mixture of multiple stages at any one time, with maybe one or two of them being more prominent than some of the other ones.
But that human beings need denial to live. If we were constantly confronting the worst possible things that could happen to us, we wouldn't be able to get out of bed in the morning. And so, denial has a function in allowing us to live in the face of hard things. And anger is something that, for many people, is kind of mobilizing, and you know, the idea about being a fighter is a kind of angry stance. And yet, I think in our culture, especially, we think of that as being a kind of noble stance to take.
I think bargaining refers to this idea about if I'm only really good, if I do everything I can in my power to follow the doctor's orders, to do everything that I'm told to do, to live a healthy life, that I'm going to be okay. And so, you see people trying to live that way. I think that the depression or despair is an acknowledgement of the feelings of loss that everybody is feeling as they feel their old lives slipping away and have to adjust to new realities that they don't want and that nobody would want, as they feel their lives kind of diminishing.
And I think acceptance is something that most people have at least in some measure that has to do with some recognition that this is the way of the world. This happens to all of us. We're all vulnerable people who suffer in our lives at different times. And people hold these different emotions, you know, in different relationships with each other, and I think there is a progression over time towards more acceptance in many, many, many patients.
There are people who never get to that point and who are fighting all the way to the end. The problem with that stance is that it gets very hard to maintain as people get really sick and as the evidence of their deterioration becomes stronger and stronger. And so, I think that the stages have a value because they allow a clinician to think about the many different emotions that people are going through, and I think the construct of trying to move people toward some form of peacefulness or acceptance of their illness allows for more of a calmness for the patient, but also it allows family members to be more settled and to be able to cope with the loss in a less anguished way.
>> You also, you mentioned earlier the distinction between grief, which is a normal response to death, versus depression, and you mentioned a certain percentage of people do develop depression. Can you talk a little bit more about how clinicians can maybe try to sort through the differences between grief and depression and then what a clinician should do if they suspect their patient actually is suffering from depression? >> I think the big differences between grief and depression have to do with the intensity and the ability of the feeling to be affected by circumstances in the moment.
Let me start with grief. In general, grief tends to wax and wane. It becomes very intense in ways, and then it often recedes. Something nice happens, and the person is able to feel a sense of joy and pleasure and enjoyment. Somebody with depression isn't able to feel pleasure at all in those circumstances, and the feeling of a low mood in depression is much more autonomous and unresponsive to nice things that might happen in the person's setting.
People with grief may have moments of hopelessness, but it's not persistent. In depression, it tends to be much more persistent. There are also feelings of helplessness and worthlessness and guilt that go along with depression, which generally are not as intense in people with grief. And people who are grieving, they may wish that death would come soon, or they may feel like they're tired and they're ready for the end.
People with depression are more likely to think about doing active measures to end their lives prematurely and have what we call suicidal thoughts. And in general, people with grief may have moments of very intense low mood, but they're not present all the time. Whereas, in depression, they tend to have this constant, unremitting quality. In spite of the fact that people think that it's normal to be depressed when you're dying, it isn't, and there are treatments that can be extremely effective, and for people who are very ill, probably the most effective and well-tolerated treatments are psychostimulants such as methylphenidate or dextroamphetamine.
Those drugs have a very positive affect on mood. They often provide the person with a little bit of energy which allows them to be a little more engaged with the world and have the pleasures that the world can bring in their lives. It tends to improve thinking that may be slowed by some of the other medicines that they may be taking for other symptoms that they're having. It may improve appetite, and it may improve pain control.
And so, these agents, these psychostimulants, can be extremely effective in multiple different ways, not just for mood but for other symptoms that are pretty common in patients with serious illness. Other antidepressants, such as the selective serotonin reuptake inhibitors are also effective, although they have a much longer duration before they take effect than psychostimulants which can take effect within hours or days. And so, for people who have a time limited horizon, psychostimulants can make them feel better in one or two days.
Whereas most SSRIs can take weeks before they have an effect. And that's why in general for people with limited time horizons, many clinicians tend to prefer the psychostimulants. >> Another common psychiatric disorder at the end of life is delirium. Can you talk a little bit about how common that is and what it typically presents like? >> Yeah. Delirium is a very common syndrome for people at the very, very end of life. About 70% of people who are dying have some form of delirium during that process.
It's usually multifactorial in its base origin, and there may be parts of the delirium that are reversable and parts that are irreversible. For example, somebody may have kind of brain failure related to low oxygenation or other factors, and that part is probably not reversable, but if they have some delirium related to being on opioid medications, that can be reversable. And so, I think the first strategy is to look for reversable causes, and if there are reversable causes, to do what can be done to kind of reverse them.
Psychoactive drugs, sedatives, hypnotics, and particularly opioids are among the most common drugs that contribute to delirium. Being in a strange environment, not having familiar people or objects around can contribute, and simple things like warm milk, massage, and so on. Pictures of familiar people, all those kinds of things have been shown to be helpful in treating people with delirium. And the important thing about delirium is it can be a very terrifying state for the patient as well as for the family and can be quite traumatizing.
And if you ask people who've been through delirium what the experience was like, they often can tell you afterwards that it was just horrifying. There's a lot of uncertainty right now about what the best treatment for delirium is, and there have been some recent trials that show that the usual medications, which are antipsychotic medications, may be associated with premature death, particularly in very sick patients. But there are other studies that show that drugs like benzodiazepines which are commonly used to treat delirium make the delirium worse.
So, I think that there is a lot of uncertainty right now about what the best approach is to treating delirium. The one area of consensus is around the uses of nonpharmacologic measures, like massage, you know, keeping lights on, pictures of loved ones around, these kind of environmental manipulations, that can be somewhat helpful. But if people are flagrantly and extremely delirious, I think you have to treat them with medications, and I think that even though there may be some risk of an antipsychotic medication increasing by a small amount, the risk of death in someone with a delirium at the very end of life, I think it's probably worth taking with the full understanding of the patient's family, since they probably won't be able to speak for themselves, as a way of just reducing the kind of terror that can often come with delirium.
There have been other studies that show that sometimes adding low doses of the benzodiazepine to an antipsychotic may be another kind of effective way of minimizing the adverse effects of both drugs on the patient who has a delirium at the very end of life. >> Another interesting idea I found in the chapter, you know, death, I think is often considered something scary and negative in our society, but in your chapter, towards the end, you talk about the idea of a good death. What do you mean by that, exactly?
>> You know, at some level, I'm not sure I really believe in the idea of a good death, but there are certainly better deaths and worse deaths. And there are patients for whom death is better than the alternative, and you know, I think about my dad, for example, who, in his late 80s, with ten years living as a partial quadriplegic and having increasing symptoms that meant that he would have to go to a nursing home, basically decided that he didn't want any more treatment, that he was done.
He'd rather be home and end his life in his own home, in his own bed, with his children and his dog present, than to have to go to a nursing home. And so, he decided to stop his treatment, to come home from the hospital, and to receive care that would just allow him to be peaceful and comfortable at home and to end his life in that situation. All things considered, he had a pretty beautiful death. He was comfortable. He was at peace. He said goodbye.
His dog was lying by the bed. His children were surrounding him. There was beautiful music playing, and he felt that he had some control and that this ending at that time was much better than something that would happen later after a time in a nursing home, which was a place that he never, ever, ever wanted to be. So, I think that's an example of, you know, a better death, and it was a beautiful death. It wasn't a good death from the point of view of his family because we miss him.
But it was still a pretty beautiful death. >> And in terms of relationships with friends and family, sometimes, I think knowing that the end of life is near can bring people closer together. People maybe will move in with a family member or something like that, but sometimes, I think it can also be quite stressful in terms of relationships with friends and family, especially if there are new living situations or new financial costs related to medical care.
Is there anything that clinicians can do to help patients maintain or develop these relationships with family and friends in a positive way towards the end of life? >> Well, I think we need to remember that more than 1/3 of patients lose all or most of their savings in the course of dealing with a serious, life-threatening illness and that that is a huge stressor for many families. That the role of caregiver as a spouse or a daughter or sometimes a son is, as you say, a very stressful, lonely, isolating, and depressing role, especially when it goes on for many years.
And the most important thing we as clinicians to do is also an incredibly simple thing, and yet we rarely do it. And that is to ask the family member, "How are you holding up? What's it like to take care of your husband day after day when he's this sick?" and just ask and acknowledge and give them some kind of recognition for what they're doing. "You're doing an amazing job. It takes a lot of strength to be able to hang in there day after day and do the kind of caregiving that you do." Those small comments, that take almost no time, are so deeply meaningful, helpful, valuable to caregivers that we really need to learn that and do that on a regular basis.
>> And do you have any advice for how clinicians can engage patients in discussion about their own lives, sort of finding meaning in their life as they reflect back on their legacy as they're approaching death? >> Well, there are lots of different kind of approaches that have been tried, but I think questions and exploration, like, "What are you most proud of about your life?" "Who've been the critical people who've had the most influence on you as a human being?" "What would you like people to remember about you?" "What would you like your legacy to be?" "What kinds of wisdom have you accumulated over your life that you'd like to share with other people?" "What advice would you give to your children or to your grandchildren?" I think those kinds of questions can give space for the person to reflect on their life and to be able, also, to share and pass on some of what they've learned in a way that could be meaningful to them as well as to other people.
>> Thank you, Dr. Block, for taking the time to speak with us. You've been listening to a discussion of chapter 24, "Psychological Considerations, Growth, and Transcendence at the End of Life The Art of the Possible" from JAMAevidence of Care at the Close of Life. This is Christopher Muth, Associate Editor of JAMA, with this JAMAevidence podcast.
Form Title Download
Media
Transcript
Form Title Bookmark
Entire Media
Segment(s)
Custom Clip
Start At:
End At:
Form Title Share
Entire Media
Segment(s)
Custom Clip
Start At:
End At:
Form Title Accessibility
The cadmore media player is a professional video and audio player experience designed to deliver media as well as relevant transcript, segmentation, and metadata. On the screen is a traditional html audio player with buttons such as play, pause, forward, captioning, language and play speed selection and more. Adjacent to the audio player are generally tabs, one of which shows a scrolling transcript of the audio and the other shows any segmentation of the media, sometimes referred to as chapters. At the top of the audio player is a menu bar containing an Explore button and Tools button. The Explore button allows you to dig deeper into the audio by opening up an explore dialog which contains an about tab which contains rich metadata about the media, a segments tab which contains further information about the audio, and a related tab which contains links to other media related to this media. The tools button opens a menu with options for sharing the media on social media, creating bookmarking links, creating embed codes for your website, generating citations, and more.
Keyboard Shortcuts
Keyboard shortcuts only work while you are in forms mode. By entering forms mode, you will be able to quickly access portions of the media player with single key commands.
Spacebar: Play/Pause Toggle
E: Explore Menu,
O: Tools Menu
T: Transcript Tab,
S: Segments Tab
F: Forward 15,
R: Rewind 15
L: Languages,
P: Playspeed
M: Mute Toggle,
V: Volume Bar
N: Video Only Toggle,
B: Full Screen Toggle
C: Captions Toggle
Escape: Closes dialogs and menus
Z: Next Transcript Chapter
X: Previous Transcript Chapter
Q: Next Transcript Paragraph
W: Previous Transcript Paragraph
Form Title Embed Media
Entire Media
Segment(s)
Custom Clip
Start At:
End At:
Embed Size
-
You Size - Responsive
-
We Size - Responsive
-
Picture Overlay Popup
-
400 x 225
-
512 x 288
-
400 x 700
-
768 x 1024
-
1024 x 512
-
1280 x 608
Form Title Cite
No citation provided.
Info
Segments
Related
Thumbnails
Accessibility
Using forms mode, you can utilize keyboard shortcuts to make usability more efficient.
Space bar will play and pause the media.
You can press A to open the Accessibility Dialog.
This describes many other keyboard shortcuts for media controls.
Exit Clip Mode
The video is currently set-up to show just a clip from 0:00 to video end. You have requested to see a portion of the media outside of the clip.
Click OK to switch to the full media or click if you would like to stay inside the clip. You can always go back to the clip with Tools and Clip Mode