Cadmore media player playing audio Joshua M. Hauser, MD, discusses physician opportunities to support family caregivers at the end of life.
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:
Joshua M. Hauser, MD, discusses physician opportunities to support family caregivers at the end of life.
Description:
Joshua M. Hauser, MD, discusses physician opportunities to support family caregivers at the end of life.
Thumbnail URL:
https://cadmoremediastorage.blob.core.windows.net/4e81edce-d699-45cb-8441-a059608bde16/thumbnails/4e81edce-d699-45cb-8441-a059608bde16.jpg?sv=2019-02-02&sr=c&sig=G1WK74C0P9xRCb7DxT%2B2YPFFIdd%2FWOSUMcPFIFQNmvY%3D&st=2024-10-16T00%3A51%3A59Z&se=2024-10-16T04%3A56%3A59Z&sp=r
Duration:
T00H25M12S
Embed URL:
https://stream.cadmore.media/player/4e81edce-d699-45cb-8441-a059608bde16
Content URL:
https://cadmoreoriginalmedia.blob.core.windows.net/4e81edce-d699-45cb-8441-a059608bde16/16776397.mp3?sv=2019-02-02&sr=c&sig=xblrPpY76Gd0vniqRXxxY2Pn45rK8prn3OZjcwj5buA%3D&st=2024-10-16T00%3A51%3A59Z&se=2024-10-16T02%3A56%3A59Z&sp=r
Upload Date:
2022-02-28T00:00:00.0000000
Transcript:
Language: EN.
Segment:0 .
>> This is Christopher Muth, Editor at JAMA. And I'm interviewing Dr. Joshua Hauser, who wrote a chapter entitled, "Physician Opportunities to Support Family Caregivers at the End of Life" and JAMAevidence, "Care at the Close of Life". He wrote this chapter along with Dr. Michael Rabow, and Jocelia Adams. Thank you for joining us today, Dr. Hauser. Can you please tell us about yourself? >> Absolutely. So my name is Joshua Hauser, and I'm a palliative care physician at Northwestern Feinberg School of Medicine, and at the Jesse Brown VA in Chicago at Northwestern.
I'm the Director of our Palliative Care Fellowship, and also Director of Education and Palliative and End of Life Care, or EPIC project. And at the Jesse Brown VA, I'm Chief of the Palliative Care section. >> Great. The main focus of your chapter is on family members who act as caregivers, often providing care for their loved ones at home. How common is it for patients near the end of life to have a family member who serves as a caregiver? >> So it's extremely common.
It's obviously not 100% of patients. But most of the patients that we see at the VA in Northwestern who are at home have some constellation of family members. It will vary by whether it's a wife, or a daughter, or a son, or another relative. But significant majority will have family members who are helping take care of them at the end of life. Those who don't may have informal caregivers, in other words, caregivers who are hired.
And those who obviously don't have anybody at home, whether family or other caregivers, will need to go to a facility, a nursing facility or other type of facility. >> Okay, and for people who do have caregivers at home, especially family member caregivers, what types of activities are the family member caregivers typically involved in? >> I think there are a few categories. There are very practical things, and by practical things, I mean helping with getting out of bed, or helping with bathing, so activities of daily living kinds of things.
There are more medical things, such as helping with medications that a patient may need, and that may be oral medications, or inhalers, or topical medications. There are some patients, especially in hospice, who may get a medication through an external feeding tube, or even an IV medication in certain circumstances. So practical, more physical and activities of daily living things, medication things. And then I think probably the largest category are, you know, psychological things, and by that, I mean psychological or emotional supports that they may provide for their loved one, help with decision-making, sometimes called using healthcare proxy or a power of attorney for healthcare.
That's probably the last category, and probably the most important category. >> Is there any data about who the caregivers typically are and then also, how much time on average they typically spend providing care? I imagine there's certainly a wide variety, but I don't know. >> Yes. I think there is a wide range. They tend to be women. So I think approximately 75% are women. And the -- I think the data vary as to how long; it depends a little bit on how you define the tasks.
I mean, a week has 168 hours, if you think about it. There are seven 24-hour days. And there are some patients who need almost constant attention. There are other patients who need much more intermittent attention. There are many patients who will have a hired caregiver, a CNA, or a homemaker, and a family caregiver. So as I mentioned, I think the data are about 70 to 75 percent women, which is higher than women are represented in the population. So women bear the burden of this often and, you know, many, many hours.
And I think that's been a little bit harder to quantify, number of hours. >> Sure. And your chapter outlines several of the different challenges that family caregivers face, including physical challenges, financial costs, and emotional and physical health burdens. Can you talk a little bit about what are some of the physical challenges that the caregivers often encounter? >> Well, I think there are a couple. I mean, physically helping to move someone or helping to get someone to the bathroom, or helping to shower them, or helping them with exercises or even passive range of motion can be physically challenging.
So that's one sort of set of physical challenges. The other set is just the labor of being a caregiver. So even the psychological things that they're doing, their presence with their loved one, their psychological support that they provide, that can be physically draining as well. So those are some examples of what I think can be physical challenges. >> And I think you also mentioned in the chapter that caregivers actually have a higher rate of actual medical illness, is that correct?
>> Yes, so there was data from a while ago now about, and I don't remember the exact numbers, and I apologize about that, but about an increased susceptibility to medical illness during the course of caregiving. There's also data about the increase to susceptibility, and in fact increased mortality after caregiving in the bereavement period. So both of these periods, both the period of actual caregiving and the strains that that puts on family members, as well as in the bereavement period after a patient has died, do confer some risk, and some risk of medical illness on caregivers.
>> Sure, and in terms of the financial challenges, I think this is something that, at least I as a physician don't often think about, but can you speak a little bit about the financial challenges that families often face? >> Yeah. So there are really two types of challenges, or two categories. So one is the cost that they might need to bear for a loved ones' illness. So for medicines that might not be covered by insurance or hospice, depending on the type of care that a family member is getting for other types of equipment.
So those are direct costs that a family might need to bear. And then there's also the cost of missed work. So when a family member needs to take off of work, that's a cost that they're not receiving income from that time. >> And then in terms of the emotional and mental health risks associated with serving as a family caregiver, I imagine those are related to depression and other mood disorders? >> Yeah. So they're vulnerable to depression.
And, you know, it's interesting, and I actually don't know specific data about this, but I think that on the flipside, it can be a very fulfilling time for some family caregivers. And I hear this in my practice, that for some family members the strain, and the intensity, and the potential for depression or other psychological strain are there, but there can also be, I think, moments of connection and fulfillment in that act.
So you know, I think psychologically it does have impact in both directions, both as, again, a strain and a potential psychological challenges that they may face, but also psychological dividends and sort of a new phase of a relationship that a family member might have with their loved one in this stage. >> Yeah, that's a really important point. And when physicians encounter a patient who has a family member caregiver, what are their responsibilities to the family member caregiver, and how can they start to think about sort of balancing their responsibilities to the patient with the caregiver; or is there a -- do you think of it like that, or is it -- I guess I always think of like, you know, the physician's responsibility to the patient, but I think -- >> Yeah.
>> There's another piece of it there, and I'm not sure if it's in conflict or complementary, or both. >> Yeah, I hope it's complementary. Yes, I don't know for sure. And I think it is a kind of a novel way of thinking about things. You know, there's a significant emphasis in certain parts of medicine, whether palliative care or family medicine, or obviously pediatrics of really thinking about the patient within a family system. >> Sure.
>> So I think the first instinct or habit for any physician is to try to understand who this family is, and ask, you know, "Who is your family, who are the important people in your life," to a patient. The second is to, once we know who they are, is to understand their different roles. One of the interesting things about families is that no two are alike. And they, you know, there might be in one family a wife and a daughter who are very involved in a patient's life.
And in another family, it's two daughters, and one son, and a grandchild. And in a third family it's a husband, and a brother, and a daughter. So I think it's actually quite complicated to start teasing that out. I really, I try to work a lot with my colleagues in social work and other, you know, clinicians to understand that. But from a physician perspective, you know, asking patients who their family is, and by family I mean, you know, people related by blood, or by marriage, or by any kind of significant relationship or friendship even; so a very broad definition of family.
Number two, understanding then once we know who they are, what they do, and what sort of activities have helped support this patient in his or her life, and then number three and projecting towards the future, and helping the patient with, or helping the family with understanding what tasks might be ahead. And I think that's interesting because I'm mostly a hospital-based physician. I see patients as a consultant at the VA and at Northwestern. So I'm often in the position of seeing a patient acutely in the hospital, and I really rely on some of my colleagues who then see the patient at home and hospice to get a little bit more fine-grained about, you know, what the actual activities that the families are then doing.
I think the other point to make is that, and it connects with some of the conversation we were having in the beginning, is that there are a lot of different roles; there are physical roles, there are more medical roles, there are more psychological or emotional support roles. And I think what I've seen is that families sometimes divide those up. That there might be one person who is more interested or even competent in some of the more medical things and keeping track of medications. And then there is another family member who might be more adept and competent at some of the more emotional aspects of support.
I think families find a way to make that division, but it's probably something that we can sort of talk a little bit upfront with them about. >> Yeah, and then once you sort of begin talking about that, and identifying who the various caregivers are, is there any tips you can offer for physicians how they could assess how the caregiver is doing, or the status of the caregiver? Is it just asking them how they're doing, or is there anything else to it? >> Yeah, I think it -- that's how I think we often do it, we ask them how they're doing, we ask them are they facing any challenges, are there things that they feel like they need more support about?
Those are fairly general questions, but I think important ones to ask. And I think they need to be asked a few different times, because there are often family members might not want to reveal that they're having trouble. So I think there needs to be the sense of, you know, that it's okay. And so I think actually one of the important things that physicians can do is to normalize this, and to say that, "We know that helping take care of a loved one at home can be very hard and challenging, and we want to make sure that we're offering you as much support in the form of other people, informal or hired caregivers, in the form of, you know, maybe a support group that many different cancer centers, and wellness centers, and hospitals have for family members, that we want to make sure that we're offering you as much support as possible." But there can be a challenge for a family member to admit that they're feeling strain or feeling challenged.
>> Okay. And then your article also mentions several different ways that physicians can be of service to patients, families, and caregivers. And a few of the examples were excellent communication, advanced care planning, supporting homecare, and showing empathy. >> Mm hmm. >> In terms of communication, I think one of the most common ways that this takes place near the end of life is in family meetings. >> Mm hmm. >> Do you have any recommendations on how to best conduct a family meeting when the patient isn't present?
>> Yeah, so this is a, you know, really important topic, especially for physicians in the hospital, but really in any circumstance. I like to think of it in kind of three different phases, if you will, when we think about a family meeting. So the first phase is before the meeting even happens. So we think together as whatever physicians, or nurses, or social workers, et cetera, who are going to be there about what we want to do at this meeting, what our goals of this meeting are, and what we hope to accomplish by having this meeting.
And that may take just a few minutes, but it's important for everybody to be coordinated before even walking into the meeting. That's the sort of first step of a meeting. The second step is the meeting itself. And you know, at a family meeting itself there are sort of basic communication skills around listening, around eliciting the family's perspective, and their understanding, and their often goals of care for their loved one, and then summarizing what's been discussed and making sure that there's something fairly concrete at the end of the meeting.
And then finally the third phase, so the first phase is before the meeting, the second phase is the meeting itself, and the third phase is actually after the meeting. And so that there will be some follow-up, whether the next day or the next week with kind of what we decided on and how that's going. So for example, if a family meeting has been called and a decision is made between the clinicians, not just physicians but all the clinicians, and the family that this patient is going to go home with hospice and the focus is going to be on his comfort, that a week later or even a couple days later there's some follow-up to make sure that that plan is actually moving forward and happening.
I think the main challenge that I see for all of us, myself included, with family meetings is that they aren't well-structured. And in the interest of making sure we're listening, which is an important topic, an important act, we're not organizing the meeting and focusing things enough for a family. One of the things that I think it's true for patients and for families in the setting of a serious illness is that it's a time of a lot of, you know, overwhelmedness and chaos for them.
And I think that one of the ways that we are most therapeutic as clinicians is by helping give some structure and organization to what's a very chaotic often confusing time. >> Yeah, thanks. That's a really clear way of thinking about the process. Sometimes there's disagreement among family members during family meetings. Do you have any advice for how to handle situations like that if family members are disagreeing with one another?
>> Yeah. Yeah, I think it's pretty common. I actually don't know that I know of data that quantifies how common it is, but I think it's pretty common. And I think it's pretty understandable. And that's kind of what I say to families, that I think, you know, families are complicated and complex, and often have multiple perspectives. And that's healthy. And the important thing is that we be able to talk about those multiple perspectives, and that we really try to keep the focus as clearly as possible on their loved one, on the patient.
And that's hard to do. And I say this, I say that's often hard to do for all of us. But if we can kind of focus on what he would want, or she would want, what is most important to him or to her, that might help with some of these disagreements. But it's not easy, because there often are disagreements, and even conflict. And I think that a clinician can help to say that's okay to have those, but it's also important to kind of take a step back and really develop the perspective of the patient in front of us as opposed to my specific perspective as a wife, or a son, or a cousin, or a brother.
>> And in terms of homecare, as you mentioned before, there are a lot of different aspects of the medical care that can be delivered by the family members at home. For some of the more complicated things, or potentially complicated things like giving an infusion or an injection, how do family members learn how to do these things? Which clinicians are typically involved? >> Yeah, so that's an interesting thing. So that really is our colleagues, and when I say our I mean as physicians our colleagues mostly are nursing who are really most immediately involved in that kind of education and support.
So I see this at the bedside at the hospital after we've had a family meeting and I kind of forget that, "Oh my goodness, this patient is actually let's say on tube feed, and the family member is going to have to hang a bag for the tube feedings." And I think, "Oh, that must automatically happen." And of course, it does not automatically happen. There are a whole set of steps. And so it will often be the bedside nurse, at least in the situations that I'm in, that will do the kind of immediate teaching for family members about that.
And there may be other organized approaches to that that I'm not aware of, but what I see mostly is bedside nurses and other bedside clinicians, not physicians, it turns out. Because, at least for most of us, we're not very good at that part of, that's a more hands-on part of the care. But nurses who are really excellent at it are able to educate family members in preparation for going home. And then once they're home, again, for family members, and this is the majority of the families whom I see who have, you know, hospice services at home, it's a similar nurse who works for the hospice who will help with medication administration, and tube feedings, and other things like that.
>> Okay. And then as you mentioned before as well, there's a lot of ups and downs when caring for someone near the end of their life. And I guess in order to help people -- to prepare family member caregivers for the emotional ups and downs, is there anything that can be done sort of earlier on in the process to help them prepare for what could be a potentially emotionally trying or draining experience? >> Yeah, I think, again, to give them some sense of that it will be, or it might be, to give them some sort of future perspective about some of the things that they might face.
And I think it's important to be able to do that. It's important, obviously, not to scare someone as you're doing that, but to try to be as kind of plain and realistic about some of the things that might be coming up. You know, I think it's often both a surprise and not a surprise to family members. In other words, they've actually been seeing their loved one often get weaker and more dependent, for example, or often have a symptom, pain for example. But they've been experiencing this more than we sometimes realize.
And we're now seeing it a moment in time, happen in the hospital for someone like me. So I think to give them a sense of what can lie ahead and what might lie ahead, number one. Number two, to talk about the other kinds of support we might be able to offer or hope we can offer, whether in the form of home hospice or other home services. I think to be available. We as a palliative care team will sometimes call our patients who have been discharged, even though they're getting the services of another hospice, and just to check in to see how they're doing.
And we, you know, hear a lot of things that, "The hospice is wonderful, but they're not coming often enough." "The hospice is wonderful, they're coming just the right amount." "I'm still confused about that medication that you suggested." So just that act of checking in can also be I think an important one. >> Is there a role also for screening caregivers for, you know, like development of depression or something like that, or are there any red flags that you look for, and if you find anything suggestive of depression or burnout, what are typically the next steps?
>> Yeah. And that gets at, you know, the issue of sort of we typically think of the patient as our patient, and the family as a family, and well how do we figure that one out? And I think that's hard because we're I think often not the family members' physician or professional caregiver. So I think there might be a role for screening family members. It's not something we typically do. And it will be interesting to think about what it will be like to do that on a regular basis. And I don't know the answer to that question, and I could imagine two different types of screening.
One is about sort of risk for depression or current depression, other things like that. And the other is sort of screening for different levels of competence around some of the caregiving activities. I think both could be very valuable. I think that when you do see something like that, and find something like that in a family member, I think, you know, without making him or her your patient, expressing your concern and asking them if they do have a current physician or other care provider that you can at least be in touch with to express that concern, I think it's probably not realistic or even appropriate to start taking on the care of each patient's loved one, because as I mentioned before, that can be a complicated constellation of people.
But in the course of, you know, being in touch with them as a physician, whether in the hospital or other setting, there will be things you'll notice, as you're alluding to and I think that expressing your concern, asking if they have their own professional caregiver, and then asking if it's okay for you to be in touch with that person, if need be. >> Okay, is there anything else that you would like to tell our listeners about supporting caregivers at the end of life? >> I guess the major thing is sort of where we started, just the -- I think the very act of being aware of families, being aware of how complicated they are at baseline, and being aware of all the myriad tasks that they're asked to do, I think is a huge step for all of us, and often one that we might not do as well as we can.
>> Thank you, Dr. Hauser, for taking the time to speak with us. You've been listening to Chapter 28, "Physician Opportunities to Support Family Caregivers at the End of Life", from JAMAevidence "Care to Close of Life". This is Christopher Muth, Editor at JAMA, with this JAMAevidence podcast.
Segment:0 .
>> This is Christopher Muth, Editor at JAMA. And I'm interviewing Dr. Joshua Hauser, who wrote a chapter entitled, "Physician Opportunities to Support Family Caregivers at the End of Life" and JAMAevidence, "Care at the Close of Life". He wrote this chapter along with Dr. Michael Rabow, and Jocelia Adams. Thank you for joining us today, Dr. Hauser. Can you please tell us about yourself? >> Absolutely. So my name is Joshua Hauser, and I'm a palliative care physician at Northwestern Feinberg School of Medicine, and at the Jesse Brown VA in Chicago at Northwestern.
I'm the Director of our Palliative Care Fellowship, and also Director of Education and Palliative and End of Life Care, or EPIC project. And at the Jesse Brown VA, I'm Chief of the Palliative Care section. >> Great. The main focus of your chapter is on family members who act as caregivers, often providing care for their loved ones at home. How common is it for patients near the end of life to have a family member who serves as a caregiver? >> So it's extremely common.
It's obviously not 100% of patients. But most of the patients that we see at the VA in Northwestern who are at home have some constellation of family members. It will vary by whether it's a wife, or a daughter, or a son, or another relative. But significant majority will have family members who are helping take care of them at the end of life. Those who don't may have informal caregivers, in other words, caregivers who are hired.
And those who obviously don't have anybody at home, whether family or other caregivers, will need to go to a facility, a nursing facility or other type of facility. >> Okay, and for people who do have caregivers at home, especially family member caregivers, what types of activities are the family member caregivers typically involved in? >> I think there are a few categories. There are very practical things, and by practical things, I mean helping with getting out of bed, or helping with bathing, so activities of daily living kinds of things.
There are more medical things, such as helping with medications that a patient may need, and that may be oral medications, or inhalers, or topical medications. There are some patients, especially in hospice, who may get a medication through an external feeding tube, or even an IV medication in certain circumstances. So practical, more physical and activities of daily living things, medication things. And then I think probably the largest category are, you know, psychological things, and by that, I mean psychological or emotional supports that they may provide for their loved one, help with decision-making, sometimes called using healthcare proxy or a power of attorney for healthcare.
That's probably the last category, and probably the most important category. >> Is there any data about who the caregivers typically are and then also, how much time on average they typically spend providing care? I imagine there's certainly a wide variety, but I don't know. >> Yes. I think there is a wide range. They tend to be women. So I think approximately 75% are women. And the -- I think the data vary as to how long; it depends a little bit on how you define the tasks.
I mean, a week has 168 hours, if you think about it. There are seven 24-hour days. And there are some patients who need almost constant attention. There are other patients who need much more intermittent attention. There are many patients who will have a hired caregiver, a CNA, or a homemaker, and a family caregiver. So as I mentioned, I think the data are about 70 to 75 percent women, which is higher than women are represented in the population. So women bear the burden of this often and, you know, many, many hours.
And I think that's been a little bit harder to quantify, number of hours. >> Sure. And your chapter outlines several of the different challenges that family caregivers face, including physical challenges, financial costs, and emotional and physical health burdens. Can you talk a little bit about what are some of the physical challenges that the caregivers often encounter? >> Well, I think there are a couple. I mean, physically helping to move someone or helping to get someone to the bathroom, or helping to shower them, or helping them with exercises or even passive range of motion can be physically challenging.
So that's one sort of set of physical challenges. The other set is just the labor of being a caregiver. So even the psychological things that they're doing, their presence with their loved one, their psychological support that they provide, that can be physically draining as well. So those are some examples of what I think can be physical challenges. >> And I think you also mentioned in the chapter that caregivers actually have a higher rate of actual medical illness, is that correct?
>> Yes, so there was data from a while ago now about, and I don't remember the exact numbers, and I apologize about that, but about an increased susceptibility to medical illness during the course of caregiving. There's also data about the increase to susceptibility, and in fact increased mortality after caregiving in the bereavement period. So both of these periods, both the period of actual caregiving and the strains that that puts on family members, as well as in the bereavement period after a patient has died, do confer some risk, and some risk of medical illness on caregivers.
>> Sure, and in terms of the financial challenges, I think this is something that, at least I as a physician don't often think about, but can you speak a little bit about the financial challenges that families often face? >> Yeah. So there are really two types of challenges, or two categories. So one is the cost that they might need to bear for a loved ones' illness. So for medicines that might not be covered by insurance or hospice, depending on the type of care that a family member is getting for other types of equipment.
So those are direct costs that a family might need to bear. And then there's also the cost of missed work. So when a family member needs to take off of work, that's a cost that they're not receiving income from that time. >> And then in terms of the emotional and mental health risks associated with serving as a family caregiver, I imagine those are related to depression and other mood disorders? >> Yeah. So they're vulnerable to depression.
And, you know, it's interesting, and I actually don't know specific data about this, but I think that on the flipside, it can be a very fulfilling time for some family caregivers. And I hear this in my practice, that for some family members the strain, and the intensity, and the potential for depression or other psychological strain are there, but there can also be, I think, moments of connection and fulfillment in that act.
So you know, I think psychologically it does have impact in both directions, both as, again, a strain and a potential psychological challenges that they may face, but also psychological dividends and sort of a new phase of a relationship that a family member might have with their loved one in this stage. >> Yeah, that's a really important point. And when physicians encounter a patient who has a family member caregiver, what are their responsibilities to the family member caregiver, and how can they start to think about sort of balancing their responsibilities to the patient with the caregiver; or is there a -- do you think of it like that, or is it -- I guess I always think of like, you know, the physician's responsibility to the patient, but I think -- >> Yeah.
>> There's another piece of it there, and I'm not sure if it's in conflict or complementary, or both. >> Yeah, I hope it's complementary. Yes, I don't know for sure. And I think it is a kind of a novel way of thinking about things. You know, there's a significant emphasis in certain parts of medicine, whether palliative care or family medicine, or obviously pediatrics of really thinking about the patient within a family system. >> Sure.
>> So I think the first instinct or habit for any physician is to try to understand who this family is, and ask, you know, "Who is your family, who are the important people in your life," to a patient. The second is to, once we know who they are, is to understand their different roles. One of the interesting things about families is that no two are alike. And they, you know, there might be in one family a wife and a daughter who are very involved in a patient's life.
And in another family, it's two daughters, and one son, and a grandchild. And in a third family it's a husband, and a brother, and a daughter. So I think it's actually quite complicated to start teasing that out. I really, I try to work a lot with my colleagues in social work and other, you know, clinicians to understand that. But from a physician perspective, you know, asking patients who their family is, and by family I mean, you know, people related by blood, or by marriage, or by any kind of significant relationship or friendship even; so a very broad definition of family.
Number two, understanding then once we know who they are, what they do, and what sort of activities have helped support this patient in his or her life, and then number three and projecting towards the future, and helping the patient with, or helping the family with understanding what tasks might be ahead. And I think that's interesting because I'm mostly a hospital-based physician. I see patients as a consultant at the VA and at Northwestern. So I'm often in the position of seeing a patient acutely in the hospital, and I really rely on some of my colleagues who then see the patient at home and hospice to get a little bit more fine-grained about, you know, what the actual activities that the families are then doing.
I think the other point to make is that, and it connects with some of the conversation we were having in the beginning, is that there are a lot of different roles; there are physical roles, there are more medical roles, there are more psychological or emotional support roles. And I think what I've seen is that families sometimes divide those up. That there might be one person who is more interested or even competent in some of the more medical things and keeping track of medications. And then there is another family member who might be more adept and competent at some of the more emotional aspects of support.
I think families find a way to make that division, but it's probably something that we can sort of talk a little bit upfront with them about. >> Yeah, and then once you sort of begin talking about that, and identifying who the various caregivers are, is there any tips you can offer for physicians how they could assess how the caregiver is doing, or the status of the caregiver? Is it just asking them how they're doing, or is there anything else to it? >> Yeah, I think it -- that's how I think we often do it, we ask them how they're doing, we ask them are they facing any challenges, are there things that they feel like they need more support about?
Those are fairly general questions, but I think important ones to ask. And I think they need to be asked a few different times, because there are often family members might not want to reveal that they're having trouble. So I think there needs to be the sense of, you know, that it's okay. And so I think actually one of the important things that physicians can do is to normalize this, and to say that, "We know that helping take care of a loved one at home can be very hard and challenging, and we want to make sure that we're offering you as much support in the form of other people, informal or hired caregivers, in the form of, you know, maybe a support group that many different cancer centers, and wellness centers, and hospitals have for family members, that we want to make sure that we're offering you as much support as possible." But there can be a challenge for a family member to admit that they're feeling strain or feeling challenged.
>> Okay. And then your article also mentions several different ways that physicians can be of service to patients, families, and caregivers. And a few of the examples were excellent communication, advanced care planning, supporting homecare, and showing empathy. >> Mm hmm. >> In terms of communication, I think one of the most common ways that this takes place near the end of life is in family meetings. >> Mm hmm. >> Do you have any recommendations on how to best conduct a family meeting when the patient isn't present?
>> Yeah, so this is a, you know, really important topic, especially for physicians in the hospital, but really in any circumstance. I like to think of it in kind of three different phases, if you will, when we think about a family meeting. So the first phase is before the meeting even happens. So we think together as whatever physicians, or nurses, or social workers, et cetera, who are going to be there about what we want to do at this meeting, what our goals of this meeting are, and what we hope to accomplish by having this meeting.
And that may take just a few minutes, but it's important for everybody to be coordinated before even walking into the meeting. That's the sort of first step of a meeting. The second step is the meeting itself. And you know, at a family meeting itself there are sort of basic communication skills around listening, around eliciting the family's perspective, and their understanding, and their often goals of care for their loved one, and then summarizing what's been discussed and making sure that there's something fairly concrete at the end of the meeting.
And then finally the third phase, so the first phase is before the meeting, the second phase is the meeting itself, and the third phase is actually after the meeting. And so that there will be some follow-up, whether the next day or the next week with kind of what we decided on and how that's going. So for example, if a family meeting has been called and a decision is made between the clinicians, not just physicians but all the clinicians, and the family that this patient is going to go home with hospice and the focus is going to be on his comfort, that a week later or even a couple days later there's some follow-up to make sure that that plan is actually moving forward and happening.
I think the main challenge that I see for all of us, myself included, with family meetings is that they aren't well-structured. And in the interest of making sure we're listening, which is an important topic, an important act, we're not organizing the meeting and focusing things enough for a family. One of the things that I think it's true for patients and for families in the setting of a serious illness is that it's a time of a lot of, you know, overwhelmedness and chaos for them.
And I think that one of the ways that we are most therapeutic as clinicians is by helping give some structure and organization to what's a very chaotic often confusing time. >> Yeah, thanks. That's a really clear way of thinking about the process. Sometimes there's disagreement among family members during family meetings. Do you have any advice for how to handle situations like that if family members are disagreeing with one another?
>> Yeah. Yeah, I think it's pretty common. I actually don't know that I know of data that quantifies how common it is, but I think it's pretty common. And I think it's pretty understandable. And that's kind of what I say to families, that I think, you know, families are complicated and complex, and often have multiple perspectives. And that's healthy. And the important thing is that we be able to talk about those multiple perspectives, and that we really try to keep the focus as clearly as possible on their loved one, on the patient.
And that's hard to do. And I say this, I say that's often hard to do for all of us. But if we can kind of focus on what he would want, or she would want, what is most important to him or to her, that might help with some of these disagreements. But it's not easy, because there often are disagreements, and even conflict. And I think that a clinician can help to say that's okay to have those, but it's also important to kind of take a step back and really develop the perspective of the patient in front of us as opposed to my specific perspective as a wife, or a son, or a cousin, or a brother.
>> And in terms of homecare, as you mentioned before, there are a lot of different aspects of the medical care that can be delivered by the family members at home. For some of the more complicated things, or potentially complicated things like giving an infusion or an injection, how do family members learn how to do these things? Which clinicians are typically involved? >> Yeah, so that's an interesting thing. So that really is our colleagues, and when I say our I mean as physicians our colleagues mostly are nursing who are really most immediately involved in that kind of education and support.
So I see this at the bedside at the hospital after we've had a family meeting and I kind of forget that, "Oh my goodness, this patient is actually let's say on tube feed, and the family member is going to have to hang a bag for the tube feedings." And I think, "Oh, that must automatically happen." And of course, it does not automatically happen. There are a whole set of steps. And so it will often be the bedside nurse, at least in the situations that I'm in, that will do the kind of immediate teaching for family members about that.
And there may be other organized approaches to that that I'm not aware of, but what I see mostly is bedside nurses and other bedside clinicians, not physicians, it turns out. Because, at least for most of us, we're not very good at that part of, that's a more hands-on part of the care. But nurses who are really excellent at it are able to educate family members in preparation for going home. And then once they're home, again, for family members, and this is the majority of the families whom I see who have, you know, hospice services at home, it's a similar nurse who works for the hospice who will help with medication administration, and tube feedings, and other things like that.
>> Okay. And then as you mentioned before as well, there's a lot of ups and downs when caring for someone near the end of their life. And I guess in order to help people -- to prepare family member caregivers for the emotional ups and downs, is there anything that can be done sort of earlier on in the process to help them prepare for what could be a potentially emotionally trying or draining experience? >> Yeah, I think, again, to give them some sense of that it will be, or it might be, to give them some sort of future perspective about some of the things that they might face.
And I think it's important to be able to do that. It's important, obviously, not to scare someone as you're doing that, but to try to be as kind of plain and realistic about some of the things that might be coming up. You know, I think it's often both a surprise and not a surprise to family members. In other words, they've actually been seeing their loved one often get weaker and more dependent, for example, or often have a symptom, pain for example. But they've been experiencing this more than we sometimes realize.
And we're now seeing it a moment in time, happen in the hospital for someone like me. So I think to give them a sense of what can lie ahead and what might lie ahead, number one. Number two, to talk about the other kinds of support we might be able to offer or hope we can offer, whether in the form of home hospice or other home services. I think to be available. We as a palliative care team will sometimes call our patients who have been discharged, even though they're getting the services of another hospice, and just to check in to see how they're doing.
And we, you know, hear a lot of things that, "The hospice is wonderful, but they're not coming often enough." "The hospice is wonderful, they're coming just the right amount." "I'm still confused about that medication that you suggested." So just that act of checking in can also be I think an important one. >> Is there a role also for screening caregivers for, you know, like development of depression or something like that, or are there any red flags that you look for, and if you find anything suggestive of depression or burnout, what are typically the next steps?
>> Yeah. And that gets at, you know, the issue of sort of we typically think of the patient as our patient, and the family as a family, and well how do we figure that one out? And I think that's hard because we're I think often not the family members' physician or professional caregiver. So I think there might be a role for screening family members. It's not something we typically do. And it will be interesting to think about what it will be like to do that on a regular basis. And I don't know the answer to that question, and I could imagine two different types of screening.
One is about sort of risk for depression or current depression, other things like that. And the other is sort of screening for different levels of competence around some of the caregiving activities. I think both could be very valuable. I think that when you do see something like that, and find something like that in a family member, I think, you know, without making him or her your patient, expressing your concern and asking them if they do have a current physician or other care provider that you can at least be in touch with to express that concern, I think it's probably not realistic or even appropriate to start taking on the care of each patient's loved one, because as I mentioned before, that can be a complicated constellation of people.
But in the course of, you know, being in touch with them as a physician, whether in the hospital or other setting, there will be things you'll notice, as you're alluding to and I think that expressing your concern, asking if they have their own professional caregiver, and then asking if it's okay for you to be in touch with that person, if need be. >> Okay, is there anything else that you would like to tell our listeners about supporting caregivers at the end of life? >> I guess the major thing is sort of where we started, just the -- I think the very act of being aware of families, being aware of how complicated they are at baseline, and being aware of all the myriad tasks that they're asked to do, I think is a huge step for all of us, and often one that we might not do as well as we can.
>> Thank you, Dr. Hauser, for taking the time to speak with us. You've been listening to Chapter 28, "Physician Opportunities to Support Family Caregivers at the End of Life", from JAMAevidence "Care to Close of Life". This is Christopher Muth, Editor at 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