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Margot B. Kushel, MD, discusses end-of-life care for homeless patients.
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Margot B. Kushel, MD, discusses end-of-life care for homeless patients.
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[ Music ] >> This is Christopher Muth, editor at JAMA, and I'm interviewing Dr. Margot Kushel, who wrote a chapter entitled End-of-Life Care for Homeless Patients, in JAMAevidence Care at the Close of Life. >> Thanks for having me. >> Could you please tell us a little bit about yourself? >> I'm a professor of medicine at UCSF and I direct the UCSF Center for Vulnerable Populations as well as the new UCSF Benioff Homelessness and Housing Initiative.
>> Could you tell us what exactly is chronic homelessness? How is it defined? And how often do people who are homeless become chronically homeless? >> Sure. So homelessness is defined by something called the HEARTH Act, which basically means that if you're homeless, you're someone who has no usual place to stay, such that you're living in something like the outdoors or a bus shelter or an emergency shelter, or someone who is at high risk of losing their housing in the next 14 days.
Chronically homeless also has a specific definition. To be considered chronically homeless, you have to have been homeless either for more than a year or have had four or more episodes of homelessness in the prior three years, which add up to more than a year. And alongside both of those time definitions, you have to have a disabling condition. We don't really know exactly how many people who become homeless go on to chronic homelessness, but we think it's something like 20%.
At any given time, though, about half of people who experience homelessness are chronically homeless just because people who are chronically homeless are homeless for so much longer and therefore have more risk of being found in any cross-sectional survey. >> I see. And in terms of the impact on health, in general terms, are there ways just to think about the various ways that chronic homelessness affects health? >> Sure. So homelessness in general of any length or any source has devastating effects on health, but people who experience chronic homelessness had by far the worst outcomes.
Both because people who are chronically homeless tend to have more disabilities to begin with -- and that's one of the reasons why they meet the definition -- but also because extended times without regular access to housing has really devastating effects on health and wellbeing. >> And then specifically at the end of life, what are some of the challenges that homeless people face? >> Being homeless at the end of life is really tragic and an extraordinarily difficult circumstance.
One thing to note that among single adults who are homeless, which takes away homeless youth or adults or children who live in homeless families, among single adults, about half now are 50 and older. And we know that for people who experience homelessness who are 45 and over their most common reasons for death mirror that that we find in the general population, meaning cardiovascular disease and cancer but they just happen about 20 years earlier. We are seeing more and more people who are experiencing homelessness while they're experiencing severe chronic conditions like cardiovascular disease or experiencing cancer.
And really, having cancer or end state cardiovascular disease at the end of life or really any end-stage condition while homelessness creates an impossible challenge in so many ways. It becomes very hard. You know, when we think about palliative care and the need to focus on symptoms and quality of life, it becomes really difficult when the most basic fundamental needs that people have -- meaning a safe place to sleep, access to food -- aren't met.
And then you add these additional challenges, it's extraordinarily difficult to get to medical care and receive medical care. It's extraordinarily difficult to store medications. It's almost impossible to get things like oxygen or other treatments that may alleviate suffering. And then you add to that just the existential despair that people feel -- the shame, stigma, loneliness, disconnection from family and friends, regret about life. We found that all of these things are heightened in people who experience homelessness.
So experiencing homelessness at the end of life creates an almost absurd condition marked by suffering and numerous challenges. And unfortunately, we're seeing it all the more often. >> Specifically in terms of housing, which I think is something a lot of physicians do not know much about, what are the typical shelter or housing options that are often available? And do any of these help facilitate end-of-life care in any way?
>> You know, the good and bad news is that specifically for people who are experiencing chronic homelessness -- so this is the long-lasting homelessness associated with disabling conditions -- there is, in fact, a standard of care that's been endorsed now by the federal government for about the past seven years as a primary means to house this population. It has shown incredible success, meaning that permanent supportive housing is able to successfully house about 85% of people who enter.
And it's really geared towards those with the most severe disabling conditions. What Housing First or permanent supportive housing means is that people are offered housing that is subsidized. Subsidized housing generally means that the tenant pays 30% of their household income on rent. So if you make no income, you pay nothing. And if you make, let's say, $1,000 a month, you might pay $300 a month, along with supportive services that are voluntary.
So this means that there are an array of services that go along with the housing. Things like medical care, nursing care, psychiatric care, subsidies treatment, case management, food services, and the like but that these services are given voluntarily, meaning that there's no requirement that someone engage, let's say, in substance use or mental health treatment to receive this housing. The great news is that permanent supportive housing works really effectively to house even those with the most severe disabilities.
The difficult news is there is a limited supply of it. Places like the Veterans Administration have done a much better job through HUD VASH funding of making the service widely available. But in most areas of the country, even though we know it works, we've not been able to build it to scale to meet the match. In permanent supportive housing, one could, for instance, receive palliative care or even hospice services. Although I would say that permanent supportive housing providers throughout the country are struggling a little bit with how to make this happen as a population ages.
Some of the things that are complicated is that many of the people who experience chronic homelessness don't have family caregivers who could be the primary caregiver with hospice. So that is one option. Other options that people who experience chronic homelessness have are emergency shelter. This is not housing. And people who stay in emergency shelters are not considered housed. Emergency shelters are usually congregate living facilities. In some places you can actually get a bed for three or nine months or whatever it is, although many places you need to lottery in separately every night.
And importantly in most shelters, people need to leave during the day. This makes them an inadequate response to chronic homelessness and certainly inadequate response to care at the end of life although, arguably, it's better than living outside. Some other options include medical respite. Respite is a concept of shelter aligned with some services for people who are too sick to be outside but too healthy to be in a hospital.
So these can be things like shelters that have nursing staff. Again, medical respites are usually time-limited. They are not a source of housing and they are not usually adequately staffed to provide end-of-life cares. But again, likely better than the alternatives of staying on the street. >> Another major issue is that patients are able to get the medications that they need and then able to take them when it's recommended that they be taken. What type of strategies are there to help with medication adherence for homeless patients?
>> Yeah. This is really a huge issue that healthcare providers may not be aware of which is that people who experience homelessness routinely have things stolen from them. It's such a common experience as to be almost normative. And so you have to assume that any medications that you may give may well be stolen. This is obviously a particular problem for things that have a high street value, such as medications that we may use in end-of-life care, like opioid medications.
The issue is also that depending on the person who experiences homelessness, they may face financial barriers to even obtaining medicine. In areas of the country where there has been expansion of Medicaid, most people experiencing homelessness should be eligible to get Medicaid and therefore have some coverage for their medications. But in about half of the states Medicaid has not been expanded. And so people who experience homelessness tend to have a very high rate of uninsurance and therefore can't even obtain medications in the first place.
And then you add additional problems, like if there's medication that needs to be taken with food, people may not have adequate access to food. So you can see that providing end-of-life care for people who experience homelessness is extraordinarily difficult. One thing that we recommend is to give small amounts of medicine and to come up with a good way to replace them. So for instance, to find a way that you can dispense medications a week at a time and arrange with the patient to go to their pharmacy or to come to your office on a weekly basis and pick up the medicines.
If that is something that the patient is well enough to do, this then minimizes the costs of loss of medication if it gets stolen. Although, obviously, it's a barrier to taking medications because someone who's at end of life may not feel up to going every week to pick up their medicines. Other things we recommend is trying to use medicines that are easy to take, have once daily dosing. The use of opioid or pain medications presents a whole other problem. But because it's difficult doesn't mean that they shouldn't be used when they're indicated.
>> Yeah. And so you mentioned opioids. And I think in particular at least some persons who are homeless have addiction. How can addiction complicate this care near the end a life? And are there any specific things, you know, that clinicians can do so that they are sure that they're treating a patient's pain adequately in the setting of cancer or something else while avoiding any of the complications as best they could related to addiction? >> Certainly addiction is common in people who experience chronic homelessness, more common than it is in the general population, for sure.
And addiction presents all sorts of problems. Addiction by its nature is a loss of control and it tends to make everything more difficult. But certainly at the end of life if someone is suffering and in pain, addiction is not a good reason to not treat somebody's pain, but it needs to be done in a more thoughtful way. Addiction can make it harder for people to stay in facilities like nursing homes or hospice facilities, which may be unprepared or unable to handle the needs of someone who faces addictive diseases.
We certainly have really good options to treat opioid use disorders, both in terms of methadone and buprenorphine, which is a medication that works to prevent cravings. Buprenorphine may or may not provide enough pain control. But methadone, used with care, can be used both to treat the opioid use disorder and to provide some pain controls. Although usually to provide adequate pain control needs to be used in divided doses. Opioid medicine should be used with care.
There should be careful tracking to make sure that the person's pain is in fact responding to it. And it should be used, again, usually given out in relatively small amounts, let's say a week's worth of treatment, to limit the harm that could be done to the person receiving it or to others if they divert it. Another really, really important principle is to avoid overdose. This is a concern for anybody, but is really a heightened concern for people who have addiction of any type because they may face a loss of control.
So we certainly always recommend the co-prescription of naloxone, which helps to reverse any overdoses, as well as training both the person who experiences homelessness and anyone who they may be in contact with with how to use the naloxone if it's needed. Mostly we would take a harm reduction approach, keeping in mind the principles that we have of palliative care, that the most important thing is to reduce suffering. And the way to know that your treatment is working is if it really did reduce suffering.
If the treatment is not reducing suffering, then it's probably not a good choice. But at the end of life, if someone has extreme pain, it would be wrong to deny them treatment that could reduce their suffering. >> Yeah. That's an important point. I imagine that also patients who are experiencing homelessness might be less likely to have friends or family members who can participate in medical decisions if the patient were to lose decision-making capacity. So in light of that, can you talk a little bit about the importance of obtaining advanced directives in this patient population and any of the challenges that you might come across in doing so?
>> Sure. That's a really important point. While not every person who experiences chronic homelessness is un-befriended or lacking in friends or family, a much higher percentage are than the general population. Many may have lost ties to their family and may have a lot of life regret and deep shame about this. And so it's really important when working with people who experience homelessness, whether or not they're at the end of life, to start to engage in advanced care planning, which we really think of that as a process that takes place over time, where advanced directives are a really important part of it but not the only part.
We recommend that these discussions begin as early as possible and that they begin before someone has an end-of-life or terminal illness, if that's possible. It's important to normalize the need for advanced care planning and to recognize that many people who experience chronic homeless have had some negative experiences with that. Death is so common for people who experience homelessness that many of them have seen friends or loved ones die while homeless.
And that that's really important to acknowledge and to acknowledge people's fears of it. It's really important to bring this up and to first not assume that someone doesn't have someone who could be a surrogate decision maker. In studies that we've done of older homeless adults, we found that over half actually have a potential surrogate, but that healthcare providers have not asked them and had not tried to elicit this information. So the first thing is to not assume that people don't have a surrogate but to in fact ask and ask in an as nonjudgmental way as possible and to remind people that that surrogate doesn't have to a family member.
It could be a loved one or a close friend or somebody else that they know. If, however, the person explains to you that they really don't have a surrogate, it's important to make sure that they know that that doesn't mean that they can't state what their values are. And it's really important to elicit their values. We found in our research on advanced care planning and homeless adults that many have deep distrust of the medical system and fear that their wishes will not be followed no matter what they say.
So it's important to both reassure them that they will but also to really make sure their wishes are followed. If people do not have a surrogate, it's important to let them know that their voice can be heard through something like an advanced directive. And it's also important to not worsen their feelings of shame and distress over not having it. We have found that people who experience homelessness have a very high rate of life regret. So things like life review may be particularly painful for this population, who may feel that they've made grievous errors and feel terrible about that.
If someone does identify a surrogate, it's really important that we work together with the person who is experiencing homelessness to get in touch with that surrogate and to empower the person who's experiencing homelessness with the skills and the tools that they need to discuss their wishes. We found a few other things in our research. For instance, we found that people who experience homelessness actually have an interest in making sure that certain people aren't told of their death. That was one of the things that came out, is that people may feel like they have had bad relationships with their family and they are afraid that that family member will be contacted and used as a surrogate against their will.
So it's actually important to elicit this as well because we might ordinarily turn to a sibling or a parent or a child, and we need to know if that would go against the wishes of the person who experiences homelessness. And then we hear many fears, fears of things like what will happen to pets who are often really beloved members of the family of people experiencing homelessness, concerns about how their body will be honored.
And many concerns about dying alone and unrecognized. And it's important, even if there's no one else, to tell our patients who experience homelessness that we will remember them and honor them and to share with them the impact that knowing them has had on our lives. Because certainly that adds to the existential despair that people feel if they feel like their lives are meaningless or that they won't be remembered. >> Now can you also talk a little bit about the role of other people in the healthcare team like social workers, discharge planners, case managers, and sort of the things that they can do to help facilitate things near the end of life for patients who are homeless?
>> Absolutely. In all cases, it's really important that we work with our healthcare team, but this is probably never as important as it is when we work with people who are experiencing homelessness, where we really need everyone to be part of the conversation. Social workers often have deep experience in terms of what the community resources are and deep knowledge about how to access those resources, as well as special training in talking to people who experience homelessness about their despair and other things.
So certainly everybody who experiences homelessness should have access to a social worker. Discharge planners might have access to resources. For instance, many house systems now are funding respite beds or paying for people who experience homelessness to have some sort of housing or at least shelter or resource when they leave care. So that's another really important part of the team. Other important parts of the teams are case managers. Many but not all people who experience homelessness have a case manager, or someone really whose job it is to advocate for the patient and to make sure they get the resources and someone who may be able to go out into the field and visit them where they're at.
If the patient doesn't have a case manager, it would be really good to work with your community's resources to identify someone. Many cities now have street outreach teams or teams of case managers and social workers or lay providers who go out and meet with people where they're at, whether it be on the street or in a shelter. Really important to engage them and let them know what's going on. Other key members of the team may be folks like legal services, who may help advocating for a client at the end of life to stay in their housing or to obtain housing or do other important things.
So really it's always important to work with a multidisciplinary team, but perhaps never as important as when someone is experiencing homelessness. >> Great, thank you. Is there anything else that you'd like to mention to the listeners? >> I think it's really important to realize that homelessness, despite our efforts, is increasing across the country. Many cities just recently reported their point in time counts, particularly on the West Coast, and found distressing increases.
This is really a side effect of the lack of affordable housing in our communities. But it's important to realize that we aren't powerless and we as physicians have to have a voice in this problem. It's really just such a tragedy that people are experiencing homelessness at all, but that people are living outside on the streets or in emergency shelters facing the end of their lives is really an unbearable situation. And I hope that physicians will recognize their role in doing more than just managing this problem but in having a voice to try to end it as well.
>> Thank you, Dr. Kushel, for taking the time to speak with us. You've been listening to Chapter 34 End-of-Life Care for Homeless Patients, from JAMAevidence Care at the Close of Life. This is Christopher Muth, editor at JAMA. Thanks for listening to this JAMAevidence podcast. [ Music ]
Segment:0 .
[ Music ] >> This is Christopher Muth, editor at JAMA, and I'm interviewing Dr. Margot Kushel, who wrote a chapter entitled End-of-Life Care for Homeless Patients, in JAMAevidence Care at the Close of Life. >> Thanks for having me. >> Could you please tell us a little bit about yourself? >> I'm a professor of medicine at UCSF and I direct the UCSF Center for Vulnerable Populations as well as the new UCSF Benioff Homelessness and Housing Initiative.
>> Could you tell us what exactly is chronic homelessness? How is it defined? And how often do people who are homeless become chronically homeless? >> Sure. So homelessness is defined by something called the HEARTH Act, which basically means that if you're homeless, you're someone who has no usual place to stay, such that you're living in something like the outdoors or a bus shelter or an emergency shelter, or someone who is at high risk of losing their housing in the next 14 days.
Chronically homeless also has a specific definition. To be considered chronically homeless, you have to have been homeless either for more than a year or have had four or more episodes of homelessness in the prior three years, which add up to more than a year. And alongside both of those time definitions, you have to have a disabling condition. We don't really know exactly how many people who become homeless go on to chronic homelessness, but we think it's something like 20%.
At any given time, though, about half of people who experience homelessness are chronically homeless just because people who are chronically homeless are homeless for so much longer and therefore have more risk of being found in any cross-sectional survey. >> I see. And in terms of the impact on health, in general terms, are there ways just to think about the various ways that chronic homelessness affects health? >> Sure. So homelessness in general of any length or any source has devastating effects on health, but people who experience chronic homelessness had by far the worst outcomes.
Both because people who are chronically homeless tend to have more disabilities to begin with -- and that's one of the reasons why they meet the definition -- but also because extended times without regular access to housing has really devastating effects on health and wellbeing. >> And then specifically at the end of life, what are some of the challenges that homeless people face? >> Being homeless at the end of life is really tragic and an extraordinarily difficult circumstance.
One thing to note that among single adults who are homeless, which takes away homeless youth or adults or children who live in homeless families, among single adults, about half now are 50 and older. And we know that for people who experience homelessness who are 45 and over their most common reasons for death mirror that that we find in the general population, meaning cardiovascular disease and cancer but they just happen about 20 years earlier. We are seeing more and more people who are experiencing homelessness while they're experiencing severe chronic conditions like cardiovascular disease or experiencing cancer.
And really, having cancer or end state cardiovascular disease at the end of life or really any end-stage condition while homelessness creates an impossible challenge in so many ways. It becomes very hard. You know, when we think about palliative care and the need to focus on symptoms and quality of life, it becomes really difficult when the most basic fundamental needs that people have -- meaning a safe place to sleep, access to food -- aren't met.
And then you add these additional challenges, it's extraordinarily difficult to get to medical care and receive medical care. It's extraordinarily difficult to store medications. It's almost impossible to get things like oxygen or other treatments that may alleviate suffering. And then you add to that just the existential despair that people feel -- the shame, stigma, loneliness, disconnection from family and friends, regret about life. We found that all of these things are heightened in people who experience homelessness.
So experiencing homelessness at the end of life creates an almost absurd condition marked by suffering and numerous challenges. And unfortunately, we're seeing it all the more often. >> Specifically in terms of housing, which I think is something a lot of physicians do not know much about, what are the typical shelter or housing options that are often available? And do any of these help facilitate end-of-life care in any way?
>> You know, the good and bad news is that specifically for people who are experiencing chronic homelessness -- so this is the long-lasting homelessness associated with disabling conditions -- there is, in fact, a standard of care that's been endorsed now by the federal government for about the past seven years as a primary means to house this population. It has shown incredible success, meaning that permanent supportive housing is able to successfully house about 85% of people who enter.
And it's really geared towards those with the most severe disabling conditions. What Housing First or permanent supportive housing means is that people are offered housing that is subsidized. Subsidized housing generally means that the tenant pays 30% of their household income on rent. So if you make no income, you pay nothing. And if you make, let's say, $1,000 a month, you might pay $300 a month, along with supportive services that are voluntary.
So this means that there are an array of services that go along with the housing. Things like medical care, nursing care, psychiatric care, subsidies treatment, case management, food services, and the like but that these services are given voluntarily, meaning that there's no requirement that someone engage, let's say, in substance use or mental health treatment to receive this housing. The great news is that permanent supportive housing works really effectively to house even those with the most severe disabilities.
The difficult news is there is a limited supply of it. Places like the Veterans Administration have done a much better job through HUD VASH funding of making the service widely available. But in most areas of the country, even though we know it works, we've not been able to build it to scale to meet the match. In permanent supportive housing, one could, for instance, receive palliative care or even hospice services. Although I would say that permanent supportive housing providers throughout the country are struggling a little bit with how to make this happen as a population ages.
Some of the things that are complicated is that many of the people who experience chronic homelessness don't have family caregivers who could be the primary caregiver with hospice. So that is one option. Other options that people who experience chronic homelessness have are emergency shelter. This is not housing. And people who stay in emergency shelters are not considered housed. Emergency shelters are usually congregate living facilities. In some places you can actually get a bed for three or nine months or whatever it is, although many places you need to lottery in separately every night.
And importantly in most shelters, people need to leave during the day. This makes them an inadequate response to chronic homelessness and certainly inadequate response to care at the end of life although, arguably, it's better than living outside. Some other options include medical respite. Respite is a concept of shelter aligned with some services for people who are too sick to be outside but too healthy to be in a hospital.
So these can be things like shelters that have nursing staff. Again, medical respites are usually time-limited. They are not a source of housing and they are not usually adequately staffed to provide end-of-life cares. But again, likely better than the alternatives of staying on the street. >> Another major issue is that patients are able to get the medications that they need and then able to take them when it's recommended that they be taken. What type of strategies are there to help with medication adherence for homeless patients?
>> Yeah. This is really a huge issue that healthcare providers may not be aware of which is that people who experience homelessness routinely have things stolen from them. It's such a common experience as to be almost normative. And so you have to assume that any medications that you may give may well be stolen. This is obviously a particular problem for things that have a high street value, such as medications that we may use in end-of-life care, like opioid medications.
The issue is also that depending on the person who experiences homelessness, they may face financial barriers to even obtaining medicine. In areas of the country where there has been expansion of Medicaid, most people experiencing homelessness should be eligible to get Medicaid and therefore have some coverage for their medications. But in about half of the states Medicaid has not been expanded. And so people who experience homelessness tend to have a very high rate of uninsurance and therefore can't even obtain medications in the first place.
And then you add additional problems, like if there's medication that needs to be taken with food, people may not have adequate access to food. So you can see that providing end-of-life care for people who experience homelessness is extraordinarily difficult. One thing that we recommend is to give small amounts of medicine and to come up with a good way to replace them. So for instance, to find a way that you can dispense medications a week at a time and arrange with the patient to go to their pharmacy or to come to your office on a weekly basis and pick up the medicines.
If that is something that the patient is well enough to do, this then minimizes the costs of loss of medication if it gets stolen. Although, obviously, it's a barrier to taking medications because someone who's at end of life may not feel up to going every week to pick up their medicines. Other things we recommend is trying to use medicines that are easy to take, have once daily dosing. The use of opioid or pain medications presents a whole other problem. But because it's difficult doesn't mean that they shouldn't be used when they're indicated.
>> Yeah. And so you mentioned opioids. And I think in particular at least some persons who are homeless have addiction. How can addiction complicate this care near the end a life? And are there any specific things, you know, that clinicians can do so that they are sure that they're treating a patient's pain adequately in the setting of cancer or something else while avoiding any of the complications as best they could related to addiction? >> Certainly addiction is common in people who experience chronic homelessness, more common than it is in the general population, for sure.
And addiction presents all sorts of problems. Addiction by its nature is a loss of control and it tends to make everything more difficult. But certainly at the end of life if someone is suffering and in pain, addiction is not a good reason to not treat somebody's pain, but it needs to be done in a more thoughtful way. Addiction can make it harder for people to stay in facilities like nursing homes or hospice facilities, which may be unprepared or unable to handle the needs of someone who faces addictive diseases.
We certainly have really good options to treat opioid use disorders, both in terms of methadone and buprenorphine, which is a medication that works to prevent cravings. Buprenorphine may or may not provide enough pain control. But methadone, used with care, can be used both to treat the opioid use disorder and to provide some pain controls. Although usually to provide adequate pain control needs to be used in divided doses. Opioid medicine should be used with care.
There should be careful tracking to make sure that the person's pain is in fact responding to it. And it should be used, again, usually given out in relatively small amounts, let's say a week's worth of treatment, to limit the harm that could be done to the person receiving it or to others if they divert it. Another really, really important principle is to avoid overdose. This is a concern for anybody, but is really a heightened concern for people who have addiction of any type because they may face a loss of control.
So we certainly always recommend the co-prescription of naloxone, which helps to reverse any overdoses, as well as training both the person who experiences homelessness and anyone who they may be in contact with with how to use the naloxone if it's needed. Mostly we would take a harm reduction approach, keeping in mind the principles that we have of palliative care, that the most important thing is to reduce suffering. And the way to know that your treatment is working is if it really did reduce suffering.
If the treatment is not reducing suffering, then it's probably not a good choice. But at the end of life, if someone has extreme pain, it would be wrong to deny them treatment that could reduce their suffering. >> Yeah. That's an important point. I imagine that also patients who are experiencing homelessness might be less likely to have friends or family members who can participate in medical decisions if the patient were to lose decision-making capacity. So in light of that, can you talk a little bit about the importance of obtaining advanced directives in this patient population and any of the challenges that you might come across in doing so?
>> Sure. That's a really important point. While not every person who experiences chronic homelessness is un-befriended or lacking in friends or family, a much higher percentage are than the general population. Many may have lost ties to their family and may have a lot of life regret and deep shame about this. And so it's really important when working with people who experience homelessness, whether or not they're at the end of life, to start to engage in advanced care planning, which we really think of that as a process that takes place over time, where advanced directives are a really important part of it but not the only part.
We recommend that these discussions begin as early as possible and that they begin before someone has an end-of-life or terminal illness, if that's possible. It's important to normalize the need for advanced care planning and to recognize that many people who experience chronic homeless have had some negative experiences with that. Death is so common for people who experience homelessness that many of them have seen friends or loved ones die while homeless.
And that that's really important to acknowledge and to acknowledge people's fears of it. It's really important to bring this up and to first not assume that someone doesn't have someone who could be a surrogate decision maker. In studies that we've done of older homeless adults, we found that over half actually have a potential surrogate, but that healthcare providers have not asked them and had not tried to elicit this information. So the first thing is to not assume that people don't have a surrogate but to in fact ask and ask in an as nonjudgmental way as possible and to remind people that that surrogate doesn't have to a family member.
It could be a loved one or a close friend or somebody else that they know. If, however, the person explains to you that they really don't have a surrogate, it's important to make sure that they know that that doesn't mean that they can't state what their values are. And it's really important to elicit their values. We found in our research on advanced care planning and homeless adults that many have deep distrust of the medical system and fear that their wishes will not be followed no matter what they say.
So it's important to both reassure them that they will but also to really make sure their wishes are followed. If people do not have a surrogate, it's important to let them know that their voice can be heard through something like an advanced directive. And it's also important to not worsen their feelings of shame and distress over not having it. We have found that people who experience homelessness have a very high rate of life regret. So things like life review may be particularly painful for this population, who may feel that they've made grievous errors and feel terrible about that.
If someone does identify a surrogate, it's really important that we work together with the person who is experiencing homelessness to get in touch with that surrogate and to empower the person who's experiencing homelessness with the skills and the tools that they need to discuss their wishes. We found a few other things in our research. For instance, we found that people who experience homelessness actually have an interest in making sure that certain people aren't told of their death. That was one of the things that came out, is that people may feel like they have had bad relationships with their family and they are afraid that that family member will be contacted and used as a surrogate against their will.
So it's actually important to elicit this as well because we might ordinarily turn to a sibling or a parent or a child, and we need to know if that would go against the wishes of the person who experiences homelessness. And then we hear many fears, fears of things like what will happen to pets who are often really beloved members of the family of people experiencing homelessness, concerns about how their body will be honored.
And many concerns about dying alone and unrecognized. And it's important, even if there's no one else, to tell our patients who experience homelessness that we will remember them and honor them and to share with them the impact that knowing them has had on our lives. Because certainly that adds to the existential despair that people feel if they feel like their lives are meaningless or that they won't be remembered. >> Now can you also talk a little bit about the role of other people in the healthcare team like social workers, discharge planners, case managers, and sort of the things that they can do to help facilitate things near the end of life for patients who are homeless?
>> Absolutely. In all cases, it's really important that we work with our healthcare team, but this is probably never as important as it is when we work with people who are experiencing homelessness, where we really need everyone to be part of the conversation. Social workers often have deep experience in terms of what the community resources are and deep knowledge about how to access those resources, as well as special training in talking to people who experience homelessness about their despair and other things.
So certainly everybody who experiences homelessness should have access to a social worker. Discharge planners might have access to resources. For instance, many house systems now are funding respite beds or paying for people who experience homelessness to have some sort of housing or at least shelter or resource when they leave care. So that's another really important part of the team. Other important parts of the teams are case managers. Many but not all people who experience homelessness have a case manager, or someone really whose job it is to advocate for the patient and to make sure they get the resources and someone who may be able to go out into the field and visit them where they're at.
If the patient doesn't have a case manager, it would be really good to work with your community's resources to identify someone. Many cities now have street outreach teams or teams of case managers and social workers or lay providers who go out and meet with people where they're at, whether it be on the street or in a shelter. Really important to engage them and let them know what's going on. Other key members of the team may be folks like legal services, who may help advocating for a client at the end of life to stay in their housing or to obtain housing or do other important things.
So really it's always important to work with a multidisciplinary team, but perhaps never as important as when someone is experiencing homelessness. >> Great, thank you. Is there anything else that you'd like to mention to the listeners? >> I think it's really important to realize that homelessness, despite our efforts, is increasing across the country. Many cities just recently reported their point in time counts, particularly on the West Coast, and found distressing increases.
This is really a side effect of the lack of affordable housing in our communities. But it's important to realize that we aren't powerless and we as physicians have to have a voice in this problem. It's really just such a tragedy that people are experiencing homelessness at all, but that people are living outside on the streets or in emergency shelters facing the end of their lives is really an unbearable situation. And I hope that physicians will recognize their role in doing more than just managing this problem but in having a voice to try to end it as well.
>> Thank you, Dr. Kushel, for taking the time to speak with us. You've been listening to Chapter 34 End-of-Life Care for Homeless Patients, from JAMAevidence Care at the Close of Life. This is Christopher Muth, editor at JAMA. Thanks for listening to this JAMAevidence podcast. [ Music ]
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