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Palliative care for adults experiencing homelessness

Palliative care for adults experiencing homelessness
Literature review current through: Jan 2024.
This topic last updated: Nov 21, 2023.

INTRODUCTION — In the United States, a person experiencing homelessness is defined as someone who lacks a fixed, regular, and adequate nighttime residence and who lives in a shelter or a place not designed for human habitation; a person at imminent risk of housing loss within the next two weeks; and a person fleeing from domestic violence with inadequate resources to obtain other permanent housing. An estimated 2.3 to 3.5 million people experience homelessness in a year. (See "Health care of people experiencing homelessness in the United States", section on 'Definition' and "Health care of people experiencing homelessness in the United States", section on 'Epidemiology'.)

Persons experiencing homelessness or homeless persons/people have a heavy burden of co-occurring medical illness, psychiatric problems, and substance use disorders, and they die at a higher rate and an earlier age than their housed peers [1-5]. Demographic trends among such individuals in the United States have mirrored nationwide population shifts, with larger proportions of individuals age 50 or older [6]. Persons experiencing homelessness and serious illness have the same fundamental needs for palliative care as housed individuals. Despite these facts, the experience of serious illness, suffering, and impending death among such individuals is complex and often poorly understood.

This topic will discuss palliative care for persons experiencing homelessness, reviewing the relevant literature in order to inform practical approaches to such patients with serious illness, and strategies to enhance their access to high-quality palliative care when needed. Other issues related to the medical care of homeless persons are covered separately. (See "Health care of people experiencing homelessness in the United States".)

PREMATURE MORTALITY IN PERSONS EXPERIENCING HOMELESSNESS — Individuals experiencing homelessness are at high risk for premature mortality across all adult age groups. Although external causes, such as homicide or unintentional injury (eg, drug overdose), are responsible for some of these deaths, natural causes represent a large proportion, such that palliative care can be offered to help ease suffering throughout the illness course.

Studies throughout the world, including Sweden, Australia, and the United States, consistently show that homeless persons experience a high illness burden and are at risk for early mortality. Across adult age groups, homeless individuals are three to four times as likely to die as housed individuals. Compared with housed individuals, whose average life expectancy in these countries approaches 80 years, the average age of decedents among chronically homeless individuals is between 42 and 52 [2,7]. While there is conflicting evidence as to whether homelessness eliminates the life expectancy differences between men and women, the preponderance of evidence suggests that young homeless women are at the greatest mortality risk compared with their housed peers [2,3]. Given the suggestion that the average age of some homeless cohorts has been increasing, so too may the average age of death [8]. (See "Health care of people experiencing homelessness in the United States", section on 'Mortality'.)

Most of the literature on mortality in homeless adults focuses on limited geographic areas, as in the following studies:

One retrospective study of more than 28,000 adults in one major metropolitan city in the United States who were seen in health care programs for homeless persons between 2003 and 2008 found a ninefold higher death rate in those 25 to 44 years old and a fourfold higher death rate in those 45 to 64 years old when compared with housed individuals living in the state at that time [4]. Compared with an earlier cohort studied from 1988 to 1993, drug overdose replaced HIV as the leading cause of death in this population, followed closely by cancer and heart disease.

A separate 10-year prospective observational study involved a cohort of 445 “rough sleepers,” characterized as a subgroup of the homeless population that avoids shelters and dwells chronically on the streets [9]. The mean age at the time of enrollment was 44 years, with a range of 18 to 81 years. Over a 10-year timespan, 134 (30 percent) of the cohort died. The mean age at death was 53 years, and 87 deaths (65 percent) occurred within a health care facility (ie, inpatient hospital, emergency department, nursing home). The all-cause mortality rate was nearly three times higher than that of a comparison group of homeless persons who slept primarily in shelters. Substance use disorder was the most common cause of death, followed by cancer, injuries, and heart disease.

Given these high levels of premature mortality in the homeless population, health care providers should be prepared to address end-of-life issues with patients at a younger age than is typical for housed individuals, especially if they are diagnosed with a chronic illness. Additionally, homeless individuals may be at risk for premature aging, with geriatric frailty syndromes (including memory loss, functional impairment, and falls) evolving up to 20 years earlier as compared with their housed counterparts [10].

As these studies suggest, although external causes of death (eg, homicide or unintentional injury) occur in this population, the majority die from complications of chronic medical illnesses, which may have an accelerated natural history due to complications of substandard living conditions, access to medical care, adherence, or other comorbidities. For this reason, many homeless individuals will likely develop palliative care needs at younger ages than housed individuals.

END-OF-LIFE CONCERNS OF PERSONS EXPERIENCING HOMELESSNESS — Individuals experiencing homelessness report many of the same concerns and priorities when approaching the end of life as housed individuals do [11]; however, they also report unique concerns, such as being unrecognized or undiscovered when they die, fearing what will happen to their bodies or belongings after they die, and worrying about both over- and under-treatment.

A review of a number of qualitative studies identified a number of unique issues and end-of-life experiences:

Exposure to death and dying, sometimes violent or traumatic in nature, is more common in the homeless population [12-15]. These experiences appeared to inform their views on death as “inevitable” and may have contributed to their disinterest in connecting with others.

Fears about dying alone go beyond simple lack of companionship; they include having their identity unrecognized at the time they are discovered or even having their body remain undiscovered for a prolonged period after they have died [12,15].

Some have concerns that they will receive either too much [16] or too little treatment [12,16] if unable to advocate for themselves.

Another concern is being unable to die in their preferred location [11]. Some voice preferences to die in a homeless shelter or medical respite facility, in familiar surroundings and with familiar staff. However these facilities may be inadequately staffed, or staff may feel inadequately prepared to provide end-of-life care [12] or to support clients with greater functional dependence. In addition, the facility may not allow for privacy (to avoid unsettling other clients), or hospice agencies may feel uncomfortable delivering care in such settings. (See 'Shelter- and respite-based hospice services' below.)

Others have fears related to what will happen to their belongings, pets, or bodies after death. Some worry that their deaths will not be memorialized or that they will be forgotten after internment or cremation [12,15].

A common theme among homeless persons is the experience of early losses [12]. In one focus group, this went beyond the death of loved ones (including family or friends) and encompassed losses of careers, income, health, and respect. Palliative care clinicians should be cognizant of these concerns and be prepared to address them in order to alleviate emotional suffering. (See 'Explore key psychosocial concerns' below.)

Preferences regarding resuscitation — Some studies suggest that individuals experiencing homelessness are more likely to request aggressive interventions following cardiac or respiratory arrest compared with other populations:

In one study, 229 men experiencing homelessness were interviewed regarding their resuscitation preferences [17]. Participants were asked whether they would want intubation with mechanical ventilation or cardiopulmonary resuscitation in their current health, if they were in a permanent coma, if they had severe dementia, or if they were confined to bed and dependent on others for all care. Compared with a cohort of attending physicians or with a cohort of patients with oxygen-dependent chronic obstructive pulmonary disease (COPD), homeless men were far more likely to state a preference for desiring all resuscitation attempts.

Another study that tested advance care planning (ACP) interventions among 262 homeless persons [18] found that of the 70 who completed advance directives (ADs), almost two-thirds wanted all possible life-sustaining treatment, even if they were actively dying or in a coma.

Similarly, in a Canadian study of 103 shelter residents who completed an AD with the assistance of a counselor, 94 percent desired full resuscitation attempts in the future [19].

None of these studies explored the reason(s) why a greater proportion of homeless patients with serious illness continue to request aggressive life-prolonging care. As stated above, qualitative studies of homeless individuals facing serious illness suggest that they fear both overtreatment and under-treatment if they were to lose decision-making capacity [16]. Some authors have speculated that requests to continue aggressive life-prolonging treatments may stem from a pervasive fear of abandonment, which overrides the coexisting desire to avoid hospitals and doctors whenever possible.

BARRIERS AND OBSTACLES TO PALLIATIVE CARE — The barriers to palliative care for homeless persons primarily relate to this population’s high burden of co-occurring medical illness, psychiatric conditions, and substance use disorders; other factors include a high symptom burden, lack of health insurance, mistrust of the health care system, lack of transportation, limited caregiver assistance, and the competing demands of finding food and shelter [20]. Many of these factors contribute to limiting their access to routine health care.

Limited access to health care — Homeless persons have higher rates of acute medical and psychiatric hospitalization and emergency department use compared with the general population. Few homeless persons receive routine primary care, let alone palliative care. In a study of patients with heart failure receiving care in the Veterans Affairs system, those experiencing homelessness were less likely to access palliative care than housed veterans [21]. (See "Health care of people experiencing homelessness in the United States", section on 'Health care utilization'.)

Difficulties in accessing palliative care for homeless persons primarily relate to this population’s special needs and limited access to the health care system. Examples of these barriers include:

Lack of health insurance – Without medical insurance or disposable income, homeless persons cannot afford the costs of care and medications. Prior to the implementation of the Affordable Care Act, a national network of advocates and health care providers, the National Coalition for the Homeless, reported that 70 percent of patients seen were uninsured [22]; however, in states which have used Medicaid expansion opportunities under the Affordable Care Act, the uninsured rate had dropped to 34 percent by 2018 [23].

Mistrust of the health care system [11,16,24] and fear of being mistreated due to the stigma of homelessness [11,25,26]. Homeless individuals may have been told they could not receive certain treatments because of their lack of housing, or they may have had the experience of trying to comply with unrealistic discharge plans while living on the streets [15].

Comorbid psychiatric illness – Many homeless individuals suffer from comorbid psychiatric illness that may contribute to skeptical attitudes toward institutions, fear of crowds, and intolerance of bureaucracy. Estimates of the prevalence of severe mental illness in the homeless population range from 20 to 40 percent, and substance use disorders are present in 30 to 50 percent [27,28].

Lack of transportation – Many homeless persons are not able to travel to and from medical clinics and/or health centers with the same ease as their housed counterparts, which limits their ability to access ambulatory care services.

Competing demands – The competing daily demands of finding food and shelter take priority over primary or specialty health care for most individuals [11,16].

Insufficient social support – Many homeless individuals lack consistent caregiver support, which may make tasks such as remembering to take medications or to travel to appointments more difficult as illnesses progress. It may also mean that they have difficulty fulfilling end-of-life wishes that require caregiver assistance, and they may die in institutional settings because they cannot access less restrictive options.

Difficulty accepting rigid health care structures

The rules and expected codes of conduct in mainstream health care settings can be difficult for homeless persons who are used to the freedom and independence of the streets and who might be struggling with a high burden of co-occurring medical, psychiatric, and substance use problems. Homeless individuals may also be reluctant to accept placement in health care facilities due to a desire to remain with partners or pets. Others may desire to continue using alcohol or illicit substances, behaviors that are rarely tolerated in health care settings [29].

Even when an inpatient palliative care or hospice setting might be most appropriate, placement can be challenging. Homeless persons are often ineligible for admission (due to, for example, concerns regarding ongoing substance abuse) or are asked to leave after violation of institutional rules, thus placing a considerable burden on shelters and community agencies to care for ill clients and shifting health care utilization to emergency and acute care settings [11,16]. At the same time, many psychiatric programs are reluctant to take patients with a significant burden of medical illness.

In terms of access to hospice services, many housed patients wish to die at home, and most of the innovations in the delivery of palliative and end-of-life care enable them to do so as long as there is a stable residence and dependable support system to oversee and deliver basic and sometimes not-so-basic palliative interventions. Unfortunately, this model of care does not lend itself well to caring for those who are homeless and displaced, and residential hospice is often not available. Although some hospice and home-based palliative care agencies will accommodate patients living in shelters or nontraditional housing situations, many will not [26]. (See "Palliative care delivery in the home".)

Difficulty estimating prognosis in the homeless population can result in missed opportunities for patients to be referred for palliative or hospice care, often due to the unpredictability of medication adherence, substance use, or other stressors [30,31].

Complex symptom management — Some evidence suggests that homeless individuals with serious illness may experience an even greater symptom burden than their housed peers. In a small study of seriously ill residents of a medical respite facility in the United States, a large proportion of individuals nearing the end of life experienced pain, anxiety, paresthesias, lack of energy, sadness, difficulty concentrating, irritability, and cough. In this study, the number of symptoms experienced by homeless individuals exceeded the reported symptom burden in other studies of patients experiencing HIV or cancer [32].

Managing symptoms among persons experiencing homelessness may be challenging for several reasons, including the following:

Comorbid substance use disorders – Substance use disorders can complicate the management of pain, anxiety, and other end-of-life symptoms. Some studies suggest that homeless individuals may underreport substance use due to concerns about discrimination from health care providers [33]. Such nondisclosure can impede symptom management, as patients with a history of exposure to illicit drugs and/or alcohol may have higher pain thresholds and may have developed tolerance to entire classes of agents commonly used in palliative care. Likewise, a history of substance use may increase the risk for diversion or other aberrant drug-related behaviors. (See "Opioid use disorder: Epidemiology, clinical features, health consequences, screening, and assessment", section on 'Risk factors'.)

Difficulty accessing controlled substances - Controlled substances, such as opioids, can be particularly problematic. When prescribed, this population may have difficulty securing or accessing controlled substances in nontraditional settings (eg, homeless shelters or living outdoors) [33]. (See 'Pain management' below.)

Limited access to routine healthcare - Other palliative treatments may be particularly complicated when routine follow-up is required. Many homeless persons lack a mailing address or consistent access to a telephone, greatly limiting the ability of health centers to monitor and support them between visits. In this context, serial visits for symptom management (or palliative treatments such as chemotherapy and radiation) can be very challenging.

Limited access to safe places to stay during the daytime and bathroom facilities - Although many patients with serious illness spend increasing amounts of time at home or in bed, homeless individuals may have difficulty finding places to rest undisturbed during the daytime without special permission from a health care provider. Individuals who live outdoors have limited access to bathroom facilities and may have difficulty adhering to medication regimens that lead to excessive urination or frequent bowel movements. Particularly for patients with heart failure or end-stage liver disease, this may lead to an accelerating pattern of hospitalizations as the disease progresses. (See 'General issues' below and "Palliative care for patients with advanced heart failure: Indications and systems of care" and "Palliative care for patients with end-stage liver disease", section on 'Disease trajectory and estimating prognosis'.)

Challenges accessing oxygen - Similarly, treatment of dyspnea with oxygen can be problematic in this population. Patients are often unable to consistently access electricity or to have oxygen concentrators, such that they can only use portable oxygen tanks. Access to durable medical equipment is problematic, as patients often need to have a fixed address and the complex paperwork involved often requires assistance from health care providers. (See 'Management of common symptoms' below.)

Advance care planning — Homeless individuals are at risk of receiving care at the end of life that is inconsistent with their preferences, should they face a decision at a time they lack decisional capacity. For this reason, they should be encouraged to complete advance directives (ADs). Barriers to advance care planning (ACP) in the homeless population include lack of continuity with providers, an inability to identify surrogate decision-makers, or, in some patients with cognitive or psychiatric disorders, difficulty with hypothetical, future-oriented decision making.

ACP is a complex process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of ACP is to help ensure that people receive medical care that is consistent with their values, goals, and preferences. The medical, legal, and ethical issues that are involved in ACP, including the role of surrogate decision-makers, are discussed in greater detail separately. (See "Advance care planning and advance directives".)

There is conflicting evidence regarding the engagement of homeless individuals in ACP. Although ACP is an important component of palliative care for individuals with a serious illness, there is some evidence that homeless individuals, health care professionals, and homeless advocates can be reluctant to engage in these discussions. Qualitative responses from health and social service providers suggest that homeless persons can adopt fatalistic attitudes that reference the “inevitability” of death and undercut the value of ACP [11,34]. Social service providers, who may have little experience with serious illness conversations, may feel that such discussions are outside of their scope of practice. In contrast to some homeless patients’ fatalistic attitudes, homeless advocates, whose role is to help improve homeless persons’ situations, may have difficulty recognizing when a client has entered the terminal phase of an illness [34]. Furthermore, insufficient or untimely communication between health and social service providers may result in delayed recognition of either functional decline or disease progression.

On the other hand, data from small qualitative studies suggest that this population actually considers ACP to be both acceptable and important [12,13]. One study of an ACP intervention among homeless persons [19] found several factors that were associated with completion of an AD: thinking about death almost daily, holding friends and family to be valuable, and knowing one’s wishes for end-of-life care (even if they have not been shared with anyone). Another study suggests that being able to identify at least one confidant, having three or more chronic conditions, and recent primary care visits were associated with greater odds of homeless older adults having ACP discussions [35].

Beyond the general acceptability of ACP, there may be additional barriers to the process in homeless individuals:

Severe mental illness and/or substance use disorders. Psychotic disorders and other disorganized thinking may make complex, future-oriented decision making challenging. Patients may have concrete thought patterns that limit the use of hypothetical future scenarios, or they may have paranoid ideation that limits their ability to effectively engage in decision-making.

Patients may be unable to identify surrogate decision-makers, or patients may not wish to engage their designated surrogate(s) until the end of life. (See "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

Limited continuity of care with health care professionals [36].

Difficulty communicating patients’ preferences across care settings. Given that homeless individuals may sleep in different locations, they may be hospitalized at different facilities over time, which presents challenges to care coordination and flow of information (including ADs). While housed individuals may have places to organize ADs or Physician Order for Life-Sustaining Treatment (POLST) forms, it may be more challenging for homeless individuals to consistently retain these documents. (See "Advance care planning and advance directives", section on 'Specific documents for health care decision-making'.)

STRATEGIES TO IMPROVE PALLIATIVE CARE FOR HOMELESS PERSONS — Much of the existing literature related to palliative care for homeless persons focuses on documenting their experiences rather than testing interventions to improve their access to high-quality palliative care [37]. There are some toolkits that health and social service professionals can use to address palliative care needs of homeless individuals [38,39]. A systematic review [40] found only six studies that reported on such interventions, which limited the authors’ ability to formulate evidence-based guidelines for this population. Nevertheless, existing qualitative studies point to a number of best practices in palliative care for homeless persons [20].

Education and collaboration between health care and social service providers — Studies of homeless advocates and health care providers suggest that there is a need for additional support and palliative care education for both homeless advocates and health care professionals who care for homeless individuals [11,16,26,41]. A pilot study of homeless shelter staff in the United Kingdom suggests that a two-day training in palliative care can improve work-related stress, knowledge, and confidence [42]. (See "Primary palliative care".)

Since both groups of professionals have different types of expertise, approaches to patient care, and practice settings, it becomes vitally important that these groups work collaboratively to coordinate the care of seriously ill homeless persons. Health care professionals can often more effectively address homeless patients’ mistrust of the health care system by partnering with trusted community providers, such as homeless advocates or case managers [43].

Explore key psychosocial concerns — As part of a palliative care assessment, providers should screen for issues related to food, shelter, communication, transportation, and money. In addition to broad assessments of patient goals, providers may wish to explore patients’ desires to reconnect with estranged friends or family and address concerns related to care and location at end of life, which often involves planning for transition to a higher level of care.

Psychosocial concerns — In addition to typical end-of-life concerns, homeless individuals often have unique challenges, which include access to safe shelter, food, transportation, and caregiver support. For this reason, health care professionals caring for homeless individuals with serious illness should explore the following issues [29]:

Shelter – Determine the places where the patient usually sleeps (eg, a shelter, outdoors, in a vehicle or abandoned building), whether safety is an issue, and whether staying with friends or family is a possibility. Keep in mind that many homeless persons will change locations where they sleep, especially as illness limits strength and mobility. This domain should be regularly reassessed throughout the patient’s treatment course.

Food – Food insecurity is commonplace for those living in shelters and on the streets, and this topic should be explored, including assistance with accessing Supplemental Nutrition Assistance Programs (food stamps) and locating nearby food banks. It can be particularly challenging to adhere to specific dietary restrictions (eg, renal or cardiac diet) or modified diet consistencies, without specific assistance.

Communication – Reliable access to a telephone for messages or texts is key for communication but often difficult for homeless persons. Free cell phone access can be explored through the Lifeline Access Program, which makes cell phones available to low-income Americans. Literacy is also important, and homeless patients should be asked about difficulty understanding written instructions regarding medications or appointments.

Transportation – Travel to scheduled appointments or urgent care is critical for continuity and accessibility of care, and adequate alternatives should be offered, such as public transportation passes or taxi vouchers.

Money – Inquire about sources of income (disability, social security, other), and determine if payment assistance will be needed for medical bills (eg, medication, office visit copays).

Issues around goals of care — In terms of goals of care, we recommend using open-ended questions to explore patients’ wishes and concerns regarding the future and their treatment-specific preferences, similar to strategies for housed patients. (See "Discussing goals of care".)

In addition, there may be more unique goals for the homeless population, which providers may want to explicitly explore:

Desire to reconnect with friends or family or to return to a past residence; if the patient does not desire to reconnect at the time of assessment, explore if they might want to do so in the future.

Desired location for end-of-life care. If the patient’s desired location for receiving end-of-life care is in a nontraditional setting (eg, outdoors, shelter, or medical respite facility), providers should explore the viability of these options and simultaneously prepare the patient for the possibility that they will require a higher level of care than what is feasible in such locations as the end of life approaches.

Making plans for what will happen to the person’s body or belongings after death and addressing concerns about dying alone.

Desire to maximize time with a pet or partner, both of which can be challenging in shelters, single room occupancy hotels, and medical facilities. For individuals with pets, explicit planning for pet adoption or care can be an important component of advance care planning (ACP).

For some individuals with comorbid severe mental illness, it may be particularly challenging to explore theoretical (or even likely) future events, due to psychotic thought content, disorganized thought processes, paranoid ideation, or trauma. In these cases, we recommend coordination with mental health providers and optimization of symptom management to the extent possible and accepted by the patient. Whether this is feasible or not, we recommend approaching goals of care from the perspective of what the patient’s hopes and worries are, rather than the concerns that the health care professional might have.

For patients with questionable decision-making capacity, we emphasize the identification of surrogate decision-makers or appointment of a guardian, and/or defining and confirming the stability of preferences and priorities over time (eg, prolonging life, maintaining freedom and independence, maximizing comfort or avoiding suffering). (See 'Homeless persons without decisional capacity' below.)

In exploring the goals of care of homeless patients, it is important not only to understand the overarching wishes or preferences but also to explicitly discuss the practicalities and feasibility of their choices for treatment options. As an example, a patient who expresses a wish to receive life-extending treatments may have difficulty tolerating prolonged stays in a medical facility, especially a medical intensive care unit. For this reason, after clarifying what a patient’s general wishes and preferences are, providers should provide concrete descriptions of what would be required or expected in order to bring wishes to fruition. Given that homeless individuals may have low health literacy or mental illness, providers should avoid jargon and consider using visual aids. We recommend involving primary care and mental health providers, case managers, patient navigators, homeless advocates, and trusted individuals (including friends and family), to the extent they are available in goals of care conversations with homeless patients.

Pain management — The approach to pain management as part of end-of-life care for homeless individuals can be quite challenging due to the high rates of substance use disorders. Many clinicians will not prescribe potentially addictive medications to patients with active substance abuse; still others fear jeopardizing sobriety among those patients who are in recovery. In addition, homeless persons are often reluctant to disclose the use of illicit drugs that may exclude them from care in a zero tolerance or abstinence system. (See "Health care of people experiencing homelessness in the United States", section on 'Substance use disorders' and "Health care of people experiencing homelessness in the United States", section on 'Medication prescribing'.)

An important point is that homelessness should not be viewed as a contraindication to the use of opioids, particularly for patients with pain in the setting of an advanced or terminal illness.

Any approach to pain management must be built on trust, including acceptance of the patient’s report of pain. As with patients who are not homeless, a comprehensive evaluation is required, including evaluation of the pain, an assessment for psychiatric symptoms, and substance use assessments, to inform an individualized approach to treatment predicated on harm reduction.

For patients with a history of substance use, special considerations apply. If the patient has an active drug or alcohol use disorder, expectations of complete remission may be unrealistic [16]. However, providers should explore individuals’ goals with respect to drug and alcohol use, as some may wish to achieve sobriety, while others may wish to continue using drugs and/or alcohol to assist with coping. If sobriety is one of the patient’s goals, referral to substance use treatment programs may be appropriate, depending on their availability and the patient’s prognosis. If there is the potential for relapse or in the setting of ongoing use of alcohol or other drugs, additional safety measures can be considered [29,44]. (See "Prescription drug misuse: Epidemiology, prevention, identification, and management", section on 'Identification and management' and "Cancer pain management: General principles and risk management for patients receiving opioids", section on 'Risk assessment and management for patients receiving opioids'.)

We recommend the following approach:

Set clear guidelines for patient responsibilities (for example, keeping scheduled follow-up appointments, taking medications as prescribed). Some providers have found utility in using pain agreements, developed collaboratively and signed by the provider and patient, to solidify these expectations. (See "Use of opioids in the management of chronic non-cancer pain", section on 'Opioid agreement/consent form' and "Cancer pain management: General principles and risk management for patients receiving opioids", section on 'Risk management'.)

Intermittently checking urine toxicology screens for the presence of prescribed substances and the absence of other substances (if determined that this is an important condition of ongoing opioid treatment). (See "Substance use disorders: Clinical assessment", section on 'Laboratory tests'.)

Prescribing small quantities of medications with frequent clinic visits to reassess for both appropriate dosing (given the potential for opioid tolerance, which may require rapid, closely monitored dose escalation) and patterns of misuse.

Some providers preferentially use long-acting opioids over short-acting opioids once appropriate dosing has been determined; however, it should be noted that providers disagree regarding the relative risk of misuse with long- versus short-acting opioids in at-risk patients [45]. (See "Management of acute pain in the patient chronically using opioids for non-cancer pain", section on 'Options for pain management'.)

Depending on the patient’s risk for opioid overdose, intranasal naloxone can be prescribed to treat unintentional overdoses. (See "Prevention of lethal opioid overdose in the community", section on 'Who should receive?' and "Cancer pain management: General principles and risk management for patients receiving opioids", section on 'Preventing lethal overdose'.)

If the patient receives methadone to treat opioid use disorder, providers will need to continue to assess whether the patient is still functionally able to visit the methadone clinic daily. For patients who have demonstrated stability and consistency in these programs, weekly pill supplies (“take homes”) may be feasible, as opposed to daily dosing in the clinic. (See "Opioid use disorder: Pharmacologic management", section on 'Buprenorphine: Opioid agonist'.)

Beyond the challenges of managing pain in patients with a history of substance use disorders, there are broader challenges for homeless patients regarding paying for and storing medications. Some suggested strategies for managing pain in this population include (see "Health care of people experiencing homelessness in the United States", section on 'Medication prescribing'):

Providing locked medication storage boxes to reduce the chance of theft to those living in shelters or whose residence may be easily entered. Another option, if this is not feasible, is to only provide small amounts of medications very frequently.

Investigate the copayment required for specific medications (eg, adjuvant pain medications, fentanyl patches) and verify the availability of prescribed opioids at local pharmacies to ensure that the patient has reliable access to prescribed medications.

For patients with difficulty managing medications, using bubble packs or medi-sets can help with adherence to scheduled medications.

Explore interest in and availability of nonpharmacologic integrative medicine approaches (eg, acupuncture, guided imagery, relaxation strategies). (See "Rehabilitative and integrative therapies for pain in patients with cancer" and "Approach to the management of chronic non-cancer pain in adults", section on 'Nonpharmacologic therapies'.)

Screen for and treat comorbid anxiety and depression symptoms; some patients with comorbid neuropathic pain symptoms and anxiety or depression may benefit from an antidepressant, such as a selective serotonin reuptake inhibitor or a serotonin norepinephrine reuptake inhibitor. (See "Pharmacologic management of chronic non-cancer pain in adults", section on 'Serotonin-norepinephrine reuptake inhibitors' and "Cancer pain management: Role of adjuvant analgesics (coanalgesics)", section on 'Antidepressants'.)

Other symptom management — Depending on the patient’s current living situation, typical treatments for other common symptoms should be explicitly discussed with the patient, as they may need to be adapted before they are acceptable and/or feasible. (See "Overview of managing common non-pain symptoms in palliative care".)

General issues — Typical palliative treatments for patients with serious chronic illnesses may be particularly challenging because of the lack of stable housing and access to food. Issues to consider include:

Access to bathroom facilities – Providers should ask patients about any concerns regarding taking diuretics, stool softeners, or osmotic laxative agents (eg, polyethylene glycol, lactulose) and explore their access to bathroom facilities. If possible, once-daily dosing of such medicines may make it easier for patients to accommodate increased urination or stooling. If frequent dosing cannot be avoided, providers may need to assist patients in finding a residence where they can more reliably access bathroom facilities.

Oxygen therapy – The lack of a stable residence can make oxygen delivery more complicated. Oxygen concentrators may not be feasible in shelter facilities or if the patient lives outdoors. When possible, providers should assist with direct delivery of portable oxygen tanks or work with the patient (and, if available, the patient’s case manager) to coordinate where the patient can pick up oxygen tanks. Patients will need to be educated about notifying providers when their oxygen supply is running low and about the risks of smoking near compressed oxygen.

Increased risk of hypoglycemia in patients on glucose-lowering medications – If a patient’s functional status has declined such that they have more difficulty accessing food or if the patient is experiencing anorexia, hypoglycemic medications should be closely monitored (or discontinued if safe) to prevent hypoglycemic episodes. (See "Palliative care: The last hours and days of life", section on 'Eliminating non-essential medications'.)

Dietary modifications – Homeless individuals may have difficulty controlling the types of food they can access, particularly if their functional status limits mobility. We recommend that providers partner with community organizations and social service providers to develop strategies to obtain consistent access to foods patients can tolerate.

Wound, ostomy, and catheter care – If patients are living outdoors or have significant comorbid mental illness or substance use disorders, it may be very difficult to manage indwelling catheters or ostomies or to perform regular dressing changes. For this reason, homeless patients may need to be in a medically supervised setting (eg, a skilled nursing facility, medical respite facility, or medically supported shelter facility) to maintain hygiene, get medical attention, and prevent secondary infection. Some medically supported shelter facilities will allow home health providers to visit patients in the facility, which can help support a patient’s goal to remain in the least restrictive setting. Similarly, it can be very helpful to engage community case managers, who can assist patients with attending necessary follow-up appointments for wound care, ostomy care, follow-up procedures, etc.

Coexisting mental illness – For patients with comorbid, particularly severe, persistent mental illness, close collaboration between medical and mental health providers is strongly encouraged, as management approaches for specific symptoms may need to be adjusted as the underlying medical illness progresses, and other medications may be introduced that alter the metabolism of the medications that are being used to manage the mental illness.

Positioning – Consistent positioning in an optimal position for comfort is difficult, particularly if an individual is living outdoors. If relevant to the underlying condition, the provider needs to address this with patients.

Management of common symptoms — Depending on the underlying illness, patients will experience a wide range of symptoms related to advancing disease. Typical palliative treatments for patients with serious chronic illness may be particularly challenging in the setting of homelessness and should be discussed explicitly with patients. Modifications may be necessary depending on the living situation. (See "Overview of managing common non-pain symptoms in palliative care".)

Some special symptom management considerations include:

Dyspnea – Common treatments for dyspnea in palliative care include oxygen therapy (if the patient is hypoxemic), diuretics, and opioids, all of which may present challenges in the homeless population. (See 'Pain management' above and "Assessment and management of dyspnea in palliative care" and "Palliative care for adults with nonmalignant chronic lung disease", section on 'Pharmacologic management of refractory dyspnea' and "Palliative care for patients with advanced heart failure: Decision support and management of symptoms", section on 'Dyspnea'.)

In particular, for hypoxemic patients, the lack of a stable residence can make oxygen delivery more complicated (see 'General issues' above). Some studies suggest that room air is just as helpful for patients with lower oxygen requirements (eg, 2 L/minute) [46]. The use of handheld or battery-operated fans can provide significant symptom relief in this patient population.

For individuals with chronic obstructive pulmonary disease (COPD), the use of nebulized treatments may also be challenging for patients residing outdoors or in shelters. However, the same effect can be achieved using inhalers if proper technique is used [47]. (See "Management of refractory chronic obstructive pulmonary disease", section on 'Optimizing inhaled therapies'.)

Constipation – Opioid medications are associated with an ongoing risk of constipation, so patients requiring opioids should receive prophylactic therapy to prevent constipation. Patients may be hesitant to take stool softeners or laxatives if they have inconsistent access to bathroom facilities, so providers should explore any concerns regarding using these medications. (See 'General issues' above and "Prevention and management of side effects in patients receiving opioids for chronic pain", section on 'Prevention'.)

Nausea – Providers should take a careful history for patients who complain of nausea to try to identify the underlying cause. Homeless individuals may have difficulty taking medications with food and have nausea triggered by some medications when taken on an empty stomach. Poor access to refrigeration or communal living may put homeless individuals at increased risk for food poisoning or other gastrointestinal infections. If opioid-dependent homeless individuals become less able to access pharmacies and methadone clinics, they may experience nausea as part of opioid withdrawal. (See "Assessment and management of nausea and vomiting in palliative care", section on 'Etiology and differential diagnosis'.)

In addition, providers should be aware that many common antiemetic medications (eg, ondansetron, metoclopramide) can prolong QT intervals. Particularly for patients who are maintained on neuroleptic medications for psychotic disorders (which can also prolong the QT interval), providers should use caution and monitor electrocardiograms (ECGs) routinely, depending on the clinical scenario and patient goals. (See "Acquired long QT syndrome: Definitions, pathophysiology, and causes".)

Confusion and agitation – Delirium is common in patients with advanced illness and has multiple causes. Homeless individuals may be at higher risk for sleep disturbance in nontraditional settings and may be at risk for withdrawal from prescribed psychotropic medications, drugs, or alcohol if they are unable to access them in the setting of functional decline. Agitation and aggressive behavior can be difficult to manage in communal settings and may result in removal from shelters or respite facilities. We recommend frequent assessments by medical and mental health providers to anticipate and treat these symptoms throughout a patient’s treatment course. (See "Approach to symptom assessment in palliative care", section on 'Delirium'.)

Fatigue – Homeless individuals living in shelters are subject to shelter rules, which often require clients to vacate the facility during the day. Providers can advocate for homeless patients to gain the ability to rest in the facility during the day by writing a “rest and recline” order. Providers may also consider prescribing durable medical equipment, such as wheelchairs, to enhance mobility. (See "Overview of fatigue in palliative care".)

Planning for future changes in care setting — In addition to discussions regarding treatment preferences, ACP for homeless individuals often must include planning for where and how they will receive care as functional status declines. Most homeless shelters cannot provide the level of support needed when patients become functionally dependent. (See 'Shelter- and respite-based hospice services' below and "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Short-term intensified services'.)

Beyond preferences for care, health care professionals should offer to assist homeless patients in the designation of a surrogate decision-maker in the event that they lose decision-making capacity. Patients can designate anyone (other than their direct health and social service providers, who cannot fulfill the role of a durable power of attorney for their patients/clients) to be a surrogate decision-maker. A family member is customarily chosen, but this may not be possible if family members are estranged. (See "Advance care planning and advance directives", section on 'Surrogate decision-makers' and "Legal aspects in palliative and end-of-life care in the United States", section on 'Surrogate decision makers'.)

Similar to the housed population, the rate of advance directive (AD) completion among homeless individuals is low. However, studies show that, with the right support, homeless persons successfully complete ADs:

In one study, 262 homeless persons recruited from several homeless service sites in one city were randomized to self-guided or counselor-guided support for completing ADs [18]. In this study, 13 percent of the individuals randomized to self-guided materials actually completed an AD, as compared with 38 percent of the counselor-guided group. Almost all patients named a family member as their surrogate decision maker (rather than a friend). Almost two-thirds wanted life-sustaining treatment, even if they were actively dying or in a coma.

Similarly, in a Canadian study of 103 shelter residents who completed an AD with the assistance of a counselor, almost two-thirds named a surrogate decision-maker, and 94 percent continued to desire full resuscitation attempts in the future [19]. (See 'Preferences regarding resuscitation' above.)

While ADs have been shown to increase the likelihood that patients’ wishes will be followed, the effectiveness of completing ADs in this population remains uncertain [40]. One study demonstrated that detailed treatment preferences of homeless individuals may be more likely to be documented in patients’ hospital charts for study participants who had completed an AD compared with those who did not complete an AD; however, this study required concerted efforts to proactively share participants’ ADs with all nearby hospitals [48].

One problem in this population is maintaining a copy of the AD so that documented wishes can be followed. Some states have piloted Physician Order for Life-Sustaining Treatment (POLST) registries and wider electronic medical record integration, which may improve communication of patients’ documented wishes; however, since homeless individuals in urban areas often receive acute care in hospitals and urgent care clinics, which do not participate in these systems, it remains important for homeless individuals with advanced serious illness to keep some form of documentation with them at all times to ensure that their wishes are followed, especially in settings that require urgent or emergency care. If keeping full-sized documents is problematic, wallet-sized information cards can be used to identify the location of an AD or the name of the designated surrogate.

Homeless persons without decisional capacity — Homeless persons who lack decisional capacity and who have never completed an advance directive still need a surrogate decision-maker. If the patient has not formally designated a Durable Power of Attorney for Health Care, a default surrogate will need to be identified. Usually, this person is a blood relative or close friend; unfortunately, homeless patients can be so isolated from their blood relatives that identifying a “default” surrogate decision maker (as is done routinely for incapacitated patients in the hospital) can be very difficult. Furthermore, some homeless individuals express mistrust of family members or default surrogate decision-makers, often in the context of estrangement for many years [16].

If no appropriate default surrogate decision-maker can be identified, state-specific policies dictate how medical decisions can be made. State policies vary widely in terms of the processes related to court-appointed decision-making. Additionally, the process of appointing a guardian can be long. Providers are well advised to address these issues long before high-risk individuals require complex medical decision-making.

Some states have developed special mechanisms for authorizing treatment decisions on behalf of these “unbefriended” or “unrepresented” patients. Unfortunately, such mechanisms are available in only a few states and often for only certain treatment decisions or certain patient populations. Otherwise, when no previously designated surrogate is available, it is sometimes necessary to petition a court to appoint a surrogate. A court-appointed surrogate is typically referred to as a “guardian” or “conservator.” After the appointment, the court is supposed to supervise and monitor the guardian’s choices on behalf of the patient to ensure that the patient is getting appropriate medical care. Because this entire process can be cumbersome and expensive, comparatively few surrogates are guardians. Legal issues surrounding surrogate decision-makers are discussed in detail elsewhere. (See "Legal aspects in palliative and end-of-life care in the United States", section on 'Surrogate decision makers' and "Advance care planning and advance directives", section on 'Surrogate decision-makers'.)

Although clinicians may feel uncomfortable making urgent decisions on a patient’s behalf, many homeless patients report a preference for their clinicians to make medical decisions, compared with court-appointed conservators [17]. However, providers should be cautioned that many states explicitly disqualify clinicians with direct responsibility for a patient or employees of the health care facility where a patient resides from serving as appointed or default surrogates.

Even when patients lack decision-making capacity, health care professionals should still attempt to assess their preferences for care. While these individuals may not be able to provide formal informed consent, their cooperation or “assent” is often necessary in order to successfully provide care. Preferences for care can sometimes be surmised through a review of a patient’s past behaviors and conversations with trusted community providers. Community-based providers (medical, mental health, social service) may have been able to develop greater rapport with patients over time and may be able to report on their past patterns of engagement with medical care, quality-of-life priorities, and potential emergency contacts or surrogates. By gathering this type of information, paired with evidence-based information regarding treatment efficacy and prognosis, health care professionals can attempt to guide court-approved decision-making.

For homeless persons with a history of mental illness, mental health providers can encourage them to complete psychiatric ADs to formalize their preferences and instructions for future treatment should they be determined to be suffering from a mental disorder that impairs their ability to make decisions or communicate with their health care providers. As a result, their psychiatric AD might be available through the mental health record and may similarly help to guide decision-making for incapacitated patients.

Improving access to care — There are few data to inform the provision of palliative care among homeless persons. However, a reasonable approach builds on the results of a qualitative study conducted with over 50 health and social services professionals involved with end-of-life care for homeless persons [49]. Interviews with homeless adults have suggested that approaches which prioritize providing care with dignity and respect and flexibility are important considerations [15]. Suggested best practices to improve palliative care services for homeless persons may include:

Embedding palliative care services in nontraditional health care settings. Examples of programs, which may accommodate both a harm reduction approach and end-of-life care, include supportive housing programs in which health care and social services are offered directly with a more stable living environment, medical respite facilities, and specialized programs in which palliative and end-of-life care can be delivered to persons who have no family or social supports. (See 'Palliative care programs specifically for homeless persons' below.)

Relaxed operating policies, including more pragmatic codes of conduct that recognize the high burden of co-occurring medical, mental health, and substance use disorders of homeless persons [20]. Harm reduction approaches accept that many homeless persons at the end of life may not be ready for abstinence from nicotine, alcohol, and other drugs [50,51].

Utilization of patient navigators who are familiar with homeless services in the community and who can connect persons to key services such as shelter-based clinics, community meals, and transportation [52].

Partnering with homeless services and harm reduction programs — As noted above, a major obstacle to palliative care for homeless persons has been the incompatibility of mainstream services with “street culture.” Restrictive or punitive policies toward the use of alcohol and/or illicit drugs in traditional palliative care settings can be a major obstacle to care for this disenfranchised population. (See 'Barriers and obstacles to palliative care' above.)

A study of 54 health and social services involved in palliative care for homeless persons in six Canadian cities found that harm reduction programs, such as methadone clinics, needle-exchange programs, and safe injection sites, often serve as an alternative health care system for homeless persons with substance use disorders [43]. Such programs can serve as a point of entry to palliative care programs. Partnerships between harm reduction programs and mainstream palliative care services can improve access and the quality of services for homeless persons who need palliative care services. Interviews with homeless advocates and social service providers consistently reference the need to provide primary palliative care education to staff who consistently work with this population yet may have limited knowledge about palliative care principles and local resources [26,53].

One model program in the Netherlands offered a three-tiered model of partnership and collaboration between palliative care specialists and social service providers, including consultations, multidisciplinary meetings, and trainings. Qualitative results suggested that the intervention improved the competence of all professionals involved, as well as the quality and timing of palliative care intervention [54].

Leveraging housing programs to improve access to home-based care — A lack of housing can create a barrier to receiving palliative or hospice care for individuals who are frail and unable to travel to appointments. (See 'Limited access to health care' above.) To address this problem, in the United States, federal funds are increasingly available for permanent supportive housing programs for vulnerable individuals who have lived chronically in shelters and on the streets.

Examples of housing programs include:

Housing First programs – These federally funded programs do not require sobriety or adherence to psychiatric medications prior to receiving housing. These housing units often include onsite or integrated health and social services. (See "Health care of people experiencing homelessness in the United States", section on 'Housing interventions'.)

Veterans Administration (VA) programs – Care of homeless veterans at the end of life can be substantially improved by facilitating access to appropriate housing [55]. Targeted initiatives to end veteran homelessness were initiated in 2010. A variety of programs are available through the United States Department of Housing and Urban Development and the VA. Providers caring for homeless veterans should investigate their eligibility for housing by contacting the nearest VA facility.

If homeless patients are able to be successfully placed in housing units, this can open access to home-based palliative and hospice care. Hospice or palliative care providers caring for patients in these settings need to be aware of the regulations of each housing facility. For example, some patients may be placed in “single room occupancy” units, which may prohibit caregivers from residing with the patient. If the patient has limited caregiver support in this setting, providers will need to work with the patient to develop a plan for moving to a higher level of care when caregiving needs outstrip what can be provided in the home.

Palliative care programs specifically for homeless persons

Mobile and shelter-based palliative care teams — Given that many homeless individuals have difficulty engaging with traditional care structures, some urban areas have developed specialized homeless outreach teams that help engage and provide medical care wherever the patient resides. Following recommendations from homeless advocates [11], some organizations have developed mobile palliative care teams to deliver specialist-level palliative care to patients wherever they reside. Examples of such teams include the Palliative Education And Care for the Homeless (PEACH) program in Toronto [56,57] and the Mobile Palliative Care for the Homeless program in Seattle [58]. Additionally, some shelters have partnered with palliative care specialists to provide care onsite, exemplified by a program in London, England [59].

Shelter- and respite-based hospice services — Although most shelters are inadequately staffed or organized to accommodate dying clients (eg, lack of 24-hour clinical staff or lack of private space for actively dying clients), some shelters have been able to make necessary adjustments to take on care of dying clients.

For those still living in shelters and on the streets, or for those formerly homeless individuals who are alone in housing with minimal or no social supports, medical respite care facilities have evolved as venues for palliative care. Medical respite care for homeless persons can include acute and post-acute care, pre- and postoperative care for day surgery and other procedures, rehabilitative and recuperative care, and palliative and end-of-life care. Respite care for homeless persons is an attempt to fill the gap in the continuum of health care services for those who are ill or injured and no longer require costly acute care hospitalization but are too fragile to withstand the rigors of life in shelters or on the streets. Respite programs now exist in over 60 United States cities, as well as in Sydney and Melbourne in Australia, and Leeds and London in England. For example, Boston’s Health Care for the Homeless’s Barbara McGinnis House is a 104-bed respite program that offers 24-hour medical and nursing care, including palliative and end-of-life care, specifically for homeless and marginally housed persons without family or other supports as they face death [60].

The Ottawa Inner City Health Project piloted a shelter-based hospice program for 28 homeless terminally ill adults, which demonstrated key outcomes like pain and symptom management, family reunification, as well as estimated 1.39 million dollars in end-of-life cost savings [51].

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care" and "Society guideline links: Medical care for homeless persons".)

SUMMARY AND RECOMMENDATIONS

Premature mortality – Homeless individuals, especially those who are young adults, are at high risk for premature mortality. (See 'Premature mortality in persons experiencing homelessness' above.)

End of life concerns – Homeless individuals report many of the same concerns when approaching the end of life as housed individuals; however, they also report unique concerns related to being unrecognized or undiscovered when they die, fears about what will happen to their bodies or belongings after they die, and worries about both over- and under-treatment. (See 'End-of-life concerns of persons experiencing homelessness' above.)

Barriers to palliative care – The barriers to palliative care for homeless persons primarily relate to this population’s high burden of co-occurring medical illness, psychiatric conditions, and substance use disorders; other factors include lack of health insurance, mistrust of the health care system, lack of transportation, limited caregiver assistance, and the competing demands of finding food and shelter. Many of these factors contribute to limiting their access to routine health care. (See 'Barriers and obstacles to palliative care' above.)

Key psychosocial concerns – As part of a palliative care assessment for homeless individuals, providers should screen for issues related to food, shelter, communication, transportation, and money. In addition to broad assessments of patient goals, providers may wish to explore patients’ desires to reconnect with estranged friends or family and address concerns related to care and location at end of life, which often involves planning for transition to a higher level of care. (See 'Explore key psychosocial concerns' above.)

Pain management – Pain management for homeless persons at the end of life can be especially challenging, but providers are encouraged to trust their reports of pain and address them accordingly. Homelessness should not be viewed as a contraindication to the use of opioids, particularly for patients with pain in the setting of an advanced or terminal illness.

Persons with substance use disorder – Special consideration should be taken when managing pain in patients with active or past substance use disorder, above and beyond measures taken to help ensure consistent access to medication for the homeless population. In the homeless population with comorbid substance use disorder, nonopioid modalities should be prioritized if possible. Opioids and benzodiazepines can be prescribed for this population, but they require more intense monitoring and risk mitigation strategies to avoid harm. (See 'Pain management' above.)

Other symptom management – Management of common symptoms is frequently complicated by lack of access to bathroom facilities, electricity, or telephones. The logistics of typical treatments for other common symptoms should be explicitly discussed with the patient, as they may need to be adapted before they are acceptable and/or feasible. (See 'Other symptom management' above.)

Advance care planing Homeless patients are at risk of receiving care at the end of life that is inconsistent with their preferences. For this reason, they should be encouraged to complete advance directives (Ads). Barriers to advance care planning (ACP) include lack of continuity with providers, an inability to identify surrogate decision-makers, or, in some patients with cognitive or psychiatric disorders, difficulty with hypothetical, future-oriented decision making. Facilitated ACP with trained counselors may improve rates of AD completion in this vulnerable population. (See 'Advance care planning' above.)

Improving access to palliative care – Given the barriers to accessing palliative care through traditional care models, alternative approaches are often needed to reduce disparities in this population. Collaboration between mainstream palliative care and harm reduction programs may potentially remove obstacles to palliative care for homeless persons struggling with substance use disorders, and some areas have developed palliative care services specifically tailored to meet the needs of homeless patients. (See 'Improving access to care' above.)

ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges James O’Connell, MD, who contributed to an earlier version of this topic review.

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Topic 90591 Version 24.0

References

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