Barriers to End-of-Life Services for Persons Experiencing Homelessness as Perceived by Health and Social Service Providers

Quantitative Data: Demographic and Organizational Data

136 HSSPs completed the survey (Table 1). Due to sampling methodology, this is a convenience sample and response rate cannot be calculated. Of respondents, 57% were from urban communities; 85% reported working in health care services or public health, and 76% in various social services, with obvious significant overlap between the 2; 74% indicated that their organization provided care to persons experiencing homelessness or vulnerable housing; 89% indicated that their organization provided care to people with substance-use disorders.

Qualitative Data: Surveys and KI Interviews

Themes from the qualitative data from HSSPs have been organized into 2 broad categories: 1) those pertaining to the barriers either they or their clients experience when trying to access end-of-life care (4 themes), and 2) those that reflect the gaps in knowledge, approaches, and services that could otherwise enhance their clients' access to care (3 themes). A third category, which deserves to be mentioned here but which will not be explored in more depth, is a small but important message highlighting the excellent service that palliative care professionals did generally provide for clients in the rare instances in which they are actually connected to services.

Theme 1: Structural Barriers to Care Outside of the Health Care System (Table 2)

Homelessness itself presents a host of barriers to accessing services, perhaps worse within the context of end-of-life care. Participants identified the most fundamental gap as the lack of a home or secure place of residence in the context of a palliative care system in which most services are home based. The absence of a home makes it immediately impossible for clients to access many services. While the shelter system could technically make up for this gap, it explicitly does not, with KIs clearly identifying that shelters do not want people dying in their care. Indeed, the current structure of the shelter system, in which residents are requested to leave often for most of the day, renders it inappropriate for someone at the end of life. A number of clients do have “homes” but there are barriers to the provision of palliative care as these spaces may be considered unsafe for health care providers either because they are unfit for human habitation, or due to the potential exposure to violence, substance use, or other unpredictable considerations. Finally, palliative-care services are not generally provided to clients who live in tents or other temporary dwellings.

In addition to a home, palliative-care services anticipate that the individual receiving care will be surrounded by friends and/or family who can assist with their care. Respondents identified that this is often not the case for the homeless or vulnerably housed person. While patients may have a good social network, these support people may not be in a position to advocate for them or to provide care, either due to their own personal challenges, or due to the discrimination they face when interfacing with the health care system. HSSPs reported several instances in which they were identified by community members as next of kin.

Finally, additional barriers to accessing services identified by respondents included lack of identification, lack of an Ontario Health Insurance Plan card, lack of a phone with which to receive calls about appointment times, and lack of transportation to make it to appointments.

Theme 2: Systemic Barriers to Care Within the Health Care System (Table 2)

Respondents identified many barriers within the current health care system. Barriers included the requirement that one have a family physician as a conduit to a referral to palliative care services, and the lack of continuity in the system for this population for whom trust is particularly important and difficult to establish. The geographic location of services, often far from the places where people live, was another barrier. An overall paucity of palliative care services, not specific to the homeless population, including a lack of sufficient hospice beds was identified. Finally, the rigidity of the existing system, the lack of a harm reduction approach or services, and the stigma with which people are treated, were the most important barriers deserving a theme of their own below.

Theme 3: Care Avoidance (Table 2)

Respondents identified many barriers internal to their clients which could be challenging to navigate. Most of these manifested as different forms of care avoidance. Clients avoided seeking care until very late in their disease, often when they were past the point of having choices around their palliative care. The struggles of day-to-day life for people experiencing homelessness often took precedence over seeking out palliative care. Care avoidance also related to extremely negative experiences of the health care system related to stigma that clients had experienced in the past. Another cause for service avoidance was substance use. Not only would clients avoid services that they knew could not or would not accommodate their substance use, but substance use became a top priority for clients, superseding the potential importance of health care or palliative care in their minds. Finally, clients struggled to conform to the current system, resulting in avoidance behaviors such as not waiting long enough in the emergency department to be seen, or leaving if they felt that their needs were unmet or that they were being judged.

Theme 4: Stigma as a Barrier (Table 2)

Stigma as a barrier crosses all the previous themes. According to our respondents, stigma manifested in health care providers not taking into account patients' lived realities when considering recommended courses of action (see theme 1); in overt discrimination, rude or thoughtless behavior toward their clients (see theme 2); and finally resulted in care avoidance due to negative past experiences on the part of service users (see theme 3). Stigma was worse in the context of a client with a substance use disorder. The consequences of stigma included the exclusion of support networks for hospitalized patients (support networks, often drawing from similar social situations as the patient, were either made to feel unwelcome or in some cases explicitly asked to leave) resulting in patients having to make the decision to leave or to die alone in hospital; denial of care (for example, patients who “refused” to stop their illicit substance use might have care withdrawn or refused); and could result in patients feeling so frustrated and/or unwelcome that they would leave “against medical advice” even if this meant they were at risk of dying on the street.

Theme 5: Comfort with Providing Care to Those Experiencing Homelessness (Table 3)

All the KIs and many of the HSSPs who responded to the survey indicated that they were comfortable providing care to homeless or vulnerably housed individuals, whether or not they felt they had the experience and/or knowledge to do so. This comfort came primarily from a deep-seated sense of respect for the dignity of the individual—the antithesis of the stigma mentioned above. Participants discussed meeting the client where they were at, both literally (in terms of space) and figuratively (in terms of their approach to death and dying, willingness to engage with the health care system, and substance use). KIs were able to articulate many areas for improvement and potential solutions.

Theme 6: Gaps in Health Care Provider Knowledge and/or Attitudes (Table 3)

The most important gaps identified in provider knowledge and attitudes were those relating to ongoing stigma. All KIs reported that their clients experienced unacceptable stigma from other health care providers. Many suggested the need for enhanced health care provider training on trauma, addictions and mental health, empathy, and respectful approaches to persons experiencing substance use or homelessness.

In addition, respondents, many of whom were not health care providers, indicated a need for a better understanding of the existing palliative care system and how to access it for their clients. Participants discussed the need to have the ability to refer within this system, even if they are not physicians, as they may be the only professional their clients engage with.

Finally, respondents articulated a need for better education regarding the provision of end-of-life care for people using substances, citing the importance of safety, legality, and drug interactions as areas where information was needed.

Theme 7: Gaps in Available Services and Possible Solutions (Table 3)

Several gaps in existing services were articulated. More hospice beds are needed, and these need to be more flexible, comfortable, and accessible to the preferences of people experiencing homelessness. Participants cited outreach services in other communities that they perceived could be helpful to their clients, rather than insisting that they fit into the new current ambulatory mold. Finally, and most importantly, a palliative care system that embraced the principles of harm reduction was perceived to be essential to allow clients to enter into care, and to remain in care that preserved their dignity. Participants felt it was unreasonable and unnecessary to expect people to renounce their substance use at the very end of their lives, and problematic that this was often necessary for them to receive any type of institutional care.