Over the course of this study, participants articulated how harm reduction services act as an alternate source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs. Participants highlighted how establishing trusting relationships and regularly engaging with clients facilitated referrals to end-of-life care services. Previous research has similarly noted that harm reduction services (e.g. syringe exchange programs, supervised injection facilities, etc.) are key points-of-referral to health care services for substance-using populations [37
], but only recently has attention turned to the health care interactions that facilitate these referrals [47
]. For example, in a recent study of client perspectives of a syringe exchange program in a mid-sized Canadian city, MacNeil and Pauly [47
] noted that adopting a non-judgmental approach led to the trusting relationships between clients and staff as well as linkages to other healthcare services. While the findings presented in this article further outline the importance of trust in mediating access to healthcare services—in this case, end-of-life care services, closer scrutiny of the characteristics of these relationships is needed to identify how
they improve engagement with this population.
Participants also identified harm reduction programs as an alternate and often the only source of end-of-life care and support available to homeless and marginally housed persons who use alcohol and/or illicit drugs. For example, participants reported that harm reduction outreach programs provided a range of end-of-life support services (e.g. personal support, housing assistance, etc.) for unstably housed persons who were unable or unwilling to access end-of-life care services as a result of social and structural barriers to these services. While participants felt that they improved clients’ quality of life by providing these basic support services, they acknowledged that they could not provide care equal to that provided in end-of-life care settings. In light of these limitations, there remains a need to develop interventions that minimize to the greatest extent possible barriers this population faces to end-of-life care services. Fostering partnerships between harm reduction outreach programs and end-of-life care teams is one approach that might improve access to end-of-life care for this population [50
]. Harding et al. [51
] have previously noted that partnerships between community health programs (including substance use programs) and end-of-life care teams are critical to enhancing access and equity in end-of-life care services for underserved populations.
Our findings also suggest that homeless or unstably housed persons who use substances might refuse referrals to end-of-life care services because they wish to die at “home” (i.e., residential harm reduction programs, single room occupancy hotels, or apartments unfit for human habitation) supported by harm reduction outreach workers. Participants pointed out that they provided end-of-life care and support for this population because they were motivated to support clients who wished to die at home (or had no alternative). Although researchers have increasingly explored the end-of-life care needs of this population (28-32), they have largely overlooked any concerns related to place-of-death
for homeless and unstably housed persons, in general, and homeless and marginally housed persons who use alcohol and/or illicit drugs, in particular. Our findings suggest that many homeless and marginally housed persons who use alcohol and/or illicit drugs might wish to die-at-home for many of the same reasons their stably housed counterparts wish to (e.g. comfort, familiarity, presence of loved ones, etc.) [52
]. And yet, precisely because this population typically lacks reliable caregivers and/or home-based end-of-life care services, they run the risk of dying alone, anonymously, and with unmet care needs. While harm reduction programs play a vital role in minimizing these adverse outcomes, action is clearly needed to address multiple social and structural inequities (e.g. availability of affordable housing, home care services, etc.) that constrain the ability of this population to exercise agency in regards to place of death.
Finally, our findings echo those of previous studies reporting that harm reduction programs serve as an alternate healthcare delivery system for homeless persons who use substances [53
]. Some of the main advantages of delivering healthcare services via harm reduction programs include increased responsiveness to the population’s needs and flexibility, as well as promoting dignity and respect for persons who use substances [53
]. However, while alternate healthcare services delivery via harm reduction programs improves access for homeless and marginally housed persons who use alcohol and/or illicit drugs, it also leads to separate but not equal healthcare services for this population [54
]. In light of this concern, more comprehensive strategies in addition to those outlined above are needed to reduce or eliminate the barriers that substance-using populations face to accessing end-of-life care services.
Integrating more comprehensive harm reduction approaches (e.g. supervised drug consumption services) into end-of-life care services represents one way to potentially improve access and equity in end-of-life care services for this population [32
]. A growing body of research suggests that supervised drug consumption services are an effective strategy for increasing health access [55
], minimizing accidental overdoses [55
], and encouraging safer drug use practices [59
] among illicit drug users. Further research is needed to determine whether these and other benefits extend to other healthcare settings adopting this approach. Partnering organizations with expertise providing these services with the end-of-life care system is worth exploring to facilitate their expansion into end-of-life care settings.
We acknowledge that harm reduction programs have faced community opposition [61
], which might restrict their integration into these settings, yet several health and end-of-life care service providers have nonetheless successfully implemented harm reduction approaches. For example, the Dr. Peter Centre, a community-based health facility in Vancouver, Canada that provides clinical and support services to persons living with HIV/AIDS including end-of-life care, has integrated supervised injection services into its programming since 2002. An evaluation of the impact of comprehensive harm reduction services in these settings might yield further insights into how harm reduction programming might be integrated into end-of-life care.
This study has several limitations that should be noted. Our findings have limited generalizability to regions where health care services are organized differently (e.g. lack of universal health insurance) and/or drug policy prohibits harm reduction services or limits their role in health care services delivery to this population. While this articles draws on interviews with a range of experienced health and social care professionals who work with homeless and marginally housed persons who use alcohol and/or illicit drugs, it does not report on the first hand experiences of this population. Additional research is needed to explore the specific concerns and experiences of this population. Finally, this qualitative study was exploratory in nature. The insights generated will help to inform further research.