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Harm reduction services as a point-of-entry to and source of end-of-life care and support for homeless… McNeil, Ryan; Guirguis-Younger, Manal; Dilley, Laura B; Aubry, Tim D; Turnbull, Jeffrey; Hwang, Stephen W May 17, 2012

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RESEARCH ARTICLE Open AccessHarm reduction services as a point-of-entry toand source of end-of-life care and support forhomeless and marginally housed persons whouse alcohol and/or illicit drugs: a qualitativeanalysisRyan McNeil1*, Manal Guirguis-Younger2, Laura B Dilley3, Tim D Aubry4, Jeffrey Turnbull5,6 and Stephen W Hwang7AbstractBackground: Homeless and marginally housed persons who use alcohol and/or illicit drugs often have end-of-lifecare needs that go unmet due to barriers that they face to accessing end-of-life care services. Many homeless andmarginally housed persons who use these substances must therefore rely upon alternate sources of end-of-life careand support. This article explores the role of harm reduction services in end-of-life care services delivery tohomeless and marginally housed persons who use alcohol and/or illicit drugs.Methods: A qualitative case study design was used to explore end-of-life care services delivery to homeless andmarginally housed persons in six Canadian cities. A key objective was to explore the role of harm reduction services.54 health and social services professionals participated in semi-structured qualitative interviews. All participantsreported that they provided care and support to this population at end-of-life.Results: Harm reduction services (e.g., syringe exchange programs, managed alcohol programs, etc.) were identifiedas a critical point-of-entry to and source of end-of-life care and support for homeless and marginally housedpersons who use alcohol and/or illicit drugs. Where possible, harm reduction services facilitated referrals toend-of-life care services for this population. Harm reduction services also provided end-of-life care and supportwhen members of this population were unable or unwilling to access end-of-life care services, thereby improvingquality-of-life and increasing self-determination regarding place-of-death.Conclusions: While partnerships between harm reduction programs and end-of-life care services are identified asone way to improve access, it is noted that more comprehensive harm reduction services might be needed inend-of-life care settings if they are to engage this underserved population.BackgroundAt any given moment, tens of thousands of people inCanada are homeless or marginally housed [1,2]—that is,live places unfit for human habitation (e.g., outdoors,vehicles, etc.) or temporary, transitional, or emergencyaccommodations (e.g., emergency shelters, hostels, etc.).Homeless and marginally housed persons have consist-ently reported levels of alcohol and/or illicit drug usemany times higher than the stably housed population[3-7]. For example, a recent study of a large sample ofhomeless persons in Toronto found that 60% had a life-time prevalence of regular illicit drug use and 40%reported active use of illicit drugs other than marijuana[3]. A cohort study of homeless and marginally housedyouth in Vancouver reported that 41.1% had used drugsby injection [4]. Another study of homeless women inVancouver noted that 82.4% of its sample regularly usedsubstances, including illicit drugs (70.5%) and alcohol(37.8%) [5].* Correspondence: rmcneil@cfenet.ubc.ca1British Columbia Centre for Excellence in HIV/AIDS, St. Paul's Hospital,608-1081 Burrard Street, Vancouver, BC V6Z 1Y6, CanadaFull list of author information is available at the end of the article© 2012 McNeil et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.McNeil et al. BMC Public Health 2012, 12:312http://www.biomedcentral.com/1471-2458/12/312Homelessness and marginal housing are strongly corre-lated with a range of adverse health outcomes [8-10], in-cluding high levels of morbidity and mortality [11-13], thatare frequently exacerbated by substance use. Injectiondrug use and non-injection use of crack cocaine and crys-tal methamphetamine are risk factors for HIV and Hepa-titis C (HCV) infection [14-18], resulting in high infectionrates among homeless and marginally housed persons whouse these substances [18-20]. Furthermore, injection druguse and non-injection use of crack cocaine and crystalmethamphetamine have been shown to accelerate HIVand HCV disease progression, leading to higher incidencesof cirrhosis, hepatocellular carcinoma, opportunistic infec-tions, and AIDS-related cancers among these populations[21-24]. Heavy alcohol consumption is similarly linked toHIV and HCV disease progression, resulting in similarlypoor outcomes [25-27]. Homeless and marginally housedpopulations consequently suffer from high mortality ratesand life expectancies at least a decade less than those ofthe general population [11-13].Homeless and unstably housed persons who use alcoholand/or illicit drugs have complex end-of-life care needs,which are compounded by the challenges of everydaysurvival (i.e., securing food and shelter) [28-31]. In spite of ahigh level of need, this population faces many barriersto accessing the end-of-life care system [28,32]. Whilemany populations in Canada report difficulties accessingend-of-life care services (e.g., Aboriginal peoples and peopleliving in rural areas [33-35]), the realities of homelessnessand drug and/or alcohol use pose particular challenges.End-of-life care services have been largely developed basedon assumptions (i.e. individuals are housed, supported byfamily and friends, and/or have resources to pay for supple-mentary care) that do not reflect the experience of thispopulation. Homeless and marginally housed persons whouse alcohol and/or illicit drugs lack access to end-of-life careservices where these services are delivered via home care orpay-for-service facilities. Furthermore, end-of-life care ser-vices providers often enforce rules and regulations (e.g.anti-drug policies) that exclude this population from acces-sing care [32]. Although several low-threshold hospiceshave implemented harm reduction policies (i.e.: permittingonsite prescribed alcohol use, providing injecting equipmentand permitting off-site illicit drug use), this end-of-life careservice delivery model has not been widely implemented.Many homeless and marginally housed persons whouse drugs and/or alcohol presumably rely on alternatesources of care and support at end-of-life. Whileresearchers have increasingly turned their attentiontoward the end-of-life care needs of this population[28-32], they have not explored alternate sources ofend-of-life care and support for this population. For ex-ample, what services do homeless and unstably housedpersons who use alcohol and/or illicit drugs turn to forend-of-life care and support? What level of support andcare are these services able to provide? And also, whatrole do these services play in facilitating access to morecomprehensive end-of-life care?In Canada, as in many other countries, harm reductionprogramming is a central component of public healthstrategies. Harm reduction emphasizes interventions thatminimize the drug and health harms associated with al-cohol and/or drug use (e.g., overdose, infectious diseases,etc.) while not requiring abstinence as a condition foraccessing services [36]. A growing body of research hasnoted that harm reduction services are one of the princi-pal and often only sources of medical care and referralsfor homeless and marginally housed persons who use al-cohol and/or illicit drugs in Canada [37-42]. However,this research has overlooked any role that these pro-grams play in facilitating access to end-of-life care andsupport for this population. This article explores howharm reduction services act as a point-of-entry to andsource of end-of-life care and support for this populationbased on qualitative interviews with key informants insix Canadian cities. Although data collection was limitedto a country with universal healthcare insurance, findingsfrom this study provide insights that are likely applicableto other jurisdictions where harm reduction programsare involved in the delivery of health and social servicesto homeless and marginally housed persons.MethodsStudy designWe used a qualitative case study design to explore end-of-life care services delivery to homeless and unstably housedpersons with problematic use of alcohol and/or illicitdrugs [43], with an emphasis on points-of-entry to andsources of end-of-life care and support. We conductedqualitative interviews with health and social services pro-fessionals (e.g., emergency shelter directors, physicians,nurses, etc.) between February 2007 and August 2008 inwhich we explored this topic. Given the lack of previousresearch in this area, qualitative interviews were deemedto be the best means through which to generate prelimin-ary insights into factors that shape sources of end-of-lifecare for this population. We originally intended to alsoconduct interviews with homeless and unstably housedpersons who use alcohol and/or illicit drugs that had beendiagnosed as being terminally ill at the primary site of thisstudy (i.e., Ottawa), but determined this was not feasibleafter conducting preliminary interviews with these partici-pants (n= 5). We ultimately decided that we could notguarantee that the data would be of sufficient quality dueto poor recall of events and inconsistency in the reportingof these events. We were also concerned that many parti-cipants would be unable to provide informed consent dueto cognitive deficits (e.g., HIV-related dementia, impairedMcNeil et al. BMC Public Health 2012, 12:312 Page 2 of 9http://www.biomedcentral.com/1471-2458/12/312cognitive function due to stroke, etc.) and interviewswould place an undue burden on participants with a highseverity of illness. In spite of this limitation, we felt thatinterviews with key informants (i.e., health and social ser-vices professions who provide end-of-life care and supportto homeless populations) would allow us to generate thebest possible insights into the needs of this population.Participants & recruitmentKey informants involved in the delivery of health andend-of-life care services to homeless and unstably housedpersons in Halifax, Ottawa, Hamilton, Toronto, ThunderBay, and Winnipeg were invited to participate in this study.An advisory committee made up of regional experts (i.e., se-nior health and social services professionals who provideservices to homeless persons), as well as existing relation-ships with homeless services organizations in Ottawa andToronto, helped us to identify key informants in those cit-ies. Key informants in Halifax, Hamilton, Thunder Bay, andWinnipeg were identified through a scoping review ofhealth services for homeless persons in those cities.Seventy-three potential participants were sent a letter oremail by the lead author providing an overview of the studyand inviting them to participate. Fifty-four individuals (74%)agreed to participate in this study, including physicians (6),nurse practitioners (2), nurses (16), social workers (5),emergency shelter or supportive housing executive directorsand/or senior managers (9), harm reduction specialists (5),outreach workers (7), and personal support workers (4).Many participants worked in harm reduction-based set-tings, such as low-threshold hospices (15), managed alcoholprograms (8), and syringe and/or safer crack use kit distri-bution programs (8), and the remainder of participantsreported regular contact with these services.Data collectionSemi-structured interviews were conducted with partici-pants at their place of employment or an alternate loca-tion of their choosing. Participants were asked to discussa range of topics related to end-of-life care services deliv-ery to homeless and marginally housed persons who usealcohol and/or illicit drugs, including points-of-entry andsources of end-of-life care and support. Interviews ran-ged in length from 45 to 120 minutes, although the ma-jority of interviews were approximately one hour inlength. Interviews were audio recorded with the consentof participants and transcribed verbatim by researchassistants. Each transcript was reviewed by the lead au-thor while listening to the audio file to verify the accur-acy of the transcript and make any necessary corrections.Data analysisThe goal of analysis for this article was to explore howhomeless persons who use alcohol and/or illicit drugsgain access to end-o-life care services, as well as non-traditional sources of end-of-life care and support. Tran-scripts were imported into qualitative analysis software(NVivo v.8) to facilitate coding [44]. A preliminary set oftwo categories extracted from the interview guide (e.g.points-of-entry to end-of-life care services and sourcesof end-of-life care and support) was used to provide aninitial framework for the analysis. We concurrentlycoded the transcripts by drawing upon constant com-parative methods, whereby emerging sub-categorieswere recorded and explicated by means of constant com-parison to the data [45,46]. We determined early inanalysis that harm reduction services served as a keypoint-of-entry and source of end-of-life care and supportfor homeless and marginally housed persons who use al-cohol and/or illicit drugs. We adjusted the coding frame-work to account for the outreach (i.e. drop-in andoutreach syringe exchange and distribution) and residen-tial programs (i.e., services, such as managed alcoholprograms and low threshold emergency shelters, whereclients are permitted to be intoxicated or actively use)available in these cities. We discussed and further revisedthe coding framework during subsequent meetings untilthe final themes and sub-themes were established. Oncethese final categories were established, the lead authorindependently recoded sections of the data to verify thevalidity of these categories.EthicsThis study received approval from the institutional re-search ethics committees at Saint Paul University andthe University of British Columbia. Informed consentwas obtained prior to the interviews and participantsretained a duplicate copy of the informed consent proto-col for their records. In order to maintain participantanonymity and confidentiality, where participants arequoted directly, they are identified by their professionalrole.ResultsParticipants identified many barriers to end-of-life careservices for homeless and marginally housed personswho use alcohol and/or illicit drugs, which are reviewedin-depth elsewhere [32]. This article focuses instead onthe role harm reduction services play in addressing gapsin end-of-life care services by providing care and supportfor homeless and marginally housed persons who use al-cohol and/or illicit drugs. Eight themes are grouped intothree domains to shed light on this dynamic: first, howharm reduction programs act as a point-of-entry toend-of-life care services; second, how harm reductionoutreach programs serve as a source of end-of-life sup-port; and, finally, how residential harm reduction pro-grams serve as a source of end-of-life care and support.McNeil et al. BMC Public Health 2012, 12:312 Page 3 of 9http://www.biomedcentral.com/1471-2458/12/312Direct quotations are used throughout to illustrate thesethemes.Harm reduction services as a point-of-entry to end-of-lifecare servicesIncreasing engagement with populationParticipants reported that, while multiple social andstructural barriers restricted access to end-of-life careservices for homeless and marginally housed personswho use alcohol and/or illicit drugs (e.g. lack of afford-ability, abstinence-only policies, etc.), one of the principalbarriers was an overall lack of engagement with healthand social care services. They noted that delivering ser-vices via harm reduction programs helped them to estab-lish contact and build trusting relationships with thispopulation. Participants felt that, by using a non-judg-mental harm reduction approach, they were able to bet-ter engage with this population. As one participantnoted:You have to earn it. You have to show that you wantto do something for them. I’m going to make sure thatit gets done and that it’s followed up. You have to berespectful and treat people with the same kind oftreatment that you would want. I’m often veryinformal. I use humour but, most of all, I think thatyou earn it. It's often word of mouth. One client willsay, “Listen, you can trust her." (Harm ReductionOutreach Worker)Individuals come in through the needle exchangeprogram and they come in and talk. Over time, youbuild a sense of confidence and then become moreconversational about what’s happening and what theirneeds are. It takes time for people to be willing totrust or to think it is worthwhile to trust. (HarmReduction Outreach Worker)Participants strongly felt that these relationshipsallowed them to better facilitate referrals to end-of-lifecare services for this population. Several physiciansacknowledged the critical role that harm reduction ser-vices played in facilitating access to end-of-life care ser-vices for this population. For example:It’s the outreach worker that will do the vast majorityof the work. It’s thanks to these guys that I’m able tosee the clients. The client has trust with the team andthen I become a part of the team so they’re able totrust me. (Physician)Engaging with clients over timeParticipants reported that, since many homeless and mar-ginally housed persons who use alcohol and/or illicit drugsregularly accessed harm reduction services, they were ableto maintain frequent contact with this population. Partici-pants articulated how this long-term engagement mediatedaccess to end-of-life care services. Many participants notedthat, because harm reduction programs provided ongoingand often the only care and support for this population,they were positioned to monitor changes in health status.Consequently, they were positioned to facilitate referrals toend-of-life care services when necessary. For example:We have a lot of the guys that been here [harmreduction program] for six years now. They’re allgetting older and you can tell that the alcohol ishitting them harder. At one point, their health needsare just too much just for us but there’s nowhere forthem to go unless they’re really actually sick and cango to the end-of-life care provider. (Nurse)He’s there every day. He’s getting sicker. He’s nothoused. Three or four of these clients since I’vestarted working here have been recognized by theworkers at [harm reduction program]. They know tocall us and that we’ll follow through with helping withappointments and referrals to the [end-of-life careprovider]. (Nurse)Maintaining relationships with end-of-life care providersParticipants felt that it was important for harm reductionprograms and end-of-life care providers to maintain rela-tionships to facilitate access to end-of-life care servicesfor homeless and marginally housed persons who use al-cohol and/or illicit drugs. Many participants who workedfor harm reduction programs indicated that they soughtout opportunities to formally link with end-of-life careproviders in their communities. These participantsbelieved that these links with end-of-life care providersnot only served to facilitate referrals, but also allowedthem to generally advocate for end-of-life care servicesfor this population. One participant remarked:We are now part of a community palliative carecommittee. That committee looks at the services thatare available and what’s needed—the gaps that existfor homeless and under-housed in terms of end-of-lifecare. We might recognize that someone is very ill so itis a matter of getting them to a physician and thenmaking an application to move them into a palliativecare facility. (Nurse)Many participants who worked in end-of-life care set-tings also acknowledged the importance of these links.These participants reported that links with harm reduc-tion programs helped them gain access to a populationMcNeil et al. BMC Public Health 2012, 12:312 Page 4 of 9http://www.biomedcentral.com/1471-2458/12/312that they would not otherwise be able to provide end-of-life care to. For example:People who are living on the street. . .it’s much harderto access them. They don’t come to us and they don’tgo anywhere for help until they’re so sick that they’repicked up by an ambulance. I’ll get calls from streetnurses. Somebody will say, "I’ve got somebody that Ithink is going to need to come to you at some point.”(Hospice Administrator)Harm reduction outreach services as a source ofend-of-life careProviding end-of-life support to clients unable to accessservicesParticipants reported that harm reduction outreach pro-grams were often one of the only sources of end-of-life sup-port available to this population. Participants acknowledgedthat, while these programs lacked the resources to provideend-of-life care (e.g. pain and symptom management, coun-selling, etc.), they were able to provide a range of supportservices via these programs. Many of these support services(e.g. personal support, housing assistance, etc.) wereintended to help homeless and marginally housed personswho use alcohol and/or illicit drugs meet their most basicneeds (e.g. shelter, food, etc.) at end-of-life and therebyminimize to the greatest extent possible the hardships asso-ciated with poverty and homelessness. For example:We had one fellow that died but he had no place tolive. He wasn’t welcome at the local shelter because ofsome of his behaviours. He was sitting out there in hiswheelchair on the corner ready to take on all comersand the police brought him to our office. A co-workerhad a big office that had a couch in it and the policewould bring him in with a bag of McDonalds. Hewould lie on the couch for the day. At the end of theday, we all had homes to go to and we couldn’t lethim stay there. We would find a place and sometimeswe would find someone willing to put him in a hotelovernight. It would be four-thirty on a Fridayafternoon and I would be searching and scroungingand finally find one loophole and get him some placefor the weekend. (Harm Reduction Outreach Worker)Participants reported that unstably housed persons (e.g. living in single room occupancy hotels or apartmentsnot fit for human habitation) with substance use chal-lenges also received end-of-life support via harm reduc-tion outreach programs. They noted that they providedend-of-life support services (e.g.: personal care, emo-tional support, etc.) to this population as part of or inaddition to the regular outreach services. Participantsidentified several reasons why this population receivedend-of-life support from these programs, such as pooraccess to home care services and comfort with harm re-duction outreach workers. As one participant noted:We had a few clients that were old time clients thatwere HIV-positive and turned into AIDS. There was aplace down on the South end where a lot of the addictslive. We had support staff that would go down and helpwith this person. We’ll make home visits because theyfeel more comfortable with us because they’ve beenwith us for so long. (Harm Outreach Worker)When I first started working here, there was a clientwho was dying of AIDS and [an outreach worker]used to go down every day and of sit with him for awhile. . .There was another guy dying from hepatitis Ccomplications—liver cirrhosis—and [the outreachworker] would go sit with him, talk to him, help himout, you know. Clean him and wash him, things likethat. (Harm reduction outreach worker)Providing end-of-life support to clients who wish to ‘die athome’Participants indicated that, when end-of-life care serviceswere available, some unstably housed persons who usedsubstances refused referrals to end-of-life care providers,preferring instead to die-at-home (e.g. single room occu-pancy hotels or apartments not fit for human habitation).Participants reported that such persons indicated tothem that the benefits of end-of-life care services (i.e.,supportive care, pain and symptom management, etc.)were outweighed by the drawbacks, notably disruptionsin living environment (e.g. peer support networks, etc.)and lack of self-determination of place-of-death. Partici-pants who worked at harm reduction outreach programsexpressed that they were committed to supporting cli-ents who wished to die at home. As a result, theyreported that they provided and facilitated a range ofend-of-life support services for this population that wereoutside of the scope of their everyday responsibilities.For example:We had one fellow that was an injection drug user. Hewas HIV-positive for many years and continuouslyused and drank. He was in and out of hospital. He gotto the point where he knew he was dying and hewanted to die with his [single room occupancy hotel]friends. We were able to work around that. We hadnurses from here going in. We had doctors going in. Itwas home until he finally did die. (Harm reductionoutreach worker)There was an individual I’d worked with for a numberof years. . .He lived [in an apartment in the west end]McNeil et al. BMC Public Health 2012, 12:312 Page 5 of 9http://www.biomedcentral.com/1471-2458/12/312and he died of Hepatitis C and HIV there. I would goover and see him and we’d talk and I’d smudge him [i.e. perform an Aboriginal purification ceremony]. Itwas just a matter of being there for him on a dailybasis. (Harm reduction outreach worker)Residential harm reduction programs as a source of end-of-life careProviding culturally-competent careParticipants reported that residential harm reduction pro-grams (i.e. managed alcohol programs and low barrieremergency shelters) served as a key source of end-of-lifecare services for homeless persons who use substances atend-of-life. Many participants noted that the delivery ofend-of-life care services in these settings was an extensionof the range of other clinical and support services deliveredonsite (e.g. medication assistance, nursing care, etc.) andresponded to the natural progression of health needsexperienced by their clients (e.g. HCV, HIV/AIDS, etc.).Participants acknowledged that, while unable to provideservices equal to those provided in end-of-life care set-tings, they had greater cultural competence in providingcare for this population. Participants strongly felt that theywere better able to provide care that responded to theunique needs of this population and acknowledged theirlived experiences. As one participant observed:Staff members are not trained in palliative care butthey have many years of experience working withpeople with heavy substance use, heavy alcohol use,difficult behaviours and mental health problems. Thisis the group that they’ve chosen to work with. It’s notlike five percent of the people that they work with. It’severybody they work with. (Physician)Providing end-of-life care for clients in a home settingParticipants acknowledged that many clients identifiedresidential harm reduction programs as home andexpressed a strong desire to die there. One of the keyreasons for this was that many clients of these programshad been long-term residents of these programs andestablished strong relationships with other residents andstaff. Many of the participants in this study articulatedhow strong relationships with residents motivated themto support these clients at end-of-life. For example:The guys know that we’ll keep them here as long aspossible and that we’ll try to increase nursing hours.We’ll try to do anything to keep them here becausethey are family. It’s like they want to die in their home.(Nurse)We would discuss their wishes in terms of where theywould like to spend their last weeks or months andtheir options would basically fall into two categories.It would be either arranging something at the hospitalor spending their last bit of time in this program.Certainly, we wouldn’t be able to provide the samelevel of care that they might receive in the hospital butwe might still be more desirable—passing away athome because the program environment had indeedbecome their home and their community. (Physician)Implications of end-of-life care and support for regularservicesParticipants acknowledged that delivering end-of-lifecare services via residential harm reduction programsimpacted the delivery of regular services to program cli-ents. One of the key implications noted by participantswas that they had to divert limited resources to provid-ing end-of-life care to clients. Several participantsreported that in spite of their best intentions it becamenecessary to refer some of these clients to end-of-lifecare settings when it became clear that they would be-come overextended. One participant noted:It got to the point with cirrhosis of the liver that hehad problems going to the bathroom. He couldn’tsleep on the overnight and was afraid to sleep becausehe thought he was not going to wake up. Staffmembers had to basically spend twenty four hourswith this individual. That is when we realized we hadnine other residents. Staff members were saying thatwe really want to support this client but it’s impossiblefor us. At that point, we said, ‘Okay, we really need tomake a referral.’ (Harm reduction specialist)Many participants also articulated how they learned fromthese experiences in order to be better equipped to providecare to subsequent clients who were dying. For example:We kind of got caught off guard because our firstclient that got sick was quite young and experiencedprofound liver failure, extremely fast. He had to go tothe hospital. He didn’t want to but he had to. Wedidn’t have any nursing support in place. We didn’thave equipment. We didn’t have the drugs. He had togo to the hospital to die. It set us into our planningstage for the next event—getting equipment, nurses,drugs, and all these things in place for the nextperson. (Nurse Manager)DiscussionOver the course of this study, participants articulated howharm reduction services act as an alternate source of end-of-life care and support for homeless and marginallyhoused persons who use alcohol and/or illicit drugs. Parti-cipants highlighted how establishing trusting relationshipsMcNeil et al. BMC Public Health 2012, 12:312 Page 6 of 9http://www.biomedcentral.com/1471-2458/12/312and regularly engaging with clients facilitated referrals toend-of-life care services. Previous research has similarlynoted that harm reduction services (e.g. syringe exchangeprograms, supervised injection facilities, etc.) are keypoints-of-referral to health care services for substance-using populations [37-42], but only recently has attentionturned to the health care interactions that facilitate thesereferrals [47-49]. For example, in a recent study of clientperspectives of a syringe exchange program in a mid-sizedCanadian city, MacNeil and Pauly [47] noted that adoptinga non-judgmental approach led to the trusting relation-ships between clients and staff as well as linkages to otherhealthcare services. While the findings presented in thisarticle further outline the importance of trust in mediatingaccess to healthcare services—in this case, end-of-life careservices, closer scrutiny of the characteristics of these rela-tionships is needed to identify how they improve engage-ment with this population.Participants also identified harm reduction programs asan alternate and often the only source of end-of-life careand support available to homeless and marginally housedpersons who use alcohol and/or illicit drugs. For example,participants reported that harm reduction outreach pro-grams provided a range of end-of-life support services(e.g. personal support, housing assistance, etc.) for un-stably housed persons who were unable or unwillingto access end-of-life care services as a result of social andstructural barriers to these services. While participantsfelt that they improved clients’ quality of life by providingthese basic support services, they acknowledged thatthey could not provide care equal to that provided inend-of-life care settings. In light of these limitations,there remains a need to develop interventions thatminimize to the greatest extent possible barriers thispopulation faces to end-of-life care services. Fosteringpartnerships between harm reduction outreach programsand end-of-life care teams is one approach that might im-prove access to end-of-life care for this population[50,51]. Harding et al. [51] have previously noted thatpartnerships between community health programs (in-cluding substance use programs) and end-of-lifecare teams are critical to enhancing access and equity inend-of-life care services for underserved populations.Our findings also suggest that homeless or unstablyhoused persons who use substances might refuse refer-rals to end-of-life care services because they wish to dieat “home” (i.e., residential harm reduction programs, sin-gle room occupancy hotels, or apartments unfit forhuman habitation) supported by harm reduction out-reach workers. Participants pointed out that they pro-vided end-of-life care and support for this populationbecause they were motivated to support clients whowished to die at home (or had no alternative). Althoughresearchers have increasingly explored the end-of-lifecare needs of this population (28-32), they have largelyoverlooked any concerns related to place-of-death forhomeless and unstably housed persons, in general, andhomeless and marginally housed persons who use alco-hol and/or illicit drugs, in particular. Our findings sug-gest that many homeless and marginally housed personswho use alcohol and/or illicit drugs might wish to die-at-home for many of the same reasons their stably housedcounterparts wish to (e.g. comfort, familiarity, presenceof loved ones, etc.) [52]. And yet, precisely because thispopulation typically lacks reliable caregivers and/orhome-based end-of-life care services, they run the risk ofdying alone, anonymously, and with unmet care needs.While harm reduction programs play a vital role in min-imizing these adverse outcomes, action is clearly neededto address multiple social and structural inequities (e.g.availability of affordable housing, home care services,etc.) that constrain the ability of this population to exer-cise agency in regards to place of death.Finally, our findings echo those of previous studiesreporting that harm reduction programs serve as an al-ternate healthcare delivery system for homeless personswho use substances [53,54]. Some of the main advan-tages of delivering healthcare services via harm reductionprograms include increased responsiveness to the popu-lation’s needs and flexibility, as well as promoting dignityand respect for persons who use substances [53,54].However, while alternate healthcare services delivery viaharm reduction programs improves access for homelessand marginally housed persons who use alcohol and/orillicit drugs, it also leads to separate but not equalhealthcare services for this population [54]. In light ofthis concern, more comprehensive strategies in additionto those outlined above are needed to reduce or elimin-ate the barriers that substance-using populations face toaccessing end-of-life care services.Integrating more comprehensive harm reductionapproaches (e.g. supervised drug consumption services)into end-of-life care services represents one way topotentially improve access and equity in end-of-life careservices for this population [32]. A growing body ofresearch suggests that supervised drug consumption ser-vices are an effective strategy for increasing health access[55,56], minimizing accidental overdoses [55,57,58], andencouraging safer drug use practices [59,60] among illicitdrug users. Further research is needed to determinewhether these and other benefits extend to other health-care settings adopting this approach. Partnering organi-zations with expertise providing these services with theend-of-life care system is worth exploring to facilitatetheir expansion into end-of-life care settings.We acknowledge that harm reduction programs havefaced community opposition [61-63], which might re-strict their integration into these settings, yet severalMcNeil et al. BMC Public Health 2012, 12:312 Page 7 of 9http://www.biomedcentral.com/1471-2458/12/312health and end-of-life care service providers have none-theless successfully implemented harm reductionapproaches. For example, the Dr. Peter Centre, a com-munity-based health facility in Vancouver, Canada thatprovides clinical and support services to persons livingwith HIV/AIDS including end-of-life care, has integratedsupervised injection services into its programming since2002. An evaluation of the impact of comprehensiveharm reduction services in these settings might yield fur-ther insights into how harm reduction programmingmight be integrated into end-of-life care.LimitationsThis study has several limitations that should be noted.Our findings have limited generalizability to regionswhere health care services are organized differently (e.g.lack of universal health insurance) and/or drug policyprohibits harm reduction services or limits their role inhealth care services delivery to this population. Whilethis articles draws on interviews with a range of experi-enced health and social care professionals who work withhomeless and marginally housed persons who use alco-hol and/or illicit drugs, it does not report on the firsthand experiences of this population. Additional researchis needed to explore the specific concerns and experi-ences of this population. Finally, this qualitative studywas exploratory in nature. The insights generated willhelp to inform further research.ConclusionIn Canada, as elsewhere [28], the end-of-life care systemis largely inaccessible to homeless and marginally housedpersons who use alcohol and/or illicit drugs. This studyexplored how harm reduction programs (e.g., syringe ex-change programs, managed alcohol programs, etc.) haveemerged as an important point-of-referral to and vital al-ternate source of end-of-life care for this population. Im-portantly, harm reduction programs were perceived as ameans to provide culturally-competent care and increaseself-determination regarding place-of-death. Notwith-standing the benefits of this approach, action is clearlyneeded to increase access and equity in the end-of-lifecare system for this population. This study identified sev-eral ways that this may be achieved, namely increasedcollaboration between the public health and end-of-lifecare systems and adoption of harm reduction approachesin end-of-life care settings.Competing interestsThe authors declare that they have no competing interests.AcknowledgementsWe would like to first and foremost acknowledge the contributions of studyparticipants. Peggy Cooke, Natalie Dupuis, and Arash Kameli providedresearch and administrative support. Ryan McNeil is supported by a doctoralaward from the Social Science & Humanities Research Council. This researchwas funded by the Social Sciences and Humanities Research Council (Grant #410-2006-2050). Saint Paul University provided supplementary funding.Author details1British Columbia Centre for Excellence in HIV/AIDS, St. Paul's Hospital,608-1081 Burrard Street, Vancouver, BC V6Z 1Y6, Canada. 2Faculty of HumanSciences, Saint Paul University, Ottawa, ON, Canada. 3Faculty of Education,Simon Fraser University, Surrey, BC, Canada. 4School of Psychology, Universityof Ottawa, Ottawa, ON, Canada. 5Department of Medicine, The OttawaHospital, Ottawa, ON, Canada. 6Ottawa Inner City Health, Ottawa, ON,Canada. 7Keenan Research Centre of the Li Ka Shing Knowledge Institute, St.Michael’s Hospital, Toronto, ON, Canada.Authors’ contributionsAll authors contributed to the conceptualization of this study. RM and MGYconducted the interviews. RM, MGY, and LBD conducted the analysis. RMwrote the first draft of the manuscript. 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BMC Public Health 2012 12:312.Submit your next manuscript to BioMed Centraland take full advantage of: • Convenient online submission• Thorough peer review• No space constraints or color figure charges• Immediate publication on acceptance• Inclusion in PubMed, CAS, Scopus and Google Scholar• Research which is freely available for redistributionSubmit your manuscript at www.biomedcentral.com/submitMcNeil et al. BMC Public Health 2012, 12:312 Page 9 of 9http://www.biomedcentral.com/1471-2458/12/312


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