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research-article2015

QHRXXX10.1177/1049732315588500Qualitative Health ResearchHåkanson et al.

Article

Providing Palliative Care in a Swedish Support Home for People Who Are Homeless

Qualitative Health Research 1­–11 © The Author(s) 2015 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049732315588500 qhr.sagepub.com

Cecilia Håkanson1, Jonas Sandberg2, Mirjam Ekstedt3, Elisabeth Kenne Sarenmalm4, Mats Christiansen5, and Joakim Öhlén1

Abstract Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person’s health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions. Keywords death and dying; homelessness; interpretive description; knowledge construction; palliative care; qualitative; Sweden The World Health Organization (2014) claims all people have a right to palliative care when needed. Globally, however, the distribution of palliative care settings is unequal (Clark, 2007; Koffman, 2012), with people who are homeless counting among the most underserved groups (Ahmed et al., 2004; Koffman & Casmps, 2004). Homelessness is a growing problem. It is estimated that 100 million people are homeless worldwide (United Nations, 2005). In Sweden, approximately 34,000 people (0.4% of the total population) are homeless or excluded from the regular housing market; of those, about 4,000 live in shelters or sleep rough (Swedish National Board of Health and Welfare, 2012). The mortality rate for people who are homeless is four times higher than the average population (Geddes & Fazel, 2011). Commonly found in this homeless population are multiple, life-limiting conditions relating to palliative care needs (Rosenwax, McNamara, Blackmore, & Holman, 2005). Examples of these include the following: chronic pulmonary obstructive disease, chronic heart failure, cancer, neurodegenerative diseases, liver/renal failure, and HIV. Chronic conditions such as diabetes or hypertonia are often poorly treated, with severe health consequences (S. Hwang, 2001; S. W. Hwang, 2001). In addition, many people also suffer from mental illness, often combined with use of drugs and alcohol (Beijer,

Andrèasson, Ågren, & Fugelstad, 2007; Chong et al., 2014; Woods, Willison, Kington, & Gavin, 2008). Other common conditions, especially among people who live in shelters or sleep rough, are tuberculosis; skin diseases relating to parasites, lice, or scabies; and wounds from infections, poorly treated diabetes, or cuts (S. W. Hwang, 2001). People who are homeless often die in care places where palliative competence is not available (Ahmed et al., 2004). The literature reports an underuse of adequate health services prior to death (S. W. Hwang et al., 2001). From the health care professionals’ perspective, people who are homeless are difficult to care for because their homeless state, mental illness, and frequent use of illicit drugs or alcohol often mean they have a hard time adhering to treatment recommendations and do not return 1

Ersta Sköndal University College, Stockholm, Sweden Jönköping University, Jönköping, Sweden 3 KTH, Royal Institute of Technology, Stockholm, Sweden 4 Skaraborg Hospital, Skövde, Sweden 5 Karolinska Institutet, Huddinge, Sweden 2

Corresponding Author: Cecilia Håkanson, Palliative Research Centre, Ersta Sköndal University College, P.O. Box 11189, SE-10061 Stockholm, Sweden. Email: [email protected]

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for follow-up care (S. W. Hwang, 2001; McCabe, Macnee, & Anderson, 2001). However, from the perspective of those who are homeless, health care professionals often lack adequate respect or understanding of the circumstances around homelessness and related care needs (Drury, 2008; Irestig, Burström, Wessel, & Lynöe, 2010; McCabe et al., 2001). Research on death, dying, and palliative care from the perspective of people who are homeless is sparse. The studies of Song, Bartels, et al. (2007; Song, Ratner, & Bartels, 2005; Song, Ratner, et al., 2007) identify that a homeless person’s awareness of the painful and often lonely deaths of those in their social environment creates fear and anxiety about their own impending deaths. They may fear being in pain or having to die alone, without dignity. Also reported is a desire among the homeless for documented care planning to enable participation in their own care. This planning could provide a guarantee of adequate care for those found dying in the street. It could offer assurance that family members, or other people in past or present social networks will be contacted, thus preventing these individuals from dying in anonymity (Song, Bartels, et al., 2007; Song et al., 2005; Song, Ratner, et al., 2007). When asked about their views for improving end-oflife care, people who were homeless stressed: better collaboration between health and social services; more education for health care professionals concerning living conditions and needs of the homeless, enhanced personcenteredness in care, and alternative organization of places of care (Krakowsky, Gofine, Brown, Danziger, & Knowles, 2013). These findings correspond quite well with the previously described barriers to accessing palliative care, which include insufficient knowledge of palliative care principles (Ahmed et al., 2004) and the circumstances and needs relating particularly to homelessness (Bhui, Shanahan, & Harding, 2006; Krakowsky et al., 2013; McCabe et al., 2001). During the last decade, Sweden and many other Western countries have worked strategically to improve social and health service support to people who are homeless. The strategies have included a variety of activities, from housing projects to ambulatory health care (Benjaminsen & Dyb, 2008; Minnery & Greenhalgh, 2007; Wright & Tompkins, 2005). However, only a very small number of initiatives have been found that describe how professionals adapt principles and practices for people who are homeless and require palliative care. In Ottawa, Canada, shelter-based palliative care showed promising findings for symptom relief and cost effectiveness (Podymow, Turnbull, & Coyle, 2006). At a drop-in center in Minnesota, United States, people who were homeless were offered, and responded positively to, guidance from health care professionals to complete advance directives (Song et al., 2010; Song et al., 2008).

Because there are no guidelines or models available for the palliative care of people who are homeless, health and social service professionals largely rely on experience-based and tacit knowledge in the performance of care. To critique and further develop care in diverse care places for the homeless, such knowledge needs to be explicated and elaborated upon.

Aim In this study, the focus of inquiry is the care practice in a medical and social support home for people who are homeless and have complex care needs. Our aim was to explore the staff members’ experiences of and reasoning about the palliative care they provided.

Design and Method In this qualitative explorative single-case study, we used interpretive description, explicated by Thorne (2008), to obtain experience-based knowledge relevant to professionals in places of care encountering people who are homeless with complex care needs. Interpretive description recognizes that reality is complex, contextual, constructed, and subjective. Moreover, the people they interact with in their social environment constantly influence individuals. This is also the case in research situations, which means that within the relationship between the researcher and the study participant, the two parties will together shape the data that are being generated. Obtaining practice-relevant knowledge requires capturing variations and commonalities of experiences (Thorne, 2008; Thorne, Kirkham, & MacDonald-Emes, 1997).

Study Setting The Swedish support home, which is the setting for this study, offers qualified care, support, and housing for eight persons. The purpose is to provide people who are homeless with qualified medical health care, including palliative care, and social support to facilitate enhanced health, well-being, and social functioning (Engel, 2008). The support home is unique in the Nordic countries in the sense that it tolerates patients’ ongoing use of illicit drugs and alcohol during care. At the time of the study in 2013, the mean age of all patients in the support home was 55 years (range 26–81 years); the mean time in care was 52 days; and the majority of patients were men. Many patients had life-limiting diseases relating to the previously mentioned palliative subset (Rosenwax et al., 2005). Of all the patients, approximately one third had a diagnosis related to illicit drug or alcohol use, and at least one fifth had a psychiatric disorder.

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Håkanson et al. Table 1.  Overview of Data Generation. Type of Data Generation Group conversations Group A   Group conversations Group B   Pair or individual conversations    

Participants

Number of Data Generations

1 registered nurse 2 assistant nurses 1 psychiatric aid 1 social worker 1 registered nurse 2 psychiatric aids Head Nursing manager 2 registered nursesa 1 physician

3     3     2   1 2

a

The same two nurses who participated in Groups A and B.

Participants The participants in this study consisted of staff members in the support home. We gave oral and written information about the study to all 15 staff members and invited them to participate; their roles include social workers, registered nurses, psychiatric aids, assistant nurses, physicians, and managers. The information contained details about the study and its purpose, matters of confidentiality, and the voluntary aspect and right to withdraw at any time without presenting a reason. It was stressed that it was our choice as researchers to invite all staff members to participate; also that the manager and the assistant manager of the support home were not influential in the recruitment of study participants. The 12 individuals who agreed to participate gave their oral consent prior to the commencement of the study. The majority of participants had worked in the support home for several years, some of them from the start. A number of them had previous experience working with homeless patients, illicit drug or alcohol users, those with psychiatric or somatic disorders, and those with severe illness and dying. None of the participants had previously worked with specialized palliative care.

Data Generation We generated data through repeated reflective group conversations, in pairs or as individual reflective conversations, on 11 occasions in total (Table 1). This type of personal or collegial reflection about personal practice experience introduces distance in the health practitioner’s practice. Such explication of previous tacit or implicit knowledge may cause individuals to familiarize themselves with it, transforming it into self-knowledge and collegial knowledge, similar to theoretical knowledge (Bengtsson, 1995).

Reflective group conversations.  We scheduled three group conversations in advance, with approximately 2 to 4 weeks in-between. We invited all the staff members who had agreed to participate in the study to all three occasions, and they attended as their work schedules allowed. On the first occasion, to achieve a group size that would allow enough space to share experiences and have fruitful discussions, we divided the participants in two groups, which were maintained throughout the study. The group conversations took place in quiet locations within the support home, each group being led by one moderator and one observer. The role of the moderator was to pose questions, expand topics, and monitor and encourage the group conversations. The observer’s primary task was to assist the moderator in raising topics and aspects for further reflection, encouraging the group conversations, and taking notes about matters of interest for the current or following occasions. During the conversations, the moderator emphasized previously mentioned or implicitly indicated aspects relevant to the study topics: palliative care in relation to homelessness; identification and assessment of individual care needs; and challenges, obstacles and opportunities for providing palliative care. Examples of introductions used on these occasions were: “Today we would like to discuss what you consider to be characteristic of the care of your patients. Would anyone like to start?” or “Can you please describe what it is like in the support home when a person is dying?” Depending on the spontaneity of the responses, the moderator or the observer asked follow-up questions to stimulate conversation and capture the variation of experiences among the participants. They also posed reflective questions to continue themes derived from previous occasions. For example: “Last time when we spoke about the characteristics of the support home, you mentioned that you had become the patients’ family. Can you please elaborate further on that?” Each group conversation ended with the observer making a summary of the topics being brought up during the conversation, and the participants being invited to add comments and reflections. The group conversations lasted approximately 90 minutes, including small talk, information, presentation rounds, and so forth. Paired and individual reflective conversations.  In addition to the participants’ reflections on their practice, the paired and individual conversations focused on themes and issues that were derived from the group conversations, which were considered relevant to develop further. Examples included the following: matters concerning safety, leadership, and the assessment and planning of care. Paired conversations took place with both managers

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and registered nurses, and individual conversations took place with the physician (see Table 1 for details). All these conversations had the same reflective, conversational format and took place in the same localities as the group conversations. The paired and individual conversations lasted approximately 60 minutes. We recorded all conversations digitally, and transcribed verbatim.

Analysis Interpretive description seeks to discover patterns and inherent variations assumed to characterize the phenomenon of interest (Thorne, 2008). In this study, we performed data generation and analysis through a comparative and parallel process (Thorne, 2008). The initial analysis proceeded according to a series of steps. We listened to the conversations and read the transcripts repeatedly to get an overall sense of the data before broadly coding and organizing the data into clusters of text with related content (e.g., matters of communication or dignity). During this process, we noted analytical questions, comments, and possible interpretations. These clusters of broad coded text we then further analyzed and interpreted in the context of the overall understanding of the descriptions. We considered in what situations or activities the descriptions were embedded, by continuously moving back and forth between the clusters and the texts as a whole. This process also involved moving back and forth between the data, the analytical notes, and the theoretical and empirical literature. Relevant empirical work by other researchers supported the interpretations; whereas theoretical reasoning, for example, regarding the concept of dignity enhanced the understanding of the result (Thorne, 2008). In the final interpretative step, we merged the analyzed clusters of text according to their interpreted meaning, thus being constitutive of variations that together shaped the patterns being disclosed. We attained credibility through principles typically applied in interpretive description: epistemological integrity, representative credibility, and the use of analytic logic and interpretive authority. Our preparation included a knowledge review of literature; thorough planning of the study design and methodology and striving to include as many of the staff members as possible to gain variation of experiences, yet not claiming all the possible variations; and a continuous exchange by all the researchers of reflective and critical reasoning about disclosure and interpretation of findings. Moreover, we discussed alternative interpretations, sometimes leading to re-analysis of the clusters of text with the purpose of confirming or rejecting the original interpretation. This was a transparent process, meaning that we shared ideas and thoughts about interpretations and agreed upon those before closure (Thorne, 2008).

Ethical Considerations The Regional Ethical Review Board in Stockholm, Sweden, approved the study prior to commencement (no. 2013/1548-31/4). Inviting all staff members, in a setting like the support home, might have made the staff feel obliged to participate instead of offering their time voluntarily. However, it was our impression that everyone who chose to join the study did so with genuine interest and willingness to participate. We performed the study in a small, unique setting, in which readers of this article could possibly identify the participants. Therefore, for confidentiality, we chose to be restrictive in the disclosure of information about the participants’ professions or roles in the conversations.

Findings A set of conditional factors, which were particularly different from “ordinary” circumstances, framed the palliative care provided in the support home. The participants described that this care had developed gradually, based on a combination of previous work experience and knowledge, paired with experiential learning from various care encounters. The staff members talked about the simultaneous process of learning and developing care as a joint venture, in which the whole staff group had continuous conversations and agreed on refinements to care practice. The participants’ narratives disclose an approach to palliative care that is person-centered and grounded in the understanding of the person’s health/illness and health literacy. They identified how this approach relates to, and is a determinant on, life as a homeless individual. Four patterns shape the nature of this approach: building trustful and family-like relationships; re-dignifying the person; re-considering communication about illness and dying; and re-defining flexible and pragmatic care solutions. During the conversations, the participants used the terms “patient,” “resident,” and “person” when describing those staying in the support home. We have used the terms “patient” and “person” in presenting the findings.

Conditional Factors Framing Palliative Care Palliative care in the support home is provided under specific conditions. First, all of the patients are homeless. This entails challenges related to care planning and treatment and considers the degree to which each patient is capable of taking care of him/herself when following treatment recommendations. Second, most of the patients do not have support from family members or relatives. This challenges the care professionals to take on the task of being “professional family members” and “providing a home.” Third, treatment for symptoms and distress is

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Håkanson et al. often provided simultaneously with the use of illicit drugs and/or alcohol. This necessitates special skills for identification of signs and symptoms and treatment regimes. Fourth, assessment of illness progression and communication about palliative care and death are often obstructed by unpredictability in the patient’s health status and life circumstances, being homeless, and frequently using drugs as well. Finally, the participants’ notion of palliative care and the point at which a person becomes in need of palliative care varies. Some participants argued that the palliative phase is limited to the very last phase of life when ill persons are more or less bedridden and dying: Interviewer 1: What does end-of-life mean to you? S2: Well, when they’re lying in bed and haven’t got the energy to get up, that’s it . . . We sometimes say of course that it’s palliative, but now that guy’s out on the town and ... S1: Yeah, but now I was thinking more about being mortal, you know, you’re on your way to a liver coma or liver cancer, for example, when we know that . . . now we’ve taken the decision, there’s not much time left. Something like that. Then you never know, a week, 14 days or you know how it is.

Other participants differentiated the terms “palliative” from “end-of-life”: S3: No, I agree with you. I think that palliative isn’t, isn’t the end, it isn’t. It’s when you have a serious illness and the doctors say there’s nothing to be done but there’s a lot you can help to . . . for a little longer, but when you get a bit more and then the end comes—that’s the end of life. S2: Yes, that’s how I see it too. S3: Yes, I think so too. Palliative care, that’s not . . . S2: Everyone who’s here, that’s palliative care. S3: Yes, it is really.

In this conversation, the participants recognized the notion of early palliative care in chronic illness, according to current policies, even though in the conversations they claimed to be unaware of palliative care policies.

Building Trustful and Family-Like Relationships The participants said that the most important part of their work, and the key to success in any other dimension of the care and support being provided in the support home, was to build trustful relationships: “We work very hard with relationships here—we have to. And that’s what . . . that’s what keeps it up, I think.” This relational process began at the time of arrival of the persons at the support home, the staff having treated them with a gentle and respectful approach. This aspect was emphasized to be even more significant, or even fundamental, for people who are homeless compared to other groups of patients.

One important ingredient in building relationships was to allow for patients to have “unscheduled” space to share their life stories and to acknowledge those stories, no matter how wretched or ugly: That it [opportunities for conversations based on patients’ needs] doesn’t have to just be 9–5 and then the door’s shut, but this can happen when it happens—and then it’s just like, seize the moment and embrace it in the best possible way, and then you can think that, that person has still received this respite on their own terms, on their terms of when they were prepared to put words to things.

These life stories were the beginning point for staff members’ understanding of the patients, and how to provide help and support, and plan for care. The majority of patients in the support home had poor or non-existent relationships with family members or previous friends. As a result, part of the staff members’ job was to form trustful relationships and to stand in and act like family members. This task was multidimensional. One dimension was to interact with the patients in everyday situations on the ward, for example, sitting together and sharing meals in the kitchen, watching TV together, or going for a walk. This was important to enable the patients to feel community and equality. A family-like atmosphere was considered to be comforting and to provide rest and protection from stressful and unsheltered living environments. Another dimension involved staff taking a supportive role in encounters with other health care providers, and in communicating with social services and authorities. The reason for this was staff’s awareness of their patients’ frequent experiences of being stigmatized or approached with disrespect or ignorance in such encounters, and therefore they often felt worried about, or even avoided such encounters. While it is praxis in palliative care that no one should have to die alone, the participants discussed their task in terms of going beyond this, meaning that they assumed the role of being a “stand in” family member. This was described to come naturally, as part of the service. The staff member with the closest relationship to the patient was often the one who took on the role of conversing and sitting with him/her until death. A really important aspect of palliative care we offer here is also, I think, that we understand their loneliness. Most of them, not some but most of them I would think, are people who have not had any contact at all with their relatives and we’re the only ones closest to them.

Staff only contacted family members at the end of life if the patients had requested. Situations happened in which patients desired to be reunited, but their children, parents, or a partner did not. One participant recalled,

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Qualitative Health Research  We had a man here, I cannot remember what it was, but anyway we got in touch with the relatives to say that now . . . it’s close now [death]. And the relative just says we should throw him on the rubbish pile.

provide as much love and comfort as they possibly could. Bodily touch was seen to enable feelings of safety in patients and to help them feel respected and appreciated. The following excerpts illustrate this:

These situations were described to be difficult, but also motivated staff in their efforts to provide respect and a forgiving attitude. When a patient died in the support home, the staff held a memorial service, giving staff members and other patients or visitors, who had only recently become acquainted with the individual, a moment to remember and say farewell. The memorial service was a way of ensuring that the person’s life and death were acknowledged in a dignifying and respectful way. Building trustful and family-like relationships involved being quite close to the patients, which was sometimes challenging in terms of preserving integrity: “So I think, you can be as personal as you like and then you have a vast range, but as soon as you become too close, the area in which you can work actually shrinks.” The participants explained that this could sometimes create conflicts with patients, because they were not always able to interpret the point at which these integrity borders were surpassed, and where the line for friendship and closeness with a staff member would be drawn. Conversely, staff members also related experiences about themselves or other co-workers who surpassed these borders by being unprofessionally close to a patient and shared too much personal information, or sidestepped regulations or norms within the support home.

S3: It kind of depends. A bit of massage and taking them by the hand . . . Then, for example, when the others are doing the actual wound dressing changes, I can hold the patient; while I’m holding the patient I can kind of massage him or her a bit, and see how they react, of course. S1: But can I just chip in there S3, because I think you said a really important word earlier, and that’s love, which for me is love in social work, that in a way is a bit of a taboo in relation to being professional but in health care, touch might be more natural, which I think is amazingly important, that some people come here who haven’t showered, who are dirty, who might be used to others keeping their distance and might not want to take them by the hand or anything. So, there’s nobody rejecting people here.

Re-Dignifying the Person In palliative care, dignity is often referred to in the context of maintaining dignity. This is achieved through the acknowledgment of the person and their experiences, needs, and wishes; and by diminishing their exposure and vulnerability in care situations. In the support home, these considerations were also emphasized; however, when the participants in this study talked about dignity, it was mostly in terms of re-dignifying. According to the participants, many of the patients in the support home were considered “the worst cases” by health and social services. Because of their physical and mental condition, and often the simultaneous use of illicit drugs and alcohol, there were no other medical or social bodies that would take these people in and provide care for them. The participants perceived them as people who had lost their dignity long ago, both because of their lifestyle and homeless situation, but also because of the way they had been treated by society, including health and social services. In the absence of loving and caring relationships, coupled with all the hardship that the patients had experienced, staff considered it important to show human kindness and

The participants also emphasized that bodily touch was always something for which trust was necessary. They recognized that not all patients appreciated being hugged or touched, for example, those who had been abused or battered during their lives. Re-dignifying the patients also involved fulfilling their needs, even though these needs were sometimes rather unconventional, being grounded in the biography of the person: I remember we had a man here who had loads of friends and he really wanted to be outside, so that he could . . . and I remember, there was a lot of discussion about that. He was allowed out to the park to go and drink with his mates, that . . . yeah, that was completely OK, like. Then there were lots of people who thought it was terrible, but he was allowed to, because that was his way of socializing with his friends.

Participants also described re-dignifying the person by identifying the importance of staff not leaving the individual alone during or after death. For example, they prepared and dressed the patients nicely for any visitors who might want to pay their respects, even though they often suspected that no one would come.

Re-Considering Communication About Illness and Dying Communicating with patients in the support home about illness and dying was sometimes described as being difficult and in need of reconsideration. One of the things pointed out to differentiate patients in the support home from those in other settings was their often very honest and boundless way of presenting themselves and their problems. The following excerpt illustrates this:

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Håkanson et al. I think that that’s the thing, that they are so . . . they’re such special people and there’s no like, no deceit—they’re just who they are like. They accept themselves too, I think, in most, most cases. They’ve gone through so much misery and they do not put up any fronts, not that I’ve experienced, anyway.

Participants often described the situation as being given “the whole person’s life on a plate” but in a rather jumbled manner. Understanding the most prioritized needs was thus not always easy. In addition, when the patient had mental illness and/or was continuing to use illicit drugs, it was often difficult to know whether they had understood the message in a conversation about health/ illness and care planning; it was difficult to interpret their reaction, and it was also difficult to stick to the topic. Being clear and straightforward was therefore one important communication strategy, delivering simple messages one at the time. Formulating simple messages about death and dying is challenging. When a patient was considered palliative and it was decided that no resuscitation was to be performed in case of emergency, the documentation of nonresuscitation was a marker for staff that communication between the patient and the physician about the patient’s prognosis had taken place. However, this did not always mean that the patient was willing to accept that he/she was no longer curable: S1: When you have that conversation I interpret it as, then it’s because it’s quite clearly palliative in orientation but then the patient in question won’t stand for zero CPR like—they want . . . of course you should try to get me going again, because it’s like they won’t accept the situation and have difficulty managing thoughts about death. I1: Hmm, mm. S1: Exactly, then it’s clear what this is about, because it gets complicated when we talk about this being a palliative person and the patient in question isn’t really happy with that line of thought and is just still in the denial phase. S2: I think it might be that you have to accept that there is denial. You almost have to, that you cannot override it like if you . . . I mean in some way the patient sets the pace for what they are prepared for.

The patients in the support home had often lived their lives close to death, with exposure to drugs, violence, cold, hunger, and so forth. Many times previously, they had also known others in their social circles who had experienced bad and lonely deaths with a lot of suffering, and without dignity. The level of anxiety among severely ill and dying patients in the support home was consequently often rather high. For this reason, although documentation of non-resuscitation provided staff with a “clear go ahead” for communication about death and dying, several participants said that if a patient wanted to

talk about his/her death, they were open to discussion, but they did not fully understand how patients would benefit from staff raising the issue.

Re-Defining Flexible and Pragmatic Care Solutions The support home was described as a place with an understanding of the social prerequisites for health, illness, and suffering—an understanding that other health services often lack with those who are homeless. The admitted patients had multiple care needs. Our participants described the medical problems of these patients as the type that under “ordinary” circumstances would not be too difficult to handle, but because of the very late stage of seeking help, a moderate illness would turn into one with severe consequences. The challenge was to treat the medical problems under the particularly complex circumstances. For example, participants describe treating a patient with liver cancer or a bad leg wound, while the patient simultaneously has a mental illness and uses drugs. In addition, most of the patients had “bad experiences” from previous health care and social service encounters. The participants believed there was a lot of mistrust and suspicion that initially had to be overcome before any treatment could be started. The participants learned that trying to solve all of a patient’s problems at once was seldom successful. Similarly, setting treatment goals according to routine guidelines for chronic heart failure or blood sugar levels in diabetes were often regarded as unrealistic in this context. Instead, they found that the best strategy was to take a more pragmatic approach, facilitating flexible care solutions. This, for example, meant prioritizing the most significant problem. They would not aim to cure or completely unburden the patients, but to do as much as possible to enhance well-being under the circumstances. In the care planning of the patients who were severely ill, it was often described to be difficult to assess their illness trajectory and to establish their palliative care needs. The following excerpt describes the complexity: And it is specific of course when the people who come here are so very, very ill, but you do not know which way it will go, and this has been the situation for a long time like, and the person in question continues the way they were before. And that’s when it’s really difficult, even though you never know what will happen, it’s difficult to express that, well, what needs exist. It’s not expressly palliative care, but there’s a risk it could be, although that risk has been there for a really long time . . . and the difficulty of continuing to plan around that person kind of.

According to the participants, it was also difficult to plan for care activities because the patients frequently did not

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adhere to expected routines or arrangements for health service activities. For example, patients would not fulfill a treatment procedure of chemotherapy or come to a previously scheduled X-ray appointment. The participants, especially in their first years of working in the support home, often regarded these matters to be frustrating. As they gained more experience, they came to understand that this resistance to societal rules and regulations might often be part of the problems in life that people who are homeless experience; that neither the individuals in question, nor the staff themselves, benefitted from setting goals that were too high. The staff needed to accept these patients for who they were and how they responded. To avoid unnecessary disrespect and bad treatment of the patients, staff also went to great lengths to inform workers in other departments about these matters. For example, staff would talk with the X-ray department when these patients were scheduled to come there. Working in the support home meant being persistently flexible, accepting that planned activities may not happen or need to be cancelled, or rescheduled to another day: “We solve everything on a week by week, person to person basis, you see, so you go in and check where you have the patient and what level they’re at.” Despite this, the participants stressed the idea of never judging a homeless person as impossible, or in terms of failure, and always patiently giving someone a new chance.

Discussion There is a significant difference between “ordinary” palliative care and the approach to palliative care in the support home described in this study. In providing care, common palliative care principles (cf. Radbruch et al., 2009) are continuously reconsidered and redefined according to conditional and experiential factors. There is often tacit individual, and shared understanding about the person receiving care. Consequently, the participants’ conversations tell of experiences of a collegial, but previously not reflected knowledge, which was integrated into their care practice (Bengtsson, 1993). Our subsequent and critical analysis further abstracted and transformed this knowledge (Bengtsson, 1995). Critical analysis of experiences gained, and/or reproduced in practice, is particularly important because experience and tradition may be obstacles to the introduction of new approaches and interventions (Choudhry, Fletcher, & Soumerai, 2005). We consider this study an example of knowledge building through experiences of care practice. As such, it is an important contribution to the development of tailored palliative care approaches for different groups of people, particularly the underserved, who do not benefit from existing structures and organization of palliative care (cf. Stajduhar & Tayler, 2014).

In this study, we disclose the importance of understanding the conditional factors and contextual awareness under which palliative care is provided. It can be argued that care in the support home, as described by our study participants, is the ultimate test of person-centered palliative care for the homeless. Enhancing quality of end-oflife always requires making exceptions and a flexible approach to care. In the context of homeless people, the most fundamental prerequisite for providing care is to respect each person’s individual story and needs, however ugly or odd. It requires taking a non-judgmental approach; deviating from policies and guidelines is more the rule rather than the exception. An emphasis on communication about death and dying is also embedded in guidelines for palliative care. This communication enables patients and relatives to make informed decisions about care planning; facilitates as much relief from suffering as possible; and prepares for death by summarizing life and “taking farewell” of loved ones (Radbruch et al., 2009). This principal poses great challenges in caring for the homeless. As indicated in our findings, it needs reconsideration, because these patients often have previous traumatic experiences of other people’s deaths. Moreover, they often lack or have poor relationships with family members or relatives. Hence, initiating communication about care planning, related to death and dying, needs to be sensitively weighted against the risk of harming the patient by exposing the social loneliness and intensifying feelings of anxiety and fear about the impending death. One prominent aspect of the care approach in the support home is related to dignity. In palliative care, this aspect of care is referred to as maintaining dignity (Guo & Jacelon, 2014), or as dignity of identity (Nordenfelt, 2004). There is the acknowledgment of the patient as a person with a biography, with a need for caregivers to diminish exposure and vulnerability in care situations (cf. Chochinov & Stienstra, 2012; Håkanson & Öhlén, 2014). Another domain of dignity is universal human dignity, which Nordenfelt (2004) claims to be untouchable, meaning that the human value of each individual is a universal constant, despite circumstances. This claim might call for some reflection in relation to people who have lived a socially exposed life in homelessness, often with traumatic backgrounds. In their reasoning about dignity, the participants preferred to talk about helping the patient to regain a sense of human dignity, which brings another dimension to the discourse of dignity in palliative care. This task, in particular, might require contextual, experience-based skills that go beyond palliative care education; in the support home, it was first and foremost based on trustful and respectful relationships. One important quality indicator in palliative care is choice of place of care and death (De Roo et al., 2014).

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Håkanson et al. The international literature reports an overall preference among people to receive care and die at home (Gomes, Calanzani, Gysels, Hall, & Higginson, 2013). Obviously, these studies do not take into account or reflect the preferences of people without a home; naturally, achieving death at home is a particular challenge both for care providers and for people who are homeless. In palliative care, family members are often the primary sources of social and emotional support, especially when the patient receives care and dies at home (Milberg & Strang, 2011; Sand, Olsson, & Strang, 2010). Given that family members can manage to share the patient’s illness experiences, a deep closeness can grow in a family relationship near the time of death (Stenberg, Ruland, Olsson, & Ekstedt, 2012). These essential dimensions are important in the context of caring for people lacking a home in the dual meaning of a physical place for rest and care, and an emotional space for mutual sharing of thoughts and experiences (Crafoord, 1997). Overcoming this conditional factor of patients lacking home and supportive relationships was a formal assignment for the support home, in terms of providing a homelike environment. There were no initial regulations on how this was to be achieved, or how far the idea of a home was to be stretched in terms of relationships. The participants described how the support home provided the patients with a “deputy home” and a “professional family” through environmental efforts and by building trustful and family-like relationships. This included dimensions of safety and closeness, but also for the staff, the challenge of keeping a professional distance. This meant not being too involved by losing their own personal integrity and becoming emotionally overwhelmed (cf. Sandgren, Thulesius, Fau-Fridlund, & Petersson, 2006). These findings illuminate how a “professional family member” can go to great lengths to support patients who are homeless in their emotional, physical, and social struggles.

Conclusion and Implications

Study Limitations

Ahmed, N., Bestall, J. C., Ahmedzai, S. H., Payne, S. A., Clark, D., & Noble, B. (2004). Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliative Medicine, 18, 525–542. Beijer, U., Andréasson, A., Ågren, G., & Fugelstad, A. (2007). Mortality, mental disorders and addiction: A 5-year followup of 82 homeless men in Stockholm. Nordic Journal of Psychiatry, 61, 363–368. Bengtsson, J. (1993). Theory and practice: Two fundamental categories in the philosophy of teacher education. Educational Review, 45, 205–2011. Bengtsson, J. (1995). What is reflection? On reflection in the teaching profession and teacher education. Teachers and Teaching Theory and Practice, 1, 23–32.

Although it is our impression that we provide significant findings in this study for further development of tailored, person-centered care for severely ill persons who are homeless, it is important to bear in mind that this is a single-case study. Moreover, we present an approach to care from the perspective of health and social service professionals. Patients in the support home might describe differently the approach and experiential outcomes of care in the support home. Socio-cultural differences might also be of relevance to consider, particularly in regard to welfare systems and safety nets related to homelessness within different societies.

Framed by conditional factors related to the illness panorama and life circumstances of people who are homeless, we present a tailored, person-centered approach to care, based on trustful and family-like relationships, redignifying of the patient, adjusted communication strategies about illness and dying, and flexible and pragmatic care solutions. This approach has been developed gradually through the combination of theoretical and practicebased experiential learning. The four patterns in the findings point to certain elements that are likely to be of significance when developing care models for severely ill people who are homeless, in various health service settings. However, given the sparse amount of supportive findings from previous research, further studies are needed, and are currently ongoing, to investigate experiential outcomes of this approach from the perspective of the patients. We also recommend interventions based on the significant features of this approach, in settings where people who are homeless will receive care at the end of life. Acknowledgments The authors sincerely thank the support home and all study participants for generously sharing their time and experiences.

Declaration of conflicting interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Erling Persson Family Foundation and Ersta Sköndal University College.

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Author Biographies Cecilia Håkanson, RN, PhD, is a researcher at the Palliative Research Centre and senior lecturer in the Department of Health Care Sciences at Ersta Sköndal University College, Stockholm, Sweden, and affiliated researcher in the Department of Neurobiology, Care Science and Society at Karolinska Institutet, Stockholm, Sweden. Jonas Sandberg, PhD, is vice dean and associate professor, Faculty of Humanities and Social Sciences, Jönköping University, Jönköping, Sweden, and associate professor at the Palliative Research Centre at Ersta Sköndal University College, Stockholm, Sweden. Mirjam Ekstedt, RN, PhD, is associate professor at Systems Safety and Organisation Unit, KTH Royal Institute of Technology, Huddinge, Sweden, and affiliated researcher at the Palliative Research Centre at Ersta Sköndal University College, Stockholm, Sweden. Elisabeth Kenne Sarenmalm, RN, PhD, is a research leader in the Research and Development Centre at Skaraborg Hospital, Skövde, Sweden, and affiliated researcher at the Palliative Research Centre at Ersta Sköndal University College, Stockholm, Sweden. Mats Christiansen, RN, MSN, is a PhD student and lecturer in the Department of Neurobiology, Care Science and Society at Karolinska Institutet, Stockholm, Sweden. Joakim Öhlén, RN, PhD, is professor in palliative care and director of the Palliative Research Centre at Ersta Sköndal University College, Stockholm, Sweden, and guest professor at the Institute of Health and Care Sciences, The Sahlgrenska Academy and University of Gothenburg Centre for PersonCentred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.

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Providing Palliative Care in a Swedish Support Home for People Who Are Homeless.

Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underser...
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