A qualitative investigation of the palliative care needs of terminally ill people who live alone
Article Outline
Summary
This paper investigates the support needs of people living alone with a terminal illness from a client perspective. In depth, interviews were conducted with 11 clients from Silver Chain Hospice Care in Western Australia to capture their personal experiences of managing at home alone and to assess their physical, social and emotional needs. Findings provided useful insights with respect to many of the motivations, beliefs and wishes of individuals who endeavour to cope on their own with minimal assistance. The needs of these individuals are practical, emotional, physical and existential. At the heart of these concerns is a strong need to be independent and maintain a sense of dignity at end of life.
Keywords: Palliative care, Community, Home alone, Hospice
Introduction
Community and home-based palliative care services are facing increasing challenges in service provision due to an ageing population, an increase in the number of people living alone who require care, a decrease in the availability of family caregivers and a preference to be cared for and die at home (Hinton, 1994, National Centre for Social and Economic Modelling, 2004; Skett, Clark, Skinner, Smith, & Oldham, 2004).
A recent Australian scoping study explored the issues of palliative care patients living alone without a primary caregiver, to provide evidence-based information to assist with service planning for this growing population. Findings from the provider perspective phase of the scoping study were reported in Aoun et al. (2007). Previous to this study, no studies have been undertaken to examine care issues related to palliative care clients living alone. These studies had mainly examined place of death as an outcome, with status of caregiver arrangements only considered as a peripheral finding (Brazil, Bedard, & Willison, 2002; Cantwell et al., 2000; De Conno et al., 1996; Grande, Addington-Hall, & Todd, 1998; Grundy, Mayer, Young, & Sloggett, 2004; Gyllenhammar et al., 2003; Higginson, Astin, & Dolan, 1998; Hinton, 1994, Jordhoy et al., 2000; Karlsen & Addington-Hall, 1998; Van den Eynden et al., 2000). Individuals living alone were mentioned as a sub-group of the total study sample and the absence of a caregiver was cited as one of the factors associated with decreased likelihood of a home death.
Analysis of services records from the scoping study (Aoun et al., 2007) confirmed previous reports that people living alone with a terminal illness had more hospital admissions and were less likely to die at home than those who had a caregiver. Furthermore, the scoping study reported that clients without a caregiver needed considerably more assistance with hygiene, more home help, and management of their care required more liaisons with other health professionals, compared to those with a caregiver. Also, service providers reported spending additional time per visit providing support tasks to those with no caregivers mainly in daily living, symptom control, housekeeping and emotional support.
Although the feedback from the service providers is valuable in planning support structures and improving the services, it is essential to identify the needs of clients directly. This paper reports on the perspectives of clients living alone, receiving palliative support from a community-based service in Western Australia.
Methodology
The methodology consisted of face-to-face interviews with clients from both metropolitan and rural settings, to capture their personal experiences of managing at home alone. Clients were recruited from Silver Chain Hospice Care Service (SCHCS) and Silver Chain Nursing Association in Western Australia. Ethics approval was granted by Edith Cowan University Ethics Committee and SCHCS Ethics Committee.
A semi-structured interview protocol was used to assess physical, social and emotional needs. Interviews were recorded and transcribed and content thematic analysis of issues was undertaken. Research team members coded the transcribed interviews independently, compared coding and developed themes based on consensus with the aim of capturing all data as completely as possible. Confirmation of the methodology was addressed through peer review, maintenance of an audit trail related to data collection and coding and by endeavouring to provide sufficient detail and exemplars within the report.
In addition to the interviews, participants completed two instruments to assess their functional status at the time of the interview: the Barthel Index and the Australian Modified Karnofsky Performance Scale. These instruments provided an estimate of the clients’ level of independence and functional abilities. The Barthel Index (BI) is a simple index of independence that measures the ability of individuals with functional difficulties to provide self-care (Mahoney & Barthel, 1965). Repeated use of the BI over time allows for an assessment of changes over time. The values for each of the 10 items on the index are based on the time and the amount of assistance required in performing a particular activity. An overall score is provided, ranging from 0 to 100, based on the sum of each of the 10 item scores.
The Australian modified Karnofsky Performance Scale (AKPS) (Abernethy, Shelby-James, Fazekas, Woods, & Currow, 2005) measures the functional status of individuals. A percentage score, ranging from 0 to 100%, is assigned to individuals based on the selection of 1 of the 11 possible descriptors of their current level of ability. The modified Karnofsky was used because it has been shown to be more appropriate and sensitive to clients receiving care in a home setting. This instrument is better suited to community-based palliative care, whereas the original Karnofsky is better suited to assessments in the hospital setting (Karnofsky, Abelmann, Craver, & Burchenal, 1948).
Characteristics of home alone clients
Twenty-one individuals were referred to the study by the community-based service; however, 11 participated in the study. Of the 10 individuals who did not participate, 1 individual was not contactable, 1 individual declined because of the belief that being interviewed would precipitate hospitalisation, 2 individuals changed their minds and withdrew consent, 5 individuals became not well enough to be interviewed, and 1 individual died prior to the interview date.
The eight participants living in the metropolitan area were interviewed in their homes, whereas the three participants living in rural areas were interviewed over the telephone. Eight of the 11 participants in the study were female, the mean age of the sample was 73.6 years (S.D.
=11.5) and the majority were widowed.
The median length of time since diagnosis was 1.9 years (range 0.25–10 years), and the median time the sample had been receiving community-based palliative care was 3.0 months (range 1–19 months). The median score for the BI was 95.0 (range 45–100), indicating that participants were still independent and continent, on a scale from 0 to 100. For the modified KPS, the median score was 65.0 (range 40–80), indicating that on average, participants were still able to care for self, but unable to carry on normal activity or to do active work, on a scale from 10 to 100.
Findings from interviews
Results from the client interviews revealed issues in four domains that were important to palliative care clients in the community who were managing at home alone: physical needs, social needs, emotional needs and existential considerations.
Physical needsThe purpose of asking participants about their physical needs was to identify the type and amount of support they required to carry out basic activities of daily living (ADLs). Because of the stage of the disease and because of the inherent independence of this particular group of people, none of the participants required help with the basic activities of daily living (e.g. washing, dressing, getting out of bed and cooking). Three sub-dimensions of physical needs emerged: erosion of ability to care for themselves due to physical changes, the importance of home help to manage physical needs, and the value of respite.
The key physical issue identified was the gradual erosion of the participants’ ability to care for both their bodies and their close physical surroundings. There was evidence of a gradual erosion of participants’ abilities to carry out activities.
“It's a small thing, but making the bed is a bit of a hassle sometimes. And I think if I can’t lift up things, I say why am I making the bed because you like to turn your mattress over and you can’t and things like that. I guess and I don’t make my bed as much as I should.” (Participant 3)
A further erosion of perception in ability to self-care, for one 82-year-old participant, resulted from a loss of confidence, following his return home from hospital, about being alone in the house when he took his morning shower. He was quite able to shower himself, but worried about falling, and therefore felt more secure with a friend present.
“[A] friend comes early in the morning and then I have a shower. I shower myself of course but I, I prefer to have someone here in case I fell over or do something like that. I think I feel alright but it's just a precaution… in the hospital of course when you’re surrounded by people there. I used to shower myself but there was a red button to press to help if you’d got into trouble. But I didn’t get into trouble and the same here. I shower myself. There's a chair in the shower which they brought since I come out of hospital, there is a shower on a hose.” (Participant 10)
Of those participants who were no longer able to do their shopping, most reported that either family or friends did, or took them shopping. However, there was some evidence of an erosion of independence in the context of “in-between times”. That is, for some participants their level of fatigue, declining mobility, or pain made it difficult for them to travel to the shops on their own for the fill-in items.
“… Well you haven’t got what you need all the time. There's always something missing. … I used to cross the road, now I can’t get over because you’re getting half way and you’ve got a bit of a pain and you’ve got to step back. So things are sort of difficult. In fact I wish I knew what was going to happen next.” (Participant 1)
Little was said by participants about their experiences of pain, or about the ways in which they managed their own analgesia or other medications. However, one participant talked about the confusion she experienced when the pharmacy substituted generic drugs, the drug manufacturers changed the packaging, or the doctor changed the dosages.
“I get confused with it [the drug packaging]. There was another problem earlier on, I forget what that was now…and the dosage and that sort of thing. And the names … they do change the names quite a bit you know, and the packaging has changed quite a bit. That costs you, what you can ill afford. Another four fifty a week. It isn’t the money. It isn’t quite right somehow to get, because when the doctor changed the medicine, it's a lot of argie-bargie again isn’t it?” (Participant 1)
None of the participants, other than the man who felt insecure about falling, mentioned the possibility of their safety being compromised. However, some participants did have an alert link system installed that provided them with a sense of security should they require emergency assistance. In most cases the alert link system had been purchased by a family member. Although one participant might have benefited from an alert link system, she did not feel that she could afford the cost.
“…they have these button things don’t they? Someone mentioned it along the line but nothing happened. Something else you’ve got to pay a lot of money for. You’re limited to how much because I don’t, I don’t even go and get money out, I believe in keeping my books straight, that sort of thing.” (Participant 1)
Within the physical domain the importance of home help was repeatedly mentioned.
Home Help: Perhaps the most widely accessed support service described by participants was the home help service. Home help referred to having someone who came in and helped with some cleaning around the house. The service was arranged through the community nursing service, the local council, or privately. For the most part, participants did not ask for help as a matter of course, preferring to wait until it became necessary. For example, one participant had not asked for this kind of help until he experienced some bleeding.
“I’ve just recently asked the City Council for a bit of domestic help because the particular illness I’ve got, it's a tumour in the ethmoid [sic] sinus which means if I bend over too much, I bleed. … I had a small bleed this morning….simple things like vacuuming and dusting is a problem because the airborne dust starts up a sneezing fit…no one is [sic] actually done anything for me yet, but it's in the pipeline.” (Participant 4)
One 82-year-old participant received help with cleaning. However, she only accepted this help because if she did her cleaning herself, she became exhausted. The participant therefore had to make a choice between independence and the quality of life she gained by having more energy for other things.
“Well I’ve got this home help lady who comes every fortnight…she's been twice, or three times now but really I could do it, all she does I could do just the same. I might take longer and miss it because I don’t particularly fancy it that day, but I find that if I do hoovering, I’m a bit exhausted and then it's what do I do now? I go to sleep or go to bed or rest. It's not much of a day just hoovering and then going to bed is it?” (Participant 2)
Most participants were able to describe the kind of support they received from family and friends, and the frequency with which they received such support. In this context, there was evidence that friends, in particular, were able to recognise an escalation and de-escalation of need associated with the changing effects of treatments received by the participants.
“Well I had … my friends here when I was going through my real bad times. They were here every day. … Now I do the washing and I get my mates to hang it out. I just, I’ve got everybody here, you know, they’re just falling over backwards, but it's like everything else, is it going to last forever? … people change, life changes, varying circumstances you know.” (Participant 3)
Another participant identified clearly the extent to which she valued the help and support provided by her neighbours and friends, while also recognising that not everyone living alone was as lucky as she considered herself to be.
“Yes I’m also blessed with a neighbour who's old and you know has difficulty with her sight, but is just amazingly caring. So I’m blessed with that.” (Participant 9)
Respite care: Although most participants had considered the idea of respite care, there were only a few participants that talked directly about their experiences. Most of the participants were not at a stage in the disease process where respite was necessary and the majority emphasised their desire to stay at home for as long as possible.
“I know I can go into hospital just for even a few days to a week just to get me back on my feet again… when I say I’m having a cancer attack…it's just someone that's going [to] look after me, look after my meals and that, I don’t have to worry about a thing. But I can only take that kind of luxury for a few days and then I need to go home.” (Participant 6)
Social needsParticipants all experienced a gradual decline in their abilities to move out of their homes and consequently most demonstrated a reduction in the social activities they had previously enjoyed. However, perhaps because these participants had lived alone for varying periods of time, and were inherently independent people, the impact on their social needs was not reported as being extreme. Indeed, for two of the participants the restriction represented an extension of their normal experience; one reporting that she had never made friends and the other reporting that she had always preferred her own company. Nevertheless, one of these participants did feel that it was difficult to form social attachments because of the lack of continuity in the provision of home help.
“No I’ve grown away from it all. I haven’t one friend here, one that I care about. You have them [Home help] a little while and they just whip them away and give you another one. Ain’t very nice. They don’t like them to get too attached or you to get too attached [to them] I don’t know which it is.” (Participant 1)
Another participant talked about the decline in her ability to get out and about, either to visit the shops or post a letter, and the frustration she experienced because of it.
“I can’t walk up the shops. My legs won’t carry me that far. Even walking up to the letter box just up this little bit of an incline, I’m pooped out by the time I get there and coming back I, I make a couple of stops on the way, not get my breathe back but you know, it tires me out. So by the time I get back in I’m glad to sit down. You know what I mean? Just a few simple things like that. It's frustration more than anything that's getting at me.” (Participant 6)
It was not only the fatigue or pain experienced by the participants that affected their abilities to meet their social needs, but also other effects of the cancer or treatment process. One 54-year-old man who was otherwise still able to get out and about, felt reticent about doing so because of a perceived facial disfigurement caused by the cancer.
“I wear a pair of sunglasses to go to the shops… it's in my head that I can see this thing growing, I can notice a change in my facial features and when I have a shave and things like that and maybe it's in my head that people look at you. In actual fact they’re just looking at you normally, but it's psychologically difficult for me.” (Participant 4)
The same participant also identified another important reason why he felt it necessary to reduce his social activities; a fear of being pitied.
“I forgot to mention when we were talking about social interaction - I don’t want sympathy. I don’t want people to come up and say, ‘Oh you poor thing,’ and you know, I don’t mind discussing my disease, I don’t mind, I’m quite open about the outcome of my disease. But I certainly don’t want, ‘Oh you poor dear’, and you know all that kind of bloody stuff that's, so that's one reason why I’ve stopped socially.” (Participant 4)
Some participants did manage to get out and about socially, albeit in a diminished form, but recognised the impact of doing so.
“I went out this morning. I went to a coffee shop with some ladies from the church. I like going out for coffee, lunch or something like that. But tea time I’m really pretty tired then. I don’t feel like company you know, I’m just too tired…I’ve had this fatigue, right, right from the beginning. You know, they say rate it between one and ten and I say well how about ten plus.” (Participant 6)
Most participants talked about the importance of contact with their families, something which appeared to compensate for their loss of external social activities. In some respects, the importance of family contact was amplified by the isolation caused, not so much by their living alone per se, but by the constraints imposed by the cancer or its treatment on the isolation caused by living alone.
“They don’t know how important that little bit of rubbish they run on about is in my mind, sometimes they only have to talk rubbish and because every ten years the world changes out there. Things have changed. My daughter phones me and I always wants to know what my grandson's done you see, what he's done. I want to know what he's up to and those sorts of things I’m interested in. I want to know how life is treating them.” (Participant 1)
In most cases, participants observed that they had adapted as well as they could to the restrictions imposed on their social activities, and believed there was support to help them get out and about if they needed or wanted to. Equally, and again it was not clear if this was a generational effect, most participants talked about keeping themselves occupied in various ways.
“I try and do things that take my mind off it. I’m watching the tennis from now until Wimbledon. And I’ve got pay TV so I can watch all sorts of anything in the night and that's why my daughter got it for me for because I might wake up in the night or I play solitaire on the computer. It doesn’t require any energy, no brains, no nothing.” (Participant 2)
Emotional needsA strong desire for independence underpinned all the issues related to living alone. Participants did not talk about their emotional experiences of living with cancer, nor did they express any emotional issues connected with living alone. Most of them explained this by way of observing that as they had always, or for a long time, lived alone, they had adjusted to not having anyone to talk with about their emotional experiences.
“I think everyone's got their own way. I guess it's really personality. Whether they can take it, like some people can live on their own, live with themselves and some people can’t. I’m a person that can.” (Participant 6)
To this extent, most of the participants described this silence as a part of being independent, and as a way of being self-sufficient or resilient in the world. However, all the participants identified the emotional importance of being, and remaining, independent; a theme that has permeated the narratives of the participants throughout this study.
“I like this place because I see out. I like the windows. I could have found a better place if I’d had the money I suppose, but I don’t feel too imprisoned here. That's what's wrong with nursing homes; you can be imprisoned can’t you? You have to go down to breakfast at a certain time. Well I’d never make it to breakfast.” (Participant 1)
The same sentiment was reflected by another participant; the importance placed on the freedom experienced in her own home.
“I should be lost without my little place here. If I want to walk I can walk several times a day. I can go in my pyjamas if I want to. I’m free really. I don’t really think I could do anything else.” (Participant 2)
Another participant exemplified the spirit of independence as part of his emotional self, perhaps summing it up for all the participants in this study.
“I don’t want to rely on people, I don’t want to hoist myself on people…If it gets that bad, I will eventually, might have to do it. I’ll stay. I’ll fight it as much as I can.” (Participant 6)
Regarding the availability of family or friends that might be reachable in the event of a sudden decline in health, or some other emergency, most participants reported that they would have access to such support. However, for some, either this kind of support was not available or they would refuse to accept it. For others, the support of family was not possible because of their geographical location, and for others the desire to remain independent and at home, was paramount.
“Well I suppose I could stay with my daughter but I don’t want to do that. You can’t really live with your daughter and family. Well I can’t anyway. But I can handle it on my own.” (Participant 6)
Existential considerationsParticipants said little about their emotional lives compared with the information that they provided about the practicalities of just getting on with life as they talked about their approach to coping with their illness and impending death independently. Most participants had experienced the deprivations of war, either directly or indirectly. Such a generational experience perhaps accounts for the observation that they talked of living each day as it comes, of facing up to difficulties, and of being stoic in the face of adversity. This existential view may have been partly influenced by the culture and circumstances that surrounded these people during their formative and young adult years.
This observation is relevant because, in the main, the participants did not describe the types of support they might have required that would have helped them to remain at home for as long as possible. Moreover, they did not demonstrate a willingness to contemplate the kinds of events that would impact on their ability to stay at home until the end of life. However, one participant clearly stated her preference about what she wanted to be at the end of her life.
“I want it to be at home. Yes, to the end of life. Might get a bit of luck and go nice and quietly as I should. Can’t choose it can we?” (Participant 1)
Another participant implied that she would feel lost, uprooted, if she had to leave her home, and reflected on the experience of her mother-in-law.
“I couldn’t stand it if I walked out of the door and there was, as my mother-in-law said once, “I’ve got nowhere to go,” because they put her in a flat in town and she was used to a big garden. She said I’ve got nowhere to go when I go out of the front door. And that's what I would feel if I haven’t got this around me, I feel that it's part of me in a way now.” (Participant 2)
Yet another participant echoed a similar sentiment about familiarity, and the importance of dying with dignity, which for him meant staying at home for as long as possible.
“I asked my hospice doctor if he can treat me here for as long as possible. He's agreed to that. I don’t want to finish up in some kind of barn waiting for God. So the doctor's assured me that he will treat me here as long as he can and then he said, ‘by the time I do have to move you, you probably won’t care or you probably won’t know that you have been moved, and, and you certainly won’t care’. So that's, just a bit dignity.” (Participant 4)
Only one participant identified that it may not be practical for her to stay at home until the end of her life, but framed it in terms of not being able to stay with her family. She also reflected an idea contained in the words of other participants; that it really is difficult to know about such things until the time comes.
“Well I couldn’t, I don’t think it would be practical. No I don’t, there's nobody who would be here to stay with me all that time. They just couldn’t, not day and night. They’re just too committed to their work and things. I just don’t think they could. That's the position I’ve made that, that's what happens. I don’t know how long it might take. Three months, six months, twelve months, I don’t know. I, I live from day to day because I really don’t know how long these things take. Some people whip away in six weeks with cancer. I know young people have something on their leg and they’re, they’re dead in six weeks. Healthy looking people, you know, I mean you don’t know. So this is the thing that, I can’t see and I can’t monitor it at all apart from the odd bit of pain.” (Participant 2)
Discussion and conclusion
It is important to recognise that all participants had been living alone for varying, and sometimes considerable periods of time prior to the acquisition of an advanced cancer diagnosis. Therefore, all of the social networks, and most of the support participants accessed had been established in the context of a prolonged period of solo independent living. The notion of maintaining independence was extremely important to participants because it determined the participants’ judgements about if, how much, and when they allowed individuals and agencies to provide support.
It is also worth noting that the 11 individuals that we were able to interview from the initial larger pool of 21 were not at the end-stage of their disease (the median length of time since diagnosis was 2 years, and the median time they had been receiving community-based palliative care was 3 months). Therefore, they were still independent and able to care for themselves, although unable to do active work, as confirmed by the reasonably high scores from Barthel and Karnofsky scales. None of the participants required help with the basic activities of daily living. However, they raised concerns about their ability to cope should their physical functioning deteriorates. Independence was highly valued and changes that triggered threats to this independence were stressful.
Four key areas of concern were relevant in the accounts of clients endeavouring to manage at home alone with their palliative illness. These included:
Findings from this study provided useful insights into many of the motivations, beliefs and wishes of individuals who endeavour to cope on their own with minimal assistance. The needs of these individuals are practical, emotional, physical and existential. At the heart of these concerns is a strong need to be independent and maintain a sense of dignity at end of life. It appears that these individuals had chosen to live independent lives and, whether by choice or circumstances, their commitment to remaining independent had provided them with the will and resilience to manage life's exigencies. For these participants living alone, with or without the need for palliative care was, in the final analysis, a matter of choice and of dignity.
Although this study has provided useful insights on the needs of people living alone at the beginning of their disease journey, we need to still explore such needs at the end of the journey. To this aim, a longitudinal study would be valuable in tracking the changing preferences, experiences and service utilisation as disease progresses. Such study would provide an understanding of what influences choices of place of care and place of death and service utilisation for terminally ill people living alone. This ultimately could inform service delivery leading to improvements in health related quality of life before death.
Acknowledgements
The authors gratefully acknowledge the Australian Government Department of Health and Ageing-Palliative Care Section for their financial support. Many thanks to Ms Kim Skett for facilitating the interviews with Silver Chain Hospice Care clients and to Dr. David Wall for undertaking the interviews.
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© 2007 Royal College of Nursing, Australia. Published by Elsevier Inc. All rights reserved.
