Original Article
Older people living alone at home with terminal cancer S.M. AOUN, BSC (HONS), MPH, PHD, PROFESSOR OF PALLIATIVE CARE, School of Nursing and Midwifery, Curtin University, Perth, Western Australia, K. DEAS, PGRAD NURS, RN, RESEARCH OFFICER, School of Nursing and Midwifery, Curtin University, Perth, Western Australia, & K. SKETT, BNSG, POST GRAD DIP NSG, MNSG, QUALITY COORDINATOR, Silver Chain Group, Perth, Western Australia, Australia AOUN S.M., DEAS K. & SKETT K. (2015) European Journal of Cancer Care Older people living alone at home with terminal cancer This study describes the lived experiences of older people coping with terminal cancer and living alone, focusing on how they face challenges of the biographical life changes from their disease progression. Faceto-face semi-structured interviews were conducted in two phases with palliative care clients of a community-based service in Western Australia (2009–2011): Brief interviews with 43 cancer patients who live alone and then in-depth interviews with 8 of them. Using biographical disruption as the analytical framework for interpreting the qualitative data, four main themes emerged: Biographical disruption: adjusting to change; Biographical continuity: preserving normality; Biographical reconstruction: redefining normality; and Biographical closure: facing the end. Biographical disruption was a suitable framework for analysis, permitting identification of the biographical disruptions of the individual’s world and the reframing that is undertaken by the individual to maintain autonomy and independence while acknowledging and accepting their closeness to death. Understanding the factors associated with the individual’s need to maintain their own identity will enable nurses working with this population to tailor support plans that meet the individuals’ needs while maintaining or restoring the person’s sense of self. Interventions that directly address end-of-life suffering and bolster sense of dignity and personhood need to be considered.
Keywords: living alone, cancer, older people, biographical disruption, palliative care.
I N TR O DU C TI O N A significant proportion of older people in the developed countries will spend the last year of their life in poor health and with a considerable burden of palliative care needs due to social isolation, co-morbid conditions and frailty (Rolls et al. 2011; Hanratty et al. 2013). This has raised and continues to raise challenges for the provision and delivery of health and community services at the
*Correspondence address: Samar Aoun, School of Nursing and Midwifery, Curtin University, GPO Box U1987, Perth, WA 6845, Australia (e-mail: [email protected]).
Accepted 23 February 2015 DOI: 10.1111/ecc.12314 European Journal of Cancer Care, 2015
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end of life. The growing population of people living alone and the reduced availability of informal caregivers together mediate the capacity to remain at home at end of life (Aoun et al. 2014b). Social support, respite care, assistance to maintain independence and safeguarding from isolation were reported as needs of palliative care clients living alone which could become more of a challenge as people reach the end of their lives, with the associated disability this transition often brings (Aoun et al. 2008). The profile of terminally ill people living alone is highlighted in a study that analysed 721 records from three large Australian home-based palliative care services (Aoun et al. 2007). Home alone clients made up between 7% and 12% of the total caseload of these services at the time; 47% were male; mean age at death was 75 years and 97%
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had cancer. The clients had been living alone at home for a median of 13 years. Cancer patients who live alone reported more distress, poorer adjustment to diagnosis and had a poorer quality of life than those living with others (Grundy et al. 2004). Higher death distress, as well as psychological distress, was significantly associated with living alone (Chibnall et al. 2002). In a study on quality of life of older people with newly diagnosed cancer, Esbensen et al. (2004) reported that the oldest group (80 years and over) were more often living alone, had a limited social network and needed more support for home help services than the younger participants. Dependency, getting help from their adult children and needing help in daily living were related to low quality of life (Esbensen et al. 2004). The older person living alone with terminal cancer and associated life restrictions experiences isolation and loneliness (Victor et al. 2000). Often psychosocial and spiritual needs of these patients may be unmet by health professionals (B€ ussing et al. 2007; Devik et al. 2013) resulting in a potential loss of identity and ‘sense of self’ (Charmaz 1983). Emphasising the importance of finding meaning at end of life was reported in a study on end-of-life preferences in advanced cancer patients (Miccinesi et al. 2012). Widowhood and retirement can contribute to the older person’s vulnerability, particularly when living with terminal cancer (Devik et al. 2013), desiring supportive and enduring relationships with family and friends to meet their spiritual needs, maintain a ‘sense of self’ (Victor et al. 2000) and lessen existential loneliness (Sand & Strang 2006). With increasing disability from advanced cancer as well as limitations associated with ageing, living alone could further restrict the person’s sense of normality and ability to maintain social networks (Devik et al. 2013). Spiritual well-being may be compromised through an individual’s declining independence towards the end of their lives and subsequent reduced purpose and meaning in everyday life (Edwards et al. 2010). The interview data for this article were drawn from a larger study, the Home Alone Models of Care Project, for Silver Chain Hospice Care cancer clients who lived alone. The study comprised a pilot randomised controlled trial of two models of care (either a personal alarm or extra care-aide time) for people living alone at home while receiving palliative care in comparison to standard care (Aoun et al. 2013). Interviews with clients on the two trialled models of care showed that personal alarms provided a sense of security and reduced feelings of isolation while additional care-aide time assisted with activities of daily living, enhanced quality of life, maintained dignity and decreased feelings of loneliness (Aoun et al. 2012). 2
A IM This study describes the lived experiences of older people coping with terminal cancer and living alone, focusing on how they face challenges of the biographical life changes from their disease progression.
METHODS Ethical approval was granted by the Human Research Ethics Committees of Curtin University and Silver Chain to undertake the study. A home alone client was defined as a client who lives alone and does not identify as receiving any care, emotional or physical, from an unpaid carer.
Conceptual framework Chronic or disabling illness is considered by Bury (1982) to be a ‘biographical disruption’ during which the individuals sense of self-worth and interpersonal relationships may be challenged (Bury 1991). A terminal cancer diagnosis for people who live alone without a carer may be seen as highly disruptive to their way of life and a threat to their identity as people living independently (Reeve et al. 2010). Therefore, using biographical disruption in association with rebuilding the individuals’ identity or biographical reconstruction provides an appropriate framework in which to explore the experiences of home-based palliative care patients who live alone with terminal cancer.
Setting and participants The study was conducted in 2009–2011 in collaboration with Silver Chain Hospice Care Service, a communitybased organisation in Western Australia, providing palliative care to patients residing in the metropolitan area, Perth. The service nurses consented and referred clients to the study. Forty-three of the recruited 58 were able to complete the study. All clients whether they were randomised to the two models of care or standard care completed a questionnaire on outcome measures administered by the researcher at baseline and 3-month follow-up at the clients’ home. The questionnaire included closed and openended questions (more details on methodology and results in Aoun et al. 2013).
Design and data collection This study adopted a qualitative research design and was conducted in two phases. In phase 1, all participants who completed the intervention (n = 43) were © 2015 John Wiley & Sons Ltd
Older people living alone at home with terminal cancer
. . .that’s the worst time. Especially when you see something on the tele and you turn around and say [wife’s name] ‘Did you see that?’. . .Yeah. . .oooh. . .Oh I just lie there thinking about her and sometimes it brings tears to my eyes you know. . . (P49; IDI)
Biographical continuity: preserving normality Stoicism and an optimistic approach Coping was considered as being part of their life, as something that just happens, something that is natural: ‘Well, you just do it [cope] naturally, love. It didn’t trouble me.’ (P28; IDI) Certain stoicism was evident and an optimistic approach was demonstrated by participants to dealing with their cancer as they chose to focus on preserving normality and continuity for the sake of family: . . . since I’ve been told I have cancer, instead of focusing on the fact that I have cancer, I focused on the fact that I need to get better. . .You know, rather than sort of sit here and feel sorry for myself and think, ‘Jeez I’ve got cancer, what am I going to do?’ My focus has been to get better for the sake of my grandchildren, to be perfectly honest. (P43; IDI)
inconvenience others: ‘No it’s not good; it takes out of her [daughter’s] time.’ (P39; IDI). The main challenge that would disrupt participants living and coping on their own was getting too sick: ‘[I] would prefer to remain at home for independence but physically unable to do this’ (P07; BI). This is another acknowledgement of having a sense that their biographical coherence could be compromised. Many participants were concerned about not wanting to be a burden to their families, ‘I don’t want to go to a hospice - however I don’t want to burden my children.’ (P6; BI), worrying it would be too much responsibility. Hence, the drive to be independent – and for biographical continuity – affected end-of-life decision-making: ‘I don’t want to put my children through any trouble – I have already planned my funeral. . .I paid it off over many years.’ (P19; BI), with the common theme of avoiding burden: ‘. . .because I don’t want one of these lingering things, ‘cause I can see you know, how it can affect the family.’ (P51; IDI)
Biographical reconstruction: redefining normality
Support from family and friends Family or friends who provided support along the disease journey were often mentioned as participants attempt to continue with normality in their lives during their illness, demonstrating biographical continuity and their sense of self:
Maintaining independence Participants’ determination to maintain independence, despite failing health, often involved reconstructing or redefining normality and acceptance of help. Some help was acknowledged as being needed by this participant, and that this assistance gave her more confidence, highlighting the compromises people living alone at the end of life need to make to achieve their all-encompassing goal of maintaining independence and a sense of self:
. . . I must admit, throughout the whole of my illness I couldn’t have got by without the support of my family and friends. . . I didn’t want anyone to give me sympathy but it was just nice to know that people are there. . . like getting this hat today from a friend who lives so far away. You know, I think that’s really special. (P43; IDI)
Well actually it’s [having a care-aide] given me great confidence. Like before I was a wee bit up in the air. . . I will never, touch wood; go into a nursing home or anything. I want to stay in my own home. I’m, a private person, if you know what I mean and I don’t like people having to do things for me, if I can do them myself. (P40; IDI)
I’ve got a couple of friends of mine. . . and every so often they say come down. . .oh she’s had cancer herself and she’s a very nurturing sort of person. So occasionally. . .I go down there and I kind of get looked after. (P53; IDI)
Reluctance to accept help A reluctance to accept help is another reflection of a desire to hold fast to their independence, as participants thought it could burden or
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Nurturing relationships and social networks The perception of the availability of formal support gave the feeling that participants could live alone at home independently with an illness: ‘There’s so much support around these days to help people like me, you know’ (P43; IDI). Participant 28 who could no longer travel by bus regained some of her independence when her GP provided some taxi vouchers: ‘I think it was one of the doctors who
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Table 2. Summary of themes and corresponding sub-themes Theme
Sub-themes
1: Biographical disruption: adjusting to change
Adjusting to changing social relationships and networks Loss of independence and increased loneliness Stoicism and an optimistic approach Support from family and friends Reluctance to accept help Maintaining independence Nurturing relationships and social networks Acceptance of support Spirituality – connection to nature and pets Normalising death Remaining at home until the end of life Existential reflections
2: Biographical continuity: preserving normality
3: Biographical reconstruction: redefining normality
4: Biographical closure: facing the end
Themes Four main themes emerged using the analytical framework of biographical disruption (Table 2): (1) Biographical disruption: adjusting to change; (2) Biographical continuity: preserving normality; (3) Biographical reconstruction: redefining normality; and (4) Biographical closure: facing the end.
Biographical disruption: adjusting to change Adjusting to changing social relationships and networks Changes in participants’ social relationships since their illness signalled the start of biographical disruption. This participant acknowledged that changes in his body and his ‘sickness’ presented a challenge to some of his friends and positioned him as an outsider and different from them. He reflected about how some of his friends were fearful of his illness and did not feel comfortable enough to visit him. . . .‘other friends I see occasionally, yes, but not a lot, no. That’s what it comes to. . .Yeah, it’s very true, people sort of drop off..’ (P53; IDI) Social activities were a significant aspect of people’s lives prior to their illness and an end to such activities also beckoned biographical disruption: ‘I used to enjoy gardening – but can’t physically do this now’ (P03; BI); ‘[I have] a diminished QOL by not being able to drive and get out’ (P32; BI). One participant described how active he had been playing bowls and how he had to give it all up due to the deterioration in his own health. This participant described how he modified his activities: No I don’t go to bowls now, no. . . you see, I was Captain at [Name] for six years. I said, ‘No it’s too much. . .’ Oh yes. I just give it up altogether. And, I was asked the other day please come back and take over. I said, ‘No thank you.’ . . .I don’t want to do anymore organising. . . I get too concerned you see. (P49; IDI)
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Another participant found it very difficult to give up what was an integral part of her daily life and her identity, as she described how active she had been in charity work and providing support for others before she was diagnosed with cancer: I was in everything; I was out every day of the week. . .very active. I used to work for [charity] church. . . I worked in the shop, and. . . I used to go out with food parcels. . .I was a minister of the Eucharist and all this that and the other. . . (P40; IDI) While missing the social interaction of her charity work, an acceptance of a modified social network helped individuals to adjust to biographical disruption: . . .I haven’t had the interaction of actually going and doing my volunteer work, but. . . people keep in touch and they phone and . . .bring cars round and we go out for a little drive somewhere. (P43; IDI)
Loss of independence and increased loneliness Living alone with cancer and other disabilities has resulted for some participants in a fracture to their sense of self and hindered feelings of freedom and autonomy: ‘The driveway is too steep. [My] legs are getting weaker, I may be needing to mainly be in a wheelchair’ (P56; BI); ‘That’s not like me, I am usually happy with my life’ (P45; BI). A participant dealing with macular degeneration as well as cancer spoke about how she used to enjoy travelling regularly on the local community organisation bus trips to maintain independence; however, when her mobility and vision declined she was not permitted to travel on the bus: ‘They won’t allow me on the bus anymore’ (P28; IDI). Social losses compounded feelings of social isolation as evidenced by one participant’s poignant comment about his loneliness since his wife’s death:
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Older people living alone at home with terminal cancer
. . .that’s the worst time. Especially when you see something on the tele and you turn around and say [wife’s name] ‘Did you see that?’. . .Yeah. . .oooh. . .Oh I just lie there thinking about her and sometimes it brings tears to my eyes you know. . . (P49; IDI)
Biographical continuity: preserving normality Stoicism and an optimistic approach Coping was considered as being part of their life, as something that just happens, something that is natural: ‘Well, you just do it [cope] naturally, love. It didn’t trouble me.’ (P28; IDI) Certain stoicism was evident and an optimistic approach was demonstrated by participants to dealing with their cancer as they chose to focus on preserving normality and continuity for the sake of family: . . . since I’ve been told I have cancer, instead of focusing on the fact that I have cancer, I focused on the fact that I need to get better. . .You know, rather than sort of sit here and feel sorry for myself and think, ‘Jeez I’ve got cancer, what am I going to do?’ My focus has been to get better for the sake of my grandchildren, to be perfectly honest. (P43; IDI)
inconvenience others: ‘No it’s not good; it takes out of her [daughter’s] time.’ (P39; IDI). The main challenge that would disrupt participants living and coping on their own was getting too sick: ‘[I] would prefer to remain at home for independence but physically unable to do this’ (P07; BI). This is another acknowledgement of having a sense that their biographical coherence could be compromised. Many participants were concerned about not wanting to be a burden to their families, ‘I don’t want to go to a hospice - however I don’t want to burden my children.’ (P6; BI), worrying it would be too much responsibility. Hence, the drive to be independent – and for biographical continuity – affected end-of-life decision-making: ‘I don’t want to put my children through any trouble – I have already planned my funeral. . .I paid it off over many years.’ (P19; BI), with the common theme of avoiding burden: ‘. . .because I don’t want one of these lingering things, ‘cause I can see you know, how it can affect the family.’ (P51; IDI)
Biographical reconstruction: redefining normality
Support from family and friends Family or friends who provided support along the disease journey were often mentioned as participants attempt to continue with normality in their lives during their illness, demonstrating biographical continuity and their sense of self:
Maintaining independence Participants’ determination to maintain independence, despite failing health, often involved reconstructing or redefining normality and acceptance of help. Some help was acknowledged as being needed by this participant, and that this assistance gave her more confidence, highlighting the compromises people living alone at the end of life need to make to achieve their all-encompassing goal of maintaining independence and a sense of self:
. . . I must admit, throughout the whole of my illness I couldn’t have got by without the support of my family and friends. . . I didn’t want anyone to give me sympathy but it was just nice to know that people are there. . . like getting this hat today from a friend who lives so far away. You know, I think that’s really special. (P43; IDI)
Well actually it’s [having a care-aide] given me great confidence. Like before I was a wee bit up in the air. . . I will never, touch wood; go into a nursing home or anything. I want to stay in my own home. I’m, a private person, if you know what I mean and I don’t like people having to do things for me, if I can do them myself. (P40; IDI)
I’ve got a couple of friends of mine. . . and every so often they say come down. . .oh she’s had cancer herself and she’s a very nurturing sort of person. So occasionally. . .I go down there and I kind of get looked after. (P53; IDI)
Reluctance to accept help A reluctance to accept help is another reflection of a desire to hold fast to their independence, as participants thought it could burden or
© 2015 John Wiley & Sons Ltd
Nurturing relationships and social networks The perception of the availability of formal support gave the feeling that participants could live alone at home independently with an illness: ‘There’s so much support around these days to help people like me, you know’ (P43; IDI). Participant 28 who could no longer travel by bus regained some of her independence when her GP provided some taxi vouchers: ‘I think it was one of the doctors who
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got me that ticket for the taxis, because I couldn’t get on the bus. . .’ (P28; IDI). When participants faced difficulties maintaining usual social activities they sought alternative ways, some remaining connected with friends and organisations through less active types of social networks like the Internet and emails: I do my banking and everything. . . and I do a little bit of, getting in touch with all my friends. . . That’s why I love the computer. . . I like to be in ‘communicado’ with people. (P40; IDI) Maintaining the social network enabled participants to reframe normality in their desire for biographical reconstruction. One participant managed to resume volunteering despite the challenges of her illness: I worked as a volunteer for years at the disabled club and. . .I do it still now a little bit, but I have to go earlier. . .I’m too tired. . ..But I hope I get a bit stronger and you know, but at the moment, no. It keeps your mind off your problems and they reckon, ‘Oh you look pretty good.’ ‘Oh your hair’s grown’ – because before I went in with the wig. (P51; IDI)
Acceptance of support Remaining at home during their illness was a strong desire articulated by many of the participants in this study. However, remaining at home was dependent on having sufficient support: ‘I’d rather be at home. . . She’s the boss of the company. . .best daughter in the world as she would drop the most important board meeting and come running. . .if anything happened to me.’ (P40; IDI). To remain at home was participants’ first choice, however as their illness progressed, they realised that declining physical symptoms may prevent this: ‘At home if possible . . .but I would have no choice but to go to hospital if my condition deteriorated significantly.’ (P07; BI). Spirituality – connection to nature and pets A desire to remain close to the companionship of their pets, ‘I can’t live without my dog. I wouldn’t be happy without my dog.’ (P24; BI), influenced participants’ choice to remain at home alone: ‘I prefer to remain at home with family and animals’ (P02; BI). A spiritual connection to nature contributed to decision-making choosing place of death for one participant who gained pleasure from gardening. Worried about going to a nursing home she stated: ‘I would rather die than do this.’ (P03; BI). However, reassurance was gained after a
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respite visit to a hospice providing for these needs: ‘The hospice had a garden and pleasant surroundings - also a dog was brought weekly to visit patients.’ (P03; BI).
Biographical closure: facing the end Normalising death Biographical closure by normalising and facing the inevitable was evident for many of the participants as they approached their end of life, indicating biographical closure and acceptance of approaching death. One participant planned her funeral with popular music: . . .they had a song – the Queen song ‘I don’t want to live forever’, at the end, and I said ‘That’s my song’, but I’m going to have ‘I want to break free’ at the beginning. . ..and I don’t want them to cry, it’s not sad. They should be happy that I’m relieved. . .released you know. (P51; IDI) Another participant normalised death without fear and worry: Like the doctor said when he told me I’d got cancer. He said, ‘Are you worried?’ I said, ‘No. I’m not worried at all. . . if I go tomorrow, I’m going to the wife. . .I talk to her nearly every night when I get into bed; I’ve got a photo by the bed like that there. I’ve got three of them. . .and when I go, one’s being put on my chest in the coffin with me’. (P49; IDI)
Remaining at home until the end of life As their illness progressed, some participants reconsidered their initial choice for preferred place of death. One participant, whose first preference was to remain at home until the end of life, had been particularly averse to considering a hospice as a potential place of death, became more flexible: You can’t predict what the future brings. So, you know, saying ‘I’m not going to leave, I’m only going to leave here in a wooden box’, is silly because it. . .I’d rather be. . .flexible and realistic. Maybe, there will come a time when it is the better option, so I’ll leave it open ‘til then. (P53; IDI) An acceptance of death was evident with the majority of participants, ‘It doesn’t matter where, as long as I have a Bahai funeral.’ (P34; BI), some indicating no preference for place of death: ‘No preference - if you die you die. It doesn’t worry me’. (P56; BI). To maintain independence and preferred place of death, one participant was consider-
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Older people living alone at home with terminal cancer
ing employing a private nurse towards the end of life to remain at home: ‘I’d prefer to be at home if possible. I don’t want to be any trouble to my children’. (P38; BI).
Existential reflections Making plans to be reunited with loved ones provided participants with a connection to life even after death: . . ., you’ve got, the big one [brass urn] there with her ashes in, and my son said when I die they’re going to . . .put. . .mine on the top and then my daughter and him will have one. (P49; IDI) Religious faith and their beliefs provided some participants with the comfort of biographical closure and impending death: If I’m feeling a little bit down. . .I have me rosary. . .and me prayers and I just say prayers and. . .I get over it immediately. . .That’s, the faith, my faith. (P40; IDI)
D I S C U S S I ON Biographical disruption was a suitable framework for analysing the accounts of terminally ill older people who live alone, permitting identification of the biographical disruptions of the individual’s world and the redefining or reframing that is undertaken by the individual to maintain autonomy and independence while acknowledging and accepting their closeness to death. Other studies exploring similar issues living with cancer have found this framework appropriate (Hubbard et al. 2010; Fisher & O’Connor 2012; Hubbard & Forbat 2012). Participants adapted to their changing circumstances by redefining their idea of self and accommodating change to maintain their sense of independence while also accepting the assistance required to enable them to remain living at home independently for as long as they could. The majority of this group reported that they were living alone by choice and not by circumstance reflecting their strong need for independence and autonomy (Aoun et al. 2008; Hanratty et al. 2013). Reconstructing normality included reviewing their end-of-life care needs and moving from wanting to die at home to feeling that dying in a hospice may be the better option. The reasons for this being not wanting to be a burden on family after death, not wanting to die alone and a desire for a peaceful environment where they knew they would be cared for (Aoun & Skett 2013; Gomes et al. 2013). © 2015 John Wiley & Sons Ltd
Those participants interviewed in hospital or hospice, were sometimes closer to end of life or having symptom management. Some of these participants demonstrated signs of ‘biographical disruption’ in being distanced from home (their preferred place of care) and a loss of independence. As a result they ‘reconstructed’ their situation by modifying their initial wishes to remain independent at home to adjusting to their physical decline and acceptance of help. ‘Continuity’ with stoicism was also a common theme for these participants reflecting that coping was natural and showing concern for not being a burden. However, the disruption, continuity and reconstruction with flexibility towards their decline were also demonstrated by those interviewed in their homes. Many challenges associated with living alone at the end of life have been reported. These challenges included maintaining social networks and activities (Aoun et al. 2008; Rolls et al. 2011; Devik et al. 2013) and the continuance of confirmatory positive relationships and interactions (Herth 1990; Benzein et al. 2001). This study highlighted the disruption and associated loneliness at the end of life related to the loss of social interaction caused by decreasing mobility and deteriorating physical health and the loss of contact by friends due to the participant’s illness. This study highlighted issues which are an important component of assisting clients who live alone to remain at home at the end of life. Acknowledging when a person is ready to accept assistance was found to be an important factor in the acceptance of the support (Aoun et al. 2014a). Understanding the factors associated with the individual’s need to maintain their own identity will enable nurses working with this population to tailor support plans that meet the individuals needs while maintaining or restoring the person’s sense of self.
Strengths and limitations Our exploration of the in-depth sensitive issues in this study came after a fairly long contact period between interviewer and interviewee and discussions on support needs for activities of daily living, symptom distress and quality of life pre- and post-intervention. This prepared the ground to develop a comfortable rapport between interviewee and interviewer when it came to disclosing more sensitive matters such as the ones on end-of-life preferences. This study in general had all the typical challenges of undertaking research in palliative care (Higginson & Booth 2011; Aoun et al. 2013; Aoun & Nekolaichuk 2014): people died before being able to participate in the 7
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study, were lost to follow-up when admitted to in-patient facilities, become too ill to participate or were discharged. However, we believe that saturation was reached as the sample was fairly homogeneous in terms of participants’ experiences and challenges of being without a carer as they approached the end of life. There was a considerable overlap as the four themes were not mutually exclusive. Although the findings seem particularly pertinent to Australia, they nevertheless are likely to have international application where the support needs of terminally ill people living alone remain an under-examined topic (Rolls et al. 2011; Aoun et al. 2014b).
C ON CL US I ON By incorporating nursing knowledge of the known stressors that impact on palliative care clients with knowledge of the factors that affect clients who live alone, nurses will be able to promote a more holistic model of care for this population. Individualised plans of care that will not compromise an increasingly delicate identity and the effort to maintain and redefine ‘normality’ after disruption through a terminal illness must be considered. Perhaps, one of the greatest challenges facing palliative care today is how to attend to those patients whose R E F E R E N CE S Aoun S.M. & Nekolaichuk C. (2014) Improving the evidence base in palliative care to inform practice and policy: thinking outside the box. Journal of Pain and Symptom Management 48, 1222–1235. doi:10.1016/ j.jpainsymman.2014.01.007 Aoun S.M. & Skett K. (2013) A longitudinal study of end-of-life preferences of terminally-ill people who live alone. Health and Social Care in the Community 21, 530–535. Aoun S., Kristjanson L.J., Currow D., Skett K., Oldham L. & Yates P. (2007) Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs. Palliative Medicine 21, 29–34. Aoun S., Kristjanson L.J., Oldham L. & Currow D. (2008) A qualitative investigation of the palliative care needs of terminally ill people who live alone. Collegian 15, 3–9. Aoun S., O’Connor M., Skett K., Deas K. & Smith J. (2012) Do models of care designed for terminally ill ‘home alone’ people improve their end-of-life experience? A patient perspective.
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anguish resides beyond the scope of conventional symptom distress. As a person moves closer to death, feelings of hopelessness, being a burden to others and a loss of dignity are significant psychological stressors that often lead to existential suffering and depression (Chochinov 2006). Dignity Therapy, a brief psychotherapeutic model of care, has been shown to heighten a cancer patient’s sense of dignity, increase their sense of purpose, sense of meaning and bolster their sense of personhood. It is designed to decrease suffering, enhance quality of life, create spiritual peace and strengthen relationships at the end of life (Chochinov et al. 2005). Clearly, the consideration of such interventions that directly address the issue of end-of-life suffering is necessary.
ACKNOWLEDGEMENTS This research was financially supported by an Australian Research Council Linkage Grant (LP0883460), Silver Chain Hospice Care Service and Mandurah Rotary Club. We gratefully acknowledge the participants for contributing to this research project. Many thanks to J. Smith and M. O’Connor for their contribution to the project.
Health and Social Care in the Community 20, 599–606. Aoun S.M., O’Connor M., Breen L.J., Deas K. & Skett K. (2013) Testing models of care for terminally ill people who live alone at home: is a randomised controlled trial the best approach? Health and Social Care in the Community 21, 181–190. Aoun S., Breen L. & Skett K. (2014a) Supporting palliative care clients who live alone: Nurses’ perspectives on improving quality of care. Collegian, http://dx.doi.org/10.1016/j.colegn.2014.09. 007 Aoun S.M., Breen L.J. & Howting D. (2014b) The support needs of terminally ill people living alone at home: a narrative review. Health Psychology and Behavioral Medicine 2, 951–969. Benzein E., Norberg A. & Saveman B.-I. (2001) The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine 15, 117–126. Bury M. (1982) Chronic illness as biographical disruption. Sociology of Health and Illness 4, 167–182. Bury M. (1991) The sociology of chronic illness: a review of research and
prospects. Sociology of Health and Illness 13, 451–468. B€ ussing A., Ostermann T. & Matthiessen P.F. (2007) Adaptive coping and spirituality as a resource in cancer patients. Breast Care 2, 195–202. Charmaz K. (1983) Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness 5, 168–195. Chibnall J.T., Videen S.D., Duckro P.N. & Miller D.K. (2002) Psychosocial— spiritual correlates of death distress in patients with life-threatening medical conditions. Palliative Medicine 16, 331– 338. Chochinov H.M. (2006) Dying, dignity, and new horizons in palliative end-oflife care. CA: A Cancer Journal for Clinicians 56, 84–103. Chochinov H.M., Hack T., Hassard T., Kristjanson L., McClement S. & Harlos M. (2005) Dignity therapy: a novel psychotherapeutic intervention for patients nearing death. Journal of Clinical Oncology 23, 5520. Devik S.A., Enmarker I., Wiik G.B. & Hellzen O. (2013) Meanings of being old, living on one’s own and suffering from incurable cancer in rural Norway.
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European Journal of Oncology Nursing 17, 781–787. Edwards A., Pang N., Shiu V. & Chan C. (2010) The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a metastudy of qualitative research. Palliative Medicine 24, 753–770. doi:10.1177/0269 216310375860. Esbensen B.A., ØSterlind K., Roer O. & Hallberg I.R. (2004) Quality of life of elderly persons with newly diagnosed cancer. European Journal of Cancer Care 13, 443–453. Fisher C. & O’Connor M. (2012) “Motherhood” in the context of living with breast cancer. Cancer Nursing 35, 157–163. doi:10.1097/NCC.0b013e31821 cadde. Gomes B., Calanzani N., Gysels M., Hall S. & Higginson I. (2013) Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliative Care 12, 7. Grundy E., Mayer D., Young H. & Sloggett A. (2004) Living arrangements and place of death of older people with cancer in England and Wales: a record linkage study. British Journal of Cancer 91, 907–912.
© 2015 John Wiley & Sons Ltd
Hanratty B., Addington-Hall J., Arthur A., Cooper L., Grande G., Payne S. & Seymour J. (2013) What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care. BMC Family Practice 14, 22. Herth K. (1990) Fostering hope in terminally-ill people. Journal of Advanced Nursing 15, 1250–1259. Higginson I.J. & Booth S. (2011) The randomized fast-track trial in palliative care: role, utility and ethics in the evaluation of interventions in palliative care? Palliative Medicine 25, 741–747. Hsieh H.-F. & Shannon S.E. (2005) Three approaches to qualitative content analysis. Qualitative Health Research 15, 1277–1288. Hubbard G. & Forbat L. (2012) Cancer as biographical disruption: constructions of living with cancer. Supportive Care in Cancer 20, 2033–2040. Hubbard G., Kidd L. & Kearney N. (2010) Disrupted lives and threats to identity: the experiences of people with colorectal cancer within the first year following diagnosis. Health 14, 131–146. Mauthner N.S. & Doucet A. (2003) Reflexive accounts and accounts of
reflexivity in qualitative data analysis. Sociology 37, 413–431. Mays N. & Pope C. (2000) Assessing quality in qualitative research. British Medical Journal 320, 50–52. Miccinesi G., Bianchi E., Brunelli C. & Borreani C. (2012) End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition. European Journal of Cancer Care 21, 623–633. Reeve J., Lloyd-Williams M., Payne S. & Dowrick C. (2010) Revisiting biographical disruption: exploring individual embodied illness experience in people with terminal cancer. Health 14, 178–195. Rolls L., Seymour J.E., Froggatt K.A. & Hanratty B. (2011) Older people living alone at the end of life in the UK: research and policy challenges. Palliative Medicine 25, 650–657. Sand L. & Strang P. (2006) Existential loneliness in a palliative home care setting. Journal of Palliative Medicine 9, 1376–1387. Victor C., Scambler S., Bond J. & Bowling A. (2000) Being alone in later life: loneliness, social isolation and living alone. Reviews in Clinical Gerontology 10, 407–417.
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Older people living alone at home with terminal cancer S.M. AOUN, BSC (HONS), MPH, PHD, PROFESSOR OF PALLIATIVE CARE, School of Nursing and Midwifery, Curtin University, Perth, Western Australia, K. DEAS, PGRAD NURS, RN, RESEARCH OFFICER, School of Nursing and Midwifery, Curtin University, Perth, Western Australia, & K. SKETT, BNSG, POST GRAD DIP NSG, MNSG, QUALITY COORDINATOR, Silver Chain Group, Perth, Western Australia, Australia AOUN S.M., DEAS K. & SKETT K. (2015) European Journal of Cancer Care Older people living alone at home with terminal cancer This study describes the lived experiences of older people coping with terminal cancer and living alone, focusing on how they face challenges of the biographical life changes from their disease progression. Faceto-face semi-structured interviews were conducted in two phases with palliative care clients of a community-based service in Western Australia (2009–2011): Brief interviews with 43 cancer patients who live alone and then in-depth interviews with 8 of them. Using biographical disruption as the analytical framework for interpreting the qualitative data, four main themes emerged: Biographical disruption: adjusting to change; Biographical continuity: preserving normality; Biographical reconstruction: redefining normality; and Biographical closure: facing the end. Biographical disruption was a suitable framework for analysis, permitting identification of the biographical disruptions of the individual’s world and the reframing that is undertaken by the individual to maintain autonomy and independence while acknowledging and accepting their closeness to death. Understanding the factors associated with the individual’s need to maintain their own identity will enable nurses working with this population to tailor support plans that meet the individuals’ needs while maintaining or restoring the person’s sense of self. Interventions that directly address end-of-life suffering and bolster sense of dignity and personhood need to be considered.
Keywords: living alone, cancer, older people, biographical disruption, palliative care.
I N TR O DU C TI O N A significant proportion of older people in the developed countries will spend the last year of their life in poor health and with a considerable burden of palliative care needs due to social isolation, co-morbid conditions and frailty (Rolls et al. 2011; Hanratty et al. 2013). This has raised and continues to raise challenges for the provision and delivery of health and community services at the
*Correspondence address: Samar Aoun, School of Nursing and Midwifery, Curtin University, GPO Box U1987, Perth, WA 6845, Australia (e-mail: [email protected]).
Accepted 23 February 2015 DOI: 10.1111/ecc.12314 European Journal of Cancer Care, 2015
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end of life. The growing population of people living alone and the reduced availability of informal caregivers together mediate the capacity to remain at home at end of life (Aoun et al. 2014b). Social support, respite care, assistance to maintain independence and safeguarding from isolation were reported as needs of palliative care clients living alone which could become more of a challenge as people reach the end of their lives, with the associated disability this transition often brings (Aoun et al. 2008). The profile of terminally ill people living alone is highlighted in a study that analysed 721 records from three large Australian home-based palliative care services (Aoun et al. 2007). Home alone clients made up between 7% and 12% of the total caseload of these services at the time; 47% were male; mean age at death was 75 years and 97%
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had cancer. The clients had been living alone at home for a median of 13 years. Cancer patients who live alone reported more distress, poorer adjustment to diagnosis and had a poorer quality of life than those living with others (Grundy et al. 2004). Higher death distress, as well as psychological distress, was significantly associated with living alone (Chibnall et al. 2002). In a study on quality of life of older people with newly diagnosed cancer, Esbensen et al. (2004) reported that the oldest group (80 years and over) were more often living alone, had a limited social network and needed more support for home help services than the younger participants. Dependency, getting help from their adult children and needing help in daily living were related to low quality of life (Esbensen et al. 2004). The older person living alone with terminal cancer and associated life restrictions experiences isolation and loneliness (Victor et al. 2000). Often psychosocial and spiritual needs of these patients may be unmet by health professionals (B€ ussing et al. 2007; Devik et al. 2013) resulting in a potential loss of identity and ‘sense of self’ (Charmaz 1983). Emphasising the importance of finding meaning at end of life was reported in a study on end-of-life preferences in advanced cancer patients (Miccinesi et al. 2012). Widowhood and retirement can contribute to the older person’s vulnerability, particularly when living with terminal cancer (Devik et al. 2013), desiring supportive and enduring relationships with family and friends to meet their spiritual needs, maintain a ‘sense of self’ (Victor et al. 2000) and lessen existential loneliness (Sand & Strang 2006). With increasing disability from advanced cancer as well as limitations associated with ageing, living alone could further restrict the person’s sense of normality and ability to maintain social networks (Devik et al. 2013). Spiritual well-being may be compromised through an individual’s declining independence towards the end of their lives and subsequent reduced purpose and meaning in everyday life (Edwards et al. 2010). The interview data for this article were drawn from a larger study, the Home Alone Models of Care Project, for Silver Chain Hospice Care cancer clients who lived alone. The study comprised a pilot randomised controlled trial of two models of care (either a personal alarm or extra care-aide time) for people living alone at home while receiving palliative care in comparison to standard care (Aoun et al. 2013). Interviews with clients on the two trialled models of care showed that personal alarms provided a sense of security and reduced feelings of isolation while additional care-aide time assisted with activities of daily living, enhanced quality of life, maintained dignity and decreased feelings of loneliness (Aoun et al. 2012). 2
A IM This study describes the lived experiences of older people coping with terminal cancer and living alone, focusing on how they face challenges of the biographical life changes from their disease progression.
METHODS Ethical approval was granted by the Human Research Ethics Committees of Curtin University and Silver Chain to undertake the study. A home alone client was defined as a client who lives alone and does not identify as receiving any care, emotional or physical, from an unpaid carer.
Conceptual framework Chronic or disabling illness is considered by Bury (1982) to be a ‘biographical disruption’ during which the individuals sense of self-worth and interpersonal relationships may be challenged (Bury 1991). A terminal cancer diagnosis for people who live alone without a carer may be seen as highly disruptive to their way of life and a threat to their identity as people living independently (Reeve et al. 2010). Therefore, using biographical disruption in association with rebuilding the individuals’ identity or biographical reconstruction provides an appropriate framework in which to explore the experiences of home-based palliative care patients who live alone with terminal cancer.
Setting and participants The study was conducted in 2009–2011 in collaboration with Silver Chain Hospice Care Service, a communitybased organisation in Western Australia, providing palliative care to patients residing in the metropolitan area, Perth. The service nurses consented and referred clients to the study. Forty-three of the recruited 58 were able to complete the study. All clients whether they were randomised to the two models of care or standard care completed a questionnaire on outcome measures administered by the researcher at baseline and 3-month follow-up at the clients’ home. The questionnaire included closed and openended questions (more details on methodology and results in Aoun et al. 2013).
Design and data collection This study adopted a qualitative research design and was conducted in two phases. In phase 1, all participants who completed the intervention (n = 43) were © 2015 John Wiley & Sons Ltd
Older people living alone at home with terminal cancer
. . .that’s the worst time. Especially when you see something on the tele and you turn around and say [wife’s name] ‘Did you see that?’. . .Yeah. . .oooh. . .Oh I just lie there thinking about her and sometimes it brings tears to my eyes you know. . . (P49; IDI)
Biographical continuity: preserving normality Stoicism and an optimistic approach Coping was considered as being part of their life, as something that just happens, something that is natural: ‘Well, you just do it [cope] naturally, love. It didn’t trouble me.’ (P28; IDI) Certain stoicism was evident and an optimistic approach was demonstrated by participants to dealing with their cancer as they chose to focus on preserving normality and continuity for the sake of family: . . . since I’ve been told I have cancer, instead of focusing on the fact that I have cancer, I focused on the fact that I need to get better. . .You know, rather than sort of sit here and feel sorry for myself and think, ‘Jeez I’ve got cancer, what am I going to do?’ My focus has been to get better for the sake of my grandchildren, to be perfectly honest. (P43; IDI)
inconvenience others: ‘No it’s not good; it takes out of her [daughter’s] time.’ (P39; IDI). The main challenge that would disrupt participants living and coping on their own was getting too sick: ‘[I] would prefer to remain at home for independence but physically unable to do this’ (P07; BI). This is another acknowledgement of having a sense that their biographical coherence could be compromised. Many participants were concerned about not wanting to be a burden to their families, ‘I don’t want to go to a hospice - however I don’t want to burden my children.’ (P6; BI), worrying it would be too much responsibility. Hence, the drive to be independent – and for biographical continuity – affected end-of-life decision-making: ‘I don’t want to put my children through any trouble – I have already planned my funeral. . .I paid it off over many years.’ (P19; BI), with the common theme of avoiding burden: ‘. . .because I don’t want one of these lingering things, ‘cause I can see you know, how it can affect the family.’ (P51; IDI)
Biographical reconstruction: redefining normality
Support from family and friends Family or friends who provided support along the disease journey were often mentioned as participants attempt to continue with normality in their lives during their illness, demonstrating biographical continuity and their sense of self:
Maintaining independence Participants’ determination to maintain independence, despite failing health, often involved reconstructing or redefining normality and acceptance of help. Some help was acknowledged as being needed by this participant, and that this assistance gave her more confidence, highlighting the compromises people living alone at the end of life need to make to achieve their all-encompassing goal of maintaining independence and a sense of self:
. . . I must admit, throughout the whole of my illness I couldn’t have got by without the support of my family and friends. . . I didn’t want anyone to give me sympathy but it was just nice to know that people are there. . . like getting this hat today from a friend who lives so far away. You know, I think that’s really special. (P43; IDI)
Well actually it’s [having a care-aide] given me great confidence. Like before I was a wee bit up in the air. . . I will never, touch wood; go into a nursing home or anything. I want to stay in my own home. I’m, a private person, if you know what I mean and I don’t like people having to do things for me, if I can do them myself. (P40; IDI)
I’ve got a couple of friends of mine. . . and every so often they say come down. . .oh she’s had cancer herself and she’s a very nurturing sort of person. So occasionally. . .I go down there and I kind of get looked after. (P53; IDI)
Reluctance to accept help A reluctance to accept help is another reflection of a desire to hold fast to their independence, as participants thought it could burden or
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Nurturing relationships and social networks The perception of the availability of formal support gave the feeling that participants could live alone at home independently with an illness: ‘There’s so much support around these days to help people like me, you know’ (P43; IDI). Participant 28 who could no longer travel by bus regained some of her independence when her GP provided some taxi vouchers: ‘I think it was one of the doctors who
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Table 2. Summary of themes and corresponding sub-themes Theme
Sub-themes
1: Biographical disruption: adjusting to change
Adjusting to changing social relationships and networks Loss of independence and increased loneliness Stoicism and an optimistic approach Support from family and friends Reluctance to accept help Maintaining independence Nurturing relationships and social networks Acceptance of support Spirituality – connection to nature and pets Normalising death Remaining at home until the end of life Existential reflections
2: Biographical continuity: preserving normality
3: Biographical reconstruction: redefining normality
4: Biographical closure: facing the end
Themes Four main themes emerged using the analytical framework of biographical disruption (Table 2): (1) Biographical disruption: adjusting to change; (2) Biographical continuity: preserving normality; (3) Biographical reconstruction: redefining normality; and (4) Biographical closure: facing the end.
Biographical disruption: adjusting to change Adjusting to changing social relationships and networks Changes in participants’ social relationships since their illness signalled the start of biographical disruption. This participant acknowledged that changes in his body and his ‘sickness’ presented a challenge to some of his friends and positioned him as an outsider and different from them. He reflected about how some of his friends were fearful of his illness and did not feel comfortable enough to visit him. . . .‘other friends I see occasionally, yes, but not a lot, no. That’s what it comes to. . .Yeah, it’s very true, people sort of drop off..’ (P53; IDI) Social activities were a significant aspect of people’s lives prior to their illness and an end to such activities also beckoned biographical disruption: ‘I used to enjoy gardening – but can’t physically do this now’ (P03; BI); ‘[I have] a diminished QOL by not being able to drive and get out’ (P32; BI). One participant described how active he had been playing bowls and how he had to give it all up due to the deterioration in his own health. This participant described how he modified his activities: No I don’t go to bowls now, no. . . you see, I was Captain at [Name] for six years. I said, ‘No it’s too much. . .’ Oh yes. I just give it up altogether. And, I was asked the other day please come back and take over. I said, ‘No thank you.’ . . .I don’t want to do anymore organising. . . I get too concerned you see. (P49; IDI)
4
Another participant found it very difficult to give up what was an integral part of her daily life and her identity, as she described how active she had been in charity work and providing support for others before she was diagnosed with cancer: I was in everything; I was out every day of the week. . .very active. I used to work for [charity] church. . . I worked in the shop, and. . . I used to go out with food parcels. . .I was a minister of the Eucharist and all this that and the other. . . (P40; IDI) While missing the social interaction of her charity work, an acceptance of a modified social network helped individuals to adjust to biographical disruption: . . .I haven’t had the interaction of actually going and doing my volunteer work, but. . . people keep in touch and they phone and . . .bring cars round and we go out for a little drive somewhere. (P43; IDI)
Loss of independence and increased loneliness Living alone with cancer and other disabilities has resulted for some participants in a fracture to their sense of self and hindered feelings of freedom and autonomy: ‘The driveway is too steep. [My] legs are getting weaker, I may be needing to mainly be in a wheelchair’ (P56; BI); ‘That’s not like me, I am usually happy with my life’ (P45; BI). A participant dealing with macular degeneration as well as cancer spoke about how she used to enjoy travelling regularly on the local community organisation bus trips to maintain independence; however, when her mobility and vision declined she was not permitted to travel on the bus: ‘They won’t allow me on the bus anymore’ (P28; IDI). Social losses compounded feelings of social isolation as evidenced by one participant’s poignant comment about his loneliness since his wife’s death:
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Older people living alone at home with terminal cancer
. . .that’s the worst time. Especially when you see something on the tele and you turn around and say [wife’s name] ‘Did you see that?’. . .Yeah. . .oooh. . .Oh I just lie there thinking about her and sometimes it brings tears to my eyes you know. . . (P49; IDI)
Biographical continuity: preserving normality Stoicism and an optimistic approach Coping was considered as being part of their life, as something that just happens, something that is natural: ‘Well, you just do it [cope] naturally, love. It didn’t trouble me.’ (P28; IDI) Certain stoicism was evident and an optimistic approach was demonstrated by participants to dealing with their cancer as they chose to focus on preserving normality and continuity for the sake of family: . . . since I’ve been told I have cancer, instead of focusing on the fact that I have cancer, I focused on the fact that I need to get better. . .You know, rather than sort of sit here and feel sorry for myself and think, ‘Jeez I’ve got cancer, what am I going to do?’ My focus has been to get better for the sake of my grandchildren, to be perfectly honest. (P43; IDI)
inconvenience others: ‘No it’s not good; it takes out of her [daughter’s] time.’ (P39; IDI). The main challenge that would disrupt participants living and coping on their own was getting too sick: ‘[I] would prefer to remain at home for independence but physically unable to do this’ (P07; BI). This is another acknowledgement of having a sense that their biographical coherence could be compromised. Many participants were concerned about not wanting to be a burden to their families, ‘I don’t want to go to a hospice - however I don’t want to burden my children.’ (P6; BI), worrying it would be too much responsibility. Hence, the drive to be independent – and for biographical continuity – affected end-of-life decision-making: ‘I don’t want to put my children through any trouble – I have already planned my funeral. . .I paid it off over many years.’ (P19; BI), with the common theme of avoiding burden: ‘. . .because I don’t want one of these lingering things, ‘cause I can see you know, how it can affect the family.’ (P51; IDI)
Biographical reconstruction: redefining normality
Support from family and friends Family or friends who provided support along the disease journey were often mentioned as participants attempt to continue with normality in their lives during their illness, demonstrating biographical continuity and their sense of self:
Maintaining independence Participants’ determination to maintain independence, despite failing health, often involved reconstructing or redefining normality and acceptance of help. Some help was acknowledged as being needed by this participant, and that this assistance gave her more confidence, highlighting the compromises people living alone at the end of life need to make to achieve their all-encompassing goal of maintaining independence and a sense of self:
. . . I must admit, throughout the whole of my illness I couldn’t have got by without the support of my family and friends. . . I didn’t want anyone to give me sympathy but it was just nice to know that people are there. . . like getting this hat today from a friend who lives so far away. You know, I think that’s really special. (P43; IDI)
Well actually it’s [having a care-aide] given me great confidence. Like before I was a wee bit up in the air. . . I will never, touch wood; go into a nursing home or anything. I want to stay in my own home. I’m, a private person, if you know what I mean and I don’t like people having to do things for me, if I can do them myself. (P40; IDI)
I’ve got a couple of friends of mine. . . and every so often they say come down. . .oh she’s had cancer herself and she’s a very nurturing sort of person. So occasionally. . .I go down there and I kind of get looked after. (P53; IDI)
Reluctance to accept help A reluctance to accept help is another reflection of a desire to hold fast to their independence, as participants thought it could burden or
© 2015 John Wiley & Sons Ltd
Nurturing relationships and social networks The perception of the availability of formal support gave the feeling that participants could live alone at home independently with an illness: ‘There’s so much support around these days to help people like me, you know’ (P43; IDI). Participant 28 who could no longer travel by bus regained some of her independence when her GP provided some taxi vouchers: ‘I think it was one of the doctors who
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got me that ticket for the taxis, because I couldn’t get on the bus. . .’ (P28; IDI). When participants faced difficulties maintaining usual social activities they sought alternative ways, some remaining connected with friends and organisations through less active types of social networks like the Internet and emails: I do my banking and everything. . . and I do a little bit of, getting in touch with all my friends. . . That’s why I love the computer. . . I like to be in ‘communicado’ with people. (P40; IDI) Maintaining the social network enabled participants to reframe normality in their desire for biographical reconstruction. One participant managed to resume volunteering despite the challenges of her illness: I worked as a volunteer for years at the disabled club and. . .I do it still now a little bit, but I have to go earlier. . .I’m too tired. . ..But I hope I get a bit stronger and you know, but at the moment, no. It keeps your mind off your problems and they reckon, ‘Oh you look pretty good.’ ‘Oh your hair’s grown’ – because before I went in with the wig. (P51; IDI)
Acceptance of support Remaining at home during their illness was a strong desire articulated by many of the participants in this study. However, remaining at home was dependent on having sufficient support: ‘I’d rather be at home. . . She’s the boss of the company. . .best daughter in the world as she would drop the most important board meeting and come running. . .if anything happened to me.’ (P40; IDI). To remain at home was participants’ first choice, however as their illness progressed, they realised that declining physical symptoms may prevent this: ‘At home if possible . . .but I would have no choice but to go to hospital if my condition deteriorated significantly.’ (P07; BI). Spirituality – connection to nature and pets A desire to remain close to the companionship of their pets, ‘I can’t live without my dog. I wouldn’t be happy without my dog.’ (P24; BI), influenced participants’ choice to remain at home alone: ‘I prefer to remain at home with family and animals’ (P02; BI). A spiritual connection to nature contributed to decision-making choosing place of death for one participant who gained pleasure from gardening. Worried about going to a nursing home she stated: ‘I would rather die than do this.’ (P03; BI). However, reassurance was gained after a
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respite visit to a hospice providing for these needs: ‘The hospice had a garden and pleasant surroundings - also a dog was brought weekly to visit patients.’ (P03; BI).
Biographical closure: facing the end Normalising death Biographical closure by normalising and facing the inevitable was evident for many of the participants as they approached their end of life, indicating biographical closure and acceptance of approaching death. One participant planned her funeral with popular music: . . .they had a song – the Queen song ‘I don’t want to live forever’, at the end, and I said ‘That’s my song’, but I’m going to have ‘I want to break free’ at the beginning. . ..and I don’t want them to cry, it’s not sad. They should be happy that I’m relieved. . .released you know. (P51; IDI) Another participant normalised death without fear and worry: Like the doctor said when he told me I’d got cancer. He said, ‘Are you worried?’ I said, ‘No. I’m not worried at all. . . if I go tomorrow, I’m going to the wife. . .I talk to her nearly every night when I get into bed; I’ve got a photo by the bed like that there. I’ve got three of them. . .and when I go, one’s being put on my chest in the coffin with me’. (P49; IDI)
Remaining at home until the end of life As their illness progressed, some participants reconsidered their initial choice for preferred place of death. One participant, whose first preference was to remain at home until the end of life, had been particularly averse to considering a hospice as a potential place of death, became more flexible: You can’t predict what the future brings. So, you know, saying ‘I’m not going to leave, I’m only going to leave here in a wooden box’, is silly because it. . .I’d rather be. . .flexible and realistic. Maybe, there will come a time when it is the better option, so I’ll leave it open ‘til then. (P53; IDI) An acceptance of death was evident with the majority of participants, ‘It doesn’t matter where, as long as I have a Bahai funeral.’ (P34; BI), some indicating no preference for place of death: ‘No preference - if you die you die. It doesn’t worry me’. (P56; BI). To maintain independence and preferred place of death, one participant was consider-
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Older people living alone at home with terminal cancer
ing employing a private nurse towards the end of life to remain at home: ‘I’d prefer to be at home if possible. I don’t want to be any trouble to my children’. (P38; BI).
Existential reflections Making plans to be reunited with loved ones provided participants with a connection to life even after death: . . ., you’ve got, the big one [brass urn] there with her ashes in, and my son said when I die they’re going to . . .put. . .mine on the top and then my daughter and him will have one. (P49; IDI) Religious faith and their beliefs provided some participants with the comfort of biographical closure and impending death: If I’m feeling a little bit down. . .I have me rosary. . .and me prayers and I just say prayers and. . .I get over it immediately. . .That’s, the faith, my faith. (P40; IDI)
D I S C U S S I ON Biographical disruption was a suitable framework for analysing the accounts of terminally ill older people who live alone, permitting identification of the biographical disruptions of the individual’s world and the redefining or reframing that is undertaken by the individual to maintain autonomy and independence while acknowledging and accepting their closeness to death. Other studies exploring similar issues living with cancer have found this framework appropriate (Hubbard et al. 2010; Fisher & O’Connor 2012; Hubbard & Forbat 2012). Participants adapted to their changing circumstances by redefining their idea of self and accommodating change to maintain their sense of independence while also accepting the assistance required to enable them to remain living at home independently for as long as they could. The majority of this group reported that they were living alone by choice and not by circumstance reflecting their strong need for independence and autonomy (Aoun et al. 2008; Hanratty et al. 2013). Reconstructing normality included reviewing their end-of-life care needs and moving from wanting to die at home to feeling that dying in a hospice may be the better option. The reasons for this being not wanting to be a burden on family after death, not wanting to die alone and a desire for a peaceful environment where they knew they would be cared for (Aoun & Skett 2013; Gomes et al. 2013). © 2015 John Wiley & Sons Ltd
Those participants interviewed in hospital or hospice, were sometimes closer to end of life or having symptom management. Some of these participants demonstrated signs of ‘biographical disruption’ in being distanced from home (their preferred place of care) and a loss of independence. As a result they ‘reconstructed’ their situation by modifying their initial wishes to remain independent at home to adjusting to their physical decline and acceptance of help. ‘Continuity’ with stoicism was also a common theme for these participants reflecting that coping was natural and showing concern for not being a burden. However, the disruption, continuity and reconstruction with flexibility towards their decline were also demonstrated by those interviewed in their homes. Many challenges associated with living alone at the end of life have been reported. These challenges included maintaining social networks and activities (Aoun et al. 2008; Rolls et al. 2011; Devik et al. 2013) and the continuance of confirmatory positive relationships and interactions (Herth 1990; Benzein et al. 2001). This study highlighted the disruption and associated loneliness at the end of life related to the loss of social interaction caused by decreasing mobility and deteriorating physical health and the loss of contact by friends due to the participant’s illness. This study highlighted issues which are an important component of assisting clients who live alone to remain at home at the end of life. Acknowledging when a person is ready to accept assistance was found to be an important factor in the acceptance of the support (Aoun et al. 2014a). Understanding the factors associated with the individual’s need to maintain their own identity will enable nurses working with this population to tailor support plans that meet the individuals needs while maintaining or restoring the person’s sense of self.
Strengths and limitations Our exploration of the in-depth sensitive issues in this study came after a fairly long contact period between interviewer and interviewee and discussions on support needs for activities of daily living, symptom distress and quality of life pre- and post-intervention. This prepared the ground to develop a comfortable rapport between interviewee and interviewer when it came to disclosing more sensitive matters such as the ones on end-of-life preferences. This study in general had all the typical challenges of undertaking research in palliative care (Higginson & Booth 2011; Aoun et al. 2013; Aoun & Nekolaichuk 2014): people died before being able to participate in the 7
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study, were lost to follow-up when admitted to in-patient facilities, become too ill to participate or were discharged. However, we believe that saturation was reached as the sample was fairly homogeneous in terms of participants’ experiences and challenges of being without a carer as they approached the end of life. There was a considerable overlap as the four themes were not mutually exclusive. Although the findings seem particularly pertinent to Australia, they nevertheless are likely to have international application where the support needs of terminally ill people living alone remain an under-examined topic (Rolls et al. 2011; Aoun et al. 2014b).
C ON CL US I ON By incorporating nursing knowledge of the known stressors that impact on palliative care clients with knowledge of the factors that affect clients who live alone, nurses will be able to promote a more holistic model of care for this population. Individualised plans of care that will not compromise an increasingly delicate identity and the effort to maintain and redefine ‘normality’ after disruption through a terminal illness must be considered. Perhaps, one of the greatest challenges facing palliative care today is how to attend to those patients whose R E F E R E N CE S Aoun S.M. & Nekolaichuk C. (2014) Improving the evidence base in palliative care to inform practice and policy: thinking outside the box. Journal of Pain and Symptom Management 48, 1222–1235. doi:10.1016/ j.jpainsymman.2014.01.007 Aoun S.M. & Skett K. (2013) A longitudinal study of end-of-life preferences of terminally-ill people who live alone. Health and Social Care in the Community 21, 530–535. Aoun S., Kristjanson L.J., Currow D., Skett K., Oldham L. & Yates P. (2007) Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs. Palliative Medicine 21, 29–34. Aoun S., Kristjanson L.J., Oldham L. & Currow D. (2008) A qualitative investigation of the palliative care needs of terminally ill people who live alone. Collegian 15, 3–9. Aoun S., O’Connor M., Skett K., Deas K. & Smith J. (2012) Do models of care designed for terminally ill ‘home alone’ people improve their end-of-life experience? A patient perspective.
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anguish resides beyond the scope of conventional symptom distress. As a person moves closer to death, feelings of hopelessness, being a burden to others and a loss of dignity are significant psychological stressors that often lead to existential suffering and depression (Chochinov 2006). Dignity Therapy, a brief psychotherapeutic model of care, has been shown to heighten a cancer patient’s sense of dignity, increase their sense of purpose, sense of meaning and bolster their sense of personhood. It is designed to decrease suffering, enhance quality of life, create spiritual peace and strengthen relationships at the end of life (Chochinov et al. 2005). Clearly, the consideration of such interventions that directly address the issue of end-of-life suffering is necessary.
ACKNOWLEDGEMENTS This research was financially supported by an Australian Research Council Linkage Grant (LP0883460), Silver Chain Hospice Care Service and Mandurah Rotary Club. We gratefully acknowledge the participants for contributing to this research project. Many thanks to J. Smith and M. O’Connor for their contribution to the project.
Health and Social Care in the Community 20, 599–606. Aoun S.M., O’Connor M., Breen L.J., Deas K. & Skett K. (2013) Testing models of care for terminally ill people who live alone at home: is a randomised controlled trial the best approach? Health and Social Care in the Community 21, 181–190. Aoun S., Breen L. & Skett K. (2014a) Supporting palliative care clients who live alone: Nurses’ perspectives on improving quality of care. Collegian, http://dx.doi.org/10.1016/j.colegn.2014.09. 007 Aoun S.M., Breen L.J. & Howting D. (2014b) The support needs of terminally ill people living alone at home: a narrative review. Health Psychology and Behavioral Medicine 2, 951–969. Benzein E., Norberg A. & Saveman B.-I. (2001) The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine 15, 117–126. Bury M. (1982) Chronic illness as biographical disruption. Sociology of Health and Illness 4, 167–182. Bury M. (1991) The sociology of chronic illness: a review of research and
prospects. Sociology of Health and Illness 13, 451–468. B€ ussing A., Ostermann T. & Matthiessen P.F. (2007) Adaptive coping and spirituality as a resource in cancer patients. Breast Care 2, 195–202. Charmaz K. (1983) Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness 5, 168–195. Chibnall J.T., Videen S.D., Duckro P.N. & Miller D.K. (2002) Psychosocial— spiritual correlates of death distress in patients with life-threatening medical conditions. Palliative Medicine 16, 331– 338. Chochinov H.M. (2006) Dying, dignity, and new horizons in palliative end-oflife care. CA: A Cancer Journal for Clinicians 56, 84–103. Chochinov H.M., Hack T., Hassard T., Kristjanson L., McClement S. & Harlos M. (2005) Dignity therapy: a novel psychotherapeutic intervention for patients nearing death. Journal of Clinical Oncology 23, 5520. Devik S.A., Enmarker I., Wiik G.B. & Hellzen O. (2013) Meanings of being old, living on one’s own and suffering from incurable cancer in rural Norway.
© 2015 John Wiley & Sons Ltd
Older people living alone at home with terminal cancer
European Journal of Oncology Nursing 17, 781–787. Edwards A., Pang N., Shiu V. & Chan C. (2010) The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a metastudy of qualitative research. Palliative Medicine 24, 753–770. doi:10.1177/0269 216310375860. Esbensen B.A., ØSterlind K., Roer O. & Hallberg I.R. (2004) Quality of life of elderly persons with newly diagnosed cancer. European Journal of Cancer Care 13, 443–453. Fisher C. & O’Connor M. (2012) “Motherhood” in the context of living with breast cancer. Cancer Nursing 35, 157–163. doi:10.1097/NCC.0b013e31821 cadde. Gomes B., Calanzani N., Gysels M., Hall S. & Higginson I. (2013) Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliative Care 12, 7. Grundy E., Mayer D., Young H. & Sloggett A. (2004) Living arrangements and place of death of older people with cancer in England and Wales: a record linkage study. British Journal of Cancer 91, 907–912.
© 2015 John Wiley & Sons Ltd
Hanratty B., Addington-Hall J., Arthur A., Cooper L., Grande G., Payne S. & Seymour J. (2013) What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care. BMC Family Practice 14, 22. Herth K. (1990) Fostering hope in terminally-ill people. Journal of Advanced Nursing 15, 1250–1259. Higginson I.J. & Booth S. (2011) The randomized fast-track trial in palliative care: role, utility and ethics in the evaluation of interventions in palliative care? Palliative Medicine 25, 741–747. Hsieh H.-F. & Shannon S.E. (2005) Three approaches to qualitative content analysis. Qualitative Health Research 15, 1277–1288. Hubbard G. & Forbat L. (2012) Cancer as biographical disruption: constructions of living with cancer. Supportive Care in Cancer 20, 2033–2040. Hubbard G., Kidd L. & Kearney N. (2010) Disrupted lives and threats to identity: the experiences of people with colorectal cancer within the first year following diagnosis. Health 14, 131–146. Mauthner N.S. & Doucet A. (2003) Reflexive accounts and accounts of
reflexivity in qualitative data analysis. Sociology 37, 413–431. Mays N. & Pope C. (2000) Assessing quality in qualitative research. British Medical Journal 320, 50–52. Miccinesi G., Bianchi E., Brunelli C. & Borreani C. (2012) End-of-life preferences in advanced cancer patients willing to discuss issues surrounding their terminal condition. European Journal of Cancer Care 21, 623–633. Reeve J., Lloyd-Williams M., Payne S. & Dowrick C. (2010) Revisiting biographical disruption: exploring individual embodied illness experience in people with terminal cancer. Health 14, 178–195. Rolls L., Seymour J.E., Froggatt K.A. & Hanratty B. (2011) Older people living alone at the end of life in the UK: research and policy challenges. Palliative Medicine 25, 650–657. Sand L. & Strang P. (2006) Existential loneliness in a palliative home care setting. Journal of Palliative Medicine 9, 1376–1387. Victor C., Scambler S., Bond J. & Bowling A. (2000) Being alone in later life: loneliness, social isolation and living alone. Reviews in Clinical Gerontology 10, 407–417.
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