Abstract
Abstract
Background:
It is projected that in Australia there will be between 28% and 48% of palliative care patients living alone by the year 2031. As such, it will become increasingly important to provide appropriate home-based care in order to support these patients to be cared for and die at home.
Aim:
This study explored the experiences of community-based palliative care cancer patients who live alone without a caregiver and what psychosocial issues they face.
Methods:
Face-to-face semistructured interviews were conducted with eight participants, and constant comparison was used for the analysis.
Findings:
Four main themes emerged: (1) loss of social networks; (2) maintaining independence; (3) balancing independence and the need for assistance; and (4) planning for the end of life.
Discussion:
Participants balanced independence with the need to accept help in order to maintain independence. Participants became more flexible about their preferred place of death.
Conclusion:
The practice implications for working with people close to death who are living alone are that supports and assistance may be needed to maintain social networks and also a sense of independence.
Introduction
I
A Swedish study exploring the experience of isolation of patients in a home-based palliative care setting found experiences of loneliness to be common, even when people had caregivers. 17 These feelings may be exacerbated when people live alone; living alone with increasing disability could also diminish quality of life and restrict social connections.18,19
This study explored the experiences of community-based palliative care cancer patients who live alone without a caregiver and what psychosocial issues they face as they reach the end of life.
Methods
Design
This qualitative study was guided by a social constructionist approach, as the research is applied and focused on people's own interpretations of their experiences.
Context
The interviews were conducted as part of a pilot randomized controlled trial (RCT) looking at the feasibility of personal alarms and extra care aide support for palliative care patients living alone.3,20
Participants
There were four female and four male participants aged between 56 years and 86 years, with an average age of 73.1 years. The participants had lived alone between 5 months and 22 years, with a median length of time of 9 years. All participants were diagnosed with cancer. Three participants were widowed and five were divorced.
Method
Six participants were interviewed in their homes and two participants in a hospice for respite care. Duration times ranged from 25 minutes to 62 minutes (the mean was 35 minutes). An interview schedule was used with some central questions such as, “What social activities do you enjoy?” and prompts.
Ethics
Ethical approval was provided by Curtin University and the Home Hospice Research Ethics Committee.
Data analysis
All interviews were transcribed verbatim. Constant comparison was used for the analysis.21–23 Salient words and phrases were highlighted. The text was then coded into descriptive categories and grouped into themes. Memo writing and constant comparisons were used.
An audit trail was used to document the research process. Interpretations were presented to different audiences for comment and findings were discussed to reach consensus on the final themes.24,25
Results
Four main themes emerged: (1) loss of social networks; (2) maintaining independence; (3) balancing independence and the need for assistance; and (4) planning the end of life.
Loss of social networks
Social relationships and networks were important to participants but these were hard to maintain:
And I think what it is, “We hear that he's really sick” and “If he gets all horrible and wasted”…where they're a bit fearful…when they visit, what they'll be presented with.
(Participant 8)
Previous social activities that were no longer possible were missed:
“I loved bowls, I loved playing it…. You see I used to keep fit on a Monday there, bowls on a Tuesday.…Thursday it were bowls again, then Saturday I used to run a dance.”
(Participant 6)
“I was never home…. I was always busy, all the time, and I think that's the hardest thing, having to give up all of those things.”
(Participant 4)
Increasing disability and restricted social contact led to feelings of social isolation and loneliness:
“Sometimes I get a bit lonely. The worst time is six o'clock at night, when you come in, shut the door and lock it, and put the lights on.”
(Participant 6)
However, some participants looked for other options:
“I like my computer, and I'm on it all the time…. I get in touch with all my English friends and Irish friends. I don't know where I would be without it you know.”
(Participant 4)
Maintaining independence
Participants saw independence as an essential part of their identity, representing normality and getting on with everyday life:
“I've been living on my own for so long that I'm able to cope very well on my own.”
(Participant 5)
“I'm fairly independent and I've sort of tried since I got the illness to keep things as normal as I could.”
(Participant 8)
There was also a reluctance to accept help and there was some irritation when help was suggested:
“I've got a lady who offered me to go in there and stop there a night or two. But I don't want to put her out.”
(Participant 6)
“I'm one of those people who would never interfere in someone else's life and tell them what to do and I really don't like anyone doing it to me either.”
(Participant 4)
Participants acknowledged that this sense of control could be lost:
“If I get too sick to look after myself, like if I got to the terminal stage. I think that would be the only thing that would stop me living by myself.”
(Participant 5)
Maintaining physical and cognitive abilities was a key aspect of maintaining independence:
“I would like to go while I've still got…this freedom with my body…and my brain…. I would hate to be a burden on anybody…. The thought that I'd have to go into a home would drive me up the wall…that would finish me off.”
(Participant 4)
Balancing independence and the need for assistance
Participants' desire for independence was balanced by an acceptance that assistance may be needed in order to maintain autonomy:
“I'm fiercely independent and I'd rather crawl on my hands and knees to do something, rather than have people do it for me. But sometimes you have to have a bit of care…. [A care-aide]…gives me all the confidence in the world.”
(Participant 4)
Participants felt the reason people could live alone at home independently was because there was support available from health professionals, family, friends, and neighbors:
“I guess, in the past, I was a bit worried that I'd get really ill and no-one would know…like dying in the armchair and not being found for a week…. But that's not such a big issue now, knowing I can ring home hospice any time.”
(Participant 8)
“[My best friend] rings me usually twice a day…. We usually have a 20 minute conversation every night, which I look forward to. That's really my only social contact, apart from going to the shops during the day.”
(Participant 9)
“Being at home is possible, [as] the minute anything happens they ring my daughter.”
(Participant 4)
“I said if you don't see the curtains drawn at half past ten, and she's [the dog] barking, you'd better come on in and have a look see, I might have fallen down and broke a leg or something.”
(Participant 6)
Planning for the end of life
Many participants wanted to remain at home during their illness and die at home. One participant summed up the thoughts of many by saying:
“I'd like to stop in my house for as long as I can, I'd like to stop with my little dog as long as I can.”
(Participant 6)
However, some participants became more flexible about their preferred place of death as they reached the end of their lives:
“I want to remain at home as long as possible but if I have serious symptoms I would have to go to hospital.”
(Participant 4)
“I hope to stay here until the end of my life…. I was at one stage averse to even talking about a hospice, but now I've discussed it…I leave my options open.”
(Participant 8)
One participant chose a hospice as her preferred place to die for the peace she would have there:
“I think that [hospice] would be a more peaceful place.”
(Participant 5)
There was also an acknowledgment that dying alone may not be the best option for someone without a caregiver:
“I try not to think about it. I would…not want to be alone, hence the hospice.”
(Participant 4)
Discussion
Loss of friends and social activities formed a division between life before participants were terminally ill and life after. The participants reported loneliness due to these losses. The importance of having positive relationships for palliative care cancer patients living at home has been reported previously.26,27
Participants in this study were staunchly independent. They were driven to maintain this independence and control and were strongly motivated to cope and not be a burden on anyone else. These findings mirror previous findings that palliative care cancer patients living at home were afraid of becoming totally dependent on others. 26
However, of interest, many participants accepted assistance in order to maintain autonomy—they acknowledged that staying at home and living independently necessitated accepting some support. This shift and flexibility also emerged in terms of preferences about where to die.
A limitation of the study was the small number of participants. People died before being able to participate in the study. Potential participants were also admitted to inpatient facilities, became too sick to participate, or were discharged. However, saturation was reached, as the sample was fairly homogeneous.
Conclusion
One practical implication for health professionals working with people close to death who are living alone is that asking about supports to maintain social contacts and social activities is essential. Help with using the Internet or giving lifts could make a difference to people living alone with increasing physical difficulties; also helpful is to keep asking about plans for end of life, as these may change.
Footnotes
Acknowledgments
This research was funded by The Australian Research Council and Silver Chain. I would like to thank all participants who gave their time generously. Many thanks to Ms Kathy Deas for conducting the interviews and helping to prepare the manuscript, Ms Kim Skett for her clinical insights, Ms Joanne Smith for her clinical research support, and Professor Samar Aoun for reading an earlier draft of the manuscript.
Author Disclosure Statement
No competing financial interests exist.