Living Alone With Cancer in Older Age
Living Alone With Cancer in Older Age
Many of the experiences of older adults with advanced cancer were common to all, irrespective of living arrangements. People in this study who lived alone shared concerns over where they may be cared for in the future as their condition deteriorates, balanced by a desire to remain independent and not burden their families. These feelings had generally not been acknowledged or addressed by their professional carers, and no plans made for future health care decisions. Some of the changes made to the organisation of primary care services in the UK aimed at increasing efficiency and cost containment, were perceived as barriers to accessing health care.
Most research that has sought the views of older adults on the services they would prefer to receive when their condition deteriorates, or future admission to long term care, has not been conducted with people who were aware that death was imminent. In contrast, our participants had a cancer diagnosis and were living with a terminal illness. They expressed a desire not to be a burden to people who live on after their death, a finding shared with studies of older adults who are housebound and those living independently. Making plans for funerals was also a common theme. The desire to remain at home for as long as possible has been noted in other populations, along with a concern for comfort, rather than place of death. Despite the attention given to advance care planning in research, the impact on health care decisions is uncertain and none of the participants in our study had made these formalised plans. The process of discussion and review that would foster the development of advance care plans requires a trusting relationship with a professional carer. It may be that the lack of continuity in both primary and secondary care experienced by some participants was a significant barrier to meaningful discussion. Living alone is acknowledged as a risk factor for admission to long term care. Hence it is not surprising that the participants who lived alone expressed the most concern about this.
Our interviewees felt disadvantaged if they lived alone, but it is important to note that we have no data to suggest that they used fewer services, or lacked access to specific forms of care. Evidence for an association between living circumstances and use of services is conflicting. Older adults living alone have not been shown to be high users of primary care, and services for patients with lung cancer were found to relate to need rather than living circumstances. Readmission to hospital is more common amongst people living alone, and older people who live alone have been shown to be more likely to die in hospital. The lower proportion of home deaths could be related to the absence of co-residents or in some cases, reduced access to specialist palliative care.
Living alone is not necessarily synonymous with an absence of caregivers or family members, and the network of social support available from outside the household is an important determinant of need for care. Nevertheless, the presence or absence of co-resident caregivers will influence the level and type of support services required. It may also be associated with loneliness and isolation – both of which are linked with increased morbidity and premature mortality from a range of causes. In this study, feeling emotionally unsupported may have been at the root of participants' perceptions of being disadvantaged as patients if they lived alone. It is also important to acknowledge that living circumstances may change for a number of reasons and do not have the stability of other variables used to characterise individuals, such as educational achievement or even socioeconomic status.
Strengths and Weaknesses. The study participants were aged, unwell and many lived in disadvantaged areas. Thus they represent a group whose voice is heard less often in research. All would have lived through war or times of austerity, and the stoicism that was apparent in many of the accounts is likely to reflect their life experiences. But whether these attitudes would be shared by less aged adults living with cancer, requires further study. Older men living alone were over represented in our study. Half of our participants who lived alone were men, whereas the equivalent figure in the UK population is around 30%. Gaining insights into the experiences of this group is a strength of our study, as older men living alone may be less likely to seek help for health related problems and have fewer social ties and less emotional support than their female peers. It was important that participating GPs were able to use their clinical judgement to exclude potential interviewees, but we cannot know if there was any variation in the way inclusion criteria were applied. Research governance protocols leave us with no data on the characteristics of non-responders, or the populations from which our sample was selected. This is a limitation shared by all similar studies.
Discussion
Many of the experiences of older adults with advanced cancer were common to all, irrespective of living arrangements. People in this study who lived alone shared concerns over where they may be cared for in the future as their condition deteriorates, balanced by a desire to remain independent and not burden their families. These feelings had generally not been acknowledged or addressed by their professional carers, and no plans made for future health care decisions. Some of the changes made to the organisation of primary care services in the UK aimed at increasing efficiency and cost containment, were perceived as barriers to accessing health care.
Comparison With Other Work
Most research that has sought the views of older adults on the services they would prefer to receive when their condition deteriorates, or future admission to long term care, has not been conducted with people who were aware that death was imminent. In contrast, our participants had a cancer diagnosis and were living with a terminal illness. They expressed a desire not to be a burden to people who live on after their death, a finding shared with studies of older adults who are housebound and those living independently. Making plans for funerals was also a common theme. The desire to remain at home for as long as possible has been noted in other populations, along with a concern for comfort, rather than place of death. Despite the attention given to advance care planning in research, the impact on health care decisions is uncertain and none of the participants in our study had made these formalised plans. The process of discussion and review that would foster the development of advance care plans requires a trusting relationship with a professional carer. It may be that the lack of continuity in both primary and secondary care experienced by some participants was a significant barrier to meaningful discussion. Living alone is acknowledged as a risk factor for admission to long term care. Hence it is not surprising that the participants who lived alone expressed the most concern about this.
Our interviewees felt disadvantaged if they lived alone, but it is important to note that we have no data to suggest that they used fewer services, or lacked access to specific forms of care. Evidence for an association between living circumstances and use of services is conflicting. Older adults living alone have not been shown to be high users of primary care, and services for patients with lung cancer were found to relate to need rather than living circumstances. Readmission to hospital is more common amongst people living alone, and older people who live alone have been shown to be more likely to die in hospital. The lower proportion of home deaths could be related to the absence of co-residents or in some cases, reduced access to specialist palliative care.
Living alone is not necessarily synonymous with an absence of caregivers or family members, and the network of social support available from outside the household is an important determinant of need for care. Nevertheless, the presence or absence of co-resident caregivers will influence the level and type of support services required. It may also be associated with loneliness and isolation – both of which are linked with increased morbidity and premature mortality from a range of causes. In this study, feeling emotionally unsupported may have been at the root of participants' perceptions of being disadvantaged as patients if they lived alone. It is also important to acknowledge that living circumstances may change for a number of reasons and do not have the stability of other variables used to characterise individuals, such as educational achievement or even socioeconomic status.
Strengths and Weaknesses. The study participants were aged, unwell and many lived in disadvantaged areas. Thus they represent a group whose voice is heard less often in research. All would have lived through war or times of austerity, and the stoicism that was apparent in many of the accounts is likely to reflect their life experiences. But whether these attitudes would be shared by less aged adults living with cancer, requires further study. Older men living alone were over represented in our study. Half of our participants who lived alone were men, whereas the equivalent figure in the UK population is around 30%. Gaining insights into the experiences of this group is a strength of our study, as older men living alone may be less likely to seek help for health related problems and have fewer social ties and less emotional support than their female peers. It was important that participating GPs were able to use their clinical judgement to exclude potential interviewees, but we cannot know if there was any variation in the way inclusion criteria were applied. Research governance protocols leave us with no data on the characteristics of non-responders, or the populations from which our sample was selected. This is a limitation shared by all similar studies.
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