‘Do you have a future when you are 93?’ Frail older person’s perceptions about the future and end of life – a qualitative interview study in primary care

Abstract

Objective To explore frail older persons’ perceptions of the future and the end of life. Design Qualitative content analysis of individual semi-structured interviews. Setting Nine primary health care centres in both small and middle-sized municipalities in Sweden that participated in the intervention project Proactive healthcare for frail elderly persons. Subjects/Patients The study includes 20 older persons (eight women and 12 men, aged 76–93 years). Main outcome measures Frail older persons’ perceptions of the future and end of life. Results The analysis uncovered two main categories: Dealing with the future and Approaching the end of life. Dealing with the future includes two subcategories: Plans and reflections and Distrust and delay. Approaching the end of life includes three subcategories: Practical issues, Worries and realism, and Keeping it away. Conclusion This study highlights the diverse ways older people perceive future and the end of life. The results make it possible to further understand the complex phenomenon of frail older persons’ perceptions on the future and the end of life. KEY POINTS The study found that older persons described their future as contradictory- with a broad spectrum of approaches, where some wanted to deal with these subjects and others wanted to ignore them. •Older persons that consciously planned for the future had tactics that often were related to goals that functioned as motivators to live longer. •Those who adopted a more passive approach did not think about what the future might hold in terms of losing autonomy and deteriorating health. •Older persons that approached end of life in a more proactive way wanted to plan practical arrangements around death but often found it hard to address this issue with relatives. •Those older persons that had a more passive approach to end of life preferred not to think about those issues, and some explicitly stated that they did not want to address the final period of life.

Meta-analysis of qualitative studies on older people’s attitudes toward death in a nursing facility

“…“I don’t want to spend my last days in a nursing home, I have told my children. They don’t agree, and it is hard for me to ignore my own attitude and needs” 10 ). Some hope for emotionally enriching experiences with family in daily life care (“When my physical function declines to the point that I cannot eat, I hope my family will be with me and feed me.…”

“…Some older people think that growing old slowly with a partner in a nursing home is a very happy thing and can fill any emotional gap (“It is very happy to have a partner to grow old together with in a nursing home. When I consider the sudden death of my partner one day… I dare not think about the future, I hope we can die together” 10 ). Some older people even worry that their death will bring greater pain to their families (“I worried that my death will make my family feel pain.…”

“…The results of meta-integration of the literature A total of 10 studies were conducted in these 10 regions: China (n = 2) (Wang Yan yan et al, 2018; 8 ), Sweden (n = 2) (Jane Osterlind et al, 2016; 9 ), Mexico (n = 1), 10 Norway (n = 1), 11 Israel (n = 1) (Ronit et al, 2010), 12 the United States (n = 1) (Kenneth et al, 2016, 2000), 14 the Netherlands (n = 1), 15 and Germany (n = 1) (SABINE et al, 2007). 17 A total of 291 participants were included in these 10 studies, all of whom were elderly people living in nursing homes for > 3 months and all of whom were older than 65 years.…”

Thanks for hearing me: key elements of primary care according to older patients

“…Information and communication technology (ICT) is also known to be less used by frail older people [ 29 ]. Healthcare staff involved in the care of older people should consider that needs, thoughts, values, and preferences expressed by one patient might not be shared by others [ 30 ]. Each patient should be asked, sometimes repeatedly, about specific needs and wishes and what is important for them in the end of their lives.…”