A place to die: preferences for place of care and place of death in terminally-ill patients and their family caregivers

Abstract

Advances in healthcare, treatment and technology have profoundly altered the experience and place of dying. While caring for family members at home as they approached death was once the norm, the management of the dying has now become an increasingly complex medical science that often requires formal care in institutional settings. With these developments in mind, decisions regarding place of care and place of death have received considerable attention. Given the choice, the majority of people want to stay at home; however, the reality is that most die in hospitals. This thesis will explore the decision making concerning place of care and place of death in terminally ill patients and their family caregivers.

In this process, decision making has been examined from both a theoretical and an empirical perspective. Theoretical models of choice offer valuable insights into what influences intentions and subsequent behaviour. However, a review of the empirical literature showed that studies addressing place of care and place of death vary greatly in the precision, methods, timing and sources of their preference assessments. It could be concluded from these studies that in clinical practice, the question of where to spend one’s last days is much more complex than most theories can grasp.

The mixed-methods research undertaken as part of this thesis was based on these theoretical and methodological considerations. Specifically, the current research examined the perspectives of terminally ill patients within their last year of life and further explored the role of family caregivers in the decision-making process. Study 1 used multiple-choice questionnaires to describe location preferences of patients and carers, identify factors that influence them, address the relationship between preferred and actual place of death, and examine the level of end-of-life agreement in patient-caregiver dyads. Study 2 included a series of semi-structured interviews to gain an in-depth understanding of the underlying processes and reasons that govern the decision making.

In this research three main findings were identified: firstly, family carers tended to have lower preferences for care and death at home than patients did and their ability to accurately assess their patient’s wishes varied depending on the assessment task. This affirms that patients and carers must be acknowledged as two separate entities with sometimes different preferences and views. Secondly, some respondents’ preferences for place of care were different from their preferences for place of death. The distinction most often observed was that participants wanted to be cared for at home, but they did not necessarily want to die there. This finding draws attention to the importance of clear communication at the end of life. Finally, preferences of terminally ill patients and their carers were influenced by a complex interplay of illness-related, personal, interpersonal and structural factors. Study 1 particularly addressed the role of physical and psychological symptoms, respondents’ personality traits, experiences with different care settings as well as the quality of the patient-carer relationship. Study 2 further highlighted the role of uncertainty in the decision-making process. Respondents dealt with this uncertainty on a level of thoughts, emotions and actions as they balanced on a spectrum between not knowing enough and knowing too much.

Findings from this empirical research have implications for future studies and clinical practice as they emphasise the malleability of preferences, and define decision making at the end of life as a highly contextual, personal, relational, conditional and flexible process.