Institutionalised older people's experiences and perceptions of death and their attitudes towards decision-making at end of life : a qualitative study

Abstract

End-of-life (EOL) discussions are not yet the norm across the Maltese Islands. This lack of communication of the patient’s preferences, wishes and values can lead to ethical and moral dilemmas at EOL. Research reveals that there is a willingness amongst older adults to be included in the decision-making process. Acquiring a better understanding of their subjective meanings, perceptions, and values at EOL are prerequisites in institutions to enable person-centred care and a dignified death. This study aimed to explore the experiences and perceptions of institutionalised older adults on EOL including death and their attitudes towards decision-making in this stage of life, with the introduction of Advance Care Planning (ACP) as a novel tool to safeguard their autonomy and dignity till the end. This study followed a qualitative approach, informed by an interpretative phenomenological analysis (IPA) design, in the quest to derive meaning from the participants’ lived experiences. Ethical permissions were sought and obtained from the Faculty Research Ethics Committee on the 18th of February 2022. Six cognitively preserved older adults residing in Saint Vincent de Paul – Long term care facility (SVP) were interviewed. Data was collected via individual semi structured interviews, transcribed verbatim, and translated accordingly. Data was analysed through IPA. The findings revealed that even though older adults move to an institution to safeguard their well-being or to accompany their loved ones, it may still adversely affect their sense of self and autonomy. Death and dying were mainly perceived as the inevitable outcome of life and as an opportunistic release from suffering and pain. Three modalities of suffering experiences namely, family and personal past experiences and room-mates experiences of suffering in dying did strongly affect how respondents reacted to care preferences in the EOL. Preferences and wishes for their EOL care were revealed, ranging from achieving a good and dignified death to ideas about how to terminate their life, in the face of suffering. Moreover, older adults valued autonomy differently regarding decision-making in their EOL and identified their preferred roles and that of other stakeholders in the decision-making process. In addition, their fear of losing autonomy in their EOL was emphasised, with respondents looking favourably towards the introduction of ACP as a tool to control and sustain a voice in their EOL. Death is an inevitable part of life, but the major concern amongst older adults residing in SVP is not the eventuality of death itself but rather how they approach and embrace it. The perception and experience of death and dying are subjective and EOL discussions are the way to help allay the anxiety of loss of control in the EOL, where ACP could serve as the key to translating such preferences into advance care directives that help sustain autonomy.