Patient Participation in Decision Making at the End of Life as Seen by a Close Relative

Abstract

The aim of the present study was to describe variations in patient participation in decisions about care planning during the final phase of life for a group of gravely ill patients, and how the different actors' manner of acting promotes or impedes patient participation. Thirty-seven qualitative research interviews were conducted with relatives of the patients. The patients' participation in the decisions could be categorized into four variations: self-determination, co-determination, delegation and nonparticipation. The manner in which patients, relatives and caregivers acted differed in the respective variations; this seemed either to promote or to impede the patients' opportunities of participating in the decision making. The possibility for participation seems to be context dependent and affected by many factors such as the dying patient's personality, the social network, the availability of different forms of care, cultural values, and the extent to which nurses and other caregivers of the different forms of care can and want to support the wishes of the patients and relatives in the decision-making process.

Heterogeneity and changes in preferences for dying at home: a systematic review

“…Eight studies conducted in Australia, Canada, Sweden, the UK and the US added qualitative information on changes over time, mostly presented in case stories [40,52,53,66-70]. Different patterns emerged, which resonated with the quantitative findings.…”

“…In Morecambe Bay (UK), Thomas et al studied the preferences of 41 patients with advanced cancer and found they were strongly influenced by an assessment of caregivers’ capacity to care, irrespective of caregivers’ expressed desire to do it [52]. In Örebro (Sweden), Sahlberg-Blom et al interviewed bereaved relatives of 56 cancer patients and found that patient participation in end of life decisions, including on where to die, varied from self-determination and co-determination to delegation and non-participation, depending on context, patient’s personality, social network, cultural values and the extent to which their wishes and those of the caregivers could be supported [53]. …”

Assistant Nurses' Descriptions of Signs of Dying among Older People in Nursing Homes

“…The ANs described, for example, how the older people would press their lips together, clearly showing that they did not want to eat. Sahlberg-Blom et al (23) have shown that autonomy at the end of life is not synonymous with self-determination in its purest meaning, but can take different forms. The attitudes of the nursing staff are likely to have a significant impact on the ongoing opportunities for older people to be autonomous on their own terms.…”

Research Participation by Older Adults at End of Life: Barriers and Solutions

“…This can also create inadvertent selection bias that confounds generalizability of results (Ewing et al, 2004; Hudson et al, 2001). Self-determination is a core value of hospice and palliative care, and presumably support this in multiple ways, including patient education, providing informed choices regarding treatment options, actively involving family in decision-making to the extent desired by the patient, respecting ethnic and cultural traditions, and honoring the concept of holistic care (Sahlberg-Blom et al, 2000; Waldrop, 2006). For individuals at the end-of-life, promoting patient self-determination requires a climate in which decision-making is both facilitated and adaptive (i.e., accommodating to changes in attitudes based upon real-time experiences) at a time when control over various aspects of life is in decline.…”