Decision Making at the End of Life in Dementia: How Family Caregivers Perceive Their Interactions With Health Care Providers in Long-Term-Care Settings

Abstract

Making end-of-life care decisions in the context of dementia is complex. As people with advanced dementia are incapable of deciding about their own care, family caregivers often become involved with health care providers in the decision-making process to ensure the best care for their loved one. Using a grounded theory approach, the experience of family caregivers in making such end-of-life care decisions was explored. Twenty-four caregivers were interviewed. The results show that caregivers evoke five dimensions when considering these decisions. One dimension, the relationship with health care providers, emerged as vital to their experience. Four elements of this relationship are presented in this article: quality of the relationship, frequency of contact, congruence of their values and beliefs with those of health care providers, and the level of trust. In an era that promotes partnership with families in long-term-care settings, care standards are needed in order to guarantee family participation in achieving quality dementia care.

End of life care for community dwelling older people with dementia: an integrated review

“…The presence of an advance care plan and perceptions of a patient's quality of life may affect carers' decision making about interventions to prolong life. However, the review demonstrated how contextual factors such as level of education, rural or urban settings and nationality all influence individuals' responses to decision making about place of care and interventions at the end of life (Caron et al, 2005a(Caron et al, , 2005bChen et al, 2006;Gessert et al, 2006). Very few studies have engaged with how carers interact with professionals in the decision-making process, nor have they described what is required for effective communication (Caron et al, 2005b) even though it is clear that how physicians resolve and negotiate patient and family preferences regarding care appears to directly influence patient outcomes (Helton et al, 2006).…”

“…However, the review demonstrated how contextual factors such as level of education, rural or urban settings and nationality all influence individuals' responses to decision making about place of care and interventions at the end of life (Caron et al, 2005a(Caron et al, , 2005bChen et al, 2006;Gessert et al, 2006). Very few studies have engaged with how carers interact with professionals in the decision-making process, nor have they described what is required for effective communication (Caron et al, 2005b) even though it is clear that how physicians resolve and negotiate patient and family preferences regarding care appears to directly influence patient outcomes (Helton et al, 2006). In the absence of agreed guidelines, and advance care plans, decision making for people with dementia at the end of life is shaped by differences in religious beliefs, professional training, understanding of the disease, what is meant by palliative care, perspectives of other patients, culture and beliefs (Luchins and Hanrahan, 1993;Cavalieri et al, 2002;Hinkka et al, 2002;The Anne Mei, 2002;Lacey, 2005;Haydar et al, 2004;Rurup et al, 2006).…”

Dying with Dementia: What We Know after More than a Decade of Research

“…Family experiences have been described in a variety of qualitative studies (i.e., [78][79][80][81][82][83][84][85]). The results of selected studies have been integrated in a recent review, showing considerable unmet needs in families [85].…”

“…The results of selected studies have been integrated in a recent review, showing considerable unmet needs in families [85]. Through the beginning of 2010 (Box 1, Table 1), at least 45 studies [28,[33][34][35][36][37][38][40][41][42][43]46,47,52,60,61,63,65,66,80,[86][87][88][89][90][91][92][93][94][95][96][97][98][99]110] in another 26 publications [39,44,45,53,54,64,67,69,[111][112][113][114][115]…”

Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review

“…Study focus included pain management, in particular inadequacies in knowledge and the impact of education, 14,16,30,31,[35][36][37]40,44,46 caregiver-patient communication, 15,19,21,22,27,39 caregiver-health professional communication, 13,18,25,45 caregiver needs, 23,26,29,32,34,38 servicerelated communication and information, 20,33,[41][42][43] and the implementation and development of interventions. 14,19,28,44 Japan, 23 the Netherlands 29 and Sweden.…”