Advance Care Planning in Nursing Home Patients With Dementia: A Qualitative Interview Study Among Family and Professional Caregivers

doi:10.1016/j.jamda.2015.06.015

Journal of the American Medical Directors Association

Volume 16, Issue 11, 1 November 2015, Pages 979-989

Preliminary results were presented at the 2011 International Psychogeriatric Association congress in The Hague. An abstract of this work was published as: van Soest-Poortvliet MC. Barriers and facilitators of (timely) planning of palliative care in patients with dementia: A study in Dutch nursing homes (S07A.02). Part of Symposium 07: Palliative ways and means: Improving end-of-life care for people with dementia (2011). Symposia. International Psychogeriatrics, 23 (S1), p S29.

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Abstract

Objective

The aim of this study was to describe the process of advance care planning (ACP) and to explore factors related to the timing and content of ACP in nursing home patients with dementia, as perceived by family, physicians, and nurses.

Design

A qualitative descriptive study.

Methods

A total of 65 in-depth qualitative interviews were held with families, on-staff elderly care physicians, and nurses of 26 patients with dementia who died in the Dutch End Of Life in Dementia (DEOLD) study. Interviews were coded and analyzed to find themes.

Results

Family, nurses, and physicians of all patients indicated they had multiple contact moments during nursing home stay in which care goals and treatment decisions were discussed. Nearly all interviewees indicated that physicians took the initiative for these ACP discussions. Care goals discussed and established during nursing home stay and the terminology to describe care goals varied between facilities. Regardless of care goals and other factors, cardiopulmonary resuscitation (CPR) and hospitalization were always discussed in advance with family and commonly resulted in a do-not-resuscitate (DNR) and a do-not-hospitalize (DNH) order. The timing of care planning discussions about other specific treatments or conditions and the content of treatment decisions varied. The factors that emerged from the interviews as related to ACP were general strategies that guided physicians in initiating ACP discussions, patient's condition, wishes expressed by patient or family, family's willingness, family involvement, continuity of communication, consensus with or within family, and general nursing home policy. Two influential underlying strategies guided physicians in initiating ACP discussions: (1) wait for a reason to initiate discussions, such as a change in health condition and (2) take initiative to discuss possible treatments (actively, including describing scenarios).

Conclusions

ACP is a multifactorial process, which may lean on professional caregivers' guidance. The most acute decisions are covered in advance, but a responsive as well as a proactive style is seen with other treatment decisions. Further research is needed to increase understanding of whether and how the physicians' strategies affect care processes and outcomes.

Section snippets

Design

We used a qualitative descriptive methodology: explorative, qualitative in-depth interviews of family, physicians, and nurses using a topic list, and thematic analysis.

Sample Selection

In this qualitative interview study, we sampled from a larger project about care and outcomes in NH patients with dementia, the DEOLD study.²⁰ In the prospective data collection of this DEOLD study, on-staff elderly care physicians and family of patients with a physician's diagnosis of dementia who were newly admitted to the

Results

Twenty-six patient cases were discussed in the interviews. The quantitative DEOLD study showed that for these 26 patients the mean age at death was 83 years; 17 of them were women, 6 patients had severe dementia on admission, 12 patients had a comfort care goal within 8 weeks after admission, and, at death, 23 patients had a comfort goal (Table 1). According to the physician after-death questionnaire, in 9 patient cases, the most important trigger to provide comfort care was an obviously poor

Discussion

This qualitative interview study aimed to describe experiences of family, physicians, and nurses on the process of ACP in Dutch NHs and to explore factors related to ACP. The study showed that it was standard practice to make advance decisions about CPR and hospitalization soon after admission. However, the timing and content of discussions on other treatment decisions and on general goals of care depended on a variety of factors, and the terminology used to describe care goals varied between

Conclusion

This study highlights that ACP in dementia appears to be influenced by multiple factors, but 2 physicians' strategies shape the context and other factors, such as the patient's condition and family factors, potentially modify the timing and content of ACP. Although the most acute decisions that may have an immediate effect on survival (hospitalization and resuscitations) are covered in advance, a proactive as well as a more responsive “wait-and-see” style is seen with regard to palliative care

Acknowledgments

We thank all the family caregivers, physicians, and nurses who contributed to this study. We thank the Netherlands Organisation for Scientific Research (NWO, The Hague; Veni 916.66.073; Vidi 917.11.339), ZonMw, The Netherlands Organisation for Health Research and Development (Palliative Care in the Terminal Phase program, grant number 1151.0001), and the Department of General Practice and Elderly Care Medicine, and the Department of Public and Occupational Health of the EMGO Institute for

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