‘We have no crystal ball’ - advance care planning at nursing homes from the perspective of nurses and physicians

Abstract

Objective: To investigate clinicians' perspectives on the factors that shape the process of advance care planning in a nursing home context. Design: Interviews. Latent qualitative content analysis. Setting: Nine nursing homes in Sweden. Subjects: 14 physicians and 11 nurses working at nursing homes. Main outcome measures: Participants' views on advance care planning (ACP) at nursing homes. Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patient's readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patient's preferences and staff's and family member's views; Decision & documentation of the ACP, e.g. clear documentation in patient's medical records that are up-to-date and available for staff caring for the patient, and Implementation & re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficencedefending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context. KEY POINTS Advance care planning can help patients to receive care in line with their preferences and can positively impact quality of end-of-life care. Our results describe a process consisting of four manifest categories and one latent theme constituting the process of advance care planning, that may be considered in education in advance care planning. The significance of nurses and physicians perceiving beneficence as well as fear of accusations of maleficence are important factors to contemplate. The study has implications for healthcare staff caring for patients near the end of their lives, in particular patients in nursing homes.

Elephant in the room - Family members´ perspectives on advance care planning

“…These differences in views and wishes about the discussion on endof-life issues indicate staffs' need to be sensitive to and have attunement to the patient's and family members' desire and readiness to speak about issues regarding end-of-life. These findings also go in line with results from other studies pointing out that ACP should be seen as a process, not an one-time event, and should be based on discussions from several meetings [12,25] and that the patient's views on life and death are essential and must be taken into account in the ACP process [12,24].…”

“…The value of ACP when caring for people living in NHs has been described as 'a neglected research topic' [15]. Despite the fact that family members are important in the process of ACP [6,[11][12][13], there is more to investigate regarding ACP in NHs from the perspective of family members, for example regarding their role in ACP and their experiences in decisions concerning treatment limits. Half of the annual deaths in Sweden take place in a NH [16], which makes it especially important to study ACP in this context.…”

“…Family members are often an important part of the ACP process [ 6 , 8 , 11 , 12 ], e.g. to support patients during ACP, to help patients to communicate their preferences for end-of-life care to the nurse or physician, and to represent patients’ thoughts when they no longer can communicate preferences or make decisions on their own.…”

“…In a previous study we found that nurses and physicians are afraid of being accused of maleficence, e.g. when initiating ACP or deciding the level of care in an acute situation [ 12 ]. In Sweden, only physicians, not nurses or the family members, have the authority to make decisions regarding life-sustaining care and restrictions, possibly based on patient preferences [ 14 ].…”

Disclosure and plan of care at end of life: Perspectives of people with intellectual disabilities and families in Ireland

“…(2014) have highlighted how care planning in advance would help service users to dictate treatment and other options so that they can attempt to receive care that is consistent with their preferences when they are no longer capable of making those decisions. Kastbom, Milberg and Karlsson (2019) and Huggins et al. (2019) reported similar findings, suggesting that service users who receive care consistent with their wishes and preferences are satisfied with their care.…”