Going against patients' will? A qualitative study of how palliative health-care professionals handle competing considerations when children are excluded from parental illness and death.

Ingrid Johnsen Hogstad,Kjartan Leer-Salvesen

doi:10.1016/j.ejon.2020.101839

Abstract

The Norwegian Health Personnel Act (HPA §10a) obliges health professionals to contribute to meeting minor children's need for information about their parents' illness and prognosis. Previous research has shown that many parents withhold information about illness and anticipated death from their children. This study explored main considerations for palliative health-care professionals in these situations, and how they negotiate conflicting considerations of confidentiality and child involvement. This qualitative exploratory study involved semi-structured interviews with 11 palliative health-care professionals. Hermeneutics informed the data analysis. The health professionals' main considerations were sustaining patients' hope and building trust in the professional-patient relationship. Both concerns were grounded in respect for patient autonomy. The health professionals negotiated patient autonomy and child involvement in different ways, defined in the present analysis on a continuum ranging from granting full patient autonomy to going directly against patients' will. The professional-patient relationship is the primary consideration in the health care context, and decision making on the degree of children's involvement happens in a dialogical process between health professionals and patients. Close professional-patient relationships might increase the emotional impacts on health professionals, who consequently might give greater relative weight to patients' will. We propose that procedures for initiating collaboration with professionals in the child's everyday life context help health professionals involving the child without threatening trust.

Highlights

Communication about end-of-life issues presents complex challenges to health professionals (Parry et al, 2014)
The Norwegian Health Personnel Act (HPA §10a) obliges health professionals to involve the children of their patients so they receive information about their par ents’ illness and prognosis
Several studies in Scandinavian countries have shown that the dominant medical logic, time pressures and limited economic resources result in health professionals prioritising patients and medical issues over the patients’ relatives and psychosocial issues (Dencker et al, 2017; Karidar et al, 2016)

Summary

Introduction

Communication about end-of-life issues presents complex challenges to health professionals (Parry et al, 2014). That complexity increases when patients are parents of minor children. The structural and organisational working conditions of palliative health-care professionals hinder rather than facilitate child involvement. In a literature review, Franklin et al (2018) confirmed the findings of several Scandinavian studies reporting that encountering children in close proximity to death in the workplace has emotional and existential effects on health professionals, creating a need for self-distancing and -protection. A. Tell me about your experiences with the minor children of your patients. I. What is the best way of taking care of- and supporting kindergarten-aged children when mother or father is dying?

Results

Discussion

Conclusion