Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study

Sanne P. C. van Oosterhout,Yvonne Schoon,Maartje van Geel,Floor K. Ploos van Amstel,Evelien J. M. Kuip,Daisy J. M. Ermers,Yvonne Engels,Carla M. L. van Herpen,Marieke Perry

doi:10.1186/s12904-021-00833-z

Sanne P. C. van Oosterhout, Yvonne Schoon + Show 7 more

Open Access

https://doi.org/10.1186/s12904-021-00833-z

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Abstract

BackgroundPatients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process.MethodsWe performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands.ResultsFour themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient’s future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers’ experiences and needs seemed to be overlooked during medical encounters.ConclusionsFamily caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations.

Highlights

Patients with incurable cancer face complex medical decisions
Involvement of family caregivers in the shared decision making process is essential as the process and its outcomes affect the family caregivers: it increases their quality of life and coping abilities with home-based palliative care [7, 8, 13, 14]
Theme 1: scenarios of decision making Four scenarios of decision making were addressed by the family caregivers in which the person(s) involved in making treatment decisions varied: 1) shared, 2) patient decides, 3) caregiver decides, and 4) physician decides

Summary

Introduction

Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. Family caregivers are viewed as irreplaceable sources of support for patients with incurable cancer and van Oosterhout et al BMC Palliat Care (2021) 20:137 play an important role in patients’ disease management and shared decision making [1, 4,5,6] This latter concept is defined as a process between patients and their physicians, and if applicable, the patients’ relatives, whereby all parties share information, express their treatment preferences, and make a decision by mutual agreement [10,11,12]. Whilst the importance of involving family caregivers in the shared decision making process of incurable cancer is acknowledged, clear insights into their experiences remain largely unexplained This qualitative interview study explored how bereaved family caregivers experienced the shared decision making process between their relative, themselves, and the medical oncologist

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