
Module 4: Supporting families and friends
4.1 Introduction
This module focuses on families (and friends). You will learn about people’s experiences of witnessing deaths after discontinuation of clinically-assisted nutrition & hydration; think through some of the questions family members might have, and consider how best to support them. You will also explore how to anticipate and try to pre-empt potential problems and we will identify key resources which might help.
For these learning materials, we draw on our experience of supporting many families and friends of patients through this process. We have spoken to them before and after the patient’s death.
As researchers we have also undertaken a formal study. We’ve interviewed 21 people about witnessing the death of a PDOC family member after feeding tube withdrawal. They talked to us about their expectations of what the death would be like and about how they actually experienced it in practice. The research is published in the journal ‘Palliative Medicine’ (Kitzinger and Kitzinger, 2018) and you can read the article here: “Deaths after feeding-tube withdrawal… a qualitative study of family experience” (If you want to know more, all our publications are free and open access here: https://cdoc.org.uk/publications)
Optional Continuing Professional Development (4.1). Family support.
Click below for an optional CPD exercise if you’d like to engage with the original academic research.
Otherwise just move on through the course and you will find examples of key findings throughout the learning materials that follow.
CLICK HERE for optional CPD exercise: Research with Families
Read the following research article: “Withdrawing artificial nutrition and hydration from minimally conscious and vegetative patients: family perspectives”
1. Summarise (a) The method of the research (b) the findings and (c) the recommendations and add your own critical analysis of the research
2. Add a personal reflection from your own experience
3. Building on the above work, draft a plan to enhance support for families in the context in which you are working.
(Note this article is now out-of-date about the law as it was written before the ‘Re Y’ case in 2018; the findings are still very relevant, however, to understanding how families may feel about CANH).
This module summarises some of our key findings about family experiences and highlights implications for care providers. We’re grateful to everyone who agreed to be interviewed and special thanks to family members who contributed, often agreeing to have film clips used in order to help staff understand family experience as fully as possible.
In the following learning units we address the themes identified by our research including: fears about CANH-withdrawal, some family positive experiences of end-of-life, how families might feel at the bedside, and their experiences of grief (complicated by having ‘lost’ their loved one long before they died). We also highlight family questions and concerns about physical changes, clinical management, the timing of death and the broader ethical issues.
