What is important to measure in the last months and weeks of life?: A modified nominal group study

https://doi.org/10.1016/j.ijnurstu.2005.06.005Get rights and content

Abstract

Background: Identifying the most important issues for palliative care patients and their families, and assessing whether services address these appropriately is important. Little is known about the views of United Kingdom service users and whether, and in what ways, they differ from those in the published literature from other countries, or from health professionals.

Aims: To investigate what is important to measure at the end of life from the perspectives of United Kingdom patients, bereaved relatives and health care professionals.

Methods: Ten focus groups, using a modified nominal group technique, with a total of 75 participants (10 patients, 35 professionals and 30 bereaved relatives) enabled issues participants thought important to measure at the end of life to be identified and prioritised using ratings and rankings. Thematic analysis of the data was conducted to enable cross-group comparison.

Findings: Seven themes were identified as most important to participants: symptom management; choice and control; dignity; quality of life; preparation; relationships; and co-ordination and continuity. Bereaved relatives and professionals emphasised symptom management, relationships and quality of life, whilst patients prioritised issues around preparation.

Conclusions: The study was successful in identifying aspects of end of life care that are important to patients, families and health professionals in the United Kingdom. Although participants were not representative of the wider population in the United Kingdom, the degree of concordance with published studies from outside the United Kingdom increases the credibility of the findings. Quality assurance initiatives need to ensure that they act on information such as this on users’ priorities. Further research is needed to test out the findings in other settings in the United Kingdom, to build on the findings about different participants’ views and to identify similarities and variations between countries.

Section snippets

What is already known about the topic?

  • Health professionals and service managers often determine what issues are important to ensuring good quality care for those who are coming to the end of their lives.

  • There is a dearth of United Kingdom based literature on what is important to measure at the end of life from a users perspective.

What this study adds

  • United Kingdom focus to the debate about what is important to measure at the end of life.

  • Co-ordination and continuity of services is an important issue in United Kingdom end-of-life care.

Aims

In this study we, therefore, aim to investigate what is important to measure in the last months and weeks of life, from the perspectives of patients, bereaved relatives and health professionals in the UK.

Method

Data was collected using an amended nominal group technique. The nominal group technique utilises a highly structured group format, which, unlike a usual focus group, deliberately aims to limit the interplay of the researcher in the generation of ideas, clarification of issues and setting of

Themes

Fourteen themes emerged from the data generated in the nominal groups. These themes and their components are shown in Table 2.

Ratings

The themed statements receiving the highest ratings in each group are shown in Table 3. The range, median and total ratings for highest themed statement per group are provided.

Three groups rated ‘symptom management’ themed statements most highly, as did three groups for ‘quality of life’ and ‘relationships’ themed statements. One group rated ‘preparation’ most highly,

Discussion

In our study we successfully used a modified form of the nominal group technique to ascertain the views of service users and health professionals about what is important to people in the last weeks and months of life. Most of the seven themes that emerged as most important in our study were supported in the existing literature: symptom management (e.g. Emanuel and Emanuel, 1998; Steinhauser et al., 2000; Singer et al., 1999; Payne et al., 1996); preparation (e.g. Wilkes, 1993; McNamara et al.,

Conclusions

Despite the limitations in this setting of the nominal group technique, we have been successful in identifying aspects of end of life care that is important to patients, families and health professionals in the UK. Our samples were not intended to be representative of the wider population in the UK, and this limits the conclusions that can be drawn. However, the degree of concordance between our findings and those of previous studies in a range of Western countries suggest that the items we

Acknowledgements

Thanks are due to the patients, bereaved relatives and professionals who participated in the amended nominal groups and to our colleagues who contributed to the work reported here, in particular, Jayne Chidgey, Uta Drescher and Floss Chittenden. We are indebted to our Project Advisory Group who supported and advised us throughout the study and to The Community Fund who funded this research through a grant to St Christopher's Hospice with whom we worked in partnership.

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