Experiences of healthcare and support for people with multimorbidity approaching the end of life

Abstract

Background:
There are increasing numbers of people living with and dying from multimorbidity – defined as the co-existence of two or more long-term conditions. Prior research has shown that people with multimorbidity experience fragmented care across a variety of healthcare settings, and have associated poorer experiences of such care, throughout their life. However, there has been limited
exploration to date of the utility and experience of healthcare use at the end of life for people with multimorbidity.

Methods:
This research explores how people with multimorbidity use and experience healthcare as they approach the end of life. This has been achieved through multiple research methodologies to address the following research objectives:

1. To collate the available evidence on how people with Advanced Multimorbidity are described within the literature, with a view to identifying gaps in knowledge and making recommendations for future research.

Scoping review methodology was used to explore how the concept Advanced Multimorbidity, or multimorbidity in people who would benefit from a palliative care approach, was described and operationalised within the literature. Searches of research databases and the Grey Literature were performed and the descriptors detailed through content analysis. Stakeholder consultations added context and ensured applicability of the results to patients, caregivers, clinicians and academics.

2. To describe the demographic and clinical characteristics of a national cohort of people with multimorbidity who died in Scotland, and to report on the associated patterns of use of healthcare services in their last year of life.

A retrospective cohort study of all people who died in Scotland between 01/01/2017 and 31/12/2021 was developed utilising linkage of routinely collected healthcare data. This allowed analysis of both unscheduled and planned, outpatient, secondary care healthcare interactions in the last year of life using descriptive analyses and binary logistic regression to explore the impact of
multimorbidity on healthcare use.

3. To explore the experiences of healthcare and support in the last year of life for people with multimorbidity and those close to them, through the perspective of bereaved caregivers.

A qualitative study utilising Interpretative Phenomenological Analysis was designed to explore the lived experiences of care and support over the last year of life for people with multimorbidity, as described by caregivers for these individuals. Participants were recruited through third sector organisations, public advisors and clinicians in primary and secondary care. Flexible, semi-structured interviews took place in participant’s choice of setting.

Results:
Collectively, these three studies highlight that people with multimorbidity utilise a variety of different healthcare services towards the end of life, at higher rates and with differing patterns than for those without multimorbidity. They often are not identified ahead as approaching the end of life, the reasons for which are likely to be multifactorial and some of which are mirrored in the confusion
around what is understood by Advanced Multimorbidity in the published literature. Caregivers have a key role in facilitating, appraising and enabling healthcare interactions. Such healthcare interactions are improved when shared decision-making with trusted healthcare professionals is implemented but often fragmentation and a lack of continuity of care can make these interactions negative experiences for people who die with multimorbidity and their caregivers.

Conclusion:
People with multimorbidity and those supporting them face a number of challenges as they are approaching the end of life. It is imperative that future research and healthcare models consider people with multimorbidity with palliative and end of life care needs as a priority, taking into account their particular needs and challenges, and ensure robust, relational, coordinated care is achieved. This is of timely importance, not least given the growing scale of this population and the negative impact that poorly coordinated care can have on them and on the system.

Date of Award	2 Dec 2026
Original language	English
Awarding Institution	University of St Andrews
Supervisor	Frances Quirk (Supervisor), Joanna Bowden (Supervisor), Linda J. Williams (Supervisor) & Sarah Mills (Supervisor)