Background In long-term neurological conditions, location of death is poorly understood but is seen as a marker of quality of dying.
Objective To examine individual, illness and environmental factors on place of death among people with multiple sclerosis (MS) and Parkinson’s disease (PD) in isolation or in combination and compare them with people without either condition.
Methods Retrospective, observational, comparative cohort study of 582 people with MS, 579 people with PD and 95 controls from UK Multiple Sclerosis and Parkinson’s Disease Tissue Bank. A subset of people with MS and PD were selected for analysis of individual clinical encounters 2 years before death and further subset of all groups for analysis of impact of advance care planning (ACP) and recognition of dying.
Results People with MS died more often (50.8%) in hospital than those with PD (35.3%). Examining individual clinical encounters over 2 years (4931 encounters) identified increased contact with services 12 months before death (F(1, 58)=69.71, p<0.0001) but was not associated with non-hospital deaths (F(1, 58)=1.001, p=0.321). The presence of ACPs and recognition of dying were high among people with MS and PD and both associated with a non-hospital death. ACPs were more likely to prevent hospital deaths when initiated by general practitioners (GPs) compared with other professional groups (χ2=68.77, p=0.0007).
Conclusions For people with MS and PD, ACPs contribute to reducing dying in hospital. ACPs appear to be most effective when facilitated by GPs underlining the importance of primary care involvement in delivering holistic care at the end of life.
- terminal care
- clinical decisions
Data availability statement
Data generated by this research that supports this article will be be made openly and publicly available upon request.
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Contributors All authors made substantial contributions to the conception and design of the work. EN and RN facilitated the acquisition of data. MH led the analysis of data. JK and RN drafted the paper. All authors read, revised and approved the final version of the manuscript.
Funding The UK MS Society and Parkinson’s UK jointly funded the UK MS and PD Tissue Bank at Imperial College.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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