Advanced care planning for people with neurodegenerative diseases

25th October 2021

Most people prefer to die in their usual place of care which is typically their own home. Factors influencing location of death have been postulated to include a person’s illness, in addition to ‘individual’ and ‘environmental-related’ considerations.  Advance care planning (ACP) can be viewed as an ‘individual-oriented’ factor that can positively influence some health-related outcomes for people living with life-limiting conditions and their families. In the context of long-term neurological conditions, including multiple sclerosis (MS) and Parkinson’s disease (PD) the effect of these factors in facilitating home deaths remains unknown. Examining this issue may contribute to more homes deaths if this is preferred.

Researchers based at the Cicely Saunders Institute conducted a retrospective observational comparative cohort study of 582 people with MS, 579 people with PD and 95 controls from UK MS and PD Tissue Bank (UK MS PD TB). A subset of people with MS and PD were selected for analysis of individual clinical encounters two years before death and a further subset of all groups for analysis of the impact of advance care planning (ACP) and recognition of dying.

The researchers found that possessing an ACP significantly contributed to realising the preferred place of death, typically at home for people with MS and PD. General practitioners represented a key factor in initiating conversations on ACP with people with MS and PD and subsequently taking a role in coordinating a patient’s care together with their family. This made it possible for care to take place in the location of the patient’s preference. The take-home message from the research is that professionals working in primary care are often effective in recognising the final phase of people living with long-term neurological conditions and engaging in difficult conversations that include advance care planning to realise care preferences, including location of death.

Nicholas R, Nicholas E, Gautam V, Friede T, Koffman J. The influence of individual, illness and environmental factors on home deaths among people with neurodegenerative diseases: A retrospective, observational comparative cohort study. BMJ Supportive & Palliative Care 2021 doi: 10.1136/bmjspcare-2021-003105.