Recent research from the United Kingdom sought to understand more about factors that may impact the location of death for patients with Parkinson disease (PD) and multiple sclerosis (MS).
The use of advance care planning (ACP) documents are used to help patients define how they want to be treated and cared for at the end of life. Most deaths take place in hospitals or other institutions, even though that is generally less favored by many individuals. A recent UK study examined the effect of multiple factors on location of death for those with 2 neurological disorders, Parkinson disease (PD) and multiple sclerosis (MS).
In the United Kingdom, nearly 56% of patients with MS and up to 43% of patients with PD die in a hospital. Writing in BMJ Supportive & Palliative Care, the authors said that place of death in neurological conditions “is poorly understood but is seen as a marker of quality of dying.”
Certain factors are known to affect the likelihood of a home-based death. Individual factors, comprising such things as the existence of an ACP, also include demographic variables and the patient’s personal resources to cope with illness. Environmental factors include the health care that is available, social support networks, and other determinants. Clinical factors relate specifically to the illness, such as trajectory and levels or progressive disability.
This retrospective observational, comparative cohort study examined those individual, illness, and environmental factors, in isolation or in combination, in 1256 deaths of patients with PD and MS. These included 582 people with MS, 579 people with PD, and 95 controls from the UK Multiple Sclerosis and Parkinson’s Disease Tissue Bank, a national collection of central nervous system tissue samples donated after death by individuals with MS, PD and related neuroinflammatory and neurodegenerative conditions.
The study further examined a subset of patients with both diseases who were selected for analysis of individual clinical encounters 2 years before death, as well as another subset of all groups for an analysis of the impact of having an ACP and a recognition of dying.
For 30 patients with MS and 30 with PD, there were 4931 clinical encounters in the 2 years before death. For both diseases, health care usage increased in the 12 months before death (2-way repeated measures ANOVA, F[1, 58] = 69.71, P <.0001). There was no association with nonhospital deaths and no overall difference between the 2 conditions.
Because the researchers were unable to identify individual-level factors that influenced whether death took place in a hospital or outside of it, they included an analysis that incorporated having an ACP and recognition of dying. Patients with PD were more likely to have an ACP and to recognize the last stages of life than those with MS or with controls.
In addition, ACPs were more likely to prevent dying in a hospital when put in place by a general practitioner, as compared with other health care providers.
Where a person dies “has both societal and economic Implications,” the authors noted. Home deaths are generally considered to be a marker of quality end-of-life care. Their research shows that primary care is effective in recognizing “the final phase of a person’s life which counters some claims that prognosis is challenging and imprecise, particularly for those with non-malignant conditions,” the authors concluded.
Nicolas R, Nicolas E, Hannides M, Gautam V, Friede T, Koffman J. Influence of individual, illness and environmental factors on place of death among people with neurodegenerative diseases: a retrospective, observational, comparative cohort study. BMJ Support Palliat Care. Published online September 6, 2021. doi:10.1136/ bmjspcare-2021-003105