End of life care of hospitalized patients with Parkinson disease: a retrospective analysis and brief review

Bhansali, Sakhi; Assaedi, Ekhlas; Yu, Jeryl Ritzi T.; Mandava, Nymisha; Sonneborn, Claire; Hogue, Olivia; Walter, Benjamin L.; Samala, Renato V.; Margolius, Adam

doi:10.3389/fnagi.2023.1265156

Cited by 3 publications

References 79 publications

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Transition to end-of-life care in patients with neurological diseases in an acute hospital ward

Jonsdottir,

Haraldsdottir,

Vilhjalmsson

et al. 2024

BMC Neurol

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Background Transitioning to end-of-life care and thereby changing the focus of treatment directives from life-sustaining treatment to comfort care is important for neurological patients in advanced stages. Late transition to end-of-life care for neurological patients has been described previously. Objective To investigate whether previous treatment directives, primary medical diagnoses, and demographic factors predict the transition to end-of-life care and time to eventual death in patients with neurological diseases in an acute hospital setting. Method All consecutive health records of patients diagnosed with stroke, amyotrophic lateral sclerosis (ALS), and Parkinson’s disease or other extrapyramidal diseases (PDoed), who died in an acute neurological ward between January 2011 and August 2020 were retrieved retrospectively. Descriptive statistics and multivariate Cox regression were used to examine the timing of treatment directives and death in relation to medical diagnosis, age, gender, and marital status. Results A total of 271 records were involved in the analysis. Patients in all diagnostic categories had a treatment directive for end-of-life care, with patients with haemorrhagic stroke having the highest (92%) and patients with PDoed the lowest (73%) proportion. Cox regression identified that the likelihood of end-of-life care decision-making was related to advancing age (HR = 1.02, 95% CI: 1.007–1.039, P = 0.005), ischaemic stroke (HR = 1.64, 95% CI: 1.034–2.618, P = 0.036) and haemorrhagic stroke (HR = 2.04, 95% CI: 1.219–3.423, P = 0.007) diagnoses. End-of-life care decision occurred from four to twenty-two days after hospital admission. The time from end-of-life care decision to death was a median of two days. Treatment directives, demographic factors, and diagnostic categories did not increase the likelihood of death following an end-of-life care decision. Conclusions Results show not only that neurological patients transit late to end-of-life care but that the timeframe of the decision differs between patients with acute neurological diseases and those with progressive neurological diseases, highlighting the particular significance of the short timeframe of patients with the progressive neurological diseases ALS and PDoed. Different trajectories of patients with neurological diseases at end-of-life should be further explored and clinical guidelines expanded to embrace the high diversity in neurological patients.

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Transition to end-of-life care in patients with neurological diseases in an acute hospital ward

Jonsdottir,

Haraldsdottir,

Vilhjalmsson

et al. 2024

BMC Neurol

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Health care utilization at the end of life in Parkinson’s disease: a population-based register study

Leavy,

Åkesson,

Lökk

et al. 2024

BMC Palliat Care

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Background Knowledge of health care utilization at the end of life in Parkinson’s disease (PD) is sparse. This study aims to investigate end of life health care utilization, characterized by emergency room (ER) visits, receipt of specialized palliative care (SPC), and acute hospital deaths in a Swedish population-based PD cohort. Methods We conducted a retrospective cohort study on deceased patients (≥ 18 years) with a PD diagnosis during their last year of life (n = 922), based on health care-provider data from Region Stockholm´s data warehouse, for the study period 2015–2021. Univariable and multivariable logistic regression analyses tested associations and adjusted Odds ratios (aORs) were calculated. Results During the last month of life, approx. half of the cohort had emergency room (ER) visits and risk of frailty (measured by Hospital Frailty Risk Score) significantly predicted these visits (aOR, 3.90 (2.75–5.55)). In total, 120 people (13%) received SPC during their last three months of life, which positively associated with risk for frailty, (aOR, 2.65 (1.43–4.94, p = 0.002). In total, 284 people (31%) died in acute hospital settings. Among community-dwellers, male gender and frailty were strongly associated with acute hospital deaths (aOR, 1.90 (1.15–3.13, p = 0.01) and 3.70 (1.96–6.98, p < 0.0001)). Conclusions Rates of ER visits at end of life and hospital deaths were relatively high in this population-based cohort. Considering a high disease burden, referral to SPC at end of life was relatively low. Sex-specific disparities in health care utilization are apparent. Identifying people with high risk for frailty could assist the planning of optimal end-of-life care for people with PD.

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Health care utilization at the end of life in Parkinson´s disease: A population-based register study

Leavy,

Åkesson,

Lökk

et al. 2024

Preprint

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Background: Knowledge of healthcare utilization at the end of life in Parkinson’s disease (PD) is sparse. This study aims to investigate end of life health care utilization, characterized by emergency room (ER) visits, receipt of specialized palliative care (SPC), and place of death in a population-based PD cohort. Methods: We conducted a retrospective cohort study on deceased patients (≥18 years) with a PD diagnosis during their last year of life (n=922), based on healthcare-provider data from Region Stockholm´s data warehouse, for the study period 2015-2021. Univariable and multivariable logistic regression analyses tested associations and adjusted Odds ratios (aORs) were calculated. Results: During the last month of life, approx. half of the cohort had emergency room (ER) visits and risk of frailty (measured by Hospital Frailty Risk Score) significantly predicted these visits (aOR, 3.90 (2.75-5.55)). In total, 120 people (13%) received SPC during their last three months of life, which positively associated with risk for frailty, (aOR); 2.65 (1.43-4.94, p=0.002). In total, 284 people (31%) died in acute hospital settings. Among community-dwellers, male gender and frailty were strongly associated with acute hospital deaths (aOR, 1.90 (1.15-3.13, p=0.01) and 3.70 (1.96-6.98, p<0.0001)). Conclusions: Rates of ER visits at end of life and hospital deaths were relatively high in this population-based cohort. Considering a high disease burden, referral to SPC at end of life was relatively low. Sex-specific disparities in healthcare utilization are apparent. Identifying people with high risk for frailty could assist the planning of optimal end-of-life care for people with PD.

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End of life care of hospitalized patients with Parkinson disease: a retrospective analysis and brief review

Cited by 3 publications

References 79 publications

Transition to end-of-life care in patients with neurological diseases in an acute hospital ward

Transition to end-of-life care in patients with neurological diseases in an acute hospital ward

Health care utilization at the end of life in Parkinson’s disease: a population-based register study

Health care utilization at the end of life in Parkinson´s disease: A population-based register study

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