Improving the quality of end-of-life care for Parkinson's patients

Parkinson's disease is the second most common neurodegenerative pathology, after Alzheimer's disease, and its prevalence is increasing, particularly in men. Treatments are available to improve patients' comfort and quality of life, but these do not prevent the disease from progressing, which is the definition of "palliative" care. "Health professionals tend to consider that Parkinson's disease is not fatal, notes neurologist Matthieu Béreau. However, people frequently die from its complications, particularly lung infections linked to swallowing disorders that occur at an advanced stage. We should therefore consider this disease as potentially fatal, in the very long term, and integrate the palliative approach more fully into our practices. But since patients almost never die in neurology departments, we don't realize this enough."

Little-known trajectories

From one group of patients to another, the evolution of Parkinson's disease is highly variable. Decline is often heralded by accelerated weight loss, cognitive or behavioral disorders, and motor difficulties resistant to treatment². But when a patient enters this phase, which heralds the end of life, his or her journey becomes even more complicated. It is not uncommon to observe acute episodes of decompensation which, in some cases, lead to gradual withdrawal or discontinuation of antiparkinsonian drugs. Withdrawal can lead to a resurgence of symptoms and a considerable deterioration in quality of life, as well as increased difficulties in ambulation and communication. This phase is also exhausting for the caregiver. "The end-of-life trajectories of Parkinson's patients are poorly understood. We don't know where they die, how their treatments are managed, how their caregivers are supported... There are no recommendations on practices," adds Matthieu Bereau.

The SPARK project (Soins Palliatifs, fin de vie et maladie de PARKinson), jointly led by Manon Auffret, Matthieu Béreau and Marc Vérin, and whose launch was supported by the Plateforme nationale pour la recherche sur la fin de vie², aims to alleviate this problem. Its aim is to federate a multi-professional network involving clinicians and researchers whose work focuses on the quality of patients' end of life.

First of all, using epidemiology and health data, the aim is to find out the history of Parkinson's patients in the 5 years preceding their death, but also to analyze precisely the care pathways of those who died in Ehpad and in hospital. This will enable us to develop a predictive model for death, and gain a better understanding of the care pathways involved, so that we can take concrete action.
Observational studies will also be carried out to analyze the management of pharmacological treatments and assess their possible harmful consequences, the idea being, ultimately, to spare unnecessary treatments.

Advance care planning

The next step is to seek to implement "neuropalliative care". This concept involves providing active care aimed at maintaining quality of life, drawing on a variety of disciplines. This type of approach could be implemented from diagnosis, right through to the terminal phase of the disease, in a logic of advance care planning³. Early implementation of such an approach is all the more important as Parkinson's disease can impair decision-making. As part of the SPARK project, ethical reflection will be carried out on how to proceed, taking into account the particularities of patients, the experiences of caregivers and their expectations.

Once completed, this project should lead to practical recommendations and concrete actions to ensure that Parkinson's patients enjoy a better quality of life, right to the end.

The project leaders:

• Marc VERIN
  Neurologist, Director of Research - EA 4712 Comportement et Noyaux Gris Centraux
  CHU de Rennes and Université Rennes 1
  marc.verin@chu-rennes.fr
• Manon AUFFRET
  Pharmacist, researcher - EA 4712 Comportement et Noyaux Gris Centraux
  (Behavior and Central Gray Nuclei) University of Rennes 1
  manon.auffret@univ-rennes1.fr
• Matthieu BEREAU
  Neurologist, MCU-PH - Laboratory for Integrative Research in Neuroscience and Cognitive Psychology (LINC)
  CHU Besançon, Centre Expert Parkinson (CEP)
  mbereau@chu-besancon.fr

1. Such as swallowing disorders, for example
2. Consult the AMI 2021 page
3. The term advance care planning, or projet de soins anticipés, refers to a consultation between the patient, his or her loved ones and caregivers to jointly define the care to be implemented or not, respecting the patient's values and priorities.

_{Published 10/17/2022
Image credit: Gordon Jonson (Pixabays)}