Far from being the end of the road: taking a closer look at neuropalliative care in Parkinson's disease

远非终点:深入了解帕金森病神经姑息治疗

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Abstract

Parkinson's disease (PD) is now recognized as a multisystem, heterogeneous neurodegenerative disease with fluctuating trajectories and complex symptom profiles. Despite therapeutic advances, many patients (particularly women and those in late stages) and their caregivers face substantial unmet needs across physical, psychological, social, and spiritual domains, which highlight the need for a more integrative care model. Palliative care, defined as holistic, person-centered care for individuals with life-limiting illnesses, is increasingly recognized as particularly relevant in PD, from early to terminal stages. However, its implementation in neurology remains limited, notably due to persistent misconceptions, and delayed or absent referrals. This narrative review therefore aims to equip PD care teams with a clearer understanding of palliative care principles and their applicability to PD, by synthesizing emerging evidence in neuropalliative care, and providing practical recommendations for integration into routine neurological practice. Building on the specificities of quality of care for chronic conditions, optimal neuropalliative care in PD involves regular (re)assessment of symptoms and priorities, effective management of the chronic-palliative interface, good communication, continuity of care (including neurological care until the end of life), and a multidisciplinary network of professionals working both in the community and in specialized clinics, while leaving room for the involvement of caregivers. Far from being "the end of the road", neuropalliative care is a strategic and compassionate response to the evolving complexity of PD, which ultimately enhances quality of life, supports families, and reinforces the neurologist's pivotal role in longitudinal, person-centered care.

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