在宅脳神経内科医が感じるParkinson病のadvance care planningの必要性

抄録

Parkinson disease (PD) patients eligible for home care are categorized into the late and end–stage, experiencing motor symptoms resistant to treatment, prominent non–motor symptoms. In home care, physicians have the opportunity to visit patients at their homes, gaining insights into their daily lives and directly meeting caregivers. This enables tailored explanations considering the patient's and family's cognitive functions, values, life perspectives, and economic circumstances. However, it's important to note that PD patients receiving home care often suffer from cognitive decline and executive dysfunction, making it challenging to assess their capacity for decision–making accurately. Additionally, the private and enclosed nature of home visits raises the risk of potential legal liabilities for physicians. Thus, it is crucial not only to utilize decision support guides but also to involve multi–disciplinary in the decision–making process.

It has been reported that ACP is rarely carried out in PD, even as symptoms progress, cognitive function declines, or the disease reaches its end–stage. The lack of a direct link between PD diagnosis and mortality, coupled with the variability in disease progression, are contributing to the delayed implementation of ACP.

PD lacks a curative therapy, making it suitable for palliative care from the time of diagnosis. In contrast to conditions like cancer, transitioning to home care itself does not equate to a shift to palliative care. With the expansion of options like Device Aided Therapy (DAT), even home–based patients may aspire to DAT. But this could potentially become life–prolonging care in the end–stage. Hence, clear policies regarding the introduction and discontinuation of DAT in ACP are imperative.

Furthermore, some home–based PD patients may not want to spend their final days at home. Simultaneously, some reports suggest that ACP may facilitate the possibility of patients spending their final moments at home, emphasizing the importance of proactive ACP discussions.