Challenges to Ethically Managing Parkinson Disease

Abstract

This study investigated the current ethical issues in relation to recognizing and managing Parkinson disease (PD) from the patient’s perspective.Methods:Twelve patients living with PD who were from the medical school’s Patients as Educators program were recruited. Semistructured interviews were conducted to record patient experiences in order to identify potential ethical issues in relation to recognizing and managing PD. Thematic analysis was applied to the interview transcripts.Results:Four key themes emerged from the interviews. These were information giving, coping, identity, and future medical treatment. These data indicate variable experiences in relation to communication between patient and health-care professional, better support for both planning end-of-life decisions and in coping with the disease’s impacts on their identity. Patients with PD also struggle with access to support services and support for main carer.Implications:To ensure ethical practice in supporting patients with PD, these emerging themes need further investigation; and management guidelines relevant to PD must be informed by research in this area to ensure ethical care of patients with PD, their carers, and families.

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

“…Other studies also reported short consultation times (even 5-10 minutes in extreme cases [65]) which did not allow time for a detailed explanation of the diagnosis [63,64,66]. On the other hand, some patients were satisfied with the information they were provided [65] and it should be noted that being given too much information was also at times considered problematic [67].…”

“…The diagnosis was often communicated abruptly, in a casual way, without any sensitivity or compassion [63,66,67].…”

Social role functioning in Parkinson's disease: A mixed‐methods systematic review

“…20,21,30,35,[74][75][76][77][78] Impaired couple relationships were related to facial masking, higher Hoehn and Yahr stage, lack of coping responses (ie, spouse "benefit finding"), and sexual dysfunction. Poor general social functioning was associated with facial masking, communication problems, and cognitive impairment.…”

“…Poor general social functioning was associated with facial masking, communication problems, and cognitive impairment. 20,21,30,35,[74][75][76][77][78] Impaired couple relationships were related to facial masking, higher Hoehn and Yahr stage, lack of coping responses (ie, spouse "benefit finding"), and sexual dysfunction. 20,40,79 Earlier departure from the workforce was associated with female sex, older age, longer disease duration, anxiety, ADL performance, depression, and cognitive impairment.…”