Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals

Abstract

Background Parkinson’s disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands. Methods This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups ( n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: “In the past 2 years, did you treat or support a person with PD who subsequently died?” The data were analyzed by thematic text analysis. Results Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons’ needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity. Conclusions Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons’ preferences. Additional training can help to become more knowledgeable and confident. Electronic supplementary material The online version of this article (10.1186/s12904-019-0441-6) contains supplementary material, which is available to authorized users.

RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

“…We further developed elements that could be helpful in implementing ACP in practice. As earlier studies [5,14,15,55] describe difficulties in role and responsibility on this topic in PD, we found consensus on statements that give direction on how, what and by whom ACP could be performed. Our findings suggest that healthcare professionals of all disciplines do have a role or are entitled to introduce ACP.…”

“…Although the potential need for palliative care is increasingly acknowledged, still little is known about effective and useful components in PD patients [4,5,14]. There is no clear conceptualization of palliative care in PD and as a result, many healthcare professionals experience difficulties in providing palliative care [15][16][17][18]. A typical general misconception is that palliative care is associated with cancer, terminal phase care or dying.…”

“…A typical general misconception is that palliative care is associated with cancer, terminal phase care or dying. Furthermore, healthcare professionals find it difficult how and when to start with palliative care or when to refer to specialist palliative care services [15][16][17][18]. The difficulty of identifying palliative care needs is likely explained by the slowly progressive nature of PD, with often no clear defining moment for starting with palliative care (unlike e.g.…”

Experiences of advance care planning in Parkinson's disease and atypical parkinsonian disorders: a mixed methods systematic review

“…Figure 1 displays the result of the searches. An additional two publications were identified through forward and backward citation tracking [5,23]. They were published after the date of our electronic search and included after screening for relevance.…”

“…Despite studies exploring ACP in neurodegenerative conditions [5][6][7], international working groups concluded that there is a lack of research in ACP [8,9]. However, ACP should be considered in PD and atypical parkinsonian disorders, as these progressive conditions lead to increasing disability due to physical and neurobehavioural symptoms with advancing disease, although disease progression is variable [9].…”