Survey of Health Care Workers Suggests Unmet Palliative Care Needs in Parkinson's Disease

Abstract

The aim of this study was to investigate the knowledge, attitudes, and previous training of Irish health care workers (HCWs) in palliative care in end-stage Parkinson's disease (PD). A survey was distributed to HCWs, including neurologists, geriatricians, general practitioners, nurses, and allied health professionals, in acute and community settings in the Republic of Ireland. Three-hundred and six surveys were returned (32% average response rate). Most HCWs (90%) believed that people with PD have palliative care needs; however, 76% of HCWs also said that these needs are "never" or only "sometimes" met. These unmet needs are reflected in relatively few people with PD being referred to specialist palliative care; 48% of hospital consultants had referred no patients in the previous 6 months, and just 7% had referred more than 10. Just 8% of the HCWs surveyed reported having any training on the palliative care aspects of PD, and 97% expressed an interest in receiving further education. Respondents wanted all topics pertinent to palliative care in PD covered, and many felt that they also needed further information on PD in general. People with PD are seen to have palliative care needs; however, the findings suggest that these needs are not being met. There is a discrepancy between best practice recommendations for palliative care in PD and the beliefs and practices of HCWs. Further education in palliative care in PD is needed to ensure better quality of care for people with PD.

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

“…In this study, many healthcare professionals report different views on palliative care and often equated palliative care with terminal care. Results from the individual and focus group interviews shows that professionals working in PD were not familiar with the WHO definition and more recent insights on palliative care, which was also found in earlier qualitative studies [16][17][18]51]. Discussions about what essential elements are in palliative care for people with PD resulted in several specifications, such as 'discussions about future care' and 'care goals focusing on comfort'.…”

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

“…To develop the interview guide, we first conducted a literature review in PubMed in 2016 using search terms like ‘palliative care’, ‘Parkinson’s disease’ and ‘end of life care’. Our aim was to find relevant studies on persons with PD and (defining) palliative care including expert opinions, case studies and empirical studies [9, 12, 15–18, 26–37]. Furthermore, as indicated earlier, we sent out a questionnaire to gain more information on professionals’ knowledge and competence in palliative care.…”

“…Health care professionals’ experiences with and perceptions of palliative care in PD are known from a few studies [15–18]. It appears that many professionals lack the necessary competences for palliative care, feel inexperienced and want more education in this field [15–17].…”

Palliative care for patients with Parkinson’s disease: study protocol for a mixed methods study

“…Four studies reported professionals’ experiences with (the concept of) palliative care and PD [ 25 – 28 ]. Waldron et al showed that professionals often misconceive the putative value of rehabilitation in the palliative care phase.…”