For Movement Disorders, Palliative Care Remains Challenging

Neuropalliative care is an emerging field for those with conditions such as Parkinson disease, multiple system atrophy, progressive supranuclear palsy, corticobasal syndrome, and other diseases, but access to care remains limited, according to a recent survey.

A recent global study of movement disorder specialists examining their attitudes towards and availability of palliative care found that most had a positive view of the service and wished to have more training in the topic, but respondents also noted barriers to care.

The survey was conducted in 2017 by the Palliative Care Task Force of the International Parkinson and Movement Disorder Society.

Previously, palliative care in Parkinson disease focused on medication management and cognitive decline; more recent approaches focus on nontraditional symptoms, such as pain and breathlessness, and prioritize patient and family preferences in treatment plans, the authors noted.

A quantitative and qualitative email survey was sent to 6442 members; 652 completed the survey. Results were compiled through descriptive statistics and qualitative analysis. Respondents were allowed to provide answers in free text format to questions about their care teams, availability of palliative care in hospitals, timing of palliative care referrals, initiation of end-of-life care conversations, when to seek a referral, and other topics.

Most respondents were neurologists, followed by nurse, nurse practitioner or other. Most were from high-income countries, followed by middle- and low-income countries. Most had access to multidisciplinary care teams.

Government-funded home care or community nursing services were available to 68% of respondents. A little more than a third of respondents indicated patients required palliative care or hospice admission to access community nursing or home care services.

For patients accessing home care or community nursing without requiring in-patient admission, 54% had unlimited duration based on need, 25% had limited duration, and 21% had brief access related to a hospitalization or similar acute event.

Palliative care was available only in hospital admissions for 28% of respondents, while 72% had access to ambulatory or outpatient palliative care.

Other findings showed:

  • Most respondents endorsed trigger-based referrals to palliative care (75.5%), while 24.5% indicated any time after diagnosis was appropriate.
  • 73% reported palliative care accepted patients with movement disorders, but 27% did not.
  • Although 66% of respondents referred patients to palliative care, 34% did not.

In addition, nearly 70% of respondents cited barriers to palliative care, which included:

  1. An inadequate palliative care workforce
  2. A focus on oncology palliative care
  3. Restrictive referral criteria
  4. Palliative care physicians unfamiliar with neurology
  5. Provider discomfort with starting a palliative care discussion
  6. Belief among palliative care providers that neurology patients would not benefit

When asked about the extent of their own palliative care training, of 499 respondents, 12% reported extra training in palliative care, 22% had a palliative care physician or health professional on their team, and 20% offered palliative care in their practice; 55.5% said they did not currently provide palliative care but wanted to learn more.

Given the results, the authors wrote that palliative care education is a professional development opportunity for the Movement Disorder Society.

Reference

Miyasaki JM, Lim SY, Chauduri KR, et al. Access and attitudes toward palliative care among movement disorders clinicians. Mov Disord. Published Online August 25, 2021. doi:10.1002/mds.28773