Access and Attitudes Toward Palliative Care Among Movement Disorders Clinicians

Abstract

Background Neuropalliative care is an emerging field for those with neurodegenerative illnesses, but access to neuropalliative care remains limited. Objective We sought to determine Movement Disorder Society (MDS) members' attitudes and access to palliative care. Methods A quantitative and qualitative survey instrument was developed by the MDS Palliative Care Task Force and e‐mailed to all members for completion. Descriptive statistics and qualitative analysis were triangulated. Results Of 6442 members contacted, 652 completed the survey. Completed surveys indicating country of the respondent overwhelmingly represented middle‐ and high‐income countries. Government‐funded homecare was available to 54% of respondents based on patient need, 25% limited access, and 21% during hospitalization or an acute defined event. Eighty‐nine percent worked in multidisciplinary teams. The majority endorsed trigger‐based referrals to palliative care (75.5%), while 24.5% indicated any time after diagnosis was appropriate. Although 66% referred patients to palliative care, 34% did not refer patients. Barriers were identified by 68% of respondents, the most significant being available workforce, financial support for palliative care, and perceived knowledge of palliative care physicians specific to movement disorders. Of 499 respondents indicating their training in palliative care or desire to learn these skills, 55% indicated a desire to gain more skills. Conclusions The majority of MDS member respondents endorsed a role for palliative care in movement disorders. Many members have palliative training or collaborate with palliative care physicians. Although significant barriers exist to access palliative care, the desire to gain more skills and education on palliative care is an opportunity for professional development within the MDS. © 2021 International Parkinson and Movement Disorder Society

Personalized Care in Late-Stage Parkinson’s Disease: Challenges and Opportunities

“…In most of the world, PD outpatient care is currently fragmented, institution-based, and shows insufficient multispecialty collaboration between health care providers, with unmet care needs in this population [ 43 ]. Despite some attempts with clinical trials embracing a home care delivery model instead of institutionalized care, LSPD patients experience problems in coordination and continuity of care as the progressive loss of mobility, and cognitive decline limit their ability to physically reach expert care [ 44 ].…”

“…In LSPD, the adoption of a palliative care symptom-oriented paradigm could be considered, especially if delivered at home, with potential benefits in terms of reduced caregiver burden and improvement in QoL. Although traditionally associated with oncological illnesses, palliative care has been recently applied to chronic diseases beyond end-of-life care [ 43 ]. In fact, it is advocated for this approach to begin earlier in neurodegenerative disorders, where a cure is not possible, and functional decline is complicated by unpredictable comorbidities and frailties.…”

Parkinson's disease and Covid-19: Is there an impact of ethnicity and the need for palliative care

“…PC is applicable early in the course of PD; its early introduction has been proven a powerful tool with profound benefits on QoL (including cognitive, social, emotional and spiritual aspects), which may enhance the overall satisfaction of PwP with care, reduce their hospital admission rates and offer support to caregiver ( Di Luca et al, 2020 ). Furthermore, in PwP and patients with other movement disorders, PC may help to address non-traditional sources of suffering, including, for example, loss of identity, existential distress, and spiritual suffering ( Miyasaki et al, 2021 ) ( Fig. 1 ).…”

“…In fact, all clinicians are providing certain degree of PC when seeking to enhance quality of life and to optimize their patients’ functioning ( Miyasaki & Robinson, 2020 ; Quill & Abernethy, 2013 ). Indeed, in a recent survey of the International Parkinson and Movement Disorders Society (MDS) membership, the majority of the participants agreed that neurologists should be involved in the care of PwP throughout the course of their illness and that healthcare professionals working with patients with movement disorders should adopt generalist PC approaches in their daily practice, while also expressing their will to learn more about PC ( Miyasaki et al, 2021 ). At the same time, substantial systemic and individual barriers to PC for PwP were reported, including PC workforce shortages, traditional oncology focus of PC, patients’ beliefs, PC physician attitudes and the lack of the role clarity, as well as clinicians’ own discomfort with PC.…”

“…At the same time, substantial systemic and individual barriers to PC for PwP were reported, including PC workforce shortages, traditional oncology focus of PC, patients’ beliefs, PC physician attitudes and the lack of the role clarity, as well as clinicians’ own discomfort with PC. In low income countries, limited financial support and infrastructure may pose additional challenges ( Miyasaki et al, 2021 ).…”