Palliative Care for Movement Disorders

While care for patients with movement disorders has traditionally focused on motor symptoms, there is increasing evidence that optimal care for these disorders is more complex both in terms of the spectrum of symptoms experienced by patients (e.g., pain, depression) and the multidimensional needs of patients and their families. Palliative care is an approach to the care of patients and families affected by serious illnesses that seeks to relieve suffering by addressing complex medical symptoms, psychosocial issues, spiritual well-being, and goals of care. While traditionally associated with cancer and hospice, more recent work in palliative care has focused on integrating a palliative care approach from the time of diagnosis for patients with chronic illnesses, including movement disorders.

Studies of patients with movement disorders and their family caregivers suggest that these patients have significant unmet needs under current models of care, including underrecognition and treatment of non-motor symptoms, inadequate psychosocial support, and suboptimal end-of-life care. We describe how a palliative care approach can empower clinicians, patients, and families to reduce common sources of suffering and optimize quality of life. This field recognizes the importance of primary palliative care (palliative skills useful for any clinician caring for persons caring for serious illness) as a foundation of the palliative care approach and complementary to specialist palliative care. In this article, we will focus on primary palliative care skills for movement disorder specialists including providing a diagnosis and prognosis with compassion, discussing goals of care, complex symptom management, caregiver support, spiritual and emotional well-being, and referral to hospice and specialist palliative care. A palliative care approach complements other efforts in movement disorder care. Research is needed to evaluate and develop therapeutic interventions and models of care applying a palliative care approach.