Written by Janis M. Miyasaki, MD, MEd, FRCPC, FAAN
Dr. Balfour Balmont, a surgeon in Montreal, Canada, coined the term palliative care, meaning “to relieve symptoms” for those with prostate cancer. These days, palliative care is widely used in reference to care that encompasses a holistic, team-based approach that shifts the focus of care from an individual patient to the patient and their family together.
At its best, palliative care “provides relief from pain and other distressing symptoms, affirms life, and regards dying as a normal process; intends to neither hasten nor postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help the family cope during the patient’s illness and their own bereavement; uses a team- based approach; will enhance quality of life; and is applicable early in the course of illness, including when life-sustaining therapies are used.”
The first dedicated palliative care clinic for Parkinson’s was established in 2007 at the University of Toronto, Canada. Using a multidisciplinary approach (including a pastoral counselor, palliative care physician, movement disorder specialist, nurse, and care coordinator), the clinic demonstrated that people with Parkinson’s had a symptom burden like those with metastatic cancer and responded similarly favorably to interventions. The most improved symptoms as measured by this study were constipation, dysphagia (difficulty swallowing), anxiety, pain, and drowsiness.
For people living with Parkinson’s, there are many moments when palliative care can be beneficial. If palliative care resources were readily available, people with Parkinson’s could access them at the time of diagnosis to address existential suffering; that is, to answer questions such as, “Why has this happened to me? How can I be hopeful? How can I go forward from this diagnosis?”
Palliative care is provided throughout an illness or chronic condition. A study of palliative care for those with metastatic cancer found that those enrolled in palliative care survived longer than those who weren’t; thus, it’s natural for those with a complex, chronic disease, such as Parkinson’s, to be referred to palliative care. Various stages have been proposed for referral, including unresolved symptoms, care partner burnout, need for coordinated care, existential suffering, and complex neuropsychiatric complications of illness, such as psychosis (hallucinations or delusions) or severe anxiety.
A well-developed palliative care program should consist of a multidisciplinary team. Depending on the clinic, you may be seen by all providers at once or by all providers rotating through the clinic room. The latter approach is more efficient for the clinic staff, even though this can result in a long day for you and can generate many individual lists of follow-up tasks.
In addition, the clinic should offer services to your family members since supporting families during the long journey of Parkinson’s is crucial. Providing families with options to approach challenging situations is part of the team’s role. Helping people with Parkinson’s and their families build a web of support in the community should be a palliative care team’s role, as well. Your palliative care team should be familiar with local resources, their suitability, and cost to help you navigate the complex healthcare system. Although this may be the first time you and your family are facing this condition, the clinic faces this scenario daily, and they are well prepared to guide you.
Palliative care teams should also offer support and care for people who are dying. Particularly in the US, ambulatory palliative care teams coordinate with local hospices for those ready to transition to hospice care.
Palliative care for Parkinson’s is expanding in North America and throughout the world. Dedicated teams recognize the burden that Parkinson’s can be for people living with it and their care partners and provide holistic and practical care throughout the long journey of living with Parkinson’s.
Many families living with Parkinson’s share that the palliative care clinic is “THE most care” they have ever received.
About Janis M. Miyasaki
Janis Miyasaki is a graduate of the University of Toronto, where she completed medical school, residency, and a movement disorders fellowship under Dr. Anthony Lang. She joined the University of Alberta faculty of medicine and dentistry in 2014 following 22 years at the University of Toronto. In 2015, Dr. Miyasaki became the director of the movement disorders program comprising seven neurologists and a dedicated interdisciplinary team. She has held leadership positions at the University of Toronto, the University of Alberta, the International Parkinson Disease and Movement Disorder Society, and the American Academy of Neurology. Dr. Miyasaki founded the first dedicated palliative care program for Parkinson’s and related disorders at the University of Toronto in 2007. Since then, she has published original research on this topic and is viewed as the founder of palliative care for Parkinson’s. In 2015, Dr. Miyasaki established the Complex Neurologic Symptoms Clinic at the Kaye Edmonton Clinic, University of Alberta, with Dr. Wendy Johnston, an expert in ALS. This program provides care to all neurologic patients with palliative care needs.