Before posting a blog that challenges a couple of Michael J. Fox’s statements about Parkinson’s disease I’d like to say that I’m a huge fan of Michael and his work for Parkinson’s. My first major grant came from his foundation and I have a poster of his movie The Secret of My Success hanging in my office. However, there were a couple of statements he made recently that I felt deserved a response.
Recently, Michael J. Fox appeared on CBS’ Sunday Morning with Jane Pauley and made this statement during the interview:
“It’s getting harder. It’s getting tougher. Every day gets tougher, but that’s the way it is. Who do I see about that?”
My response: palliative care.
I am a neurologist with subspecialty training in Parkinson’s disease. When I started my practice 15 years ago I would frequently see patients like Michael where I would feel helpless and admit I had nothing more to offer. Getting additional training in palliative care completely changed my practice.(1)
Palliative care focuses on improving the quality of life of people living with serious illness and their families. It does so by recognizing that an illness like Parkinson’s causes multiple dimensions of suffering that are not typically addressed in standard medical care. Common examples of this suffering include uncertainty about the future, physical pain, depression, guilt, caregiver distress, and demoralization, not to mention the challenges of coordinating healthcare and home care when needed. (2)
Fox’s enduring focus on hope and gratitude is important and is a key component of the palliative approach. In my clinic, I frequently say that this is a place where patients and families can feel safe to talk about their grief, guilt, and anger AND explore what opportunities for joy, meaning, and connection still exist despite this illness.
To promote a better quality of life for patients and families, palliative care provides a team-based approach to address sources of suffering and enhance well-being whenever it is needed on the illness journey, from diagnosis to end-of-life. Palliative interventions may range from stopping a medication that is no longer indicated and is contributing to fatigue, to talking with a chaplain or social worker about the strain Parkinson’s has placed on family dynamics. There have been several recent studies, including two randomized controlled trials, that demonstrate palliative care for Parkinson’s may improve outcomes important to patients and family. (3)(4)
Palliative care is traditionally associated with cancer and hospice. It is relatively new to the world of Parkinson’s and neurology. That being said, the suffering seen in neurologic illnesses is a perfect target for palliative approaches. The newly formed International Neuropalliative Care Society has brought together neurologists, palliative care specialists, nurses, social workers, patients, families, and other stakeholders specifically to address this gap. Fortunately, there is growing momentum to integrate palliative care into the care of Parkinson’s and other neurologic illnesses. As one example, the Parkinson’s Foundation recently launched an initiative to integrate palliative care into its Center of Excellence network.
During the interview, Fox also remarked,
“You don’t die from Parkinson’s. You die with Parkinson’s.”
My response: People do die from Parkinson’s.
In fact, Parkinson’s the Centers for Disease Control (CDC) ranks Parkinson’s as the 14th leading cause of death in the United States and it is one of the fastest-growing causes of death worldwide. (5) Fox is correct in stating that aspiration pneumonia and falls are the most common immediate causes of death in Parkinson’s, but these complications would not occur without Parkinson’s. Pneumonia and falls are also the immediate causes of death for most neurologic illnesses regarded as fatal including stroke (5th leading cause of death) and Alzheimer’s disease (7th leading cause of death).
In palliative care it is critical that patients and families have a realistic roadmap to help them make better decisions in the present and have less anxiety about the future.6, 7 Whenever I see a patient with a life-limiting condition, my first thought is always how can we make the most of this precious time. This is particularly important as we near the end of life. Currently, people with Parkinson’s are more likely to die in a hospital or an institution than at home. By acknowledging the realities of the illness, we may be able to start hospice or other home supports to prevent unwanted and often traumatic hospital and nursing facility stays.
Parkinson’s is a remarkably variable illness that ranges from people living well and productively for decades to others dying in agony after only a few years. If we focus only on those who do well and whitewash the awful realities of this illness, we risk alienating the majority of patients and families who sooner or later see Parkinson’s rob them of essential aspects of their life. We also risk losing the societal urgency for Fox’s work, namely improving care, developing a cure, and preventing an illness that affects nearly a million Americans.
1. Kluger BM. The head leads to the heart. Neurology 2018;91:713-714.
2. Miyasaki JM, Kluger B. Palliative care for Parkinson's disease: has the time come? Curr Neurol Neurosci Rep 2015;15:26.
3. Kluger BM, Miyasaki J, Katz M, et al. Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients Wi
th Parkinson Disease and Related Disorders: A Randomized Clinical Trial. JAMA Neurol 2020.
4. Veronese S, Gallo G, Valle A, et al. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study. BMJ Support Palliat Care 2017;7:164-172.
5. Akbar U, McQueen RB, Bemski J, et al. Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: a systematic review. J Neurol Neurosurg Psychiatry 2021.
6. Jordan SR, Kluger B, Ayele R, et al. Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners. Ann Palliat Med 2020;9:S63-S74.
7. Lum HD, Jordan SR, Brungardt A, et al. Framing advance care planning in Parkinson disease: Patient and care partner perspectives. Neurology 2019;92:e2571-e2579.