The Five Myths About Using Palliative Care in Parkinson’s Disease
Dr. Benzi Kluger
The Five Myths About Using Palliative Care in Parkinson’s Disease
Who is Benzi Kluger?
Benzi addresses the myths and the truths!
Dr. Benzi Kluger is a Professor of Neurology and Medicine and the Director of the Palliative Care Research Center and Neuropalliative Care Service at the University of Rochester. He is fellowship trained in movement disorders and behavioral neurology (University of Florida). He is internationally known for his work in bringing a palliative care approach to people living with neurological illnesses and to their families. He has led several international working groups on palliative care and Parkinson’s disease and recently published a landmark study of the first multi-site randomized controlled trial of team-based palliative care for persons living with Parkinson’s (JAMA-Neurology, 2020).
We sat down with Benzi to ask some critical questions and to dispel some common myths about this field:
Myth #1: Palliative care is only for patients with cancer or those who are dying:
Palliative care is an approach to caring for people living with serious illness and for their families. The goal of palliative care is to improve quality of life and to reduce suffering by looking at the whole person. This process includes managing symptoms like pain, difficult emotions, social support, spiritual wellbeing and planning for the future. I like to call palliative care a person-centered approach to care in an effort to distinguish it from other parts of healthcare that are more disease-centered. Many people including some doctors have a misunderstanding that palliative care is only for people who are dying or with cancer. It often gets confused with hospice. Palliative care may actually be appropriate at any point in an illness, depending of course on the circumstances.
Myth #2: Hospice is for people who are choosing to die:
Seminal recent article by Drs Kluger and colleagues on palliative care and Parkinson’s
Hospice is palliative care specifically for persons nearing the end of life. Hospice is covered by all insurances including Medicare and Medicaid and provides support in the form of medical care, medical equipment, nurses, social work, spiritual support and often volunteers. Ninety percent of hospice occurs at home, so it may be a great option for people who are looking to avoid going into the hospital and people whose goals are to spend as much time at home and with family. Choosing hospice is not choosing to die, it is choosing how you want to live. I’ve had patients live years or even “graduate from hospice” because they did so well with the care they received. Some studies have shown that patients can live longer on hospice.
Myth #3: Palliative care is not for people living with Parkinson’s Disease:
Keeping Parkinson patients in the home is an important goal
People living with Parkinson’s disease (PD) and their families have a number of palliative care needs that may not be well addressed under current models of care. These include caregiver support, management of non-motor symptoms, planning for the future, spiritual and emotional support and end-of-life care. Even though, PD is listed by the Centers for Disease Control as the 14th leading cause of death in the US, many healthcare providers do not think about PD as a potential terminal illness and hence do not prepare patients and families for end of life issues.
We recently published a large multisite randomized controlled trial that shows that outpatient palliative care improves a wide-range of patient and caregiver outcomes including patient quality of life, non-motor symptoms, motor symptoms, planning for the future, caregiver burden and caregiver anxiety. I think the question now is not whether palliative care works for PD but how can we improve it and get it to more people.
Myth #4: Doctors are well trained in palliative care:
Doctor’s need specific education to help promote neuro-palliative care
The reality is that many physicians do not get very much training in palliative care. The specific area of neuro-palliative care is a relatively new sub-specialty that is growing in momentum.
When I started doing palliative care in 2013, there were only 3 centers performing this approach in all of North America. There are now an increasing number of movement disorders centers that offer palliative care however it remains far from a standard of care. We just received a grant to work with the Parkinson Foundation to make this a new standard of care and will will work toward this goal over the next 3 years. It will take time before Parkinson’s palliative care becomes accepted. Patients can help advocate for their care and help to educate their personal physician. If you are a patient who has access to palliative care through one of these centers, ask for it. Some centers may not have a specific neuropalliative care program but may have other outpatient palliative care available. If neither are available, you can help your physician to provide a palliative care approach by creating a checklist that includes important palliative care needs. For example, you can ask for help with completing advance directives, treating depression, or receiving caregiver support.
MYTH #5: Getting palliative care means that I have to abandon my regular doctors:
Benzi Kluger practices at the University of Rochestor says you don’t have to abandon your doctors to get palliative care.
The palliative care team is an additional layer of support that can help your existing physician (and care team) to take care of your needs. The team can involve many types of providers including a physical therapist, a social worker, a chaplin and a hospice physician or nurse. It is critical that all members of the team work together and communicate.
Dr. Michael Okun and Dr. Indu Subramanian