“Palliative care” is too often considered to be confined to the final stages of illness: pain medications or sedatives as needed, anti-bedsore measures, adequate nutrition – and little else. Wrong. It’s now a medical specialty in its own right, with post-residency training programs, fat textbooks and dedicated medical center departments. True, it’s for people with irreversible conditions, but its offerings include far more than those basics.
Most palliative care exists in the world of oncology, of course, but it’s now gaining attention for PSP. My PubMed search on the terms “progressive supranuclear palsy” and “palliative care” revealed 50 articles, all since 2000, of which 45 appeared since 2011.
CurePSP’s Centers of Care network has a sub-group of neurologists and site coordinators dedicated to palliative care in PSP, CBS and MSA. Its task is to research and better understand the role of palliative care, to educate clinicians, patients, caregivers and government regulators, and to recommend changes to improve the quality and availability of such care.
That “working group,” as it’s called, took a major step this week with the publication of a paper entitled, “Serious Illness Conversation in the Care of Atypical Parkinsonian Disorders: A Practical Guide for Neurology Clinicians.” Its lead author is Dr. Michiko Bruno of The Queen’s Medical Center at the University of Hawaii. Also playing a major role was Jessica Shurer, CurePSP’s Director of Clinical Affairs and Advocacy. (Full disclosure: I know both well, have worked with each on other projects, and vouch for their skills and dedication.)
The paper formulates four “practical guides” not confined to the traditional end-of-life role of palliative care. They are: 1) informing the patient and family of the diagnosis and likely prognosis, 2) discussing the patient’s goals for the management of their illness given the lack of curative or very effective symptomatic treatments, 3) addressing safety, especially given the impulsivity that is a common part of PSP, and 4) guiding, ascertaining and respecting the preferences of patient and family regarding end-of-life issues. For each, there’s a list of “dos and don’ts” that, I assure you, would be news to many neurological professionals.
How to transmit this paper to your own physicians without risking insulting them? Maybe mention some point from the paper at an opportune moment at your next visit and cite its source. (All you need to say about the source is, “a PSP blog I read” or “doctors at CurePSP.”) A clinician with any inclination to learn more may then ask you for a link. Maybe the next paper from the Centers of Care should be on how patients and caregivers can diplomatically get neurologists to educate themselves on PSP. But meanwhile, this one on palliative care will meet another important need.
PSP Blog 
Larry, I am really happy to see this blog post. Palliative care is very misunderstood. People think it is hospice and therefore do not take advantage of it.
My Linda took advantage of palliative care. It did not replace her current neurologists or doctors and was covered by Medicare. But the additional doctor, nurse and social worker provided by the palliative care program visited our home and were on call if we needed them quickly. It was a real advantage for us.
Jack Phillips
Jack:
Thank you for describing Linda’s and your positive experience with palliative care. All those services might seem like an expensive undertaking for Medicare or an insurance company, but they actually save money in the long run by reducing non-neurological complications, emergency room visits, and duplicative or even conflicting recommendations by multiple physicians each thinking about only a fragment of the picture.
Larry
Hi Larry,
Thank you so much for writing about our paper on your blog. It’s truly an honor.
While I am not an expert in neuro-palliative care, I have learned so much from my colleagues — honestly, I wish somebody taught me this earlier in med school or in my early career !
I hope that we, neurologists, can continue to grow, strengthen our communication skills, and be true partners in care with the APD community.
Jack, thank you as well for your thoughtful feedback and ongoing advocacy.
Best,
Michiko
Dear Michiko:
Congrats on the paper and thanks for the kind word. Your energy and ideas on behalf of our patients are very special.
Larry