“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.