Tuesday, May 18, 2021

Evolution of a Patient Perspective Palliative Care Model



I have been asked what motivated me to write the paper that outlined this model.  It took me a while to piece it together, but here is the answer.

My recollection is that it was early in 2013 when my Parkinson’s movement disorder neurologist, Benzi Kluger, and I had a conversation about a man we both deeply admired, Dr. Tom Graboys.  Graboys had recorded his thoughts and reflections on his life before and after being diagnosed with both Parkinson’s and Lewy body dementia (Life in the Balance).  We were talking about how Graboys related to his patients and his concern about how doctor/patient communication seems to have lost the personal element that he thought was so important.  I told him I thought that many patients miss that “Welby-esque” relationship that provided valuable information to doctors that couldn’t be found on their charts.

Within the next few months, Benzi started a PD palliative care clinic at the University of Colorado Hospital in the neurology department, the first of its kind in the U.S.  He also wrote a paper about a new PD palliative care paradigm and developed a presentation for both patients and the medical community, which I had the opportunity to attend.

During this time I was working on a book about my personal experience with Parkinson’s related cognition issues and Benzi agreed to be my “medical consultant”.  I wrote a chapter on palliative care that felt important.  We both attended the World Parkinson Congress in Montreal that year.  We talked about the great presentations on the need for more emphasis “patient-centric” research including patient involvement, something that I knew fellow Persons with Parkinson’s (PWPs) found very motivating.  During Christmas week we met to discuss the finishing touches on my book as well as an idea he had for PD palliative care research.  His focus for the research, which reflected the work of his palliative care clinic, was the middle to later stages of disease progression.  I mentioned that, since palliative care is meant to impact all stages of PD, I would like to work on a model for PD palliative care.  This model would touch on all stages of the disease, but would pay particular attention to pervasive concerns of patients and caregivers starting at diagnosis that related to the “Welby-esque” topic we had talked about months ago.  In this way, perhaps we could generate a few ideas for “quick wins” that would benefit the PD community in the near future.

As 2014 progressed, things started falling into place.  I was on a national call that PDF had as part of their PAIR program with the Patient Centered Outcome Research Institute.  We were brainstorming ideas when I asked if they were funding research on palliative care, which they were, but none related to PD at that time.  I contacted Benzi with this exciting news and learned that he was already working on a proposal.  Of course, I expressed my interest in being involved.  We agreed on a target date for submission of a proposal.

The rest is history.  A proposal was submitted and PCORI offered a $1.5 million grant for a three year multi-site study.  Benzi asked me to put together a patient/caregiver council to provide input and feedback at all stages of the study.  We now have a team of nine members including patients and caregivers with experience that covers the spectrum of PD.  We had our first teleconference the end of September 2015 and PDF offered to fund a first PD Palliative Care Conference that would take place in Denver only a couple weeks later.

I was excited to learn that Benzi would like to have a patient/caregiver presentation early in the program, which would be attended by individuals who had significant with palliative care all over the world.  I knew immediately that I would like our topic to be the “model” I had been working on since 2014.  With the help of friend and colleague, Gil Thelen, I was able to put the finishing touches on the proposal.  Our entire patient council participated in the presentation, which included personal stories that demonstrated the need and potential impact of PD palliative care.  We were deeply gratified by the generous praise and appreciation that was expressed by the conference attendees!

An updated version of the Patient Perspective Proposal for PD Palliative Care will be the focus of a presentation I have been invited to give at the World Parkinson Congress in Portland this September.  This update can be viewed at http://www.shakypawsgrampa.com/index.php/new-blog/entry/updated-patient-perspective-proposal-for-pd-palliative-care

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