5-18-2021
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!
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