The philosophical role of illness - and how it can teach us to live reflectively

 Reprinted from The Conversation (published 4/6/2016) by permission:

 

Serious illness is a great calamity. It is unwelcome, violent, frightening and painful. If it is life threatening, it requires the ill person and their loved ones to confront death. Illness causes pain, anxiety, incapacitation; it limits what the ill person can do. It can cut a life short, stop plans in their tracks, and detach people from life, suspending the previous flow of everyday activity. In short, illness is almost always unwelcome but must be endured, as it is also unavoidable. We “each owe nature a death”, as Freud put it.

But illness also has revelatory power. It pushes the ill person to the limit and reveals a great deal about us, how we live, and the values and assumptions that underpin our lives. Illness can also provide both philosophical motivation and instruction, by pointing to our habits and assumptions and putting them into question. So we should consider illness as a legitimate and useful philosophical tool.

What kind of a philosophical tool is illness? First, illness uncovers aspects of embodied experience with tremendous force. It shows us the frailty and failure of the flesh, revealing dimensions of human existence that are both tacit and surprising. Illness is therefore an opportunity for us to reflect on the nature of such bodily existence, its limits, and how it conditions our lives.

Second, illness is (at present) an integral part of biological life and so must be taken into account when considering human life, values, meaning and social arrangements. We are all destined to die, and most of us will fall ill (or are ill) in the process. This is a significant fact about human life that both structures and delimits it.

Third, illness has what I call a ‘distancing effect’. It withdraws us from previous habits, routines and practices, which become impossible in illness, and forces us to reflect on those habits and practices. Illness can destroy the expectations we have about our life, such as assumptions about how long we might live and how independent we should be, and in this way reveals the values we take for granted, many of which are only articulated explicitly when one falls ill.

Reflective living

In short, illness leads us to question how we live, why we live as we do, and how we might continue to do some things within the constraints of illness. Illness is a challenge, a demand, that requires a reflective response. Illness radically changes our relationship to our body, environment, and social world.

It changes our attitude towards time and the future. It often forces us to consider what is important and what is trivial. It can furnish us with new clarity and focus, and it can lead us to appreciate things we were previously too busy to notice. As such, illness can awaken reflection in the ill person simply by forcing change on that person. This reflection is, simply put, philosophising.

So, for me, illness is a unique form of philosophising. We normally think of philosophising as a chosen activity, not something that can be forced on someone. But in the case of illness, the ill person is thrust into great uncertainty, anguish, incapacity, and anxiety and these may lead that person to ask philosophical questions about justice, luck and misfortune, autonomy and dependence, and about the meaning of their life.

Illness is a violent invitation to philosophise. It arrives, unwelcome, wreaking havoc on a previously ordered life, and throws into the air many of our assumptions and ideas about what our life could and should be like. As such, it may be an effective philosophical tool that can yield important insights. Illness can call for more radical and personal methods of doing philosophy. It can affect the philosophical concerns of the ill person. It triggers reflection on finitude, disability, suffering and injustice. It can also change the urgency and salience of particular philosophical topics.

Of course, illness won’t do this in every case. If the illness is too painful or debilitating, there is no room for reflection. If the sorrow and trauma are too great, there can be no “post-traumatic growth”, as psychologist Jonathan Haidt calls it. But in other cases, illness can be a transformative experience, as philosopher L.A. Paul defines it. It can alter what we know and what we value in ways that are deeply life changing.

Challenges of the Changing Healthcare Landscape

 

According to a recent NY Times article (shared by Gil Thelen), primary care practices are being acquired by giant corporations/ hospital groups that now control most of the healthcare industry.  It seems that the motivation for this activity is access to patient databases as well as huge Medicare payments from the U.S. government that provide significant incremental sources of profit.

Corporations being interested in profit is not new.   However, it does give us an opportunity to “read the tea leaves” to prepare for any impact on PDPC.  In my opinion, we need to be prepared to address possible profitability ramifications of PDPC.

The pursuit of profit takes place in the context of the organization’s strategic plans.  Many industries, including healthcare, are using TQM (Total Quality Management) as a framework for achieving a balanced business approach.  With TQM, the primary goal is to build loyalty by consistently meeting/exceeding customer expectations. To do this, creative and innovative planning is required.  Effective execution of those plans involves commitment (ongoing focus on the primary goal by the entire organization), accountability (quantifying the degree to which

the primary goal was met), and continuous improvement (ongoing commitment to TQM). 

Reference:  Frontiers | The impact of integrated quality management-based health services on general hospital quality (frontiersin.org)

 

Medical organizations have become increasingly competitive.  They will have to generate an acceptable level of profit to survive.   But to survive and, better yet, thrive they will need to look beyond profit.  They can be sure that their competition will be doing that.  Continous Relationship Management (CRM) that builds loyalty at the individual consumer level is now possible due to advances in computer technology. 

Reference:  Corporate Giants Buy Up Primary Care Practices at Rapid Pace - The New York Times (nytimes.com)

 

I can’t think of a better way to build consumer loyalty than a unique individualized program that goes beyond standard care and exceeds patient expectations by taking a holistic, team-based approach that focuses on quality of life for patients, caregivers, and families.  This is a value-added service that is not widely available.   If it is delivered in a TQM/CRM environment it is not only consumer-centric, but it may also offer a significant competitive advantage.  The clear preference shown for PDPC in our first study is a good indication of what can be expected.

The cost of delivering this service is a factor that must be considered.  With that in mind, it would be useful if the value of PDPC could somehow be quantified and compared to the cost.  Of course, the value can’t be measured in dollars and cents.

A Parkinson Advocate’s WPC Memories

 

             

My advocacy journey started in the fall of 2011 when I gave a presentation on deep brain stimulation at a senior living residence facility in Colorado Springs.  I was the only “non-medical professional” presenter.   When I spoke, the audience seemed to be more “engaged”.  It could have been the topic, but I got the distinct feeling that I was an anomaly because I was their first “patient presenter”.  They seemed to listen with “different ears”.  I got a lot of positive feedback that encouraged me to do more.

I had heard about the 2010 WPC in Scotland from Kate Kelsall and Valerie Graham who I had met at a DBS information meeting at the Parkinson Association of the Rockies in Denver.  They had received financial assistance that enabled them to attend.  They were almost breathless with excitement when they returned and shared their experience with me.  So, when the 2013 WPC site in Montreal was chosen, my care partner/wife (who turned out to be my advocacy partner as well), Linda, and I decided to go.  We had recently attended a Parkinson Disease Foundation (PDF) Parkinson Advocate in Research (PAIR) training program, so we were psyched up and ready to go.

We arrived in Montreal a day early to participate in meetings with doctors to discuss key topics like DBS, Cognition/memory issues, etc. as part of a patient-centered initiative by PDF.  This was a first and reflected a major topic at this congress which was all things patient-centered/patient-focused.  This included not only treatment, but also pursuit of patient input and involvement on many levels!  I have referred to this development as a “big bang” event when the PD world recognized that patients and caregivers should be central to healthcare planning including their needs, wants and knowledge.  They should also participate and provide feedback in research, the idea being that these folks are the ones who live with this disease.  This puts them in a unique position that has value!

I became conscious of the “we” aspect of being a PwP at Montreal, which I would describe as a sense of community among PwP’s and care partners.  They build and renew relationships that produce a “culture of caring” that is palpable.  There is also an opportunity to get to know doctors and researchers through presentations and individual interactions that can stimulate learning and build networks.  For example, I attended a presentation by Dr, Janis Miyasaki who I had learned was involved with development of palliative care for PwP’s.  I had an opportunity to speak with her afterwards, beginning a relationship of mutual respect that blossomed into another “big bang” moment, the genesis of an international consortium to explore and develop PD palliative care as well as PCORI-funded research and implementation that continues today.

I left Montreal feeling extremely motivated, energized and full of ideas!  I did a major rewrite of a book I had been working on for the last two years.  My “advisors” were very pleased, and it was published!  In the months that followed, my advocacy work accelerated.  A talented friend helped me create a “patient perspective” website and blog (which became one of Healthline’s Top 10 PD blogs for five years) with a new “Shaky Paws Grampa” brand and logo, and a PD Facebook page.

In the years following the Montreal WPC, PD palliative care, which was a great fit with the “patient-centered” movement due to its focus on quality-of-life improvement for PwP’s, care partners and families, took shape.  As the 2016 Portland conference approached, PD palliative care (PDPC) was on the docket.  It was the thrill of a lifetime for me to be included as a presenter on this subject as part of a panel led by Dr. Benzi Kluger (my movement disorder doctor since 2009 who had become my PDPC colleague).  This gave me an opportunity to provide a patient perspective on PDPC that was well received and that became the subject of a published paper.  Heady stuff!  Research supported the value of PDPC and led to training and implementation of PDPC at the Parkinson Foundation Centers of Excellence in the U.S.  For me, this all started in Montreal and felt very much like a “God thing”.

In addition to being a presenter, I was more involved with WPC 2016 as a “Blogger Partner”.   This gave me an opportunity to many of my advocacy colleagues for the first time, as well as Executive Director Eli Pollard who has played a major role in the growth and success of this enormous event!  I have appreciated and valued my interaction with Eli during the subsequent years.

As a side note, singing was very important to me prior to my PD diagnosis in 2008.  I learned that my singing voice was likely to suffer (as it later did in the much more noteworthy cases of Linda Ronstadt and Neil Diamond).  I joined a vocal rehab group in the Phoenix area in 2016 after acquiring a “snowbird condo” due to a confluence of good fortune and my growing problems dealing with winter in Colorado.  WPC 2016 provided me an opportunity to sing with the WPC choir at the opening ceremony.  My voice has continued to deteriorate in the years that followed.  However, it has been slowed by my participation in Tremble Clefs  (TC) while I have been blessed to be able to experience the joy of singing with fellow PwP’s and care partners who have become “near and dear” to my heart.  I am committed to helping the TC concept flourish and grow.  This goal is shared by our TC Director, Sun Joo Lee, who has an undergrad degree in voice and music therapy.  She has taken her commitment to another level by pursuing a Ph. D. in music therapy at the University of Iowa.  The subject of her dissertation will be Tremble Clefs.  God continues to bless me.  Hot off the presses, I just received this exciting information:

Arizona Tremble Clefs has been selected to receive a Congressional Recognition Award from Congresswoman Debbie Lesko, US House of Representatives 8th congressional district, for their contributions to the Arizona Parkinson’s community.  

Gradually, in the years following WPC 2016, I became aware of changes that led to some tough choices.  My speaking skills were deteriorating, my ability to think clearly, especially under any kind of pressure, was declining, and my memory was unreliable.  I was not meeting my own expectations for managing my website. New blog articles were few and far between.  With regret, I shut down my website and PD Facebook page, out boarded my blog, and stopped making advocacy presentations to support groups.  I chose to limit my advocacy involvement to the remainder of my PDPC commitment and Tremble Clefs.  I decided that I would not attend the 2019 Kyoto WPC.   

All our lives were disrupted by the pandemic during 2020-21.  2022 was a mixed bag and it officially ended in May 2023.  My AZ TC group lost many members and is just regaining its momentum this year.  The 2022 Barcelona WPC had to be postponed to July 2023.  I really wish I could be there, but I am sure it will be another big success and create many lasting memories!

 

Update on CND Life Sciences

 

My last blog article (An Exciting New Diagnostic Tool) talked about a new PD-related R&D company named CND Life Sciences that has created a skin biopsy test that detects the presence of alpha-synuclein, a mis-folded protein that has been a major target of PD research.  The first article was written before I had the Syn-One test, a minimally-painful series of three skin biopsies (back of neck, thigh, and lower leg).  My reasons for taking the test are below.

Personally, I want to know what I am dealing with so I can seek appropriate treatment and make informed choices for my future.  While this is not an endorsement, it is a recommendation for Movement disorder doctors, Palliative care teams, PwP’s, care partners and their families to research this new development.  For further information, visit CND LIfe Sciences - Home of the Syn-One Test™.

I received a report a few days ago with the test results.  The bottom line was that I had “abnormal” results from two of the three biopsies (neck and thigh).  Alpha-synuclein was detected in both locations.  Also, nerve fiber density was abnormal in both the thigh and lower leg biopsies.  Of course. “abnormal” is never good news, but it was a big step forward in three regards:

•    I  It was consistent with the PD diagnosis I first received fifteen years ago.  There was no testing available at that time to confirm my diagnosis.  This is a big deal for those who are newly diagnosed!
• The results were not consistent with a lewy body dementia (LBD) diagnosis.  Actually, it does not confirm dementia with lewy bodies diagnosis (DLB).  LBD has two subcategories which are DLB and PDD which are basically the same except DLB occurs at or close to diagnosis and does not always include PD whereas PDD occurs later in the course of PD.  (Confusing, I know!).  It is helpful for me as it at least rules out DLB (I am told), though symptomatically it amounts to the same thing.  I am told that research is being done to identify PDD.
• The abnormal nerve fiber density results confirm my somewhat tentative observation/diagnosis of neuropathy which is definitely helpful.

Once again, I encourage patients who are dealing with confusion around any of the five neurodegenerative diseases included in the Syn-ONE test (including PD and LBD) to tell your doctors about CND Life Sciences.  You may have to push back some if they minimize the idea without looking into it  We all do that occasionally.