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Kirk started writing articles for his blog around the time his first book was published (September 2011). Not having any other bright ideas at the time, he adopted the book title as his “brand” for the blog. Over time, Shaky Paws Grampa (SPG) has become his “identity” in the PD world. The good news is that he hasn’t had to fight anybody for it and there was no competition for the web address (understandably).

He didn’t have any clear goals in mind for the blog when he started other than to make his target audience the “PD world”, opting to write about what ever inspired him at the moment. Over time, various themes emerged:

Book or writing-related
PD-related information
Clinical research study advocacy/participation
Cognition issues
Living with PD-personal
PD meeting/conference announcements
SPG speaking engagements, media interviews, and webinars
Calls to action
Personal

Three years later, he has posted 120 articles that have been viewed by readers from over 60 countries around the world.
Kirk Hall

Reflections on Time

I just finished reading a thought- provoking, inspirational book that I highly recommend on my Kindle Fire called The Time Keeper by Mitch Albom.  By the way, I got it for free as an ebook through my library on Overdrive.  All you need is a library card and some type of electronic reader to have access to thousands of books!  I enjoy reading even though it is a “draining” activity.  Probably good for my brain, which can use all the help it can get!

Time itself is a precious commodity.  Albom’s book looks at how the measurement of time, which we can’t imagine living without, has real potential downsides in the hands of humans.  The book is described in reviews as a “fable”.  It certainly is creative and a very interesting read.

Since reading the book, I have been thinking about how it might apply to me.  I noticed very early in my PD journey that I had begun to experience time in a different way that I described as “ethereal” (a fancy word that I don’t get to use a lot).  I was having trouble keeping track of time (like what day, month, or year it was) plus chunks of time seemed to go by very quickly when viewed in hindsight.  I am sure that my inability to remember much of what I had done the previous day, week, or month was a contributing factor.

Reading the definition reminded me of another favorite books, Proof of Heaven by Eben Alexander, M.D.   One of the things I remember about Dr. Alexander’s near-death experience is that, when he “returned”, he described having been “gone” a very long time.  Comparing this to my sense of large amounts of time
“disappearing” led to an epiphany of sorts, at least in my mind.  Perhaps it is too much of a stretch to compare my ongoing personal time observation with that of Dr. Alexander’s.  Perhaps not.

None of us know how much time we will have on this earth, but we all have the opportunity to decide (as long as we are able to decide) how we want to spend that time.  As I have said before, Linda and I decided some years ago what we wanted our final years to “look like”.  We decided that our goal would be to “finish the race well”.  Mitch Albom has provided a useful framework for helping make that happen.

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Kirk Hall

Palliative Care and Neurology: Striving for justice

 

 

 

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I am happy to report that the 3- year, 3-site Parkinson's disease palliative care clinical research study has achieved its goals for number of participants.  Interviews have been completed and we are about to start the analysis phase.  I an part of a patient/caregiver advisory council that is participating in the study.

I wrote a palliative care chapter  for Window of Opportunity: Living with the reality of Parkinson's and the threat of dementia (https://www.amazon.com/Kirk-Hall/e/B00HOFV0U8). I have been told that sometimes I "overthink" things.  As I thought about that, I could see that it is true.  However, there are some cases where I have spent a lot of time thinking about a subject and it has produced something that seems to be worth the effort.  This is an example:

 

Chapter 13:  Palliative Care and Neurology: Striving for justice

 

 

Below are excerpts from an email that I sent to Dr. Kluger in May 2013:

I have been thinking about our conversation on Monday regarding the desirability of doctors having a more personal understanding of patients.  Even if a doctor sees the potential benefits (which I do not think they all do), this would require a high level of commitment in a world where disposable time is a precious commodity.  I can understand that some are reluctant to break through the “protective space” between them and patients.  By doing this, they risk losing some degree of their clinical objectivity that some would argue is necessary to provide optimum care.  I, and Dr. Graboys (and you, I think) would argue the opposite.  How can a doctor hope to provide “optimum care” if they look no further than what is written on charts and records and reflected in tests?  Yes, there is risk involved.  Including the risk of having an emotional stake in the lives (and deaths) of their patients.  And yet, isn’t that what being a doctor is supposed to be about?  Making a difference in the quality of the lives of patients? Is it really possible to do one without the other?  It seems that the Hippocratic Oath supports this concept:

‘That above all else I will serve the highest interests of my patients through the

practice of my science and my art;”

 

Taking it a step further, this goes on to state:

“That I will be an advocate for patients in need and strive for justice in the

care of the sick.”

 

How can a doctor advocate properly for a patient, let alone “strive for justice”, if they do not “know” them?

This “striving for justice” is, in my opinion, central to the issue of what palliative care should be all about. 

A note of explanation is required here.  My comments to Dr. Kluger involved a subject I have thought about a great deal and about which I have strong feelings, which probably explains the outspoken tone.  I have nostalgic “Welby-esque” (people under 50 will likely have no idea what I am talking about-this refers to a TV show, Marcus Welby MD[i], about a family doctor from the 60’s) memories of trips to the doctor in my youth when doctors knew their patients on a personal level.  Over the years, as these visits have evolved from patient-centered care to what I call “industrialized medicine”[ii], where doctors are increasingly specialized, work in teams and rarely have the time or inclination to “know” their patients, I have experienced a sense of loss and even betrayal.  It has been an insidious change (and not all bad) that should have been predictable based on the amount of time that doctors have to spend on paperwork that, along with serving a useful purpose, is done to satisfy the requirements of insurance companies and protect themselves from lawsuits.

When I think about patient-centered care I am reminded of my former life in the retail and direct marketing business world.  It became second nature for me to approach problems using a framework that included strategic planning[iii] and management by objectives (MBO)[iv].  I learned the importance of being “goal-directed”.  As technology was developed to allow more sophistication, marketing evolved from a “shotgun” approach using a mix of media in an attempt to maximize business with a broad audience to “targeted marketing”[v] where we began to understand the importance of knowing who our customer was and designing promotions that would appeal to them.  The next step was the era of total quality management (TQM)[vi], where businesses began to recognize that they could maximize customer loyalty by understanding more about the needs and wants of customer segments and devising strategies to consistently meet or exceed their expectations.  Today, this approach has been further refined as customer relationship management (CRM)[vii] involving advanced technologies (including “cloud-based” sales & marketing information systems) that provide detailed, ongoing insights regarding their target customers.  Which leads me (finally) to my point: To  succeed in today’s highly competitive global environment where customers have more choices than ever, businesses MUST be “customer-centric”[viii], thus having the RIGHT goals is more important than ever.

So the business world has learned the importance of understanding who their customer is, communicating with them on an ongoing basis to understand what is important to them, and developing strategic plans designed to consistently meet or exceed their expectations.  It seems to me that the same principles apply to patient-centered care.  The customer is the patient and, secondarily, the patient’s family (not the hospital or insurance companies).  I am not trying to be condescending or “preachy”, but I feel that I owe it to my fellow patients to be clear about this.  There must be communication with patients to understand their needs and wants and this must be factored into a plan for delivery of outstanding medical care using the best available knowledge and technology.  As a result, this plan should include a commitment to patient empathy and engagement.  Finally, the plan should be designed to allow providers to obtain feedback from patients that will enable them to determine the degree to which they are meeting their own goals.

Some may say I am dreaming.  Like John Lennon wrote in Imagine, I’m not the only one.  I’m not saying this will be easy or that it can be achieved overnight.  I am particularly worried right now as we stand on the brink of evolving to socialized medicine[ix] in the U.S.  The last endnote provides a list of pros and cons on this subject, which will enable the reader to reach their own conclusion about whether this is good or bad.

I know that some hospitals and doctors are already utilizing at least some of the strategies I have covered.  For example, my hospital (University of Colorado Hospital) emails a short survey to me following each visit to get feedback on their performance and my level of satisfaction.  I am particularly encouraged by a program for neurological palliative care that Dr. Kluger started at UCH in March 2013 (before he had the benefit of my “wisdom” as expressed in the email I sent him in May).  To me this reflects the possibility that our thoughts have been evolving in similar directions on parallel paths and that we have reached a confluence precipitated by his involvement with this book.

At the beginning of September 2013, Benzi (we are now on a first name basis) enlisted me to help publicize a presentation he was planning titled “Palliative Care and Neurology: Time for a paradigm shift”.  He know that I was disappointed that I was unable to attend, so he invited me to a symposium he was hosting on September 21, 2013 for Epilepsy and Movement Disorders that would include his Palliative Care presentation.  I was extremely energized and encouraged by what he had to say to his fellow neurology professionals.  Since then I learned that he is working with a Canadian colleague, Dr. Janis Miyasaki, on development of this new model.  Elements of interest to me include:

  • The need for palliative care for PD patients begins at diagnosis, when they are typically given minimal information and then “set adrift” until their next appointment (typically in about 3 months).  This is a time when the patient and family often needs to ask questions and process predictable emotions.
  • The need for palliative care continues to grow from time of diagnosis and at some point may transition to a focus on hospice (part of the palliative care spectrum, but not the same thing).
  • The primary goal of palliative care is prevention and relief of suffering for patients and their families including control of pain and other physical symptoms as well as psychological, social, and spiritual issues.  It affirms and supports life while addressing death as a normal and expected outcome.
  • Palliative care can be used alone or in conjunction with curative treatments and requires a team approach (neurologist, internist, psychologist, social worker, hospice, clergy, etc.).
  • Caregiver needs must be addressed, including spiritual needs and demoralization.
  • Most neurologists receive little or no palliative care training.
  • Communication with patients and families is a core issue including adequate time for questions, explaining clearly the meaning of a diagnosis, providing information on where to go for support, and appropriate delivery of bad news.
  • Many doctors are reluctant to discuss difficult subjects like cognitive issues or death with patients.
  • Hospice is the last stage in the palliative care spectrum that includes end of life care for the patient and family and a focus on comfort and quality of life.

 

Patients need to view palliative care as a “two-way street” and learn what they need to do.  There are a variety of steps available to take in preparation for death that enable us to manage this transition and minimize problems for our loved ones, including wills, living wills, establishment of trusts, and more[x].  Our church had a presentation on a type of planning that involves creation of a document called “Five Wishes” that would communicate information to a trusted individual that could include burial preferences, donation of body parts, memorial service preferences, disposition of valued personal items, elimination of unwanted online footprints, handling of computer files, and any other specific guidelines regarding end of life wishes.  Of course, we have the option to let someone else worry about these details because we prefer to not think about them.  This does not seem fair or considerate to me.  I chose to share a “last wishes” document with my older son along with the comment that this will hopefully not be needed for many years.

Families need to be as knowledgeable as possible regarding their loved one’s illness so they can advocate for them appropriately to the end.  As much as we would like to rely on doctors and nurses to know everything they need to know to provide optimum care, that is not always possible.  They need to be aware that most patients enter hospice too late or not at all.  When asked after their loved one has passed what they would do differently, many families say that they would have engaged hospice sooner.  Talk to your doctor about how to know when the time is right.  Understand that, even though it is difficult, the time will come when it is no longer appropriate to try to prolong life.  At that point, the objective should shift to meeting the patient’s emotional and spiritual needs as death approaches.  This is the time when advance directives become crucial for allowing the patient to die according to his or her wishes.  This is obviously in the best interests of the patient and also benefits the family by facilitating closure and a sense of peace.

The question regarding a patient’s wishes about how he or she wants to die and his or her right to choose is controversial due to cultural, religious, and legal constraints.  It seems to me that we are at a point where it is appropriate for reasonable people to examine some of our long-standing beliefs about moral and legal restrictions placed on the way people with terminal illnesses (including dementia) choose to make end of life choices and decisions.  Dementia poses a serious problem on the verge of being epidemic, the financial and emotional costs of which are significant.  If an individual faces the possibility of eventually being unable to communicate with or even recognize those they love most with no reasonable hope of recovery, should they not have the option of developing a plan to end their own life?  Should they be forced to suffer needlessly while their families watch helplessly?

I would urge patients and families to plan a meeting with their doctor and other hospice team members to discuss this subject openly in order to help the patient reach a decision that is appropriate for him or her and develop consensus with family members.  This should include a frank discussion about how a “natural death” is likely to occur.  Have the doctor explain euthanasia (not legal in the U.S., but available in Netherlands, Belgium, and Luxembourg), physician assisted suicide (legal currently in OR, VT, WA, and MT), and terminal sedation.  Also discuss the pros and cons of aggressive symptom treatment and life-prolonging strategies.  Once the patient reaches a decision, his or her wishes should be legally documented in writing to avoid any future complications.

Regarding the spiritual component of palliative care, UCH reports that their studies indicate that spiritual support services and well-being are associated with higher patient quality of life.  Over 70% of PD patients reported that spirituality/faith was important to their lives and over 50%use prayer to help with their health concerns.

Learning about Benzi’s plans for palliative care at my hospital and his thoughts about the need to understand and honor patient end-of-life choices has given me a tremendous sense of peace about the process of dying.  It was the piece that had been missing.  The other piece already in place is my faith.

Window of Opportunity: Living with the Reality of Parkinson’s and the Threat of Dementia

Copyright © 2013 Kirk W. Hall

ISBN 978-0-9842063-4-6

 

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