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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

Palliative Care and Counseling

I have been having trouble coming up with ideas for a new blog article (they usually “appear” in the middle of the night).  Either I can’t remember the detail of the idea that made it interesting (at least to me) or the idea turns out to be “not as interesting” in the light of day.  The bottom line is that the articles I used to post fairly frequently (the latest count since inception in 2011 is 160+ articles) are becoming few and far between.

It is disappointing to me that this has happened.  But like the old man who has been thrown on the cart with the dead people in Monty Python and the Holy Grail, I am “not quite dead yet”.  I am still involved in the PD palliative care research project with University of Colorado Hospital that is so important to me.  Recruiting for the study is close to completion and there will be opportunities to contribute in the end stages.  I am a “blogger partner” for the 2019 World Parkinson Congress in Kyoto for which I will be writing one article for publication in April 2018.  There are no plans in the works that I know of for a third meeting of the International PD Palliative Care group, though follow up work from previous meetings continues.

That said, I have been aware that my ability to contribute has declined and my “shelf life” is running out.  I can see that the same thing is happening or has happened with many of my “highly-engaged” friends.  I am sure I am not the only one feeling a sense of loss because of this.  Along with that is a feeling of guilt that I may be letting people down, which indicates an exaggerated sense of my importance, but is nonetheless true.

It was these feelings and subsequent thoughts that led me to write this article.  It is totally predictable that the “black hole of PD” will eventually drag us all down.  But is there a way that the angst that peaks in later stages of PD could be managed or minimized?

It seems to me that the best way to address these issues (that are predictable for all PwPs and care partners) already exists in our PD palliative care model, which recognizes the probable need for counseling.  In our study’s model, the social worker and “spiritual advisor” are designated to deal with these issues.  All these thoughts have led me to believe that we may have underestimated the need for counseling and the current model’s ability to address that need.  I think we need to consider adding a psychologist to the team who will have the experience and expertise needed.  At the same time, I think that palliative care providers need to become more proactive in offering appropriate counseling services for PwPs and care partners individually and together.

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Kirk Hall

GUIDELINES FOR PD CAREGIVERS: HOW TO KNOW WHEN TO ENGAGE HOSPICE

I had an opportunity to review a paper that will be published in the near future titled Prognostic Predictors in Parkinsonian

 

Disease: Systematic Review and New Suggested Guidelines for Hospice Referral written by Julienne L. Bemski, DO; R.

 

Brett McQueen, PhD; Julie H. Carter, RN, MS, ANP; Elizabeth R. Goy, PhD; Jean S. Kutner, MD, MSPH; Janis M.

 

Miyasaki, MEd, FRCPC, MD6; Benzi M. Kluger, MD, MS.  I was asked to do this because I participated in the International

 

PD Palliative Care Conferences held in Denver, CO (2015) and Portland, OR (2016).  These guidelines are based on a

 

comprehensive review of research related to predictors of mortality for PD. 

 

Currently, less than 5% of PD patients are using hospice services.  It is hoped that the information in this paper will lead to

 

higher rates of referral of PD patients to hospice services by doctors.

 

It has been my experience that information like this has been hard to obtain in the past for a variety of reasons including:

  • Reluctance by doctors to share unpleasant information
  • PD was not considered to be a cause of death (it is now recognized as the 13th leading cause of death in the U.S.)

I am sharing these excerpts for the purpose of providing caregivers with information that will help them recognize when the

 

time has arrived to engage hospice services (typically about 6 months before death).  I am doing this because my research

 

has shown that many caregivers have expressed regret after the death of their loved one that they did not engage hospice

 

services soon enough or at all.  It makes sense for caregivers (who are “on the job” 24/7) and doctors to work together to

 

start hospice services at the appropriate time.

 

Participation in a PD Palliative Care program enhances the relationship and communication between the caregiver/patient

 

and the medical team.  These programs are a relatively new development and are becoming increasingly available across the

 

U.S.  Telemedicine is being developed so that services can be provided even in remote areas.  Talk to your doctor and make

 

sure you have a plan in place!

 

Suggested guidelines and recommendations for hospice referral: 

Based on this review, we provide recommendations for providers on identifying PDRD patients who are candidates for hospice referral in Table 3. These recommendations include patients exhibiting (1) evidence of advanced disease OR (2) rapid or accelerated disease progression OR (3) advanced dementia. These guidelines differ from current Medicare guidelines in that they are specifically targeted for PDRD and have expanded hospice triggers to include falls with fractures, loss of efficacy or medications, and cover both motor and nonmotor symptoms. We have also added that rapid OR accelerated decline should trigger consideration for hospice in that our collective experience suggests that decline rarely follows a straight line and often accelerates as patients are nearing the end of life. Even when patient’s may not be appropriate for hospice these guidelines may be used as event triggers for goals of care discussions and suggest areas for clinical monitoring (e.g. nutrition) that are often not emphasized with current standards of care.64

 

Table 3. Suggested hospice guidelines for Parkinson’s Disease and Related Disorders

1. Demonstrates evidence of advanced disease as manifest by:

A) Critical nutrition impairment in the prior year (inability to maintain sufficient fluid/caloric intake, continuing weight loss, dehydration, AND refusal of artificial feeding methods); OR

 

B) Life-threatening complications in the prior year (recurrent aspiration pneumonia, falls with fractures, pyelonephritis, sepsis, recurrent fever, OR stage 3 or 4 pressure ulcers); OR

 

C) Motor symptoms that are refractory OR nonresponsive to dopaminergic medications OR which cannot be treated with dopaminergic medications due to unacceptable side effects AND result in significant impairments in ability to perform self-care.

2. Rapid OR accelerating motor (including gait and balance) OR non-motor (including dementia or dysphagia) disease progression and disability (to bed OR chair bound status, unintelligible speech, need for pureed diet, and/or major assistance needed for ADLs)

OR

3. Has advanced dementia and meets Medicare Dementia26, 27or Advanced Dementia Prognostic Tool (ADEPT)70 criteria for hospice referral

 

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