Category Archives: Living with a Neurological Condition

“Five Things Physicians and Patients Should Question” (geriatrics; hospice)

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The “New Old Age: Caring and Coping” blog of the New York Times has been covering the “Choosing Wisely” campaign.  This campaign is an attempt to provide laypeople and doctors with a list of tests to avoid.  Each medical specialty has been asked to develop a list of “Five Things Physicians and Patients Should Question.”  Lists from the American Geriatrics Society and the American Academy of Hospice and Palliative Medicine were published last week on the “Choosing Wisely” website (choosingwisely.org).

AMERICAN GERIATRICS SOCIETY LIST

Here’s the American Geriatrics Society list:  (see the webpage for a few more sentences on each item)

www.choosingwisely.org/doctor-patient-lists/american-geriatrics-society/

1.  Don’t recommend percutaneous feeding tubes in patients with
advanced dementia; instead offer oral assisted feeding.

2.  Don’t use antipsychotics as first choice to treat behavioral and
psychological symptoms of dementia.

3.  Avoid using medications to achieve hemoglobin A1c <7.5% in most adults age 65 and older; moderate control is generally better.

4.  Don’t use benzodiazepines or other sedative-hypnotics in older
adults as first choice for insomnia, agitation or delirium.

5.  Don’t use antimicrobials to treat bacteriuria in older adults
unless specific urinary tract symptoms are present.

AMERICAN ACADEMY OF HOSPICE AND PALLIATIVE MEDICINE

1.  Don’t recommend percutaneous feeding tubes in patients with
advanced dementia; instead, offer oral assisted feeding.

2.  Don’t delay palliative care for a patient with serious illness who has physical, psychological, social or spiritual distress because they are pursuing disease-directed treatment.

3.  Don’t leave an implantable cardioverter-defibrillator (ICD)
activated when it is inconsistent with the patient/family goals of
care.

4.  Don’t recommend more than a single fraction of palliative
radiation for an uncomplicated painful bone metastasis.

5.  Don’t use topical lorazepam (Ativan), diphenhydramine (Benadryl), haloperidol (Haldol) (“ABH”) gel for nausea.

And here’s a link to the “New Old Age: Caring and Coping” blog post about these two lists:

newoldage.blogs.nytimes.com/2013/02/28/for-the-elderly-lists-of-tests-to-avoid/

The New Old Age: Caring and Coping
Health Care
For the Elderly, Lists of Tests to Avoid
New York Times
By Paula Span
February 28, 2013, 6:54 am

Robin

Drugs to avoid or be cautious of in the elderly (2-page Canadian cheat-sheet)

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Group member Dorothy emailed me this link recently:

www.rxfiles.ca/rxfiles/uploads/documents/psyc-elderly.pdf

Psychotropic Drugs in the Elderly
Treatment Considerations
Sept 2011
The RxFiles Academic Detailing Program
Saskatoon City Hospital

It’s sort of like a two-page “cheat sheet” for medical professionals on:

  • what medications the elderly should avoid or be cautious of
  • suggested medications for depression, insomnia, pain, psychosis, agitation, anxiety, etc.
  • how to assess and treat what are known as BPSD (behavioral and psychological symptoms of dementia)

Throughout the cheat sheet, the acronym SE is used.  This refers to “side effects.”

One thing that is obviously missing — but it’s not part of this chart
— is what medications to avoid if dealing with a person with
Parkinson’s Disease or parkinsonism.  For example, some medications have anti-dopamine effects, and they shouldn’t be given to people to parkinsonism.  A less-sophisticated but more user-friendly list of medications to avoid with PD can be found here:

www.apdaparkinson.org/userfiles/files/Medications%20to%20be%20Avoided%207-11.pdf

If you find other things missing or items you would take issue with on the “cheat sheet,” please let me know!  This is the sort of document where more than one reviewer is needed as it’s densely-packed with details.

Robin

 

40 Requests of Family, Friends, and Care Team (Jill Bolte Taylor, PhD)

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Here’s another list of requests that those with neurological
conditions may have of their family, friends, and care team.

This list of 40 items was written by Jill Bolte Taylor, PhD, and is
part of her book titled “My Stroke of Insight.”  I highly recommend the book, if you haven’t read it before.  Or there is a good online video of Dr. Taylor giving a TED Talk.

I don’t think all 40 items will apply to those with PSP, DLB, MSA, or CBD.  For example, Dr. Taylor’s #17 is “Ask me multiple-choice
questions. Avoid Yes/No questions.”  Initially the maximum number of choices my father (PSP confirmed upon brain donation) could handle was two.  Later, he could only tolerate yes/no questions.  Later, when he could no longer respond, we’d tell him what choice we were making on his behalf,and said we thought it was the choice he would make.

Below, I’ve listed a few of Dr. Bolte Taylor’s 40 requests.

Robin

Excerpts from

“My Stroke of Insight”
by Jill Bolte Taylor, PhD

1. I am not stupid, I am wounded. Please respect me.

2. Come close, speak slowly, and enunciate clearly.

3. Repeat yourself—assume I know nothing and start from the beginning, over and over.

4. Be as patient with me the 20th time you teach me something, as you were the first.

5. Approach me with an open heart and slow your energy down. Take your time.

6. Be aware of what your body language and facial expressions are
communicating to me.

7. Make eye contact with me. I am in here—come find me. Encourage me.

8. Please don’t raise your voice—I’m not deaf, I’m wounded.

9. Touch me appropriately and connect with me.

10. Honor the healing power of sleep.

11. Protect my energy. No talk radio, TV, or nervous visitors! Keep
visitation brief (five minutes).

12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.

“I’m Still Here” Approach to Those With Dementia

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John Zeisel, PhD, has developed a philosophy called “I’m Still Here” about how we treat someone with dementia.  He says that people with dementia can have a life worth living.

There will be a PBS special in March titled “Hopeful Aging” that will review Dr. Zeisel’s philosophy.  There’s a 4-minute trailer to the PBS special here:

www.youtube.com/watch?v=-2IY7MhkUVk

In the trailer, he notes that there are seven myths about people with dementia:

1.  They can’t remember.
2.  They lose their identity.
3.  They have no attention span.
4.  They can’t make decisions.
5.  There’s always an aggressive phase.
6.  They can’t enjoy anything because they forget.
7.  They can’t learn.

He says it’s natural to believe that our loved ones with dementia are not there, but it’s not always the case.

Here’s a blurb about “Hopeful Aging” published in Alzheimer’s Daily News:

“Journey through the aging brain with Dr. John Zeisel, explore the possibilities of learning and connection at any stage of life and discover proven strategies that help anyone get the best out of later life. Hopeful Aging is a program that focuses on the journey of brain aging. It brings together proven strategies to help everyone get the most out of their later life by harnessing the lessons of neuroscience with a revolutionary learning technique called C-MAP. Utilizing the principles in Hopeful Aging, viewers will see how a different approach to dementia and Alzheimers can help create a life worth living.”

Robin

Therapy Even if No Improvement – Big Change to Medicare Rules

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Back in October 2012, it was reported that a settlement had been proposed that would affect skilled nursing home stays as well as home health and home therapy services for those with Medicare.

This Monday, the New York Times reported that Congress also took action to allow exceptions to what Medicare pays for physical, occupational, and speech therapy.  Plus, the proposed settlement had been approved by the court; Medicare is now prohibited from denying patients coverage for “skilled nursing care, home health services or outpatient therapy because they had reached a ‘plateau,’ and their conditions were not improving.”

This will have an impact on Medicare beneficiaries who have PSP, CBD, MSA, and DLB diagnoses.

The Center for Medicare Advocacy (different from the Centers for Medicare & Medicaid Services), has a webpage devoted to “explaining how to challenge a denial of coverage that is based on the lack of improvement.”  See:

www.medicareadvocacy.org/take-action/self-help-packets-for-medicare-appeals/

And, the Center for Medicare Advocacy “advises beneficiaries to show a copy of the settlement — also available from the Web site — to your health care provider at your next physical therapy appointment if you are concerned about losing Medicare coverage.”

See a highlighted copy of the settlement:

www.medicareadvocacy.org/wp-content/uploads/2012/12/Settlement-Agreement-for-Web.pdf

Here’s a link to the NYT article:

newoldage.blogs.nytimes.com/2013/02/04/therapy-plateau-no-longer-ends-coverage

The New Old Age: Caring and Coping
Finances & Legalities 
Therapy Plateau No Longer Ends Coverage
New York Times
By Susan Jaffe
February 4, 2013, 7:49 am

Robin