Category Archives: Caregiving – Dementia

Seeing the ‘Invisible Patient’ (the caregiver)

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The author of this New York Times blog post argues that the MD of a patient with dementia or other serious medical condition should occasionally ask the family caregiver if the caregiver is eating properly, sleeping enough, depressed, etc.  See:

newoldage.blogs.nytimes.com/2014/11/17/seeing-the-invisible-patient/

The New Old Age: Caring and Coping
Seeing the ‘Invisible Patient’
The New York Times
By Jane Gross
November 17, 2014

In my mind, this does not seem realistic given time constraints or appropriate since the family caregiver is probably not the MD’s patient as well.

Indeed, a neurologist I spoke to about this said:

I think it is unethical to ask questions about specific health problems or indirectly treat a family member, particularly in regards to mental health like depression. Asking general questions or general statements like ‘make sure you are taking care of yourself as well’ or encouraging them to see their own doctor regularly, or telling them about caregiver services and support groups is fine and should be encouraged.  The problem is always time of course. We don’t have enough time to ask the patient everything necessary, let alone the family.

Robin

Finding out “not wanting to live hooked up to machines” means; mediation resources; etc.

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Susan Weisberg, a wonderful hospice social worker who had a family member with Lewy Body Dementia, forwarded me this recent blog post in the New York Times.

The blog post is about a medical ethics professor who is part of a family that did not adhere to her father’s wishes for “not wanting to live connected to machines.”

The author makes three points:

  • “What I hadn’t considered before my father’s heart attack was the precise meaning of ‘not wanting to live hooked up to machines.’ When people say that, it’s unclear whether they mean that they don’t want to live for the rest of their days in this condition, or that they don’t want to live for even a few weeks like that. The question of “how long?” is one we would all do well to consider.”
  • “The biggest lesson I have learned is that every family should not only discuss end-of-life wishes but should act on them by filling out an advance directive. If my father had completed one, his end might have played out differently. By the time we told the medical staff that he didn’t want to be hooked up to machines, he already was, and we acquiesced in letting things take their course, with the hope that he might improve.”
  • “What I wished we had had…was a conversation with his physicians about end-of-life possibilities right from the beginning.. … Honoring my dad’s wishes meant taking him off the ventilator while we still had that option.  The timing was key, but no one explained this or advised us how to determine when the time would be right. We now shudder that, because of hope, we were slow to see this choice and might so easily have missed it. … [Confronting] the end from the beginning might alleviate some of the inevitable feelings of guilt that arise when people make the decision to end life support.”

You can find the article here:

well.blogs.nytimes.com/2014/12/01/hoping-for-a-good-death/

Family
Hoping for a Good Death
New York Times
By Elizabeth Reis
December 1, 2014 7:05 pm

Note that the POLST form in California (capolst.org) gives people an opportunity to say that either they want no treatment, they want full treatment, or they want treatment for a limited amount of time.  If “limited amount of time” is selected, the person may state how long that is, whether it be a few days or a few weeks.

Anyone who is frail or who has a serious medical condition should complete a POLST form.  All of us should complete an advance care directive.

 

Robin

 

Start any conversation with an older relative by asking them about what care they want

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This email is of general interest to all caregivers though the newspaper article and movie mentioned are targeted at adult children (or grandchildren) of aging parents.

In this recent New York Times article about a movie called “Black Heirlooms,” we are told that the movie’s author wants to encourage inter-generational conversations about how parents (or grandparents) want to divide their assets when they are gone.

One person who saw the film offered this excellent advice:  “Start any conversation with an older relative by asking them what sort of care they might want while they are still alive. That way, you’re leading with your concern for them and won’t arouse as much suspicion about intent or greed.”

Only read the New York Times article below if you’d like to learn more about the film and story behind the film.  Otherwise, I think that viewer’s advice is the main point of the article for caregivers.

www.nytimes.com/2014/11/29/your-money/estate-planning/a-respectful-deference-to-elders-curdles-into-a-fight-over-assets.html

Estate Planning
A Respectful Deference to Elders Curdles Into a Fight Over Assets
New York Times
By Ron Lieber
November 28, 2014

Robin

Are PET scans helpful in diagnosing dementia?

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This is a good post in The Geriatrician, a blog (thegeriatrician.blogspot.com).  The post provides an overview of how a geriatrician thinks about the value of PET scans in diagnosing dementia. Apparently there is very little value so this geriatrician has sent only one to get a PET scan, despite the fact that half of his patients have dementia.

When the author says “PET scans,” he is referring to “FDG PET scans.”  I rather doubt his bottom-line would be any different if he were talking about amyloid PET scans.

The crux of the argument has to do with sensitivity , specificity, positive predictive value, and negative predictive value – statistical terms.  He refers people to Google and Wikipedia to look up definitions of these terms.  He also points to a “handy dandy calculator,” found at vassarstats.net/clin2.html.

The geriatrician says:

“[According] to the Alzheimer’s Association, PET scans to make the diagnosis of dementia are 95% sensitive and 75% specific.  Sensitivity means that if someone has dementia, the test will pick it up. Specificity means that the test doesn’t pick up other things like depression.  … While the sensitivity seems great, the specificity is the achilles heel.”

In the blog post, the geriatrician goes through the math.  In summary, he says:

“I would say that the test is useful as a rule out type of test for those who have an intermediate or low suspicion.  Not so much to make the diagnosis.  I wouldn’t be comfortable telling someone they have a fatal neurodegenerative disease when I have a 20% chance of being wrong.  Or even 8% chance.  The second point is that the test is only useful in the setting of a clinical suspicion.  You can see how the characteristics of the test change depending on clinical suspicion.  However when people talk about PET scans, they imply that maybe it would be useful BEFORE a person has clinical symptoms.  It’s not there yet. Maybe the new Amyloid PET scans but not the tagged glucose pet scans.  After going through the math, this is why I don’t use PET scans.  I think it’s more useful to hone my clinical skills than use a test to compensate for poor clinical skills.”

Read the full blog post here:

thegeriatrician.blogspot.com/2014/11/are-pet-scans-good-enough-to-diagnose.html

Are pet scans good enough to diagnose dementia?
The Geriatrician
Sunday, November 16, 2014

Robin

 

Having a “palliative care conversation”

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For the last several years, I’ve been attending the annual Jonathan King lecture at Stanford.  King had cancer and started a lecture series before he died to get across two messages to MDs:

  • they must empathize with their patients
  • they must foster a patient’s feelings of control and hope

This year’s lecture on October 21st was remarkable.  Palliative care expert Timothy Quill, MD, gave a talk about the importance of palliative care.  He said that palliative care is for the seriously ill with “a high symptom burden”, while hospice is for the terminally ill.  In palliative care, there are three thoughts:

  • we hope for the best
  • we attend to the present
  • we prepare for the worst

Dr. Quill noted that all physicians should be able to have a palliative care conversation with their patients.  The conversation includes open-ended questions such as:

  • what is the best that might happen
  • what is the worst that might happen
  • is faith important

Quill believes that “doctors should address the emotional ramifications of illness, as well as the medical treatment plan, with their patients.”

Though Dr. Quill’s lecture was very good, what made the event so remarkable is that he had a palliative care conversation with a Stanford neurosurgeon who was diagnosed last year with advanced-stage lung cancer.  Dr. Paul Kalanithi, the cancer patient, was very open about his thoughts and feelings.  I first read about Dr. Kalanithi in January 2014 as he authored an article in the New York Times about being diagnosed and wondering what his prognosis is.  It was an honor to meet him in person.

Stanford Medicine published an article about Dr. Quill’s conversation with Dr. Kalanithi.  I hope the wonderfulness of the event comes across in the article.  Here’s a link to it:

med.stanford.edu/news/all-news/2014/10/a-conversation-with-a-cancer-patient-facing-the-end-of-his-life.html

A conversation with a cancer patient about palliative care
Stanford Medicine News Center
October 22, 2014

Robin