Compassionate, informed advice about healthcare decision making

Archive for the ‘Palliative Care’ Category

New Drug to Help Alzheimer’s Patients? I Think Not!

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What are they thinking? How can the government approve a drug unlikely to improve the lives of any dementia patients?

I am not a doctor, but I have been around dementia patients my whole professional career as a nursing home and hospice chaplain. I also have been a co-caregiver for both my parents who died suffering from memory loss: Dad from Parkinson’s and strokes and Mom from Alzheimer’s.

I read about this new Alzheimer’s drug, Aduhelm, in newspapers and medical journals and was saddened by the recent approval of the drug. It was approved by the FDA even though there is no evidence it helps patients. An outside panel of experts voted against approval. Three of that panel’s members have now quit in protest.

What was the reason for them to recommend AGAINST approval? The patients in the clinical trial showed no improvement. Some did appear to have reduced amounts of amyloid clumps in the brain which are often found in Alzheimer’s patients. But less clumps in the brain have not been proven to lead to improved cognitive functioning.

The drug is extremely expensive for both the patient and Medicare, over $50,000 a year. Its use requires many PET scans, also extremely expensive. All this for a drug that shows no evidence of improving the life of the patient.

If you or someone you love has Alzheimer’s, don’t listen to me. Talk to your own doctor. But I suggest reading the criticisms about Aduhelm before making a decision on it.

Think of making this decision like you would with any other medical treatment. Do the benefits outweigh the burdens? In this case, there appears to be no benefit and quite significant burdens both financially and clinically.

Who can blame demented patients or their families for wanting to try something — anything — that might slow the losing of one’s mind? This drug is not one that offers such a promise.

Might the $50K be used for something that we know already helps patients or caregivers? What about respite care to give the family a break or in-home health aides? How about expanding Medicare coverage for palliative care for dementia patients?

Do these patients and families need hope? Absolutely! But not false hope. While the medical research continues, let us offer compassion and support to these patients and their families. May their burdens be eased by ways in which we already know the path.

“Do Nothing” and “Last Minute Care”…Oh my!

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There is a lot of misinformation out there about palliative care and hospice. I just read an interesting blog post. In it, Dr. Cynthia X. Pan describes how she entered “palliative care” in Google Translate and got Chinese characters back. She then translated those characters back into English, and it came back: “do nothing care.”

Wait… there’s more. She did the same thing with “hospice” and it came back as “last minute care.”

This not just a problem with Google Translate or the Chinese language. A lot of people think this about these very appropriate and helpful medical care approaches. I remember back in my nursing home chaplain days when I was just getting my start talking to patients and families about “No CPR” orders I learned an early lesson.

Families and patients hear, “No Care” when you say “No CPR.” They might say, “You mean when mom is dying you are going to just do NOTHING!”

We do lots for dying patients

So, I started leading the conversation with “We do lots for dying patients. We keep them clean and dry. If they are having a hard time breathing, we clear their airway and give them oxygen. We give them pain medications. You can be here to comfort your mom, even get up in bed with her. We just are not going to beat on her chest when her heart stops. That is what the ‘No CPR’ order is about.”

But like Google translator many people hear, “palliative care” and think “do nothing care.” Palliative care is very aggressive keeping a patient comfortable and meeting social and spiritual needs.

Likewise, so many people think hospice is for the last day or two of life, even though Medicare offers to cover a patient for six months (or more). Late referrals are a real problem in hospice. We do our best work if we have, at least, weeks if not months to care for a patient. More time means better pain control, getting the most appropriate equipment into the home, more time for social and spiritual support.

So help me get the word out there. Palliative care is LOTS of care and hospice care is MONTHS of care.

Update: Google Translate seems to have fixed both translations. Progress!

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