Dr. Paster: Thank you for your discussion of end-of-life care for an Alzheimer’s patient. It reinforced how inappropriate so much end-of-life care is for anyone with dementia. That fact that your mom’s doctor didn’t stop torturing your mom until you uttered the “S” word (sue), is amazing. You’re a doctor so you would think that they would respect your wishes. Gosh and golly.
I’m a lawyer. Simply telling the doctor to stop does not absolve them of their responsibility to treat the patient. And some juries may just find that not doing everything possible to prolong life is malpractice. Remember the “Death Panels,” that cockamamie idea that to discuss end-of-life care in your doctor’s office meant that some committee would allow you to live or die.
The legal profession seems to be perpetuating an environment that demands physicians employ aggressive, defensive medical intervention as the standard of care.
I had such an experience years ago with one of my parents. It made me livid. Blessedly my spouse of 40 years who suffered from dementia in her last few years was allowed to pass in peace. She was not denied the palliative care that should be all of our rights.
Good job doc in bringing up this important topic. – KG
Dear KG: You are right. Absolutely right. The default in legal suits is “you haven’t done enough to save Mom” rather than “you really helped Mom die a peaceful death.” Who wants to die with tubes in every orifice? Not me.
While people think that everyone who stops drinking should have IV fluids, that’s just not true. Think about it. IVs are uncomfortable and if a patient moves around then they might need to be restrained to keep the IV from coming out. There is good research showing that end-of-life patients grimace more and appear to be in more distress when they have an IV.
The problem here is twofold – doctor and patient. Doctors often do too much thinking that they will “save” a patient when they should be thinking about comfort. And families often think too much that they want to “save” their loved one when they should also be concentrating on comfort.
The problem is an education and training issue on both parts. More than three decades ago when I went to medical school there were no classes on palliative care. Today there are classes but they’re meager. With few exceptions, U.S. medical students learn more about snake bites and tropical diseases than they do about how to comfort a patient in their final days. Who’s in charge of this curriculum anyway? I suspect that when patients and families demand better end-of-life care that the schools will start providing more of it. Until that time it’s technology that rules the roost, not comfort.
But back to how you can protect yourself: It’s called a power of attorney for health care. Every state has one. You don’t need a lawyer. Just ask your doctor for one or better yet Google it yourself (search POA health care and then the name of the state. For example – POA Health Care Wisconsin gets you the one for my state.)
Then fill it out and have it witnessed by two people who are not mentioned in your will. Two neighbors or friends will do just nicely. No need to have it notarized. No need to pay a lawyer either. Then bring it to your doctor to have it scanned into your electronic medical record; our homegrown one, Epic, has a dandy file that it scans into. Then it’s there forever – no need to search that safety deposit box should the need arise.
Next step – have a good conversation with the person you’ve designated to make your decisions. If you have kids include all of them, and I mean ALL of them, in that heartfelt conversation. There is so much that goes on at these critical junctures that you want all hands on deck.
Tell them if you want drugs for pain, even though they may knock you out. Tell them if you want a feeding tube, something I suggest you never ever have for someone suffering from dementia. They just prolong misery.
Tell them in no uncertain words if you want everything done or not.
My spin: The advantage of the POA is that it keeps the lawyers away by designating who’s captain of the ship when you’re not. Is it ironclad? Of course not. Only death and taxes are ironclad.
Dr. Zorba Paster is a family physician, professor at University of Wisconsin School of Medicine and Public Health, and host of the public radio program “Zorba Paster on Your Health,” which airs at noon Wednesdays on 91.1 FM, and noon Sundays on 91.9 FM. His column appears twice a month in The Spokesman-Review. He can be reached at firstname.lastname@example.org.
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