Time magazine rewrites an article from a medical journal that explores why minorities get more “end of life” treatment than non minorities.

Tch Tch, must stop all this expensive “End of life care” seems to be the underlying theme.

Why do I say this? The headline of the story is deceiving.
Time magazine headline:

Why Do Black Patients Get Unwanted End-of-Life Care?

Actual quote from story suggests this is not so:

Researchers found that black and white patients tended to have end-of-life discussions with their doctors with equal frequency, yet black patients were less likely than whites to understand that their disease was terminal.

reality: They understood, but didn’t agree with their doctors that they should give up.

Black patients also tended to ask for burdensome life-prolonging care more often than whites, and were less likely to have do-not-resuscitate (DNR) orders following discussions with caregivers.

The sentence adds code words that imply their agenda. It says the black patients ask for “burdensome life-prolonging care”, yet who is making this judgement that the treatment is “burdensome”? The doctor, of course. Perhaps the patient might not see the treatment as “burdensome” but “life Prolonging”.  And the paragraph implies that these patients didn’t agree with their caregivers.

Translation: They don’t trust you. They think you’ll just let them die, and you know what? They might just be right.

What’s more, black patients with DNR orders were just as likely as black patients without DNR orders to receive life-prolonging end-of-life care.

Another deception. Did you catch it?

DNR means no resusitation if the heart stops. IF you have a heart attack, this saves your life. If you are dying of terminal cancer, it does little or nothing to let you live, since the cause of death is cancer.

The article however interprets the “DNR Order” as if it implies no life saving treatment, which is not the same thing.

Just because they didn’t want CPR when their heart stops doesn’t mean that they and their family don’t want other terminal care. And, alas, the dirty little secret in many hospitals is that often the DNR order is translated as “just let them die”, so don’t give them antibiotics, oxygen, ICU or a pacemaker for a heart block when they have a “terminal illness” (e.g. cancer that might kill them in three to six months).

One well known but unwanted side effect is that this nihilism approach to treating patients once they are given the label “terminal” is why our patients don’t get the hospice care approach.

Hospice can help with a lot of the symptoms of terminal illness. Indeed, in the rural areas where I worked, they were a great help in adjusting medicine (Pain relief and relief in symptoms is their specialty, and the alternative, a “pain clinic”, was 40 miles away and required three month wait for a visit).

To get hospice care, traditionally you needed someone to insist you will die within six months. (although they have loosened the criteria in the last few years) And then, alas, you are expected to stop treatment: not just treatment that probably won’t work, but other treatment that is not extraordinary but might prolong your life.

Ah, but where do you draw the line?

I had a patient whose “hospice” nurse complained when we transfused him (gave him blood), because he had signed up with them for terminal care.

What she didn’t know is that the patient was not yet ready to die. He had a son in Afghanistan, and was trying to live to see him return home. The transfusion let him live one more month, long enough for his son to return from Afghanistan to be at his father’s bedside.

But the nurse seemed genuinely annoyed that he wasn’t following the hospice protocol of no treatment. I doubt she realized she was coming across to me as being annoyed that he was refusing to die, or that she seemed to think this was required by his signing up for hospice.

And the dirty little secret is that too often  patients, especially if they are minority patients, interpret our careful conversations trying to sign the “do not resusitate” or “do not give care that probably won’t work” as “don’t treat the ____, why waste our money on them“.

I worked with Native Americans, and most didn’t want extraordinary treatment in strange hospitals far from home, but few would sign DNR orders.

Why? Well, because one tribe I worked with had a big shot doc do an experiment on them, seeing if not treating a strain of bacteria associated with renal problems would result in renal problems. (It did.)

For many American Blacks, it is the rememberance of the Tuskeegee study, where blacks weren’t given penicillin for their syphillis to see how the untreated disease progressed.

So there is a lack of trust, and a worry that the very point made by the TIME article was true: That DNR (when the heart stops) would mean Do Not Treat at all.

Again is this worry being paranoid?

But then one of our nursing home patients chocked on some food, and had a piece of food go down into her trachea. We sent her to the Emergency Room, expecting her to be transferred for an emergency bronchoscopy.

Instead, the ER physician read her “DNR” order, documented that she didn’t want any extraordinary treatment to prolong her life, and then, to the horror of the staff, let her slowly die from obstructed breathing. When the attending checked on her, and found out what had been done, it was too late to change the order.

No, I don’t want any extraordinary medical treatment done to me when I am terminal, but I plan to have a myself or a surrogate make that decision, not a doc who sees the elderly as not needing care, or a bureaucrat who makes the decision based on the “QALY” criteria so beloved of socialized medicine.

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