The President just authorized a regulation to pay doctors to discuss end of life counseling during your yearly physical.
Well, good. I doubt any doc can do a true “in depth” discussion of end of life issues at the end of a 45 minute yearly physical, but since I’ve rarely been paid for the many long complicated discussions about end of life care I’ve held with families and patients, it’s nice to know that maybe we docs will be paid for our time.
Personally, I am leery of overtreatment in hospitals of people who are obviously dying, and often I have to help the family admit we can’t reverse the inevitable, so let’s let the person die in comfort with family around them.
But some decisions about end of life care are subtle and may not be as straightforward as you think, which is why I dislike the “living will” concept.
Does “no feeding tube” mean if you don’t want to be kept alive with tubes if you are in a coma, or does it mean letting you get malnourished if you are temporarily unable to swallow? Does “incompetence” mean complete dementia, mild senility, or merely a mild delirium from an acute infection or from medicines given for pain?
That is why, when my mom joined an HMO for “Medicare advantage”, we had her do a “health care proxy” instead.
Living wills work fine for straightforward problems. Have terminal cancer or end stage heart disease? You might want to insist on “No CPR”. If you have multiple system failure, stopping treatment might be indicated. But for many non terminal cases, it’s probably better if you appoint a proxy, preferably someone you trust to follow your wishes and who knows a bit about medicine.
This is actually what most folks do, according to a PEW survey, they talk it over with relatives.
And few think that “everything” has to be done in every case. I don’t have a problem with this either: as a Catholic, we know we can refuse “extraordinary care” that prolongs dying or even if the good it will do will be outweighed by the treatment itself.
I don’t hold with a lot of extraordinary treatment for the fragile elderly, or for those whose bodies are at the end of life. However, the dirty little secret is that sometimes the “expensive” alternative is less costly in the long run.
Take one example: President Obama’s grandmother had cancer when she broke her hip. They chose to fix it, but she died a few days later of heart problems. He mentioned that maybe that wasn’t the right decision, but maybe just “pain relief” or comfort care would have been better.
Or maybe not: Because the dirty little secret is that dying with a broken hip that hasn’t been fixed is miserable. Every time you move, you have pain, and if you don’t move the patient they get bedsores and pneumonia. Since his grandmother wasn’t “terminal”, she might have lived miserably in pain for a month or two, whereas by fixing the hip, (if she hadn’t died), she could have gone home and been cared for in moderate comfort for the final months of her life.
Of course, there is a “third alternative”: just over-sedate her until she dies. Yes, there are times we need “terminal sedation” to relieve pain, but even then, I’ve had a few patients regain consciousness and live for months after we relieved their pain.
Even stopping treatment is not always a death sentence- often “ordinary” comfort care gives a longer and better life for a patient with cancer or end stage heart or lung disease. But this doesn’t mean “no care”, since sometimes the person can make it through the acute illness despite your predictions and get a few more months (or even years) of life.
The real reason I worry about the “fill in the blank” approach to living wills is another problem: The deterioration of medical ethics.
Too often, modern ethicists make “cost effectivenes” the criteria for your treatment. Right now, you can sue the insurance company, so you have options, but what about when someone in the government decides you don’t meet the “criteria” for your treatment? And to make things worse, some of these criteria decide with a mathematical formula based on your quality of life.(see QALY and Daniel Callahan’s books).
This, not “living wills” is what Sarah Palin calls “death panels”, and they are coming soon to a hospital near you.
So the problem is not “living wills” per se. Please think about these things, and arrange for your wishes to be followed.
There is one other problem with this push to “implement” living wills and clarify “end of life care”. That problem is that a lot of minorities won’t sign such papers, and are less likely to have living wills.
No minority is uniform across educational or socioeconomic or even cultural lines,Â but a lot of inner city Blacks remember the Tuskegee experiment, and having seen how my colleagues treat poor minorities, I can understand why some of these patients might not trust signing a paper that lets a stranger decide what to do.
The problem is that as the medical profession is slowly changing from the Hippocratic ethic (which puts the patient first) and with an ethic where cost control becomes important, something gets lost.
But then, we also have a rejection of the Hippocratic ethic against euthanasia being pushed in too many medical schools, (for example, some schools have their students take a newfangled oath that might include phrases such as
If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.)
Huh? So taking a life is okay, if you pretend to be humble and pretend killing doesn’t really mean you are “play at God”.You only kill for really, really good reasons, right?
Of course, a well trained physician won’t simply give you a shot: too obvious. But any doctor worth his or her salt knows you can easily just sort of “overdose” the patient into death.Â Most of the “euthanasia” deaths in the Netherlands that aren’t counted as “euthanasia” because they are this type of killing.
Ah, but so what? American Doctors still can be trusted, right? Yes, if you know and trust your doctor, and if you aren’t seen by a strange doctor who might see you in an emergency.
I’ll give another anecdote.
Once I was working at the Emergency room of a hospital that served Native Americans. We had an elderly lady transferred back from the big city because she had a stroke, became confused, and only could understand Lakota. We had plenty of Lakota nurses, and agreed to the transfer. A few days later, she had come out of her delirium but still had trouble swallowing, so it was decided that she needed a (temporary) feeding tube to get her through the acute phase of the stroke, from which her prognosis to recover was fair.
So, at the change of shift, the attending physician came down and said he just put in a feeding tube and asked us to check the placement on x ray so he could go home.Â I was going off shift, so he asked my replacement, who was a surgery resident, who usually worked at a big inner city hospital in Baltimore. His reply was, “why put in a tube? Why not just give her morphine, ha ha” (he was suggesting we just sedate her to cause her to die).
We both stood there aghast, and the attending physician asked him to repeat his comment, which he did.Â The attending physician then just mumbled that American Indians didn’t tend to like it when doctors killed their elderly and left, telling the nurse he’d be back to check the x-ray in an hour. I left, but before leaving informed the staff to “watch this guy”, and for good luck told my neighbor, a member of the American Indian Movement, to keep an eye out for him.
Needless to say he never came back to work at our hospital, but I always wonder: How many black grandmothers in Baltimore died because he “only gave (them) morphine, ha ha”?
Nancy Reyes is a retired physician living in the rural Philippines.