Surviving (and Dying) on
Your Own Terms in
Today's Modern Medical World
Dan Morhaim
(Johns Hopkins)
- Every day, mustering all his strength and will, he would slowly move his right hand from his side up to his neck, where the respirator tube was connected to his tracheotomy (a hole in the front of his neck into the trachea, where the tube was inserted). This would take hours, as his hand could only move inch by inch. When he'd reach the tube, he'd work to disconnect it --- a suicide attempt. He wanted to end his suffering, and this was the only way in which he could communicate his wish. After the first few times, the staff realized what was happening. As soon as the agonizing effort once more brought his hand near the tube, a nurse or resident physician would run over, quickly pull his hand down to foil his effort, and the process would start all over again.
Morhaim comments: "This patient's attending physician was famous for never 'giving up' on his patients. He subjected them to every conceivable treatment, long after any hope of recovery was possible." Message: be damn sure your doctor knows what you want. If he is the kind to never "give up," find another one who is willing to do so.
Dr. Morhaim wants you (right now) to prepare a "living will" or an "advance directive" --- a document that will tell people what to do as you lie dying. He insists that neither you nor I have a notion of when the moment will come (accident, stroke, heart failure, kidney failure) when we may be in but no longer are masters of our bodies.
Then he asks: If, after that trauma, you show little or no chance of recovery, what does your doctor do. What does your family do? Do they merely make you comfortable? Or do they keep you going --- pumps, catheters, invasive machinery --- as long as possible?
There you are, in the prison of your skull, with needles and tubes and burbling machines all around you, as fewer and fewer people come to visit. You are left alone for months and your only companions are the nursing home workers who come along a few times each day to vacuum you up and turn you over. You get to lie there, dead to the world (but not to yourself), wishing like hell you had signed a simple document that would have permitted them to bail you out when your body irrevocably went out-to-lunch.
Dr. Morhaim offers some samples of documents you can sign which --- if put in the right hands --- will let them turn off the beepers and pull the tubes and let you go in peace. One of these documents I found to be compact and direct is one valid in the state of California. It reads:
- I do not want my life to be prolonged if (1) I have an incurable and irreversible condition that will result in my death within a relatively short time, (2) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (3) the likely risks and benefits of treatment would outweigh the expected benefits.
It is important for you to know that all this documentation is not foolproof. A dingbat relative can show up and upset the applecart. The vote of just one of your family members to keep the campfire burning will force you to stay around long after you want to be gone. Thus you should be sure that the lawyer who is in charge of your 'living will' is aware of all the crackpots in your family, and is prepared to finesse any demands that you be kept around long after the lights have been dimmed and the furnace is ready to be shut down.
If you have any questions about all this, you might want to get hold of The Better End and read Chapter Three, telling of Alberta Cole. When she was old and frail, because of a small stroke, she fell in her bathroom and fractured her hip. The ER doctor on call noted on her intake papers "LOL FOF." That means "Little old lady, found on floor." Morhaim comments: "That abbreviation is a stark indication of the frequency of emergency room patients in similar circumstances."
Alberta had no "advance directive," and during the continuing emergencies that came after her first fall, she was treated repeatedly in ERs, including catheterization, naso-gastric intubation, intravenous fluids, medications, and CPR --- cardio-pulmonary resuscitation (the author advises us that CPR is effective only in 4 - 6% of the cases)
One of her daughters threatened to sue the hospitals and the doctors if her mother "didn't get the best of care --- everything should be done to save her." (That daughter soon disappeared from the scene, no longer visited her vegetative state mother.)
Alberta soon enough developed urinary infections and bedsores. Ultimately there was nothing left but "Alberta lying in bed, moaning occasionally, sleeping most of the time, sometimes being restrained to prevent her from pulling out the various tubes."
The family paid for the one sister's intransigence. For the twenty-two months that Alberta survived, what money she had saved during her life went up in smoke. The hospital costs "were over $60,000" and the nursing home cost "$4,000 per month." "The total, well over $150,000, was much more than the entirety of Alberta's health care expenses during all the previous years of her life."
The family paid dearly for her twenty-two months. And the human cost?
- Is there a way to quantify Alberta's suffering? She underwent multiple invasive procedures and suffered from their complications. She endured numerous transfers between her home, the ER, the operating room, the ICU, a step-down unit, and her nursing home. Through it all she was unable to understand what was happening, nor could she communicate her thoughts and feelings. We have no way of knowing whether this is what Alberta would have wanted.
"We do know, however, that most people do not want to suffer," concludes Dr. Morhaim, "and that they do want to leave an inheritance for their children, grandchildren, nieces, and nephews."