The right eloquence needs no bell to call the people together and no constable to keep them. ~ Emerson

Friday, August 21, 2009

My Grandmother's Death Panel

Okay, I’ve Seen One. What the Hell Is Everybody so Frightened About?

My grandmother’s Death Panel convened this past Tuesday, August 18 at 1:00 PM EST. It lasted for approximately one hour. The members of the panel consisted of my grandmother, her primary physician, my wife, and me.

Here is the background –

My grandmother is ninety-nine years old. She is blind in one eye and has significant hearing loss, for which she wears hearing aids. She suffers from decreased mobility, such that she requires a walker just to move about insider her house. When walking outside, any trip longer than a few dozen steps requires a wheelchair.

Her mental faculties are sharp and her memory is excellent. Her heart, lungs, and other internal organs are all in good shape. She is a kind and loving soul, who adores her grandchildren and great-grandchildren and adored by them. Every doctor that has examined her recently agrees she easily has another one to three years of life. Her primary physician believes she could even have as long as another five to six years.

About six months ago, my grandmother noticed a change in her bowel habits. There is a history of colon cancer in her family but she has slacked off on regular checkups in recent years, assuming age was as likely to take her as anything else was. Her gastrointestinal specialist recommended a colonoscopy. That procedure discovered a tumor growing in her rectum. It is malignant, grown deep into the rectum wall, and occluding a substantial part of her bowel opening. On the plus side, there is no sign of the cancer having spread.

My grandmother faces three options. First, she can do nothing, in which case all her doctors agree she will die in four to six months from a locked bowel, a particularly agonizing form of departure.

Second, she can have the tumor surgically removed. The advantage of surgery is that it eliminates the cancer entirely. Her rectal surgeon, the best in the city, believes she can repair the rectum without requiring my grandmother to undergo a colostomy, although this is not certain. The drawbacks are that it is the most radical solution and could involve extended healing/recovery time, not to mention the possibility of dying on the operating table.

Finally, she can undergo a regimen of chemotherapy and radiation. The advantage of radiation is that it is far less radical than surgery, while leaving that option as a fallback if radiation does not work. The drawbacks are that it will make her sick and weak. It also will not cure the cancer – the goal is simply to shrink the tumor sufficiently to relieve her current bowel problems and improve her quality of life for her next few remaining years.

Her rectal surgeon is convinced surgery will be less hard on my grandmother than radiation and chemotherapy.

Her oncologist and radiation specialist are convinced radiation and chemotherapy will be less hard on my grandmother than surgery.

Her primary physician favors surgery. He believes her chronological age is deceptive, saying her body is as strong or stronger than most eighty year olds. He believes she can survive surgery easily and will recuperate fully in a nursing home in four weeks or less. He likes removing the tumor quickly and completely rather than slowly and partially. He also pooh-poohs any inconveniences associated with a colostomy bag.

He believes it is best to do surgery now, rather than save it as a backup plan, because my grandmother is currently in such good shape overall. He fears that if she waits until it is determined radiation cannot shrink the tumor sufficiently and/or her bowel becomes fully obstructed by the tumor, then instead of elective surgery on healthy, quickly healing tissue, it will become emergency surgery on inflamed, slowly healing tissue.

After listening to all sides, my wife leaned in favor of surgery and I leaned in favor of radiation and chemotherapy.

The prospect of radiation and chemotherapy frighten my grandmother. She saw how sick and weak these treatments made my father, albeit for esophageal cancer, even though they very effectively shrank and eliminated his tumor. She does not fear surgery, although she does fear needing to wear a colostomy bag, based on the experience of her sister many years ago.

Every one of her doctors made it clear there was no right or wrong decision in this matter. We all promised to honor her choice, whatever it may be, and do whatever we could to help her in it to the best of our abilities.

Two days after her Death Panel adjourned, with much agonizing, my grandmother chose to pursue radiation and chemotherapy treatments, with surgery as a possible fallback option.

Her primary insurance is Medicare, a program run by the federal government. Her secondary insurance is with Anthem Blue Cross/Blue Shield, a private company.

Having watched someone I love dearly go through this process, I entirely fail to see what some people are so frightened about? No actuaries swooped in to tell my grandmother she was too old or unproductive to receive treatment. Does anybody really think widening Medicare or augmenting it with another public option would drastically change this? I do not see why. In my experience, the larger the pool of people paying in, the more insurance companies can afford to subsidize risky procedures and patients.

No social workers circled above like vultures, counseling her to consider euthanasia or pressure her doctor to provide physician-assisted suicide if requested. The only argument was over which approach would minimize her discomfit and maximize her remaining quality of life. We do not trust the federal government to do this but we trust for-profit private companies? If so, I believe we are placing our trust in the wrong fiduciary.

Yes, it was true that her age and unavoidable impending death was a factor in terms of what was best for all. Are we really violating the concept of a “Culture of Life” if we did not consider her in the same way we would consider her if she was a child, a young adult, or a middle-aged woman? This defies common sense to my mind.

You cannot possible read the above without realizing how difficult and complex a decision this must have been for a ninety-nine year old woman to make. It was certainly difficult for my wife and me to sit through with her. We relied on her doctors for not only their textbook medical acuity but also their human experience, values, and wisdom. Why the extra time they took with her on this should not be reimbursable to them is beyond me.

I understand the fears many are expressing over healthcare reform legislation but when we let our fear of future inhuman treatment stand in the way of helping our fellow human beings right now, it seems obvious enough that we have left the path of wisdom.

If I am lucky and unlucky enough, I may someday face the same end-of-life decision my grandmother now faces. I see no reason society will not be permit me to face it with the same independence as her and I hope I can do so with the same amount of courage and optimism she has consistently displayed.

What I do fear is that I will not have is any way to pay for what I choose unless something happens soon. That would be the ultimate death of individual autonomy. That would be the ultimate Death Panel. And all of us, in the here and now, will have been the choosers.

Let us choose at least as well for ourselves tomorrow as we chose for my grandmother earlier this week.

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