Would You Want to be in the Box?

Rodney Warner, JD
Rodney Warner, JD

Is there anything worse than death? Well, maybe. Is a “bad” death is worse than a “good” death?

This week I watched an episode of the PBS Frontline series, Facing Death, which is about how patients, families and the medical system deal with “end of life” treatment. If you missed it, you can watch it online. The show featured four patients. Three of them were cancer patients who were treated at the bone marrow transplant unit of Mt. Sinai Medical Center in New York City.

This show really hit home for a number of reasons. I had an autologous stem cell transplant and an allogeneic bone marrow transplant to treat my relapsed Hodgkin’s lymphoma. My brother also had both kinds of transplants, in unsuccessful attempts to treat his multiple myeloma. One of the featured patients was being treated for multiple myeloma. He was a retired firefighter, 63 years old (my brother was 46 when he died).

Four months prior to my allogeneic transplant, a lymphoma specialist told me the procedure would be a waste of time and that I was terminally ill (as it turns out, I’ve been in remission for seven years as of March). I have experience tangling with the Grim Reaper, and I felt these patients’ pain. The show brought back a lot of memories.

These three cancer patients kept plugging until the very end. It’s hard to say someone can be in “their right mind” when they are so stressed, medicated and ill, but their medical choices were their own to make. All three eventually gave up trying to be cured and succumbed to their illness.

The last patient featured was an elderly woman with dementia, who wasn’t capable of deciding her own care. She has two daughters and a granddaughter. When the show started, she was on a ventilator, and the family debated whether or not she should have a tracheotomy to facilitate the ventilator, in case, when the tube down her throat was removed, she couldn’t breathe on her own. One daughter was a doctor, the other a nurse. The nurse didn’t think the procedure should be done, the doctor, and the granddaughter, did. The breathing tube was removed. The patient breathed on her own for a while, but couldn’t keep it up. The tracheotomy was done. At the end of the program, the narrator stated she’d been on the ventilator for a year.

I don’t see the point. She has end stage dementia. Her organs no longer function, without constant outside help. Does this patient become a trophy? A pet? A monument to guilt? What does maxxing out the healthcare system accomplish for this woman? She isn’t dead, but is she alive? I wouldn’t say she’s living.

A friend’s mother is in a similar situation. At the suggestion of his father, his mother underwent elective surgery. Something went terribly wrong during the operation, and it lead to massive brain damage. His mother, years after the incident, is on a ventilator, unresponsive, with round the clock professional medical care. My friend said his father wanted his wife on the respirator, didn’t want to “pull the plug”. The family went along with the decision. My friend thinks it may be guilt motivating his father, at least in part, since he’s the one who persuaded her to get the procedure done. My friend says his father never attended church prior to the accident, but has done so regularly since.

Is this the future of medical care? Want a loved one ever close to you? Just put them in suspended animation, all bodily functions medically and chemically aided for years to come, as long as there’s a constant supply of meds and electricity. Your loved one would be in a special glassed enclosure, like a piece of furniture. Did he or she have a beloved pet? For an extra fee, that can be also be put in suspended animation as well, so your loved one will never be alone.

Any time you want to commune with your loved one, just roll out the box, pop open the window, stroke his or her hair, and speak your mind. When you’re done, close the window, and roll the box out of the way until next time. You never have to say goodbye. You just have to keep paying the bills.

Sounds like a fate worse than death.

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