10 March 2010

Playing god

Quote from a Kiva lender:
My vote goes to “the ultimate human right of the 21st century.” Death is, after all, inevitable. Making choices about one’s last days should be nobody else’s business, most certainly in terminal and other untenable situations. Preventing a person’s choice to lessen their suffering is simply inhumane. We treat our pets better than that.

My first career was as an ICU nurse dealing with end-of-life situations as part of my job description for 20 years. Plugging somebody in to artificial "life-support" technology is certainly the act that would defy “god’s plan” (if there was a god and if we could somehow be privy to the minutia of that plan), not un-plugging them in clearly hopeless circumstances. Seeing it the other way around requires the same mental gymnastics people play when they (claim they) believe they survived being hit head on by a drunk driver only because god was watching over them. (Umm, why didn’t god take the drunk driver’s keys away or have them take a different route and prevent the crash in the first place?)

The argument to “not play god” is a euphemism for the rigid denial of another's right to choose anywhere along the life-death continuum: not placing one’s extremely premature infant on life support; refusal of a medical procedure; or end-of-life choices such as assisted-suicide. “Not playing god” is based in a paternalistic belief system where, ironically, the person/group arguing against assisted suicide (in an attempt to bolster their religious, and often political, position) is actually “playing god” over the individual’s right to self-determination.
Another lender has an experience worth sharing too...
About nine years ago I was diagnosed with The Big C...(I wont go into icky details of what kind!) What I think a lot of people dont realise is that a life lived in extreme pain is no life at all...that pain becomes all consuming and there is really no point to your existence at that stage, you just become a sad shadow of the person you used to be and face the prospect of living like that till you die. I remember very clearly telling close friends that if the last round of treatment didnt work I would be ending it. And then facing the sad reality that I would have to die alone as my friends would be guilty of a criminal act (in Australia) if they kept me company at the end. Well, thanks to modern medicine it didnt come to that (obviously!) but there is something very wrong when a person can't even choose to die peacefully and amongst friends.
Then more come in...
I do think that being able to choose to die with dignity is an ultimate human right. The circumstances where one might come to wish to choose this are highly varied. In the US, at least, we seem often to act as though death is optional, so we don’t need to talk about it or prepare, or think about the “under what circumstances might death came to be far preferable to me than to continue living?” I for one, have often said, borrowing from elsewhere, that I would like to have a locket with a pill inside, where the locket says, “If you can’t remember what this is for, take it.”

Thought to share two films I know of that portray some aspects of this issue. Neither is done as a documentary, and there’s a lot going on in them to carry the narrative thread along. I liked the first better than the second, as I recall, though it has been a while.

The Sea Inside
(Mar Adentro). Spanish film based on the life of Ramon Sampedro, a quadriplegic man who waged a 30 year campaign to be able to end his life with dignity.

Barbarian Invasions (Les Invasions Barbares) Set in Canada, about a man with terminal cancer who wants his estranged son to help him end his life. Fiction.

- Anna Quindlen’s novel, One True Thing, has a protagonist who goes back home to care for her mother, who is dying of cancer, and ends up being charged with the mother’s murder. Quindlen in a wonderful writer, and explores a lot of emotional and relationship territory in this work.
- Lucy Grealy’s AUTOBIOGRAPHY OF A FACE, and her friend, Ann Patchett’s bio of Lucy, TRUTH AND BEAUTY. Lucy had Ewing’s Sarcoma at age 9, and radiation, chemo, and 30 operations to remove the cancer. The multiple efforts to reconstruct her jaw and face were not lasting. Lucy died at 39, her death ruled an accidental overdose. She had spiraled into drug abuse and had tried several times to kill herself. Grealy’s book was absorbing, well written, and an eye opener. Patchett’s book is on my “to read” list.

As a related but separate resource, I’d also like to recommend DYING, A NATURAL PASSAGE, by Denys Cope, RN. A friend sent the first edition when my bonus dad, was dying of pancreatic cancer. He also had some dementia. Unfortunately, the book didn’t arrive until the day after his death. I wish I’d had it months earlier and would have felt less at sea, despite his being in hospice the last few months. Still, it was very comforting, in that it affirmed some decisions we made and things I observed. I’ve bought copies at bulk rates directly from the author, and gradually given them away as friends have coped with a loved one in the process of completing a life’s journey. I also recommend it as something to have on your bookshelf long before you need to reread.

Cope is a long time Hospice nurse who feels that most folks (at least in the US) are about as knowledgeable about death and the process of dying as we used be years ago about pregnancy and childbirth. Lack of knowledge often results in fear and distress, on the part of both the dying person and family and friends. The first edition was a fast read. Helpful when the dying causes time pressures. Good to read before it’s needed. Cope’s website
Book also available on Amazon.com.

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