h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

End of Days

I have just finished reading a collection of essays titled _At the End of Life: True Stories About How We Die_ edited by Lee Gutkind. The essays have been written by doctors, nurses, chaplains who work at hospices and by the relatives who have witnessed the death of loved ones. Nobody wrote from the point of view of being a resident, although one woman doctor decided to experience being a resident for several months as part of a worthy attempt to put herself in her patients' shoes.

It occurs to me that I have never met my doctor. My interface with my doctor is a very intelligent and compassionate PA (physicians' assistant) who is empowered to make all the routine decisions regarding my case. Debbie and I have had several thorough going discussions regarding my advance directive and where I draw the line concerning my quality of life. This dovetails with the book. Far too often, it seems that crucial decisions regarding end-of-life care can be made on one's behalf by a single person who might have a religious ideology, or who may worship heroic measures. Or it may be a business decision. One essay written by a nurse in a major surgical ward describes how a woman was brought to her ward who had had unsuccessful surgery. Not botched surgery -- her illness was simply too far advanced for the surgery to do any good, although the surgeons didn't know this until they "went in."

She should have been placed in the ICU, and would have, but for her DNR form. The form specified no heroic measures, and so a business decision was made not to spend ICU resources on her. Her spouse was too much in shock to advocate for her and so she wound up in the surgical ward, where there were insufficient staff resources to monitor her constantly. It was not a happy story, but it makes a good warning for anyone who is walking around feeling immortal.

Make your will, tell your doctor how you feel about so-called heroic measures, account for the disposal of your body, and kiss your relatives every day. That way, when Death taps you on the shoulder (EXCUSE ME...), you can face forward and have the experience instead of panicking over things unfinished. Well, there are always things unfinished -- you may not have made it across the street -- but you know what I mean. You do not want somebody else making those decisions.

I had not realized that the hospice system is so young. It began in England in the 1970's and migrated to the US approximately a decade later. Being admitted to hospice doesn't necessarily mean going to a special facility; E, who troubles me on so many levels, is on hospice. She is visited by a hospice nurse once a day, to whom she turns in pages of complaints about how everyone yells at her and nobody comes when she calls. The nurse performs tasks, such as bed-bathing, that the regular staff don't have time to do, and liaises with the nurse on the hall. I presume that if E's condition slides again, then a hospice nurse will spend more time with her.

The raison d'etre for modern hospice was that some response was needed to the surge in medical technology. Up to the middle of the last century, medicine hurled itself full strength into the battle to rescue and heal the patient. Medicine must needs keep the patient alive at all cost. Then, within the span of just a few decades it became possible to prolong the life of a body indefinitely. From this came the concept of brain death, and, consequent to the case of Karen Ann Quinlan, the right to withdraw life support from a person in a "persistent vegetative state."

Also, with the emergence of a business model of medicine in the US, being kept alive at all cost took on a terrifying literal meaning for families who incurred huge debts from those heroic measures. I suspect that the only patients kept in a persistent vegetative state these days are those awaiting organ harvest.

So. Have you thought about what constitutes minimum quality of life for yourself?

When my husband was told his life was now measured in weeks, not months, St Giles Hospice (a charity hospice local in Staffordshire, UK) was immensely supportive. He had a liaison who visited regularly to go through any problems, answer questions, etc. There was no requirement for physical care at that point, in fact he was able to get up and function more or less normally until the very day he died (8½ days after being told it was coming soon). The liaison reassured him that if he became bed-bound, he could continue to live at home as they would send in staff and the burden wouldn't fall on me (his concern, not mine). We talked about a bed in the sitting room, assistance with washing, etc, just general practical stuff, and it left him feeling a lot happier with what was coming. I think that was every bit as important as the physical care he never needed, and I continue to support them as a charity for that reason.

Sorry, that was longer than I thought it would be! I meant to just say how important hospice care is and thank you for another interesting journal!

Deb

[Amy P]

Minimum quality of life?`No, haven't thought much about it, but I know my mother has, and has told me that if she ever turns into a 'vegetable' she'd like to have my assistance in committing suicide.

A pity active death help is illegal in Sweden.

But do you have the equivalent of an advance directive that will entitle you to turn down those so-called heroic measures on her behalf?