Tuesday, September 8, 2009

Good Intentions & Bad Decisions

Something people need to consider when it comes to extending the life of a family member is, just because it can be done, should it be done? Is it what the patient would want?

Recently I've assisted in placing defibrillators in people who cannot walk, eat, use the bathroom, or get out of bed unassisted. And never will again. Because they're not only so elderly that they are incredibly frail, and weakened, but mainly because most of who they were isn't there any more.

Nobody wants to think about a loved one having dementia so severely that they no longer recognize their family, can't care for themselves, or communicate. It's something I personally consider worse than death. Day after day, sitting in a chair or lying in a bed, not knowing anyone, developing bed sores, totally dependent on others to feed, dress, and clean you. Think about it: nothing to look forward to, no comprehension of what's happening, just a steady degeneration into a shell of what used to be a vital, active person.

Why, if you love that person, would you choose to ensure that someone will have to endure this for another one, two, or ten years? Why do you want to have a device in them that will deliver a substantial unexpected shock, or series of shocks, to them when you have decided to list them as DNR in the medical record? Do you really think that's the caring thing to do? Is it what you would want for yourself?

Someday, perhaps that won't even be an option. Many of these devices are well over $10,000. If we get to the point where we're looking at cost/benefit models for getting a procedure, I'd guess a lot of these defibrillators won't be going to people we do them for now. I don't particularly like that approach. But I do recognize none of us are supposed to be here indefinitely. And at some point, if we last long enough, quality of life will reach the point where most of us would rather not be here. Work in a hospital long enough, and you'll see people in conditions you'll never see on TV drama. Their quality of life is almost zero. Feeding tubes, IVs, bruising, bleeding, and opportunistic infections; blood clots, bed sores, poor circulation. Sooner or later, everyone goes. The lucky ones go fast, and sometimes even in their sleep. For most of us, it will be a long, slow decline.

Think long and hard before making that decline harder and longer for someone you care about.


Firehand said...

Watched my mom's mother degenerate into dementia. And, because she only needed feeding- no other life support- it lasted about three long years.

strandediniowa said...

"a long slow decline." Absolutely.

This is one of the most difficult points in person's life. Both the person and those who watch suffer, each in their own unique ways.

Thanks for sharing with us the perspective from a caregiver.

Anonymous said...

Best advice you can give: Write a living will, tell your loved ones what you'd like. Put your opinion on the topic into writing. Make sure your next o' kin know what you'd want done.

My grandmother struggled on for quite some time. My mother was torn as to which would have been more selfish on her part; To continue the treatments and family drama and doctor visits, or to "Pull the plug, sit back and collect a fat life insurance check?"

We took care of my sick grandma in our own home for over a year. My aunt stayed during the day. I came home from school and changed her bedpan. My mom came home from work and fed her. My father turned her over to prevent bedsores. The work itself was exhausting and stressful. Distant relatives called us selfish at any mention of a hospice or nursing home. They came up with excuses why they couldn't keep her. Then at the funeral they claimed we had been angling for inheritance money the whole time.

Funny, if they'd had known grandma better, they'd had known that her house was falling in, and she'd only had 100K in life insurance. She spent the last ten years of her life surviving on social security. the 'priceless antiques' were all things she'd bought at yard sales. Mildewed and warped by the humidity. I spent my whole youth mowing her yard. SHe'd pay me with checks that I never cashed.

My momma threw her the prettiest funeral a 100K could buy. Pearl white casket and the biggest headstone we could get. The pallbearers (myself included) all wore rented tuxedos.

MauserMedic said...

Firehand, SII, Anon;

One of the worst aspects of aging, I think after two decades of health care experience, is first the loss of independence; then the loss of self. I can think of few things worse.