Living wills and POA

[SumDay]

I was just in this thread talking about long term care insurance.

It got me thinking of the last days of my parents' lives, and how unbelievably stressful it was dealing with the nursing home and hospital.

Both had living wills and health care directives and I had full POA on each. They might as well not have - I had to fight tooth and nail to have their wishes respected.

For example, my mom was 92, paralyzed from the waist down from a stroke, she was suffering from congestive heart failure, and Alzheimer's, and couldn't even remember that my dad had died. Every time she passed gas they rushed her to the hospital. They spent thousands of dollars of Medicare $$ to keep her in physical therapy. She was private pay, so I'm pretty sure that's why they were so fond of her. I had to threaten to sue to get her into hospice and stop rushing her to the ER for tests, etc.

DH and I are thinking of writing a narrative about what we consider to be quality of life, just to make it easier on our kids when battling with the medical profession. For example, mine would say "if you have to use the word DIAPER in the same sentence with my name, then, please don't treat me for anything, EVER."

Anyone done anything like this? Think it would be helpful?

And what experiences have you had with enforcing living wills and health care directives? Just wondering if my cases were isolated.

 

[grumpy]

Melbay,

Check out an organization called "Compassion and Choices". This group lobbies for legislation that ensures that people's end of life care choices are respected.

 

[rodi]

My mom extubated herself (yanked out the vent) so she could croak out DNR! D N R!
That got their attention.
She had terminal cancer and wanted extraordinary means limited. She'd agreed to intubation for a surgery and they never pulled the vent afterwards... she was in the ICU.
After she painfully yanked out the vent when they weren't looking, her wishes were honored. She died the next day.

 

[H2ODude]

There was an article on this in NYT (sorry, can't find it) but the comments from readers read like a long long catalog of situations similar to yours. Once in chronic failure, the sooner you can get into a hospice the better in my opinion. That's what we did with my parents, in our home. FIL? DW and BIL left him in wonderful ICU to be tortured for a month before the hospital was the one to recommend hospice, where he lasted less than a week. Would have been far better to have just started there and eliminated all the suffering and likely $50-100k of "care." Or revenue. But that was really because of failure of DW and BIL to make those decisions. I get it. But my wishes are clear. I know there's reference in other posts to article on how "doctors die differently" forgoing all the extensive invasive care. I guess if you see death and futile fights against it for your career, you choose not to go that way.

 

[JOHNNIE36]

Boy oh boy, what a thread. I just got out of the hospital (Saturday) from having full knee replacement. While there, I was asked numerous times about living wills, POA's, directives, etc. I'm just answering YES to everything and now I beginning to wonder if it all does any good. Can medical people just do what they want? The foregoing posts were disturbing.

 

[SumDay]

Can medical people just do what they want? The foregoing posts were disturbing.

The ones caring for my parents certainly did. My 85 year old father had a stroke at the top of a flight of concrete stairs, fell down them, and lived for 13 days after. He couldn't swallow, eat, talk, and was basically in a coma. The CT scans showed serious brain bleeding, and I knew that anything less than a full 100% recovery would make him eternally angry with me. A doctor and a nurse both said to me "you know, you're starving him to death" when I refused to let them install a feeding tube, despite the piece of paper I had in my hand. He died 30 minutes before the ambulance came to move him into the nursing home with my mother (which would have sent her over the edge with her Alzheimer's).

Hospitals do NOT want you to die THERE. Looks bad on paper. And that's wrong. We're all going to die, but not IN a hospital if they have their way.

It was a very stressful, infuriating time in my life, and I don't want my kids to go through it with us. Just because they can keep someone alive doesn't mean they should.

 

[LarryG]

Hi everyone, I just wanted to chime in here with a more positive and very recent experience. My 83 year old father passed away on Sept 21, in a hospital. He was in good health and living independently until 48 hours before he died. He was taken to the hospital the day before as he had fallen in his house and was not able to get up for 12 hours. Basically once he got to the ER then ICU, and they ran tests, he had a myriad of things wrong and his body was basically shutting down.

The good news part is that he had both a living will and a POA. I read the documents to the docs from my home in Georgia and they pretty much honored them. I was able to get to the hospital that evening and he was still alive, semi-conscious, but failing. The docs, I, and my sister conferred and we took him off the life sustaining measures, and went on "Comfort measures only". He passed away peacefully about 12 hours later.

The positive part of the story is that the hospital staff was fantastic, and indeed complied with the living will and POA, and let the man go peacefully. I was not in any way coerced to try to do anything but comply with my Dad's wishes. I am so, so glad he had these documents in place - I learned a lesson that I must get mine in place PRONTO.

Just wanted to paint one positive picture of the will and POA being honored. This was a blessing during a very stressful time.

Larry

 

[rodi]

Larry - my dad's experience was similar to yours. After my mom's ordeal (where she extubated herself) he was extremely clear on the measures.
So when he slipped into a coma from septic pneumonia (complication from his cancer treatment) we declined the vent, declined dialysis when his kidneys started failing. Kept him pressers just long enough for his sister to arrive from another state, so she could say goodbye. The hospital was great about it.

My brother, who died a few months later, had his medical POA and directives state that he wanted EVERY measure taken. That was his choice and it was even more painful for my sister and I to watch. They did emergency surgery after surgery to try to clear the obstructions in his bowel from an aggressive tumor. They had him on a vent and all sorts of machines. But his wishes were very clear. He had terminal cancer - there was never a chance of a cure... but the hospital was willing to keep doing these things because that was what his directive said he wanted. His last 3 weeks were spent in the ICU at a teaching hospital in Denver. In the end, the doctors said enough, and focused on palliative measures. It wasn't my choice, but if it had been - he would have gone straight to hospice rather than the hospital for that last 3 weeks.