Ethical duty of living will executor?

My aunt Agnes died today. She had written a living will, and stated she wanted no heroic efforts to keep her alive. Her husband was to make any necessary choices if my aunt couldn’t. If he was unable to, my cousin was to make the choices. Failing both, my sister was a third choice.

Two days ago, my Agnes’s friend called my sister. In her opinion, my aunt was suffering unnecessarily, there was no hope she would survive without a ventilator, and my uncle had baled out on making a choice. He told the doctors he couldn’t decide something like that.

So my sister went up the Marshfield Clinic, and I went with her. My cousin flew in from California. We all sat down to talk to the docs yesterday. The previous day my aunt was conscious and aware, according to my cousin. Yesterday, however, she was not.

My aunt’s heart was functioning at about 10% of her normal capacity. The docs agreed she would not long survive once the ventilator was removed-- they expected somewhere between 2 hours and 2 days. Even if not removed, she probably wouldn’t have more than another month or 2.

And we all agreed to the call – take it off.

This is where my opinion diverged from everyone else’s. The decision was to take it off, and NOT tell her she probably would die in the next day or so. I told them I disagreed, we should tell her. My cousin said, “Why panic her?” I said, “If she’s alert enough to understand, it’s her call whether to have the ventilator put back on. If she’s not alert enough, then telling her won’t make any difference.”

It wasn’t my call. They did what they did, and I didn’t rat them out to my aunt, mainly because I was never sure she understood what we were saying. And I didn’t want to get into a fight with other family members in front of her.

She lived about 20 hours after life support was removed. At times she was conscious enough to ask for water, and she said some of our names. My cousin told her she was getting much stronger, and would be out of the hospital soon.

I was so angered I left within a half-hour of her death, and didn’t talk to any of the other family, except to my sister - to let her know not to expect me at my uncle’s house. I didn’t tell them how angry I was. When I was a kid, Agnes was the only adult (including our parents) who spoke to us kids as if we had brains and could carry a rational discussion. She never talked down to us.

I think we did her a disservice by not being truthful with her. Though as I say, I’m still not sure she would have understood it.

I agree with you, yojimboguy. Your aunt made that decision when she made her living will. At some point in her recent illness I would think she was aware that this might be her time, and that a decision might have to be made. I don’t know that she would have panicked. And if she had that knowledge, she might have used her conscious times to say her goodbyes.

My thoughts are with you from here in middle WI. This topic has been on my mind, as my mother recently gave me a copy of her final wishes (cremation, service, etc.; I already have her living will), and I’ll probably end up being the one who takes care of things.

I’m in agreement as well, and can definitely understand being angry–but hope you’ll be able to let that anger go and forgive. It had to have been a terribly hard situation to face.

Well, I’m somewhere near you. I started in Madison, drove up to Marshfield, then over to Neilsville and back to Marshfield, then back to Madison. Hard to get more central Wisconsin than that.

My sister is the executor of my living will, and she agreed with them in my aunt’s case. I have confidence she would carry out my wishes, but I’m going to have to rewrite things to be much more specific than I initially did.

I don’t want to die with comforting lies in my ears, even if the truth might kill me sooner.

As I said in your other thread, yojimboguy, I feel that as long as your aunt was lucid, the decision should’ve been hers to make. They should’ve asked her before removing the vent, and barring that, certainly told her the truth. Although it is probably not the case for your aunt, I’m Catholic. I certainly would’ve liked the chance for Last Rites and Penance before death, if that is possible. And even without that - I would want the chance to tell my family that I loved them before I died.

StG

I help patients fill out Advance Directives every day, and I always encourage them to be as specific as possible in expressing their wishes. Some patients will say they want to be placed on a ventilator then I will ask them for how long. Often this is not an issue that they have considered. Usually, they will respond by saying they only want to be on it for a certain period of time. Thinking about these issues is never easy for the patients, but I think that I would be doing them a disservice if I didn’t explore the various scenarios with them. In the case of your aunt, if she was competent before her death, she should have been involved in the decision making (IMO - and it would have been the policy of the hospital where I intern).

Sorry for your loss.

I agree with you yojimboguy, your other relatives really didn’t respect your aunt’s right to die on her own terms. She may have wanted to spend her last hours, when lucid, saying her goodbyes or just being with people.

I’ve been through this with both my parents. My dad’s wishes were ignored, resucitating him and thus in my mind, not allowing him to die with dignity and my mom, I kept her at home where she could make her own decisions and die on her own terms, which she did when she was ready.

yojimboguy I was just about to respond to your previous thread when I saw this one.

I agree that she should have been told, regardless of her presumed awareness, or lack there of. I am sorry you have lost a loved one under such harsh circumstances. You will be in my thoughts.

As you have a living will yourself, it is a good idea to look into it again to make sure it is perfectly clear and your sister is aware of any changes you do make, and why.

When I went back to the States 2 months ago to help with my very ill father, his living will and desires were something we discussed. Unfortunately, we spoke of it when we were alone because he said that every time he tried to bring up the subject with the rest of the family (especially my sister), they did not want to discuss such things, and told him to keep thinking positively about beating the cancer. It was only when I made my mom take my sister to see Dad’s doctor to discuss his refusal of heroic measures, did she finally understand how important it was to him. Everyone then told Dad they respected his wishes. Dad died just a few weeks ago much like CanadianSue’s mum - at home, with dignity, in his own way surrounded by family.

Again, yojimboguy, I am very sorry for your loss.

This has been a very rough year on my family. An aunt, an uncle, and my father, all dead since January.

Yeah, they’re all in the right age group, but Jeez, enough is enough for a while.

Since this hits a little close to home, I’ll just give you my best wishes.

Washte gives yojimboguy a hug and offers a shoulder (or email) to cry upon if needed.

If she’d indicated in her living will that she wanted no heroic efforts to keep her alive, she may very well have known what being taken off the life support meant even without being directly told. Personally, I don’t think not telling her was wrong, you all did what she wanted done and were there with her. I don’t feel anything positive would have been gained by telling her, if she would have even understood.
This is the hardest decision to make, even knowing it’s what the person wants. I had to do it for my mother almost three years ago and it still haunts me.

I have to agree with Mauvaise in that she might have well known what was coming when the life support was removed. If she had a clear understanding of how she was feeling and what was going on, she knew she wasn’t doing well at all, and that removing the machines wasn’t going to help her function better. Also, if relatives were there who normally weren’t, that’s another strong sign that something is very wrong. Still, I personally probably would have wanted to be told, were I in that situation. I can’t know what your aunt would have wanted.

yojimboguy, if you need someone to talk/vent to, you have my E-mail. But please understand that quite possibly, your relatives shared many of the same opinions expressed that she probably knew what was coming, and that telling it to her might not have helped at all.

You may well be right, but I got angrier as time went on. It’s one thing to stay silent, as I did, it’s another to lie. My cousin repeatedly told my aunt, “You’re doing better… You’re getting stronger… You’ll be out of the hospital soon.” I’m not sure that my aunt understood or not, but it certainly made the concept of “informed consent” a joke.

While I didn’t speak up in fron of my aunt, I SHOULD have pulled my cousin out in the hall and told her to shut the hell up. And I didn’t, and I feel very bad about that.

Ugh… yeah, that’s not something I’d agree with at all. I’m sorry to hear that.

We had a not dissimilar situation with my grandmother a few years ago. Not to bore you with the details, but there was much division in what should be done and 98% of the principals did not have a legal say in the matter, their protestations to the doctors and my grandmother’s son and daughter notwithstanding. Finally, in front of the doctors and both families assembled, my grandmother’s daughter and son said they would do one thing but once their opposition left town did the other. They kept hanging their hat on the fact that “our votes did not count,” but a certain sublimated anger persists within the factions of the family to this day. It’s sad because that’s about the last thing my grandmother would have wanted.

It’s better to let go of the anger if you can. Sorry for your losses.

I don’t understand why the doctors are letting other people decide the fate of a conscious, lucid patient! Isn’t that a little invasive?

Here’s how it worked, at least in our case:

  1. My aunt Agnes had signed a living willing, giving my uncle, cousin, and sister medical power of atorney (in that order) in the event of her incapacitation.
  2. The doctor declined to ask Agnes directly whether she wanted support removed, saying it was a family decision.
  3. My uncle wouldn’t ask the question while my Agnes was lucid. She herself didn’t specifically request it, but it really would have been impossible for her to do so. With all the tubes feeding into her mouth and nose, she couldn’t talk.
  4. My aunt’s friend pressed my uncle to talk to Agnes about removing life support. At the time, apparently, Agnes would at least been in good enough shape to shake her head yes or no.
  5. My uncle bailed out, and refused to ask. Agnes’s friend called my sis Kathy, said Agnes was really miserable and in distress, and could Kathy come and talk to Agnes. Kathy called our cousin Debbie in CA, who was second in line for decisions according to the living will, and everybody headed for the hospital.
  6. By the time we arrived the next day, Agnes was drifting in and out of consciousness, and was generally unresponsive. We all sat and talked to two docs and a nurse, who gave a grim prognisis. We all agreed it was time to remove life support. My cousin said she didn’t want anyone to tell Agnes how bad it was, and I was the only one to disagree.
  7. The nurse who removed the equipment DID ask Agnes if she wanted it removed, but Agnes was out of it at the time. A physician also tuned off a surgically implanted pacemaker, and tried to talk to Agnes about the consequences of doing so, but my cousin called him out of the room. I don’t know what she said to him, but he didn’t pursue the point when he returned.
  8. Then she was transferred from ICU to palliative care (the hospital hospice), and put on a morphine drip. We, the family, were basically left alone with her til she died. A nurse stopped my to check her pulse every few hours, but that was it. Really, we could have smothered her ouselves, and the medical staff wouldn’t have known.
  9. There were times when Agnes was clearly conscious for brief periods, but my cousin used those times to tell her how much better she was doing and how she’d be out of the hospital any time now.

So AFAIK, while she DID know that she had a severe heart attack, she was never directly asked whether she wanted the ventilator removed. Once she became incapable of decision making it was removed, and during those later brief times when she MIGHT have understood the implications, she wasn’t told. In fact, she was lied to.