s/o When is it OK to let go?

[KBecks]

OK, so with the healthcare discussion and the end of life issues and quality of life issues being addressed, I am just pondering the question of when a person or the person's caregiver might decide it's OK to end things like feeding, ventilators, etc.

Perhaps it would be useful for us all to explore the whole end of life orders stuff -- I don't know that any healthy young parent would have these kind of orders now.

I am still struggling a little with dealing with the ethics of the end of my mom's life -- she had a stroke and could no longer eat or swallow (she would choke) and at that time she was not given food or water and she basically starved to death. (Ugh. It hurts to write that out.) Anyway, I can look at it from the standpoint of if we were out in nature she would have died that way anyway. But still it's not easy at all. My mom had advanced Alzheimer's disease and she was near the maximum of life expectancy after a diagnosis, so it was close to the end.

I'm not asking to talk about my specifics with my mom, she's gone and I am mostly peaceful with the whole thing.

I am not sure even what the question is -- I believe this is up the individual -- in the case of my mom, I think my brother did do what my mom would have wanted, and she had a living will and he went with what she had requested.

What would you request? Maybe we should talk through the language of these things, although each case is so individual..... I just feel like talking about this more and I am interested in your experiences and insights. Thanks!

(Hoping for another great discussion -- in the meantime, I will get back to the housework! I love ignoring the dishes and carpet cleaning duties to chat with all of you!)

[mommylamb]

It really is a hard thing. I may be in the very small minority here (or maybe not, who knows), but I really believe in death with dignity. I would rather someone gave me a shot of something so I could drift off painlessly than either feed me through a tube or have me starve. I don't mean that in a harsh way at all (and, Karen, I am so sorry for your experience with your mom, that sounds awful).

[codex57]

It should be up to the individual. If they never made a choice, I dunno. I'm in favor of some fast track conservatorship process that will name a representative really quick.

As for me, let me go. I don't wanna be a burden on my family or society. If I'm gone mentally, it's not like they can really have a relationship with me anyways.

Edit: if you're asking btw letting me starve or giving me a shot or something, I want the shot. Give me some extra propofol or something and let me drift off to sleep forever. I really don't understand why we can't execute criminals that way. Why the need for the cocktail? Just OD them on sleeping gas. No pain.

[StantonHyde]

One of DH's coworkers had her second child 3 mos before I had DD. She got a huge septic infection and ended up losing both legs above the knee, an arm above the elbow, and her entire colon. She is in a wheelchair now and will forever face health issues. She is awesome and strong and amazing. This situation spurred alot of discussion at our house.

My parents came down for the day a few weeks after this and DH just flat out opened up the can of worms at lunch (kids weren't around). And I reiterated that at this point in my life, I would want everything because my kids would want their mother, even a severely physically disabled mother. DH felt the need to have the conversation because he would not have necessarily made that choice watching what this coworker and her family went through. (He is an ER doc and this was one of the nurses) He faces the dilemma every day of--we can bring a person back but they won't be the same person. And my dad was an oncologist so he is wayyyy more relaxed about death than anybody I know!

My views are shaped from living in a healthcare family as a child, working in hospitals as an adult, being married to a doc etc. Karen you are not alone in hating hospitals. I, on the other hand, love them. I grew up in them. They are such normal places to me. And they will be for my kids too. We took DH an icecream treat last night at work because the kids had not seen him in 2 days. (When I called to see if it was ok he couldn't answer because he was in the middle of a rectal exam. That was interesting explaining that to the kids, but I did.)

I truly believe in not doing everything. I obviously believe in pain control but nobody needs extreme measures to prolong death. And that's just it for me, breathing does not constitute life for me. I am a very active person (mentally and physcially) and the thought of just laying there waiting to die is not something I want to do.

I am all for dying at home or in a hospice hospital. Absolutely the best way to go IMO. And hospice nurses are true angels. Such awesome people. Our society needs to get better at facing death. It used to be commonplace before 1960 or so. Now with technology we can prolong death--and we can also totally save lives, don't get me wrong. I had preeclampsia and one of the things that amaze me to think about is that 60 years ago, I would have been dead from that complication. And somehow I think people who live in rural areas/farms who are more connected to the life/death cycle do better with death than people who live in urban areas. At least that has been my experieince. But, yes, we need to talk about it. As a society, with our families, etc.

So those are some of my thoughts.

[egoldber]

I firmly believe that there are things worse than death. And this is from someone who has zero belief in an after life. If am mentally gone, then I do not want heroic measures.

We had to decide when or if to remove Leah from life support. It was the hardest thing we have EVER done and more than one person was urging us to keep her on a ventilator indefinitely. But that was not the life we wanted for our child or for ourselves and our living child. So we let her go, held her while she died, grieved and grieved and then moved on with our lives. This is the way things work. It's horrible and it's hard, but the decisions need to be made.

I disagree that healthy, young people do not need to think about these things. You NEVER, EVER know when a terrible accident is going to happen. I would rather die and donate my organs so 5 people can live than be kept on a ventilator until my organs become worthless.

I do think that as a society we have insulated ourselves from death. We think we can stay young forever, we use surgery to stay young and deny the fact that we get old. I don't think it is healthy to live this way.

[brittone2]

And hospice nurses are true angels. Such awesome people.

ITA. I don't know how they do what they do, but they are some amazing people. If I was terminally ill I would want to be at home w/ hospice care.

[daniele_ut]

I am all for dying at home or in a hospice hospital. Absolutely the best way to go IMO. And hospice nurses are true angels. Such awesome people.

I completely agree with this. My father spent the last 2 weeks of his life in an inpatient hospice called Calvary Hospital in the Bronx. It is an amazing place and I wish we had actually admitted him there sooner. We took care of him at home as long as we could with home hospice, but the nurses there were AMAZING. They make the quality of a patient's last days so much better for the patient AND their family. We have a similarly wonderful place here in Salt Lake where the father of one of my best friends spent the last days of his life.

I disagree that healthy, young people do not need to think about these things. You NEVER, EVER know when a terrible accident is going to happen. I would rather die and donate my organs so 5 people can live than be kept on a ventilator until my organs become worthless.

Absolutely. I am an organ donor as well and would far prefer that my organs go to someone in need than I remain on a ventilator.

We also faced the decision to turn off our dd's respirator shortly after she was born. It was a terrible decision to have to make, but I know it was the right one.

[KHF]

It really is a hard thing. I may be in the very small minority here (or maybe not, who knows), but I really believe in death with dignity. I would rather someone gave me a shot of something so I could drift off painlessly than either feed me through a tube or have me starve. I don't mean that in a harsh way at all (and, Karen, I am so sorry for your experience with your mom, that sounds awful).

I had typed out a more lengthy response, but I couldn't get it to come across the way I wanted it to, so I'll just say

[KBecks]

I was listening to the radio today and they were talking about this issue. It can be tough because for me there is a spiritual component to it and I am not OK with taking my own life, or the life of another, but I lean towards not having tons of interventions either if it's very obviously the end.

I very much may be a person who wants to stick it out as long as I possibly can, even if I have limited functions and I've got pain. My brother was recently diagnosed with ALS / Lou Gehrig's disease, one of the worst things I know of. His body will fail over time but his mind will be OK.

My husband is the worst caretaker, I know he loves me, but man he seems to hate being inconvenienced by a sick person, it is just not something he has the patience for. I should find someone else to be my health care advocate!

I agree about us being very disconnected from death, it is a blessing in many ways that we are so fortunate that many people have long and pretty healthy lives. I think it is very important that someone who has the desire to live has the chance. I heard about the situation of a terminal cancer patient getting a hip replacement -- to have the quality of life for as long as she would be around. My MIL, an oncology nurse says 3% of people with cancer survive it..... right now we are lucky that David's grandmother has lung cancer and has outlived expectations and she's still sharp and doing well, independent. She is getting more tired but she still enjoys making lunch for you when visiting. She is in her 80's.

Then there is the question of treating people w/dementia still as people... I read a book about this when my mom first got Alzheimer's. It is not the end.... it is different....

[BabyMine]

DH and I talked about this when Terr Shivo(?) was in the news. We lived by her. We both agreed that if there wasn't a chance that we were going to live without machines keeping us alive then we didn't want to live.