Dying and end of life quality.

[eliza61]

Last May, I lost my 85 year old father. The blessing in this was that he was never seriously ill a day in his life. He drove, traveled and lived independantly to the end. The night of his death he had a crab dinner with a glass of Jack Daniels (his nightly night cap) watched the Yankees on TV with my brother and quietly died in his sleep.

Most Americans polled say, pretty much this is how they want to die. Peacefully and at home.
Yesterday I saw an interesting tv article on 60 minutes that says almost 70% of us will die in a hospital hooked up to expensive machines that do not on average prolong life of enhance the quality of life. Technology has gotten so great at prolonging life but is that necessarily good?

What happens? At the end of life do we get scared and try to hold onto life at all cost?

http://www.cbsnews.com/video/watch/?id=6754650n&tag=contentMain;cbsCarousel

The piece also studies the cost of end of life but I didn't want to turn this too political.

What would be your preference? could you respect a loved ones request to not medically prolong their life?

 

[catycatcat4]

Imo under 70 fight it over 70 don't.

 

[DisMN]

Last May, I lost my 85 year old father. The blessing in this was that he was never seriously ill a day in his life. He drove, traveled and lived independantly to the end. The night of his death he had a crab dinner with a glass of Jack Daniels (his nightly night cap) watched the Yankees on TV with my brother and quietly died in his sleep.

Most Americans polled say, pretty much this is how they want to die. Peacefully and at home.
Yesterday I saw an interesting tv article on 60 minutes that says almost 70% of us will die in a hospital hooked up to expensive machines that do not on average prolong life of enhance the quality of life. Technology has gotten so great at prolonging life but is that necessarily good?

What happens? At the end of life do we get scared and try to hold onto life at all cost?

http://www.cbsnews.com/video/watch/?id=6754650n&tag=contentMain;cbsCarousel

The piece also studies the cost of end of life but I didn't want to turn this too political.

What would be your preference? could you respect a loved ones request to not medically prolong their life?

I could and have tried to respect a loved ones request but at one point other people stood in the way even though it was clear my loved one was experiencing the dying process. In the end the requests to minimize his care were met but very reluctantly.

I am hoping people will honor MY requests to not prolong my death.....which those last months and days can be considered, the end, a person dying.
I have a great reverence for the process of death and dying and consider it an honor to be involved in the final wishes of my loved ones.

I doubt many people can honor those requests though...look at how many people make their pets live far longer than is humane. We do that to our pets we'll certainly do it to our human loved ones.

 

[mrsv98]

Imo under 70 fight it over 70 don't.

The closer to 70 you get, the more this number will go up! I know plenty of vibrant happy people who are 70+. My DGram will be 92 in December and still drives and is active (I thank her for the good genes all the time! ).

I think it should be more case by case and what the individual wants, not simply the age.

 

[jfoofj]

I have watched two grandparents pass away within the last year. One was under hospice care for 3 days before she died peacfully in her own bed with her family around her, the other was in his usual health until he suffered a ruptured AAA and died that same day. Both were in their 90's. I have two more grandparents, ages 90 and 94 who are both still alive, but one has endstage COPD and CHF and everyday is a struggle for him, and the other is in kidney failure and on home oxygen. They are pretty much pain free, and being cared for in their own homes by family members, but honestly, it feels like they are waiting to die. The quality of life for them is not all that great and both have expressed that they want to go on. I truyl hope that when the end does come for them it is peacefully in their sleep.

Now, I work in a hospital and I run the ventilators (life support machines). I have taken many, many people off the vent to die under Comfort Measures Only orders. I have a lot of respect for the family members who make that decision. It is hard. I still cry when I watch people say goodbye. But I strongly feel it is the right choice to do in situations where there is no hope and only suffering.

So many people don't have the proper paperwork filled out to let people know what they want done for them, and who should make these decisions. I have watched families struggle, pray, plead, fight, pretty much everything to NOT have to make that choice. There comes a point, though, where we are just keeping a person alive with machines and medicines because we can. What are they getting out of life at that point? It is very hard for people to let go and say goodbye, and I truly hope I never have to make that choice for a family member, but please believe me when I say that there is a fate worse than death, and sometimes you have to learn to say goodbye and let them go.

 

[minkydog]

I think a lot of people do get scared at the end of their life, especially if they haven't given much thought to it. My dad was like that. He was extremely afraid of dying. It was really a shame that at the end of his life(he died of lung cancer) he couldn't find peace. He wanted the doctors to perform full resuscitation UP TO the last 2 days of his life. As a reasult, he underwent several procedures in his dying days that did not prolong his life but provided him with unnecessary pain. And of course, he still died.

I think we need to be asking ourselves how we want our death to go, assuming that we don't die suddenly and violently. What are we afraid of--hurting? being alone? not being able to breathe? There are remedies for those things. Just because you're dying doesn't mean that oxygen, water/food, and pain medication are withheld.

A lot of people are not at all comfortable thinking about those end-of-life questions anyway, and if they only knew...I've been a nurse for 34 years and you would be appalled at some of the things I've seen. Grandma falls ill, has a stroke, can't communicate. Daughter or Son can't bear to let her go, so they want to pull out all the stops "just in case." I've even seen families of people with Alzheimers do this. They want "everything" done in the vain hopes that somehow, Grandma will make a full recovery. They don't seem to understand that ship has sailed. I wish they understood what "doing everything" means.

The answer to this is of course, have that conversation with ourselves first. Then communicate our wishes to our family. Put it in writing and tell your MD. Make sure that as many people as possible know your wishes. DH & I have had these conversations many times.He has a severe lung disease that we know will eventually kill him. DH is very pragmatic about it all--he doesn't want to be kept alive on a ventilator, he doesn't want a feeding tube, etc. ANd I feel the same way. Of course it was hard to talk about this in detail. I want to make clear that deciding not to "do everything" does not mean "do nothing." If DH had pneumonia, he'd want antibiotics but if he goes into respiriatory failure he doesn't want to be resuscitated. ANd I don't blame him. Resuscitation isn't like on TV. It's very traumatizing to the person undergoing it. And it's not over in a couple minutes. I've seen resuscitations go well over an hour, with multiple electric shocks to the body, multiple serious medications, vomiting, ribs breaking, lungs punctured. If the only resuscitation someone has seen was on Greys Anatomy, well, they're in for a big surprise. Resuscitation is ugly and painful. I wouldn't want to put my family member through it unless there was a VERY GOOD chance he could be restored to pretty normal functioning and live a quality life.

 

[luvmy3]

Of course I want to live a long healthy life but if I had to choose I would take a shorter quality filled life than a long one hooked up to machines laying in a hospital bed withering away. I have seeen both ends of the spectrum and I know exactly what I would choose.

For my loved ones, I would always respect any decision they made no matter how personally hard it was for me to bear the choice it was.

 

[diesel]

When my father (age 82) was in the hospital ICU for two weeks with pneumonia which wasn’t responding to treatment and was told the last solution they could try was to put him on a respirator he said no way. He wanted to pass away. Although it was hard to accept we did exactly what he requested and let him pass away. It was amazing how many dr.’s and nurses stopped by his room and thanked us for following our fathers wishes. They said a lot of times families don’t. That shocked me. I hope my family will respect my wishes when the time comes.

 

[Disney Doll]

It is very difficult to be a nurse (or any other healthcare provider, for that matter) and watch famiiles put loved ones through huge amounts of agony trying to keep someone alive who should not be kept alive.

Death is a part of life. We in this country need to accept that.

 

[The Mystery Machine]

My sister's MIL is at her home right now being cared for, she needs 24/7 care and they are providing it with nurses and help from family including me.

They are doing everything in their power to raise her quality of life. She would certainly not get this treatment in a nursing home or hospital, no way.

She has terminal cancer literally eating her insides to shreds. Her guts are hanging out and she has a bag to catch her bile as her intestines are no longer there for the most part.

I was chatting with her at the kitchen table yesterday. She is surrounded by family coming and going helping her out.

I have helped out my G'pa 19yrs ago when he was dying of cancer. We also had him at home.

If a machine or meds, etc can aid in the care of someone, I do not see a reason to deny that person that choice and vice versa.

 

[memster]

Imo under 70 fight it over 70 don't.

What! where do you come up with this Do you have experience in hospice ?

 

[diesel]

What! where do you come up with this Do you have experience in hospice ?

I believe she's a teenager.

 

[memster]

The closer to 70 you get, the more this number will go up! I know plenty of vibrant happy people who are 70+. My DGram will be 92 in December and still drives and is active (I thank her for the good genes all the time! ).

I think it should be more case by case and what the individual wants, not simply the age.

Agreed

 

[NotUrsula]

Let go when it's time.

DH' family has had a lot of these situations lately. His grandfather was 103, blind and deaf, but physically in fairly good shape -- no heart problems or kidney problems. The last 2 years he just so clearly wanted OUT of life, and finally he got his wish.

Things have gotten a bit better recently, though -- doctors do now accept the idea of giving up. Back in the mid-1970's there seemed to be this weird don't-ask/don't-tell thing with doctors about dying. My Dad was clearly never recovering from his cancer, but they kept him in the hospital and did at least 10 more surgeries after declaring him terminal; he just wanted to go home, but instead he spent nearly two years in a hospital bed. My FIL had terminal cancer, too, but his doctors would not give him morphine -- because he might become addicted! Instead the man spent 8 months in horrible, horrible pain.

 

[scottishduffy]

I can honestly say that I do not want any life prolonging measures done on myself. I have discussed this multiple times with my spouse and other family members (In-laws and parents).

I have been an ICU nurse for years and have seen what 'doing everything' looks like. I firmly believe that if more people actually knew what CPR was like, and what it does to you... they would never want that option for themselves. While we do save many lives in the hospital, sometimes what we do is just stall tactics. So many people view death as the ultimate failure when in reality death can be a natural and beautiful event. If people were just educted early on about these things, if death was not something feared but instead accepted. Things could be so different!

I have seen a family of a 98 yr old patient with alzheimers and multiple organ failure begging for him to be put on a heart transplant list. I have seen a man with end-stage cancer (mult organs and bone) being prolonged on life support for 6 months because according to his wife "He said he didnt want this, but he *promised* me he would make it to our 50th wedding anniverssary so I'm holding him to it". I have seen, too many times to count, family members over-ride a DNR order and a living will, because they were not ready to accept what the patient had accepted. I have seen an elderly woman beg to be taken off her vent.... while her daughter sat next to her and said no (woman could not sign her own consent). Now I work in the OR and on a semi-regular basis we have patients brought in where we now the procedure will be fruitless. It is done for no other reason than hope.

I don't hold anything against the families that do this. It is a difficult place to be in and extraordinarily hard to let go of a loved one. Yet letting go is truly to the most loving thing you can do in some cases. Personally, Myself and my mother hold health care surrogacy for 10 family members. It seems as if everyone thinks we will be the only ones who are able to let go. (My mom runs a hospice). While it is not a distinction I enjoy, i am willing to do it for my family.

 

[Pakey]

I am now 54. Almost 4 years ago, I went through 6 months of chemotherapy for cancer to increase my chances that it would not return. I had a terrible time on chemo, no life whatsoever for those 6 months and it only increased my odds by a small percentage.

A few months ago, I was told I had cancer again. I did not want to even discuss chemotherapy. Unless they can tell me that it will cure me, I'm not interested in living through that again if it increases my chances by only 25%, yada yada.

Trust me, I don't want to die. But I don't want to live where I have to take so much nausea medication that all I can do is lay there and stare at the ceiling. I've always thought quality of life was most important; my husband used to feel differently. After seeing me live through that crap, he has changed his mind too. I may live another 20 years and I hope I do, but I'm not doing it with the assistance of chemo or anything that requires me to give up my enjoyment of life.

 

[FergieTCat]

Imo under 70 fight it over 70 don't.

Report back when you turn 70 and let us know if your opinion has changed!

I would rather have quality over quantity. My father had a DNR when he passed away. He had cancer and died of a heart attack in the hospital. I am glad he was not resuscitated.

Pakey, godspeed!

 

[bettymae1121]

My mother died of cancer in 2007. She was diagnosed in early September and a few weeks later she was gone (the cancer hadn't caused any real symptoms until July of that year, so by the time they found it, there was nothing to be done).

She went down hill pretty fast, she went from feeling a bit "off" in July to being in agnoy by early September as the cancer had spred to the bones in her spine. She spent about a week in hospice, per her medical directive that was part of my parents living will/trust all that she wanted was to be kept comfortable, even if we had wanted to do more for her it wasn't allowed (I suppose we could have taken it to court but why? While she could still communicate she said it was how she wanted it to be, and it was enshrined in a legal document, clearly this was what she wanted). The hospice staff were amazing, the room was large and comfortable, and private. We were allowed to stay with her 24/7 so she was never alone. She passed away one night, oh around 2 in the morning I think. My brother was with her, he was dozing on the window seat/bed that was in the room. She passed away in her sleep, as comfortable was was possible to make her.

Sometimes being at home isn't possible, sometimes you need that nursing staff to keep the patient as comfortable as possible. But in my experiance a hospice is the next best thing to being at home, for myself I'd much prefer it over a hospital in any situation where a hospice is feasable.

This also showed me how important legal documents are. Without them my father and/or my brothers and I could have made choices contrairy to what her wishes were, and while our motives would have been good, at the end of the day it was not what she wanted to have happen to her. My father also has instructions in his own will/trust and so my brothers and I will know what to do if/when the time comes, and there won't be any fighting between us over it.

 

[Mrs. Charming]

Quality over quantity is how I feel about it. I don't want to suffer, I don't want my DH and especially my kids to see me suffer. No way. I don't want to be on life support of any kind unless it was just a very very temporary measure, and my prognosis was good.

 

[memster]

I believe she's a teenager.

Thanks I couldn't tell