The right to die...

Okay guys, here is a controversial one, but what do we think?
Doctors with a moral dilemma??

http://www.telegraph.co.uk/health/healthnews/7742636/Doctors-can-be-struck-off-if-they-ignore-the-right-to-die-GMC-to-announce.html

” in which patients specify in advance that they do not want to be resuscitated

What a coincidence Pen, I am about to post similar thread about dr Kevorkian as I just seen a movie about him
which was fascinating, btw.

Pen, here in Canada the "DNR" (do not resuscitate) is in practice and is obeyed if the patient signs such a form
in advance.
In case of sudden emergency, when there is no time to sign such form and/or where there never was one, of course, they do everything to bring you back.

A case of Terri Schiavo

http://www.nndb.com/people/435/000026357/

comes to mind in regards to being kept alive via feeding tubes and respiratory tubes
and whatnot and calling it "care",
for God knows how long while we can not do anything.

Is that a life any one of us would like to endure?
24/7 immobilized in bed, bored crazy out of mind, immobile, defecating on ourselves, and being conscious
of it all.
Unable to communicate, and yet painfully aware of time slowly slowly sllllllowly passing by.
Isn't that hell, not care?

I think it's nobody damned business whether or not I want to be kept alive in vegetative state.
It's MINE, and only MINE decision, as it affects ME in the first place.
It's gonna be ME in that damned bed.
Everybody else affected by me it's bupkies comparing to what I will be going thru.

So if my wish is to be dead rather that a vegetable, who has a right to tell me otherwise? ?

Risa

"Do not resescitate" requests are very personal and very familial. Having stepped back from the brink of suicide on sveral occasions, I have determined that I do not have the right to cause my death. But to me, DNR and withholding food and hydration is not suicide. It is a very individual decision I make for myself given my values and beliefs. It is not the place of any medical person to make that decision on my behalf. A copy of my living will is in my wallet with my decisions.

Dying is a very expensive affair. I was proud of my family and my Dad for getting out of the hospital and home when it was obvious to all his end was near. I hope I die at home with my family around me - not amidst tubes and IV's in a cold hospital bed. I am glad Steve died in his bed instead of the alternatives. The process of dying is very interesting ... watching the body's system's shut down one by one over the course of days ... holding your father's hand and loving him on his way. One of the most intimate experiences of a lifetime.

However, my grandmother was over 104 years old and in the hospital. The medical staff told her children that the end was near ... she was very dehydrated. did the children authorize the medical staff to refuse an IV or did the children demand an IV? My Uncle carried the day - he said he knew his Mom would die soon, but he never pictured her dying of thirst. An IV was administered and my grandmother recovered somewhat.

The more difficult decision for a family to make with a much beloved elder is this. Ought the hospital administer sufficient morphine to alleviate all the patient's pain - with full knowledge that death is probable with that dosage of medication? Should the elder be allowed to live in pain? Or should the family authoize pain relief that very well may result in death? Death is not certain ... but it is likely. THAT is a tough call for a family.

I hope my daughter follows my wishes at the end of life and authorizes pain relief. That is MY decision ... not necessary for you and yours.

End of life decisions are best made by the person. Second by the family. Only third, and least desirable, by medical personnel. That's my take on things.

The more difficult decision for a family to make with a much beloved elder is this. Ought the hospital administer sufficient morphine to alleviate all the patient's pain - with full knowledge that death is probable with that dosage of medication? Should the elder be allowed to live in pain? Or should the family authoize pain relief that very well may result in death? Death is not certain ... but it is likely. THAT is a tough call for a family.

This is where having M comes handy, actually.
Yes yes yes- kill me please with relief as opposed to prolong my life in pain, life that will inevitable end in death either way.
Fortunately, cases like that are not sudden, and the elder in question is usually able to make such a decision beforehand by self.


Risa

In a slightly different matter - has anybody ever watched a movie about dr Kevorkian
"You don't know Jack"
http://www.imdb.com/title/tt1132623/

it was a sort of bio (only about his work) about famous d Dr Death, dr Jack Kevorkian, who was an advocate for a dr assisted suicide.
This movie explains a lot about him and his philosophy, and I certainly am now less confused as to what is my stance on this "assisted suicide". but, still, I dunno, I dunno...

After seeing some of his 'cases' it makes rather a lot of sense that it's very much needed service and indeed Netherlands I think does have it legal. North America, I am not sure, probably not.

Definitely end stages of Lou Gherig's disease qualifies for dr Kevorkian.
These poor suffering people clearly look like they are in utter agony. I believe them when they say they don't want to live a minute longer.
But, Alzheimer? I can understand the fear behind the memory loss, not knowing who their loved ones are or who they are. And the suffering this impose on others. But still - is that reason enough to end otherwise a relatively healthy individual? IS IT healthy? we don't know what goes beyond the Alzheimer's brain, after all.

One things is for sure, WE do not qualify

Risa

This is a difficult one.

In the U.S., and of course depending on your state law, advanced directives can and are essential. However, they must be carefully worded, and clear. In some cases, a DNR can just mean that....you're done because you've issue it. Details in the document may actually say to keep you alive with advanced care--some die due to this, some linger longer from this. A good lawyer can help make an iron-clad document (well, as much as possible).

Also, a person need to designate a healthcare advocate, and healthcare power of attorney. This enables a person to act on a sick person's behalf financially, legally, and in terms of specific care.

I set all these documents up with my attorney for my grandmother.

When she became very, very ill, it was my decision to continue treatment to prolong her life, or to stop life-sustaining treatment. I did my duty, as expected and agreed--she trusted me to do the best I could honoring her wishes.

However, this is not as clear as it seems. When a person is ill, there has to be about zero chance of long term survival. Even with DNR, and specifics, "normal" treatment such as food, water, antibiotics, and even heart medications are not considered heroic measures...just standards of care.

My grandmother went through some very rough periods, clearly passing in the hospital. Monitoring her closely and finding vital information from reports and accounts from the physicians, I asked her doc (at this point she was not conscious, not able to feed herself, etc) "what are you trying to achieve here?"

The doctor obviously knew there was no hope nor chance of a recovery. Unless I would have asked, they would not have moved to "pallative care." Pallative and hospice are not the same, however they do intertwine. Pallative aims at keeping a person pain free and comfortable (but with possible recovery) and hospice does not have a recovery. It was up to me to say....ok, this is not humane to continue.

So all medications were with held. Only ice chips. No food. Pain medications only. She passed quickly--I was lucky. I would have loved to choke the pastor that came, while she was somewhat lucent, that wanted her to say the "Lord's Prayer." It stuck fear in her, as she knew.....she passed into unconsciousness shortly after.

If this is upsetting, sorry. But this is how things go. It's not pretty. It's not for the weak. It's for ones that can make decisions and stay with them. Passing of a loved one is not pretty, even romantic or heroic like in the movies. Most of the time it is ugly.

If someone asks you for this thankless and painful task (as relatives and others will likely criticize you after you have dutifully done your job), think carefully. As you decide just whom do you want to take care of your needs and requests, do the same.

We sadly take care of our pets in a much more humane way. We do not let them suffer.

This is such a difficult topic, that it really requires soul searching. However, do not expect someone in healthcare to really step up to the plate and say "hey, she's dying, time to stop all treatment and make her comfortable." I'm betting that you will need to spur this question with tact.

You do not want to look like you're trying to bump someone off or neglectful. Communication with all staff is important.

From what I've experienced, the nursing staff is the most helpful and give you insights. The most I ever got out of the healthcare staff was from a nurse that said, "she probably won't make it through the night." She was right.

At least I do know, that pain was controlled. I'm going to leave it with this....all she felt was a deep sleep.

Marc,
your post made me cry. You could express so well and with delicate words the emotions that accompany someone who's loosing a dear person.

You're right. It's not black or white and it is not easy to be rational when things happen. One thing is to take a virtual and hypothetical decision, one thing is to have to decide when your mom/dad/spouse/kid is actually passing away in a bed.

I've often heard our Government talk about "biological legacy" i.e. a kind of allegation that you do in advance and which becomes the only legal document to follow in case of uncurable disease, irriversible coma, etc.
Unfortunately, the law has been in stand by for years now. The topic is too controversial and is not only a political issue....

Personally, I would not like to prolonge my biological life beyond a certain limit. When I loose my capability to think and when my body depends exclusively on machines and/or IV it means that life is ended. Or that's already trying to migrate somewhere else.

Have a nice day

I believe the movie you saw about Dr. Kevorkian starred Al Pacino as the doctor (it was on HBO, correct?). I don't have that channel but I will rent the DVD when it's available. I think the doctor helped a lot of people end their suffering. Isn't assisted suicide legal in Oregon?

My concern about end of life for myself is how will they be able to make me pain free? I am on pain medication now. In order to control the awful pain involved with terminal disease, they'd have to administer enough medication to kill me. Yes, I worry about this too often.

I don't know who I will ask to speak for me. Of course, right now it would be my husband but he's 14 years older than me. My older son doesn't speak to me, my younger son is too immature to trust, my step-daughters are too close in age to me. I'd love Marc (mgb) to do it but that's not something a cyber friend does, especially from a thousand miles away.

I don't understand why people are up in arms about it. Sure, it might go against their religious beliefs....so what? Then don't do it! If someone else does it....it's their funeral!

Oh, and I do want hydration and food. Food is a big deal to me. I can't imagine dying of hunger or thirst. And pain control.....I want that. And I don't want to suffocate....so I do want a respirator.....and I don't want to be uncomfortable....so whatever meds I need to keep my organs working.....then....after all that.....you can let me go.

(I'm be facetious, obviously. I am not at all certain about any of this).

Arrrrgh.

This is not a pleasant topic. I wrote from my feelings. I did my duty for my grandmother, as well for my mother when she passed (failed CPR).

I hate to sound so "militaristic" but that is what is called for. In times of quite deep sadness you must muster courage and strength. If you do not do your duty, you have failed the one that has entrusted you to do so.

Obviously, the person passes, but YOU must be able to live with your decisions, and the feelings that bubble up, like a volcano, from time to time.

I hate to say it guys, but M is entirely different when it comes to other diseases. No one's going to move on M....treat just as any other "typical" issue. Pain on the other hand clearly must be spelt out, as the administration of medications can influence the length of survival, even in that time that a person is officially written off. Your degree of pain tollerance really should be spelled out at least with your advocate and in writing.

For all the procedures I have had done, I don't even have a formal legal agreement written by my lawyer. I wrote my own, and it was witnessed. Still, it is not as iron-clad as it should be. A lot, in fact, all depends on that person that you designate. It is imporatant. But sad.

Leslie, I am honored that you would consider me, and bow my head. This is such a significant task that it does take much, much thought, and bravery on the behalf of the person that is charged with this duty.

This is "serious business" guys. Kevorkian's stuff is so outside the ballpark in terms of real life situations--most likely you/or your loved one will be in a hospital scenario if things go badly. I wouldn't even consider his actions. Things come down between you, the treating doctors, the hospital staff, and if a nursing home is put in play.

After all, if there is no chance of recovery, your loved one doesn't really pass in the hospital, they are moved to a nursing home, or your home. Depends how things shake out.

I personally would not want to pass at home. Maybe some of my German great-great grandmother's superstitions are coming out. Just me.

My mother passed at home, however, I do not feel a negative force. Strange at times yes.... For example, a cat strayed into my back yard, and decided to take a nap in the sun. For me, good or bad luck? LOL...and my dad laughs at me.

All kinds of feelings and worries pop up, and if you do take this responsibilities, it is hard--you have been chosen for a reason, and it is your duty to carry them out. Brainpower and b@lls (ladies, insert whatever you like there). It does boil down to that. I've seen relatives run away in fear. Your sick wife, husband, friend, grandmother, etc. needs you to step up.

Marc, thank you for sharing your insights and thoughts on this matter. I respect your feelings and your courage. "Courage" is the correct word here - to have the guts to do something even when your emotions lead you away from that action. You are a man of honor and deep courage - I salute you.

Leslie, I have been thinking about your fears of dying of thirst or hunger. I know that thirst and hunger led to my father's death last September. It seems that the body does not necessarily die as we observe in our movies and on the television screen. There, people die quickly - of violenceor to get to the death scene in time for a commercial break. I saw something entirely different when my father died. I am grateful we had nurses who told us what to expect - we were innoculated from the shock and horror of the process. That allowed us to observe and to love and to be there. Nurses are top of the line in my experience! MUCH more useful than doctors when a family needs accurate information.

My Dad was home for about 10 days before he died. We had a hospital bed put up in the sunny living room for his comfort. My three brothers, my four sisters in law, three neices and nephews and I took shifts with Dad. Family was by his bedside 24 hours a day.

We were told to expect, and I did observe, Dad's bodily functions cease to operate one by one. On the first day home - a Monday, Dad was able to eat maybe two cups of nourishment daily. By Saturday, a single teaspoon of soup was an accomplishment for Dad. Same with water. After a few days of his accepting ice chips and spoonfuls of water, he stopped. A teaspoon here, on tiny sliver of ice there, it was all Dad required. He was catheratized. His urine flow ceased altogether within a few days. He got home on a Monday and died early ten days later on a Wednesday. In his final days, neither water nor food held any interest for Dad. He no longer needed them.

Had Dad been in a hospital or nursing home, IV's for hydration and a feeding tube for nutrition would have been required care. But Dad did not need that. He needed love and permission to die from his family. We gave him that. He had no noticable pain - we had medications to administer as necessary.

Dad did indeed die of thirst and hunger when I look back at it. But is was not the thirst of person wandering a desert seeking oasis. Nor the hunger I have way too often each day. Instead, he no longer required water or food and did not accept any - though it was offered regularly. He crossed over peacefully and was loved dearly to the end ... and beyond.

I have a photograph of the love between my parents that I treasure. Not a wedding picture or a photograph of them posed for a family reunion. In the hospital, I snapped a photograph of my Mom leaning over my Dad in the hospital bed - their heads close. They were whispering words of love and comfort and permission - my Mom to my Dad ... and slightly, my Dad to my Mom. I adore that photograph ... THAT is what love really means to me.

To be rational for a moment, had my Dad been under the care of the medical establishment in those final days, instead of his family, he would have used thousands of dollars of medical care that he did not want and really did not need. My Dad was a thrifty man - his watch word was always "minimum adequate." That means to use things and services, to purchase things and services, that are completely adequate to meet your needs, even the need for beauty, but never to over-buy - never get more than what meets your needs adequately. Dying at home was a thrifty choice of HIS and my Mom's. Money did NOT enter into the equation - no, indeed, money was of no consequence then. Only familial love. But his choice as supported by my Mom did indeed use the medical establishment's services wisely. I hope to be as wise myself.

Our doctor loved Steve. He and I shared many tears together when Steve died and in that first year of grief. Yet he told me that Steve's dying in his sleep at home was a blessing. Dr. Lee has a specialty in HIV disease - Steve was positive. Dr. Lee had seen so many men dying in hospitals surrounded by machines and cared for by professionals. A cold and cruel death for anyone - from my perspective. Dr. Lee was pleased that Steve was spared the horror of AIDS and HIV disease hospital - nursing home care. I guess I am happy about that too ... though I would have preferred to hold his hand as he died no matter where it was.

My beloved aunt died in her sleep one night. That is definitely how I wish to die. But I don't get to choose that. Still one can hope.

But, even though I watched my Dad NOT take in sufficient water or food for life, it was neither cruel nor ugly. His dying was incredibly peaceful and incredibly awesome in the true meaning of that word.

Nine months before he died, my Dad and I spoke of death. I asked him what he thought happened, if there were life after death. In his engineer's way, he waved a hand in the air and said, "we go on." He said he did not know of heaven or hell or any of that. But he knew in his soul that he would "move on." We were discussing Steve and I was comforted. I am comforted today knowng that my Dad moved on ... to something I will know about soon enough.

But I have decided to change my living will. Now, I demand hydration. But I will change that after being with my Dad in his final days. What I want as far as food and water goes, is what I need right then - minimum adequate. And in the final days of a body's dying, I now understand that minimum adequate water may be a teaspoonful or less a day. That is way of things and I always try to accept what is ... not what I desire things to be.

Thank you, Richard. In my naivete, I pictured being uncomfortable without water and food. I've never witnessed someone passing away. My Dad died at the hospital as he was finishing up a dialysis treatment. He had a heart attack and they couldn't revive him. He was with people he knew because he had been on dialysis for about 2 years. They weren't family but they at least knew him and cared for him.

I am not afraid of being dead but of the actual process of getting that way. Both you, Richard, and Marc have given me a lot to think about.

These contributions to the post are very thoughtful and interesting. I had no idea the thread would develop in this way, but I think it is proving quite cathartic. Thank you for sharing. Especially Marc and Richard.

One thing I think about which always come up when someone dies. "Was he in any pain?"
As someone who is in pain almost constantly (and I know many of you are too).
Why does that matter so much to everyone?

Is it because we feel so badly about pain and it reflects on us the relatives, that we might have allowed this to occur.
Or does it hi light our own impotence to prevent this in some cases, so we feel guilty?

What of this pain that one might feel as death draws near?
Does it matter so much, given we presume that once our life has stopped the pain is gone, and we never feel pain again.
Perhaps it depends on ones beliefs? But don't all religions suggest that the soul goes on, but earthly encumbrances are left behind?

It is one of the things that people fear, and encourages them to want to be allowed to die, to have that right.
But this is not living with pain, it's dying in pain. When we are gone, it is gone...

Its not going to bed hoping there will not be a migraine, or whatever in the morning night after night. It is finite.

Those of us who have even considered suicide, even in passing. Was it mainly because we could not, at least at that moment mentally deal with the pain, the incessant, unrelenting pain? So death would halt that. But even then at that moment we would likely be in that pain. So in effect we would die in pain. So why is it such a big deal (I do not mean that flippantly).

Reading Richard's post, the last one I read, I lost both of my parents very suddenly and I was not there.
My father died whilst my mother was at a neighbours. He was alone, and to make it worse we still don't know what he died of.
I have no idea therefore if he was in pain or not. My mother was blind and she died on a trip with her club. Thrombosis, gone 100 miles from home. Her sister was with her on the trip, but not me.

I have not given a lot of thought to the pain they may have been in. I just wish I would have been there, and have never gotten over the suddenness of their passings and the lack of closure. No time to say good bye. I have sadness for their loneliness at that time. Especially Dad, who was all alone, she came home to find him. Was he scared, what did he feel. Pain never crossed my mind as that did.

Anyway, sorry, I digress. So, given the pain we all endure every day, how much do you fear being in pain at the end.
It will be for the last time. We are used to pain aren't we. Would the thought of pain make you want to invoke your right to die?

This discussion reminds me of the book I read about how the Civil War changed how we handled the remains of dead people in this country. In wars past, the dead usually remained where they died. During the Civil War, many families were able to have the remains returned home.

So, the question that weighed heavy on the minds of the survivors was if their soldier had passed away while being "right" with the Lord. The only way to know this (the word, know, being applied loosely in this instance) was if the deceased had a pleasant look on his face.

The pleasant look was evidence of a peaceful passing, which could only be attributed to the deceased being in good stead. So, with the new embalming techniques and quick transportation (railroads), the body arrived home already cleaned up and presentable for viewing (the undertaker having been able to present the body with a pleasing expression on his face).

This makes me think that being in good stead with the Lord has come to be evidenced by passing away calmly and not in pain.

Marc and Richard, thank you for your heartfelt, honest, thoughtful and emotional explanations of the process of death in your experiences. You are both so eloquent. Thanks for sharing such very personal experiences

As far as thirst or hunger, I think there is a point at which, if you're sick and dying, you have no desire for either. That doesn't worry me.

I have thought that my husband and I do need to get our living wills done and in place, and probably sooner rather than later--we've just never gotten around to it. My choice is that I be kept comfortable as far as pain and that I be at home with my family around me, including any pets I may have at the time.

Even though it's a difficult subject, this topic is a good one to discuss and think about since death is an unavoidable part of life.