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Jazmine
Tol Eressea
Jun 23 2008, 5:21pm
Post #1 of 15
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Your thoughts??
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It's been a tough time of late. My uncle had a stroke, (though is thankfully more stable now), Neil's brother was in hospital with a serious gastric illness for a couple of weeks, and no sooner had he come out of hospital, did Neil's Grandmother go on.
She's nearly 91 years old, and has lived alone successfully since her husband passed 5 years ago. She's tiny, frail, and looks like Yoda. Yet everyone in the family was amazed at her resilence, and the fact that she could live such an independant lifestyle at such a grand old age. She has also suffered from Parkinson's for many years.
She was taken into hospital after a fall. She had become weak due to a nasty chest infection. Since being in hospital, her chest infection has progressed into pneumonia, and she has come down with a bladder infection. A nasty side effect to her medication has severely swollen her tongue, and she cannot eat. Several times over the past few days, we have received a call from the hospital telling us to come quick, as they think she is on her way out.
We are all pretty distraught. We've seen her go from being a tough, albeit frail, independant old lady, to practically a vegetable in a matter of a couple of weeks. It is harrowing to watch. She can barely communicate, due to her swollen tongue, but, when she does manage to make herself understood, her subject matter is always the same. "Why are they doing this??" She asks repeatedly. Doing what?? "Keeping me alive. I'm ready to go now."
She is fully aware, that at her age, and frailty, there will be no full recovery from this. She won't be able to return to her little bungalow with the pretty garden. She will need full time care. She will need help with eating, dressing, going to the toilet. But she doesn't want this. As she keeps saying, she wants to go with whatever dignity remains to her.
I've been thinking about this alot lately. Why do we insist on keeping people alive with drugs? We live in a world where we will euthanise the family pet when he becomes too ill, as it is the only "humane" thing to do. Yet, we cling onto our elderly until the last possible moment, until they have become a shadow of their former selves. Gran is quite honestly a Wraith in comparison with who she was.
There are a few countries with different laws on euthanasia, Switzerland springs to mind. One has to pass a mental healthcheck, and be able to administer the medication themselves to be allowed to choose this path. It's a very difficult subject to think about, but this is not the first time it has concerned my immediate family. During my mother's final few months with MS, she had begun to look into the possibility of going to Switzerland to do what she felt necessary. I'm not sure how I feel about it all, I can see both sides of the argument. I just wondered if any of you guys had any thoughts?
*Jazminatar the Brown*
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Darkstone
Immortal
Jun 23 2008, 6:27pm
Post #2 of 15
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Years ago my sister died of brain cancer. Towards the end they had to tie her hands to the bed rails so she wouldn’t tear open her scalp. I’m still angry about that. Her last words were “Who’s going to take care of my babies?”
On the other hand my wife’s grandfather is dying of rheumatoid arthritis. (Yeah, “Huh??”) His spine is slowy curving. He’s so bent over he can only see the ground in front of him. It’s also slowly bending his esophogus. It's like bending a kink in a garden hose. Eventually it’s going to close up and he’s going to suffocate. (No, they can’t do an operation to somehow fix it.) He was a very active man who loved to travel. Now he has to eat through a tube. Yet recently, before he went in for a very risky procedure he told his wife “Whatever you decide is okay with me. Just don’t let them shoot me.” He still takes joy from his children and grandchikldren, taking them all out to eat even though he can only drink liquids.
I dunno.
“Pain management" doesn’t seem to be a high priority in today’s macho “suck it up” society.
And then there’s all the concern by the government that a terminal patient may become a drug addict.
People say God never gives us more than we can handle. But sometimes you wonder.
I’ve had to put down a few animals. It doesn’t get any easier.
Then again, I’ve nursed some animals back to health that everyone else had given up on.
My wife works in a hospice (like Mother Teresa). People go there to die, away from all the intrusive drugs and tubes and machines. It’s a very nice place, with very nice people.
Making a life or death decision for a loved one would be very hard. I think this is one of those things that, no matter which way you decide, you’ll regret it the rest of your life. And I for one wouldn’t be so heartless as to second-guess anyone on it.
All you can do is the best you can. No more.
God bless you and your family.
******************************************
The audacious proposal stirred his heart. And the stirring became a song, and it mingled with the songs of Gil-galad and Celebrian, and with those of Feanor and Fingon. The song-weaving created a larger song, and then another, until suddenly it was as if a long forgotten memory woke and for one breathtaking moment the Music of the Ainur revealed itself in all glory. He opened his lips to sing and share this song. Then he realized that the others would not understand. Not even Mithrandir given his current state of mind. So he smiled and simply said "A diversion.”
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Dreamdeer
Valinor
Jun 23 2008, 8:06pm
Post #3 of 15
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What a horrible situation! You and your family have my prayers.
Law, and the teaching of some religions, allows a patient in such straits to refuse "extraordinary interventions". This is not the same thing as euthanasia, not killing the patient, but refusing treatments that have become a form of cruelty. Considering how the grandmother has expressed her dismay at being artificially kept alive, you could talk to the doctor about at least discontinuing the medicine which has caused her swollen tongue. She might then die in peace, or she might actually get better from being relieved of that stress.
If she lives through this, she might actually regain some degree of independence. If she does not, then I might suggest home nurses--in many states shifts of around-the-clock home nurses costs about the same as commitment in a decent nursing home, the care is much better, and the patient remains the Lady of her own castle. And she might not need around-the clock care once she fights off the infections.
If she does not live through halting her medication, then she will have died on her own terms, with her dignity intact, regaining the ability to speak and eat before she passed.
My website http://www.dreamdeer.grailmedia.com offers fanfic, and message-boards regarding intentional community or faerie exploration.
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Annael
Immortal
Jun 23 2008, 9:04pm
Post #4 of 15
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I've sat by a few bedsides of people who were suffering more from the treatment than their disease, and vowed that If I ever get diagnosed with something that means a long lingering painful end, I'll wander out onto a mountainside somewhere on a cold night with a large bottle of Bayley's. I think modern medicine and the modern fear of death have forced people to ends that were not at all what God intended for them.
My great-aunt simply stopped eating when she was ready to go. It worked.
Our similarities bring us to a common ground; our differences allow us to be fascinated by each other.
- Tom Robbins
* * * * * * * * * * * * * *
NARF and member of Deplorable Cultus since 1967
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SirDennisC
Half-elven
Jun 23 2008, 9:56pm
Post #5 of 15
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no one is afforded the right to die of old age... it is always some diagnosed something or other that is the cause. The problem with diagnosing approacing death is once "they" name the condition "they" feel compelled (or perhaps have an excuse) to treat the symptoms of that condition... regardless of the side effects.
May God's grace be with you and your loved ones during this time of suffering.
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Aunt Dora Baggins
Immortal
Jun 23 2008, 10:40pm
Post #6 of 15
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I tend to agree that we're kinder to our pets than our loved ones. I do have a kind of 'devil's advocate' story to tell, though. The last time my mom was in the hospital, her doctor (not her family doctor, but one the hospital assigned to her) tried really hard to get her to sign a "do not resusitate" form. He told her "You don't want to be on a feeding tube, do you?" She said "Why not? I was on a feeding tube five years ago and it wasn't so bad." Eventually my sister talked to her and in the course of their talk my mom decided on her own to sign the form. But we felt it was really, really inappropriate for the doctor to be pressuring her. I know his heart was in the right place, and he was trying to save her some suffering, but it should be her decision to make without pressure from a doctor. And it's true that she was on a feeding tube for several months in the fall of 2001 (right after 9/11; it was a tough time for us). Eventually she was able to eat again and recovered from the drug reaction that had put her in the hospital in the first place. She's gradually become more frail since then, but she still enjoys life.
On the other hand, it sounds as though your Gran is not enjoying life, and wants to be left alone. Does she have a living will? If not, now is the time for her to make one. It may not stop them from giving her the drugs she doesn't want, but it might help prevent more drastic measures later.
I am so sorry for your anguish. Since you asked for our thoughts, mine are that people should be allowed to make their own decisions about end-of-life care, and die peacefully if they choose to.
My grandmother stockpiled sleeping pills in case the time came when she felt like she should use them. But that time came on her unawares, and she lived another ten years as a shell of her former self. On the other hand, there's a kind of natural blessing sometimes that brings a personality change, a bit of dementia, that makes things bearable, and that's what happened to her. Though she was never again the vibrant woman she had been, she seemed content. Eventually she died while sitting in the lobby of the nursing home, watching the birds they had there. She drew a quiet breath and that her last one.
That gentle blessing of dementia is starting to happen to my mom now. She's mostly bedridden and confused, but she seems reasonably happy.
I hope your Gran can slip away quietly without too much annoyance from the doctors, if that's what she wants.
{{{{Jazmine}}}}
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"For DORA BAGGINS in memory of a LONG correspondence, with love from Bilbo; on a large wastebasket. Dora was Drogo's sister, and the eldest surviving female relative of Bilbo and Frodo; she was ninety-nine, and had written reams of good advice for more than half a century."
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"A Chance Meeting at Rivendell" and other stories
leleni at hotmail dot com
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FarFromHome
Valinor
Jun 24 2008, 10:14am
Post #7 of 15
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A similar thing happened with my mother almost exactly a year ago. At just under 90 years of age, she was admitted to hospital with pain, and quickly became dehydrated. The hospital insisted on inserting a hydration tube even though at this point my mother was so weak and frightened that it was a great ordeal for her. I think in the end it was having the tube inserted that contributed most to her death. Certainly it made her last few days ones of stress and disorientation. We tried very hard to have her moved to the local hospital in our home village, where she would have been given every opportunity to recover naturally or, if this didn't happen, she would have had palliative care. But the hospital she was in, it seems, was unable to release her until they had stabilised her condition. A Catch-22, since she would never stabilise in that stressful environment. In the end, we did persuade them to move her, but she never really regained consciousness.
One thing that it's important to know - once your grandmother can no longer make decisions for herself, based on the opinion of the doctors, the wishes of the family have no legal status at all. At least, that's what we were told by the hospital staff where my mother was, in the UK. I think your grandmother is free to refuse treatment for herself, but if she becomes too weak to make that decision you won't be able to refuse it on her behalf. Perhaps you could let her know that at least she can refuse the medication she is being given? Then if you can have her transferred to a place that will let nature take its course, at least she will have her wish of not being kept alive through heroic means.
I so agree that the elderly should be allowed the dignity of dying when their time has come, with only the support they want themselves to relieve pain or encourage sleep. I sensed from our experience that hospitals are afraid of the legal ramifications - if they don't do everything in their power to keep a patient alive they may be charged with failing in their duty. I hope that your grandmother is able to get the peace she needs, and I wish you strength and courage in helping her to find a way to do it.
...and the sails were drawn up, and the wind blew,
and slowly the ship slipped away down the long grey firth;
and the light of the glass of Galadriel that Frodo bore
glimmered and was lost.
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mwirkk
Rohan
Jun 24 2008, 10:18am
Post #8 of 15
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...Get the Living Will done while she is still compitent to do it. And it should be brokered and witnessed by an impartial 3rd party (a lawyer) as to minimize grounds for problems in the future; wherever there is the potential for passions, interests or agendas involved it's opportunity for trouble to arise. Count on it happening. If it does you're prepared. If not you're fortunate...in that one respect, anyway.
I really feel for you and your loved one's situation. I've had my share too over the past 30 years. I hope my mother maintains a long happy life, because I don't want to be the oldest one in my family, and I'm not even 50 yet. But it will happen to us all someday, whether or not we are lucky enough to see our 91st birthday - it *is* the one certainty.
To answer the question as to why do they try to sustain one beyond what would seem a reasonable minimum quality of life, I think it's four-fold: a) perhaps foremost, liability of the individuals and institutions involved - we live in an era of unsurpassed litegation, so for them it's a simple survival tactic; b) the Constitutional principal that it is the obligation of the state to protect of the rights of the individual from the will of the stronger majority - in the eyes of the law, this includes protection against the will of spouses and family who may not have the best interests of the individual in mind; c) western application of the Hippocratic oath, the medical code of conduct - "saving lives" is the mantra under which the medical community is trained, to do no harm, and "respectible death" is not something that up until relatively recently has gotten much consideration in the past century; and d) human nature - it's our natural communal instinct to want to "save" others, it just goes against the grain to let them go, because there's always that "what if" out there - what if we could have done something, what possibilities are being given up(?).
God Bless you and your family Jazmine. And good luck.
(Please Note: I am not a doctor, or a lawyer; Though I have had job experience where I was required to act in emergency aide situations, I have only my personal experiences with life and death to guide me and these comments are my personal opinions alone.)
The Black Knight Always Triumphs!!
-mwirkk :)
(This post was edited by mwirkk on Jun 24 2008, 10:22am)
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hatster
Rohan
Jun 24 2008, 10:38am
Post #9 of 15
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I hope that life eases for you and yours
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I will not broach the larger topic because I'm too emotionally invested in the opposite direction and this is obviously not what you need to hear just now. I hope Neil's grandmother finds peace and comfort.
The term is over: the holidays have begun. The dream is ended: this is the morning.
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Elberbeth
Tol Eressea
Jun 24 2008, 2:21pm
Post #10 of 15
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of the right to die with dignity, if that is your wish. Some people will fight to the end, and others will go peacefully into the hereafter. A lot depends on their beliefs. My mother is blind, bedridden, in a very kind facility, but there is no possibility that she will ever improve. In her increasingly rare lucid moments, she will say she is just waiting to die. I don't see that as morbid; I see that as her looking forward to seeing my father and her parents again. I don't want her to go, but I understand that she wants to.
"There are some things that it is better to begin than to refuse, even though the end may be dark."
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grammaboodawg
Immortal
Jun 24 2008, 2:48pm
Post #11 of 15
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When my grandmother was 96, she suddenly became very ill and was unable to eat, talk, rest comfortably... but her mind was clear and she knew what was happening to her. I asked her if she was ready, and a tear rolled from the corner of her eye as she looked deep into mine and nodded yes. She was gone the next day.
Jack Kavorkian's brother lives 1/4 mile from my Mom's house. Jack K. is there quite often. I can see both sides of the argument. If drugs and technology can prolong life, does that mean is has to?
It really is up to each individual's situation and beliefs. I would never judge others, and would hope for the same.
"Barney Snow was here." ~Hug like a hobbit!~ "In my heaven..."
TORn's Observations Lists
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Patty
Immortal
Jun 24 2008, 3:32pm
Post #12 of 15
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What Darkstone said and more...
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we recently had to decide whether to adhere to my sister's stated wish not to be connected to the ventilator or leave her on it. These are just the hardest decisions in the world, and you and your family have my prayers of support.
Hanging out with the Lonely Isle elves.
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Jazmine
Tol Eressea
Jun 24 2008, 8:44pm
Post #13 of 15
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Thanks for all the kind words everyone
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There have been some interesting comments/suggestions raised. I entirely agree that there is no straightforward right or wrong to this issue, each individual case would be different.
I guess this is just one of the symptoms of modern life! A hundred years ago or so life expectancy never reached that far past 70, whereas these days it's not as rare to reach your 100th birthday. I'm just not entirely sure our bodies were designed to last that long!
*Jazminatar the Brown*
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Stapper
Lorien
Jun 25 2008, 3:36pm
Post #14 of 15
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I can consider myself lucky to live in a country where euthanasia is allowed. Sadly, one of the parties in the current government is trying hard to change that, along with other freedoms we gained, like abortion and gay marriage - but that's a different discussion altogether. It's a dignifying (vs. suicide, IMO), legal way (vs. 'murder' by a third party) to stop a life that holds no future. In Holland, this option is only available if a person's life has started to crumble to the point where their future only offers high levels of pain with no hope of that stopping. Furthermore, the patient - or parents, in the case of children - has to ask for it in clear terms, and only a medical doctor can guide the procedure.
Little over a year ago, my aunt and godmother had euthanasia. She had been diagnosed with lungcancer less than a year earlier, and as the disease had spread to her brain and bone, she could not be cured. She looked forward to some already-planned moemtns with her family, and was lucky to live long enough to enjoy them. After that, she grew worse quickly. Within mere weeks, she was bedbound and receied high doses of morphine to ease her suffering somewhat. She coul'dn't really focus her eyes and was hardly able to speak. She chose to have her live stopped rather than seeing her life turn even more miserable than it had become. Though I still miss her terribly (I'm crying as I write this), I'm glad she did not have to undergo whatever whould have been her share of suffering if she had not had the opportunity to leave this world when she did.
I was pro-euthanasia even before my aunt became ill. I do not think people should be made to live in excruciating pain or under circumstances they do not wish to endure any longer - and if there's no chance of their situation improving. In my opinion, nobody deserves to live when their bodies fail them and life has become insufferable. I do not believe in any God, but if He exists, I doubt whether He intends to make people suffer that much. He may try people, but I don't think His trials would extend this far. It'd be pure torture, and if (the) God (of any religion) allows torture, what does that make Him? God is supposed to be good, not bad. I don't think any God would object to people ending their suffering when their health has faltered to a level that's unbearable to them.
Sorry if the previous paragraph comes across as blasphemous or hurts anyone. It is not intended that way. I think religion is a good thing, as it gives people strength, expecially in times they can really use it.
I understand your situation must be tough. It's a hard decision to make, under any circumstance, but especially if one of the two options means you have to go to another country to get it done. I can only wish you all the best in trying to find an answer to this question that is occupying your mind.
Belinda's law: The chance a computer crashes is proportional to the importance of the document you're working on
FOTR:50 links / Samwise's cookbook / TORn birthday calendar / 'Things you never (want to) hear people say' list
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Dreamdeer
Valinor
Jun 25 2008, 6:25pm
Post #15 of 15
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I can also see both sides. Though my religion forbids outright euthanasia (yet supports refusing extraordinary intervention) that doesn't mean someone with different beliefs should be forbidden to do what seems right to them.
However, if you're going to have euthanasia, Dr. Kevorkian is a poster child for doing it the wrong way! That man horrifies me. He is so eager to flaunt his cause that he kills people without any inquiry into alternatives, and without a decent waiting period to see if they'll change their minds.
One case in particular shocked me. A woman had just freshly been diagnosed with fibromyalgia and chronic fatigue and was terrified of her future. When she came to him he gave her a suicide machine and she used it the same day. I have fibromyalgia, and my narcolepsy causes chronic fatigue. Sure, anybody gets scared when they first get a diagnosis like that--"You are going to have to deal with pain and exhaustion for the rest of your life"--but that doesn't mean it stays daunting forever. You find that life still holds many good things, you have many good low-pain and/or high-energy days to look forward to, such conditions can stabilize and not get any worse, or even (especially through alternative medicine) get better!
I remember, on the same day that I heard that on the news, I went shopping with my husband, but became overcome with a fibromyalgia flare so bad that I became unable to walk. He settled me down to sit on the edge of a planter, while he went to fetch the car (we had walked to the mall from home.) While I waited, in severe pain, I stared at the gorgeous blaze of flowers in the planter across the path from mine, and thought, "That woman will never see beauty like this again. Maybe different beauties, in another world, but not these beauties, right here. She lost all of this before her time, all the years of milking life for all its worth. I am so much luckier than her, that I did not meet Kevorkian in my own early days of fear!"
This doesn't apply to Jazmine's Grandmother's case--she has asked to go, and there is no reason she should stay. But I do get scared about euthanasia done wrong, done to people not actually ready to die. I get scared of people pressured into it, for any number of reasons. "Don't be selfish, Daddy Bigbucks--you had your day to live, and now it's our turn." The Dutch may do it right, but I'm not sure how the American culture, as it stands today, would handle it.
I have already seen this happen with birth control. In many cases it has gone from a right to a duty. People get angry at poor people who have children, saying that they have no right to parenthood, and politicians talk about kicking off welfare any recipient who gets pregnant. A welfare mother who sacrificed her life saving her eight children from a fire was hailed as a hero by the paper--yet her family got bombarded by vicious mail (as the woman lay dying in the hospital!) about how wicked she was for having children at all. And it's not just the poor. I remember a once-popular reporter, born with a hereditary condition that left her with two big fingers and a thumb on either hand, who got tons of hate male because she had the temerity to get pregnant and risk passing on the deformity--despite the fact that she lived a rich, happy, and productive life, visibly successful, as did her "lobster-handed" father before her, and could reasonably hope for the same for her daughter, whether her daughter was born with few fingers or not. I mean, what difference did it make that she can't play the flute?
I am just not sure that Americans can handle euthanasia as wisely as the Europeans do. We've become a greedy and meddlesome people. Our HMOs especially would steer patients towards euthanasia, were it legal, just to save money.
My website http://www.dreamdeer.grailmedia.com offers fanfic, and message-boards regarding intentional community or faerie exploration.
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My heart goes out to you!
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