Thursday, November 20

What Do You Think?

The older sister of a good friend from my home town had a stroke some years ago. She has been in a nursing home in Virginia for at least 7 years, and has had a feeding tube for part of that time. Lately, she has begun to sleep a lot.

About two years ago, her son had her moved from a private room in a Catholic-run nursing home to a four-bed-ward. My friend said she knew his objective was saving money, although that was not a pressing necessity, since his mother's finances were in very good shape. My friend was very upset that her nephew would do that to his mother. Eventually he moved his mother to another nursing home (a non-Catholic one) that was found to be wanting in many areas, in the opinion of my friend (cleanliness, level of personal care, etc.)

My friend drove over 300 miles to visit her sister in October and found her in reasonable health, considering. She said that her sister responded to her by squeezing her hand and had an obvious change in breathing when she spoke to her; as well as a twitch of the lips, which my friend took to be an attempt to smile.

I called my friend over the weekend. She told me that her nephew had persuaded the doctors to remove his mother's feeding tube which resulted in her death a few days later. I thought it would be insensitive to ask the length of time it took. I am appalled. The woman's vital signs were not impaired, and she was not "shutting down". How can it be that the doctors agreed with his request? I thought that was against the law. Perhaps I'm wrong. Whether or not it is legal, in my opinion it is immoral and unethical.


I will be away from my computer and have only limited access to one this weekend. Talk amongst yourselves while I am gone.


Farrago said...

It seems to me that the next of kin — the sister — should have had all say and sway in the interests of the ill woman, and not the nephew. It sounds to me as though the nephew had a stake in the woman's death, namely, an inheritance that he feared would evaporate into the expenses for the woman's care.

Unless there's a law that allows it, I can't understand either why the doctors would do that.

Olyal said...

Judy, What a sad story!!

I worked for a few years in aged care back home and saw many similar stories unfold before my eyes, including the story of my own grandmother.

After coming to live in the Pacific, I have come to realise that, by comparison, we in western cultures treat our elderly in an abominable fashion!

Here in the Pacific there is such respect for the elderly and the aged. Old people are kept at home with their families, who look after them until, not just death, but burial.

The emphasis here is on respect for the elder and quality of life, rather than focussing on the quantity of life. People have no concept of what a nursing home is!

Children here see family members dying and dead. They have an understanding of the importance of funeral rites and rituals. And the whole community joins a family in mourning a death.

In contrast, our western culture has made death and dying tabu. People don't want to be involved in it and would rather pay others to "clean up the mess" so to speak.

There's no dignity in having to have someone else feed and wash and toilet you, but at least if it was a family member caring for you in a homey surrounding it might be more bearable than being locked away and stipped of privacy, as well as dignity.

My thoughts are with your friend during this difficult time.

Kay Dennison said...

Sounds bogus to me. I think an attorney is in order. This stuff realy scares me. Greed is a really terrible thing. I am in fear of this sort of thing. I hope that your friend tries tp help.

Olyal said...

And Michele sent me back to say hi!

Mojo said...

Reading this I think about when my dad died. Not the same story, not exactly, his time was up and everybody knew it. And he was able to make the decision himself to go to the hospice unit rather than home. He was in ICU being pumped full of blood products, and we knew, and he knew that once they stopped with the infusions, the clock was ticking.

He stayed in ICU with the IV's until all the arrangements could be made, signed all the papers, did the things that were done. And 48 hours later, he slipped quietly to the next plane.

The differences are many -- he was being kept alive by infusions of platelets, without which he was going to die. He was alert and in full possession of his faculties. Most of all he was making the decision for himself, not for someone else. And nobody had to make that call for him.

But he had always -- for as long as I can remember -- made it clear that he didn't want to be "kept alive" by artificial means. He even had a living will and health care power of attorney to back it up. There was no question that had he been in the same situation as your friend's sister, he would have in all likelihood met the same end.

But that was his decision -- and when my time comes it will be mine as well. Whether or not your friend had the same wish we may never know.

But there are far worse ways to make your exit than the way she did it. That's cold comfort to someone who's lost a sister I realize. But perhaps she can find some solace in it.

That is my wish for her at least.

Mar said...

So sorry to hear about your friend's loss...It seems it is a very complicated issue, the question still remains how the doctors could agree with it...
I personally don't want to be kept alive just for the sake of it. I want to leave this party the minute the situation is diagnosed as irreversible.
But of course I don't want my loved ones to leave before me...

bobbie said...

This sad story makes it so very plain that we should all have living wills. I have one, and have told my children many times that I never wish to be kept alive by artificial means. Letting your loved ones know your own feelings in these matters relieves them of the awful decisions that have to be made some times.
Ideally, I would love to have the family experience and respect that Olyal speaks of. Our western culture has not changed that for the better. But I still feel I do not want my children burdened with my care, even though I know they would do it willingly.

PI said...

'There's no dignity in having to have someone else feed and wash and toilet you, but at least if it was a family member caring for you in a homey surrounding it might be more bearable than being locked away and stripped of privacy, as well as dignity.'as a commenter said.

We are all different and I would rather a professional, caring nurse - like the ones I trained with - would do the necessary rather than burden my children.
My mother was the same and at the end of her life, when my son and I went to see her in the nursing home in Portugal she kept urging us to go and enjoy ourselves. It was very upsetting but she preferred to have strangers around her and they were excellent carers.

Tabor said...

I would like to think that the doctor's did not agree to this decision lightly and perhaps the medical situation was not as she interpreted. But the changes in home care made by the son make me agree that inheritance might very well have been an issue. I am not sure that the sister has any legal grounds if the son was given legal authority over both financial and health care decisions.

tiff said...

It might well be thath the next of kin was her son, and not her sister. It may well also be that in the time since she'd seen her sister something had happened to cause a downturn. Who knows?

What I do know is that I want to go out like Mojo's Dad, if ever I'm faced with the choice. No heroic measures for me, please.

panthergirl said...

I agree with Bobbie about the importance of living wills. If this woman had a DNR, then her son did the right thing because she clearly would not have considered this "quality of life". Personally, I wouldn't want to be kept alive in that situation.

On the other hand, if she did not have a DNR, then he took a radical step. Whether or not the dr. could act upon his wishes would depend on if he had been given the power of such a decision. If his mother had legally given him this power, then the dr. would have to comply.

colleen said...

It sounds like from her ability to squeeze her sister's hand that she wasn't in a vegetative state. So I don't understand why it was even an option.

themom said...

One would like to think that some guilt would follow this nephew, but it appears he may have had ulterior motives. So sad.

Farrago said...

Oops. I misinterpreted the story. The "nephew" was the deceased's son. Therefore he would, indeed, be the woman's next of kin, and probably medical power of attorney.

So I misspoke in my suspicions.

I don't know what to say. Having been through the withering and loss of my father this past year, I know the futility of keeping someone alive for the sake of keeping them around. Dad wanted to die. Whether willingly or psychosomatically, he stopped eating. He had a DNR. When his vital organs began to fail, it was only a matter of hours, and he went seemingly peacefully.

It's very likely that these were the deceased woman's terms as well.

I'm a proponent of human euthenasia, as long as it can be requested and approved by the one going out, and after a rigorous set of requirements are met for eligibility.

Darlene said...

I would have to know all of the legal issues in this sad story before making a judgment. The ill sister may very well have had a living will that her sister didn't know about.

I have a living will as the quality of life is more important to me than the number of years.

My Uncle gave power of attorney to a woman who stopped in to visit him often. After he had a stroke he suffered from dementia and was put on a feeding tube. I told his doctor that my Uncle had begged me to not let him live like this, but since I lived in another state he gave the decisions to that woman. My Uncle would have preferred to be let go, but the doctor said it would be euthanasia if he removed the tube.

I honestly do not believe that a doctor would remove the tube unless the patient had given her consent.

Thumper said...

Someone needs to go kick that boy in the nads. Hard. More than once. That's all I'm sayin'...

Jay said...

Wow, that's really tough. Especially so since it seems the whole decision came down to just the son and the rest of the family was left out.

rosemary said...

pretty sad....i'm thinking the son was counting the money he would have after she died. as for the toe....i broke it before we left trying to haul luggage out of the closet and not paying attention. the 3rd and 4th toes remain taped together....annoying and i have a blister where the tape rubs on the 2nd toe.

Thumper said...

Michele sent me to kick him in the nads again. 'Cause I can do that you know...

OldHorsetailSnake said...

Maybe this is cart + horse, but just maybe there were some ulterior motives going on there, just maybe. Whut u thunk?

JeanMac said...

Read of these stories all the time. Seems a bit "not right".

joared said...

"She said that her sister responded to her by squeezing her hand and had an obvious change in breathing when she spoke to her; as well as a twitch of the lips, which my friend took to be an attempt to smile."

Making a determination about the level of this patient's awareness and whether or not the feeding tube should be removed just isn't possible from this limited information.

I will say this, I have seen a few loving well-meaning friends and family members ascribe meanings that aren't based in reality to such patient behaviors as you describe above.

What others have said in comments about the living will, written specified health care wishes, other instructions are critical to any such situation like this. Did the patient have any such instructions set up?

Tube insertion, no tube or tube removal is a unique situation for every patient, loved ones and physicians. Personal belief systems and religious views of families dictate the actions taken. Not all people would make the same decision in an identical situation for just those reasons. I know what I would want done for myself, but I would not presume to project wishes for myself as the rule others must follow.

I, also, would not presume to know the son's motivations, since I know nothing about the family dynamics. Too bad explanations weren't provided to the sister, or she couldn't ask, all those years when the nursing home changes were occurring. I do sympathize with the sister if she feels her sister's final days were not handled appropriately. It's too bad that she could not have her mind eased on all the questions she has and seems to have no one who truly knows the facts to go to for answers.

Shelly said...

It's such a sad story, but I doubt the docs would have removed the tube without the proper documents in place, they're quite familiar with the liabilities.
We tried to care for my father at home while he was dying, we couldn't do it...and it was pretty hard to admit that we just weren't strong enough physically or mentally.
Sometimes in our grief we tend to want to lay blame of those that have the courage to make the decisions about the care process. My uncle (who is a surgeon!) made us feel horrible when we signed dad up for hospice care, but never once did he touch his own brother with a caring hand while he was fading.
Our culture has added the blame-game to the whole process of grieving.

Sheri said...

My sister had a massive stroke in 2000 at the age of 63. She was left aphasic, unable to walk and unable to do anything for herself. After the initial hospitalization and rehabilitation, her husband cared for her in their home with the help of nursing aides. She was alert and participated in conversatons with facial expressions, but it was just too sad to see her so incapacitated. After seven years in that condition, she stopped eating and starting sleeping most the day. Her husband chose not to put her on life support.

My sister didn't have children. But if it had been her son that made the chose, I would have been okay with the decision. Thankfully she passed away last year.

I firmly believe in life after death and because of my great love for my sister, I was relieved when she was "out of her misery". I know she didn't want to live like that, neither would I. I have faith she is in a new realm of existance and is happily progressing without her impaired body.

I don't think it is cruel to allow people die. We put our beloved pets to sleep when they are in misery. Don't get me wrong. I'm not for assisted suicide, but cost of medical treatment and quality of life are very important factors!

May your friend's sister rest in peace.

gemma said...

It's amazing to me that the connection has never been made between the ease with which we accept abortion and the slide into ending life of older or damaged folk without repercussion. Honestly. If we give a pass to the late term abortion procedure .. how can we have any opinion about this really late term abortion procedure? Just sayin'

Beyondpanic said...

I feel so sad for the sister who is your friend. What would I say to my nephews if this were my sister? I hope I never have to come to that situation. As far as my self, I'm going to live my life to the fullest and save lots of medication for the end.

Jamie Dawn said...

How very sad. What a tragedy all around.
It seems that maybe her son was tired of the financial drain that her care was causing. Or maybe he really did what he thought was best for her.
Either way, I don't see why he did that, especially if, as you said, the woman's finances were in good shape to provide the needed care.
I try to not judge too harshly those that find themselves in these situations. I feel the same way when it comes to the controversial topic of abortion. I am pro life, but I do not have hatred towards those who've found themselves in a dire, scary place and decided to get an abortion. I may not agree with it, but I try to have some level of understanding and compassion.
I don't agree with his decision to remove her feeding tube because I find that starving to death is not a good way to let someone die in "peace." Sounds hideous to me, and not at all what I'd want for a loved one.
I feel sad for all those who loved her.