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It's Already Gone On Long Enough

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Specializes in CCU, SICU, CVSICU, Precepting & Teaching. Has 40 years experience.

I've been trying to write this article for a week, about end of life issues, dementia, institutionalization and what Katrina did to those who were already borderline. I keep injecting too much emotion, too much personal information. Here is my latest try.

It's Already Gone On Long Enough

My mother-in-law had a stroke last week. Details are sketchy -- she's several hundred miles away and the daughter who lives closest, a mammography technician, knows just enough to tantalize my husband and me with some of the medical details, but not enough for us to get the full picture. She had either a right CVA or a left -- Rosita isn't sure -- and has either left hemiparesis or left -- again, Rosita isn't clear. What is clear is that she had a diminished level of consciousness and wasn't able to swallow.

Did we think she should give permission for a feeding tube?

Mamita is 89 years old. She's been institutionalized with dementia for nine years. No matter what we do or don't do, she isn't going to get better, her dementia continues to progress, and she hates living in the nursing home. When she first went there, she wore an ankle monitor because she kept trying to leave. She was in the memory care unit because Hurricane Katrina and the disaster that was New Orleans snatched away what remained of her clarity and functionality, then the Sheriff's department put her on a commercial flight and sent her off to live with her daughter in New England.

What else were they going to do with her?

She couldn't be left alone because she'd immediately try to go back to her house -- under water at the time. And letting her wander among people wasn't safe -- she tended to attack anyone who annoyed her. Mamita was always easily annoyed.

Nine years in a place she hated, and my first thought was that the stroke might offer her a way out.

If you ask anyone whether they'd like to die with dignity, or whether they'd like to be kept alive on machines even if there's no hope of recovery, no one opts for the machines. At least, they don't if you give them some clear idea of what you're asking and ask them before they get to the point of being awake, afraid to die and facing the point where the only hope of keeping them alive IS the machines.

Why, then, do we even offer the feeding tube to the family of an 89 year old patient institutionalized with dementia for nearly a decade and without any hope of recovering?

I'm not sure how serious the stroke turned out to be -- she has hemiparesis. Even if there was a chance of recovering from the stroke, she won't recover from the dementia, and the dementia makes it all but impossible for her to recover from the stroke.

How do you get her to do the exercises that will strengthen her, how do you teach her how to use a spoon or dress herself or use the toilet with one hand?

The stroke took away, and the dementia makes it impossible to get it back.

Mamita got the feeding tube. Her middle daughter, the one who lives farthest away and has always wanted the least to do with her insisted that she couldn't live the rest of her life knowing that "Mamma starved to death."

Why is it always the ones who live farthest away, who have the least to do with the patient while they are able to interact and who know the least about the situation who always draw the line in the sand and insist upon "doing everything"?

Why is it that they don't listen to the son who knows?

This isn't "doing everything." It's just prolonging her death.

It's already gone on long enough.

Ruby Vee has a mother-in-law in a nursing home, suffering from dementia and a stroke. She also has a mother in a nursing home with end stage Alzheimer's. End of life issues, institutionalizing our elderly and feeding tubes are much on her mind of late.

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40 Comment(s)

Ruby Vee, I am sorry. This article hits close to home for me because we dealt with this with my dad just the beginning of this year. We are fortunate in that while my mother thought the "we're going to starve him to death", my brother and I convinced her it was the right thing to do (not put in a feeding tube) and to put him on comfort care. My brother convinced my mother to allow him to deal with the doctors. My mother would have told them to do anything and everything under the sun. I know she felt like she was "giving up" on him by NOT doing anything, but gosh, sometimes that's just the best and most humane thing to do.

I feel for you and for your mom. I hope that your mom can pass peacefully, and that everyone in your family has the strength to deal with what is going on.

Gentle (((hugs)))

I am sorry for your situation.

I believe that the answer to your question about the relative from the furthest distance ordering these interventions is related to regret and guilt...emotional response. The only way to discourage such interventions is to approach them on an emotional level and discuss THEIR feelings which are requiring that they prolong the suffering of the loved one.

xoemmylouox, ASN, RN

Has 13 years experience.

You see this every day. Family members having to suffer due to the guilt of others. So often it is the child or sibling who doesn't visit, doesn't seem to care, etc who will drag things out. I am so sorry you and your loved one is going through this. It isn't right that they are robbing her of the release she so deserves. I wish you nothing but the best with this. Please remember that we are here to support you.

HouTx, BSN, MSN, EdD

Specializes in Critical Care, Education. Has 35 years experience.

I worked with a stellar ICU nurse in the mid-'90s who was a devout Catholic. She had a huge problem with artificially prolonging death and suffered a personal crisis of faith as she became convinced that this was directly interfering with God's plan. She moved into Hospice work, explaining that this would enable her to atone for her part in all that futile care. I spoke with her a couple of years ago - she's still happily working in Hospice.

Any nurse in my organization who feels that the direction of care is moving into the 'futile care zone' can make a referral for an Ethics Committee case consultation & they act within 24 hours of receiving the notification. I'm so glad we have this option.

HikingEDRN, BSN, RN

Specializes in Emergency Department; Neonatal ICU. Has 5 years experience.

I worked with a stellar ICU nurse in the mid-'90s who was a devout Catholic. She had a huge problem with artificially prolonging death and suffered a personal crisis of faith as she became convinced that this was directly interfering with God's plan. She moved into Hospice work, explaining that this would enable her to atone for her part in all that futile care. I spoke with her a couple of years ago - she's still happily working in Hospice.

Any nurse in my organization who feels that the direction of care is moving into the 'futile care zone' can make a referral for an Ethics Committee case consultation & they act within 24 hours of receiving the notification. I'm so glad we have this option.

Interesting that you say this. I have heard many people express the idea that comfort care and NOT doing anything is interfering with God's will. I never understood that - I see it more the way your former colleague did.

Ruby Vee, so very sorry. I really don't know why we (collectively, the medical community) offer the feeding tube option in these situations either. I hope your mother-in-law remains as comfortable as possible and that you and your family can come to peace with the circumstances.

amoLucia

Specializes in LTC.

Holding out good thoughts for you, Ruby.

My heart goes out to you, it has been there. Knowing what my father wanted made it much easier to make the decisions we did. Knowing my Brother could not handle the situation, we did not involve him or any others at all. He was deep in the cups at that time, not able to deal with reality for himself, much less others. It was many years later that the family found out we let him go. It would have been inhuman to do other wise, my father taught me that when I was a child.

because they (the medical community) doesn't want to get sued. By that same idiot relative.

Interesting that you say this. I have heard many people express the idea that comfort care and NOT doing anything is interfering with God's will. I never understood that - I see it more the way your former colleague did.

Ruby Vee, so very sorry. I really don't know why we (collectively, the medical community) offer the feeding tube option in these situations either. I hope your mother-in-law remains as comfortable as possible and that you and your family can come to peace with the circumstances.

HikingEDRN, BSN, RN

Specializes in Emergency Department; Neonatal ICU. Has 5 years experience.

because they (the medical community) doesn't want to get sued. By that same idiot relative.

I should have clarified. I was being rhetorical. I know why these interventions are offered. It just sucks because nothing ever seems to be in the best interest of the actual patient.

LadyFree28, BSN, RN

Specializes in Pediatrics, Rehab, Trauma. Has 10 years experience.

I should have clarified. I was being rhetorical. I know why these interventions are offered. It just sucks because nothing ever seems to be in the best interest of the actual patient.

THIS.

One of the residents I developed a great rapport with is now with a feeding tube and on hospice.

The pt is 97. :blink:

HappyWife77, BSN, RN

Specializes in Gerontology RN-BC and FNP MSN student. Has 20 years experience.

Sorry Ruby...it is sad that the least involved think they're doing something positive by decisions to prolong life.

If they would just be around their loved ones and see the quality of life, they would maybe understand quality out weighs quantity in terms of length of life. :(

mc3, ASN, RN

Has 12 years experience.

Ruby, ((((hugs))))

mc3

Ruas61, BSN, RN

Specializes in MDS/ UR. Has 38 years experience.

Prayers for you all, Ruby, to find the way.

txredheadnurse, BSN, RN

Specializes in Correctional, QA, Geriatrics. Has 39 years experience.

Whenever I read a posting like this one I am eternally grateful that I was an only child and didn't have to contend with siblings who wanted to not follow my parents wishes or were convinced that there would be some kind of miracle recovery.

My parents were very frank from my childhood on about their wishes and opinions regarding dealing with a terminal illness....comfort, maintain as much dignity as possible, die at home. I was able to ensure that exactly those things happened without futile care or making their final days a misery.

I am so sorry that you Ruby and your DH are having to deal with this final insult to your mother in law. Please know you have the support of your colleagues here on AN and our wishes for a peaceful ending for Mamita.

imintrouble, BSN, RN

Specializes in LTC Rehab Med/Surg. Has 16 years experience.

I used to think if nurses could speak plainly to families about end of life care, they'd make more informed decisions. If we could, with compassion, point out the futility of G tube feedings, when their loved one no longer knows how to eat, they'd change their minds.

After years of watching people torture their loved ones, I've come to the conclusion nurses have little influence over someone determined to "do everything".

Eventually, I mean over the course of years, maybe decades, decisions regarding end of life care will change. If we as nurses keep plugging along in our attempt to educate the public.

I'm sorry for your sorrow, Ruby.

Been there,done that, ASN, RN

Has 33 years experience.

The closest family members are uneducated and selfish. I am sorry for what you are going through.

We can only hope Mamita is unaware of the fiasco... and finds peace soon.

My Dad passed away from failure to thrive. I was so happy that I didn't have to talk Mom into declining the feeding tube when offered. It was hard for us all, but I think it would have been much more difficult to prolong his life with a feeding tube.

My thoughts are with you, I hope she finds peace soon.