It's Already Gone On Long Enough

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. Nurses Announcements Archive Article

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.

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. :(

The least involved should have no rights when it comes to making decisions. That's why I'm glad we had POA over my Mom and my long lost siblings had no say in her treatment.

I'm so sorry you and your family are having to go through this, Ruby Vee (and anyone else in similar situations).

While I am a Christian, I guess the religious institutions are largely to "blame" for (what we nurses tend to see as) futile care and prolongation of misery.

I pray for a speedy and happy resolution to Mamita's and your trials. I hope the dtr who was pro feeding tube will spend time with her Mom. Is she POA/guardian? If so, can you challenge that status?

Sorry that you are going through this. I work in LTC and see the pain of family members knowing their loved one is 'here', but 'not' in my patients' families faces on a regular basis. It has got me to thinking about my own aging parents... and I belive in letting our loved ones die with as much dignity as possible too. Your sister should know that this isn't about HER, it's about MOM. I wonder why that so hard for some to understand...

Specializes in pediatrics; PICU; NICU.

Almost a year & a half ago my dad, who was 88 at the time, became very ill. His doctor wanted to put him in the hospital for treatment but my dad told him he wanted to go into hospice. He had many long-standing health problems and was tired of being ill. The doctor was reluctant to put him in hospice until I got on the phone & told him that Dad had told us (my sister & I) that morning that he was dying. The doctor said he didn't think Dad was anywhere close to dying but agreed to admit him to hospice. Three days later, Dad passed away peacefully and without pain for the first time in many years.

We were very lucky because he had made a Living Will & appointed me as the primary POA many years ago. There was no question of what would or would not be done because the 3 of us had talked about his wishes many times.

My husband & I both have Advance Directives and my sister, our daughter, & all my nieces & nephews know that absolutely nothing is to be done that would prolong a meaningless life if we're ever in that situation.

Ruby, my prayers are with you. I know how difficult this time is.

((hugs))

Specializes in hospice.

While I am a Christian, I guess the religious institutions are largely to "blame" for (what we nurses tend to see as) futile care and prolongation of misery.

Whew....think you could swing that hammer any wider and smash any more whole classes of humanity that don't deserve it?

As an educated, practicing Catholic I can assure you that most of the controversy on this topic comes from misunderstandings and misinterpretations of what the Church actually teaches. I can't speak to other religions or denominations as well as my own, and I do realize that there are some pro-life advocates and philosophies that are neither educated nor nuanced, but I think blaming all religious institutions for poor end-of-life decisions is unfair.

We could start a discussion about how too many doctors are neither trained nor willing to have frank, open discussions about end-of-life with their patients....

When discussing artificial feeding, I know the nurses I work with have found some success with a patient explanation that when a person loses the desire and motivation to eat, it's often because their body can no longer process what they eat, and that it can in fact cause more pain to try to force nutrition on them. In the case of TPN, we can point out existing edema to show that the body isn't processing or eliminating fluids anymore and that running TPN will just make that worse, and no, Lasix is not some miracle drug that can just magically solve that. With cancer patients, I know that a tactic I have sometimes seen work is explaining to the family that artificial feeding is just feeding the tumor at this point and not the loved one, and again that it may actually increase pain if we try to force them to digest g-tube feedings.

However, there are some people who just are NEVER going to listen or accept. I've seen so many situations where I've said to my coworkers, "You've just gotta be so dang careful who you pick to be your MPOA." And situations where Mom or Dad made all their kids co-MPOA so as not to show favoritism? Disaster.

Ruby, I'm truly sorry about your MIL. Dementia is a monster and dealing with it tears families up. :(

Specializes in pediatrics; PICU; NICU.

Duskyjewel,

You are so right about being careful about who you appoint as a POA. When my dad was making his advance directive, he had a long talk with my sister & me. He made it clear that I would be the primary POA & she would be secondary but that we were to make decisions together. He told her in no uncertain terms that if she & I disagreed on anything, my decision would be final and she was not to challenge it. Fortunately, there were never any disagreements because he made his wishes crystal clear & when the time came that he told us he was ready to "go home", we were well prepared.

I'm very glad that there were only the 2 of us and we didn't have to worry about some long lost relatives trying to override anything.

Specializes in Quality, Cardiac Stepdown, MICU.
While I am a Christian, I guess the religious institutions are largely to "blame" for (what we nurses tend to see as) futile care and prolongation of misery.

I won't take offense at what you said, but I respectfully disagree. It's not the fault of Christians or any religion in particular, it's the medical culture (MDs, not nurses) who feel the need to cure, cure, cure. Nurses, who spend more time with our hands and hearts on the pts and their families, are very receptive (most of us) to the idea of a dignified death. A lot of MDs seem to have trouble with this, and see it as giving up, or failure. This attitude trickles down to the family, who don't have the same training as we do, and follow the doctor's lead.

What would have happened instead if the MD did not offer the option of the feeding tube, or did offer it but recommended against it? The MDs I trust the most are the ones who say, "If it were my mother. . ." Yes, the nurses need to advocate. But are we the only ones required to do so?

Specializes in critical care, ER,ICU, CVSURG, CCU.

oh, RubyVee, love and hugs fou you and your family, I had to face similar decissions 14 years ago. I do not know if it was easier not having other family interactions or not. I just advocated for what my mom had indicated she wanted. Dementia is a very cruel disease. It will affect you more as you are more knowledgeable.....

want a smile? I was invited to be added as crusty old bat club!

love your post, and {{hugs}} across the miles :sneaky:

My dad died at home with hospice. He quit eating about 5 days before his death… I was very upset as he became confused for the first time in his life. I did what I could which was make home made chicken soup and try to spoon feed him. He took a few bites but then refused. I argued with him saying 'Daddy! If you don't eat you're going to die!' (he weighed about 90lbs his normal wt was 115-125). He looked me dead in the eye and said 'No kidding.' and gave me a look that said 'deal with it'. lol. He was MAD as heck at me for trying to feed him when he didn't want to. That was the night before he died. He died at 9 the next morning.

Upset as I was, it was HIS CHOICE and part of the dying process. I have heard over and over again that people choose their own deaths and as I look back my dad was ready to go and chose his time and the place. It was terrible and also wonderful for him to no longer be struggling for every breath.

If were up to me I would have taken him to the hospital then and there, but he had chosen hospice and made his wishes completely known to the nurses and to his wife. I pretty much had no choice. BUT, I have a great deal of peace myself knowing he lived and died exactly the way he wanted to. He died peacefully. In fact the hospice nurse that was with him said it was the 'most peaceful death she had ever seen'.

I only say any of this to underscore how difficult it is to lose the ones we love. Having dementia, a stroke, losing control of ones choices and independence has got to be the worse situation ever. I'm so sorry for what you are going through. I'm sure it is difficult beyond belief.

Talking with friends, other nurses, the hospice nurses… that 'not eating' moment is usually the first sign that 'it's time'. Shoving a tube down someone's throat/nose… prolonging someone's misery… yes, that is truly cruel.

Even now, I still STILL second guess myself and all of it and wonder if we did the right thing to 'let him die'… but my vision of him, bone thin, gasping for breath, and yeah… it was the right thing to let him choose. :( it's never easy for those left behind.

Modern medicine can only go so far and we can reach a point where we are basically torturing people by keeping them alive way past their expiration date. I know that… seen it a million times, but for my own dad… I really didn't want to let him go either. Had I taken him in he would have most likely died a miserable death in the hospital…

Thank God for hospice.

Anyways, hugs… I'm sorry you're going through this. It is NEVER ever easy.

Specializes in hospice.

Thimbalina, I love your post. As hard as it was for you, you honored your dad's wishes. I work in hospice, so let me tell you what more likely would have happened had you given in to your urge to take him to the hospital: ED would have determined that there was nothing for them to do and they would NOT admit him to die a miserable death in the hospital. They would either send him back home or try to find a bed in a hospice unit, because they don't want deaths in the hospital affecting their statistics, which directly impact their reimbursements. I can't tell you the number of times we've had someone arrive at our unit only to expire minutes later, or already dead. They didn't even get a miserable death in the hospital, they got a miserable death on the road, being trucked all over the place, jostled on transfers from beds to stretchers and back, usually without loved ones or having them arrive at the last second.

The eating thing is a very good sign they're getting close, and yes, it's extremely hard for families to accept. Especially those folks who love through food, like I do with my cooking, are going to struggle to accept that they can't help their loved one that way anymore. When they're in our units, we get accused of starving them because we accept their refusal and families get angry. Then we find them trying to force feed. Our educational materials and nurses are very good, but understanding mentally and accepting emotionally are two very separate things.

I hope that when you get the opportunity, you'll dispel some of the myths about hospice when you hear them. When you feel ready, of course. Condolences on the loss of your father and thank you for posting. :hug:

Specializes in pediatrics; PICU; NICU.

Thimbalina,

You did not "let him die". He was dying anyway and you allowed him to die on his terms.

It's been 17 months since my dad died. He was in an inpatient hospice unit where the nurses were pulled from other areas of the hospital & never trained in what hospice actually is. They treated the hospice patients like regular med/surg patients including pushing for many of them to have feeding tubes place. Dad had 2 nurses who refused to give him adequate morphine because it was against THEIR own personal policy. I told them this was not about them, it was about making sure my dad was comfortable. We had to go all the way to the medical director of the hospice unit at 2 in the morning to get my dad what he needed. We contacted another hospice to see if dad could be transferred. That hospice director explained to us that if dad was moved at that point, it would disrupt the dying process and make him more uncomfortable than he already was. We didn't want to do anything to prolong the inevitable so we left him where he was. Less than 24 hours later he passed away very peacefully with my sister & her 2 Yorkshire terriers at his side. I'm so thankful that we fought for what he needed and he was able to have a pain-free death. I wouldn't want to remember him in all the pain he was in.

Specializes in Critical Care, ED, Cath lab, CTPAC,Trauma.

I m so sorry for everyone's loss.....I lost my Dad too. We made the decision to remove him from mechanical support. I know it was the right thing....but I miss so much. ((HUGS))

Sometimes you ahve to love someone enough to let them go.