Family just wants Grandma to die

[Platypus]

I am appalled at a situation at work, as well as the other nurses and aides, about a patient who developed a cough one day. The cough became pneumonia - because the family decided her quality of life was bad and refused to allow her any antibiotics. They decided to put her on hospice. So now we watch an occasionally lively lady who hugged and kissed us for taking good care of her, had a sense of humor and playful side, go completely down hill because the family refuses to allow us to give her antibiotics. She may snap back, and we pray she will. I could see witholding CPR, Life support, ect. to allow death to occur naturally... but antibiotics??? I am very upset and it seems they are just trying to make her die, and to them, the sooner the better.

[nerdtonurse?, BSN, RN]

Here's what I wouldn't want to see. Pt comes into the ICU, septic, pneumonia, lungs sound like junk, O2 sats in the 70's. We start pressure support measures and IV Vanc or Gent. Pt doesn't know where she is, the Alzheimers and the constant "non-night" of the ICU makes her become completely demented. Lungs get worse, she goes on a vent, has be to restrained so she doesn't pull out the ET tube. BP starts crashing due to sepsis, now she's on dopamine, dobutamine, and Levophed, kidneys crap out and now they're talking about dialysis. Levophed causes severe blood restriction to the feet and hands, which turn black; docs start talking about how she'd need amputation once she's stable enough for the surgery. Now she's got an NGT with tube feeding, and it's a constant battle to keep her sedated enough to keep her safe, awake enough to let her have some ability to guard her airway. She aspirates, despite everyone's best efforts, and now she's got bacterial and aspirational pneumonia. Feet go necrotic, and all you can hope is that she's not aware enough to smell her own body rotting. This is what I see all the time, and all of this would have been done to a DNR, since their heart's still beating. All of this, weeks and weeks to die, maybe months of suffering, as opposed to letting her pass peacefully in her sleep her own bed at her nursing home, or sending her back home with hospice? Home with hospice, comfort care measures only.

I've had pneumonia, BTW, viral that went into bacterial. I just remember being so tired it would have been easy to not have taken the next breath and slipped away. It's in my living will -- pain relief ONLY, no other meds.

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[leslie :-D]

i'm not talking about going to the hosp...

just po abx in the ltc facility.

if that doesn't work, then comfort measures is fine.

and, if pt has "no abx" stated in the chart, well at least that reflects her wishes.

i've also cared for alz patients, and some had very 'pleasantly confused' dispositions.

i'm thinking of one lady who sang until her last dying breath.

also notable, is if this particular pt is extremely advanced in her alzheimer's (almost or at point of eating non-edible items and/or forgetting how to eat), then i'm ok with it.

but if this pt has early-mid stage alzheimers, then she could have yrs more to live.

even if she presented in a foul mood, unhappy, etc, it's still no one's call except her own.

it's bordering on euthanasia through neglect.

i understand that most disagree with me.

i have felt this way for all of my nsg life, and am not going to change.

folks should be dying r/t their terminal or natural disease process, and not r/t secondary ones.

i'm pretty sure i'm done with this thread...no sense in getting all worked up.:)

leslie

[linearthinker, DNP, RN]

Well if you do come back, I'd be interested why there is a difference b/w dying of Alzheimers, etc vs secondary causes? I personally would not want my infection treated in such a case as the OP, and I wouldn't treat a family member. Right now, the law says individual patients and families get to make that choice. (I know you would be horrified to hear my opinion on that s o Ill spare you. ) I think the OP just needs to support them through the decision and do whatever she can to make the inevitable as easy as possible.

[CCL RN, RN]

.

I've had pneumonia, BTW, viral that went into bacterial. I just remember being so tired it would have been easy to not have taken the next breath and slipped away. It's in my living will -- pain relief ONLY, no other meds.

.

Me too. Pna made me tired and febrile. I cuddled under blankets and would have been happy to close my eyes and fall asleep into death... Just let me go...

I am reminded when I cared for my mom at my home. I was a single mom, worked full time and had two children with disabilities. During those years, I worked endlessly day and night. It was a very good and also a very difficult time. Sometimes I loved my mom, and othertimes I resented her. It was more the exhustion, then real feelings, but I didn't know it then. So, I started to think I was really selfish, and was upset over my more negative feelings. One of her problems was alzehiemers. When she started waking in the middle of the night, and began wandering, I finally made the deceison to place her in a long term facility. By this time, I was so worn out, I didn't have it in me to do frequent visits. I had to regroup and get my strength back physically and emotionally. About the time I was beginning to feel stronger emotionally, and had gotten some sleep under my belt, my mom started to decline. (again). You might know that sometimes families go through a roller coaster ride with illness, near death, and back to health, only to repeat the cycle over and over again. You drop everything, take time off work, You begin grieving, praying, begging, and then she's fine. Two months later it all starts over again. It takes a toll on you.

By the time my mom, (and it was her deceison) decieded to forego an operation that would bring her back to the repeating cycle, I was exhusted. Then the family who all stayed away for years, now wanted their wishs to be known and met. Everyone, everywhere came out of the woodwork. If dealing with the doctors and the staff at the nursing home weren't enough, I had to deal with many people who had no idea the things they though would help, really wouldn't. This was very hard, and some members of my familty wanted to start taking her things now, before she passed. Suddenly 90% of her clothes went missing, suddenly her bedspread and bathroom and slippers were gone. Not by a roommate or lost in the laundry, but by family members. I had bought those things with my own money, and now had to go shopping and replace them. It was just all so tiring. I stuck with my mom's wishes and she died with me beside her. None of them could be bothered to sit with her, and I called them all.

The day before she died, she rallied, she had been comatose for a couple of days. It was her birthday. She sang, danced, ate a Subway sandwich, blew bubbles and make a tape recording saying goodby to everyone individually. Then she said she was tired and we laid her down and kissed her good night. She died the next afternoon.

I was tired, to the point of not feeling anything emotionally, I had given all I had for years. We don't always see the background of what has happened before they get to us. They may be just all used emotionally.

Thank you for this post. It's easy for us to incorrectly assume what goes on behind the seems...sometimes nothing is easy..

[Flo., BSN, RN]

Perhaps this woman had talked to her family before the alz struck and made it clear to them that she would not want to live that way. I know my nana always said if I lose my mind just let me go.

Personally I would not tx my family members and I would not want tx. Sometimes letting someone go is the most humane thing to do.

[nursel56]

i guess i'm the only one who is disturbed by this.

even when on hospice, i always got treatment for infections, whether uti or uri...

as long as it wasn't r/t the admitting dx.

i'm not going to get long-winded about this, but i think it stinks to high heaven.

leslie

Cyber-exuberant hugs! No, you're not the only one disturbed by it. In fact, I was recalling that you told us- hospice specifically allows for antibiotic therapy for those who think treatment should be withheld for any and all conditions that may develop, and there are a number of scenarios I can imagine it would be "lights out real quick" if a treatable condition was regarded in some way as an agent to hasten death. Really makes me wish everyone had a detailed Advance Directive in place.

[Junebugfairy]

the cough became pneumonia - because the family decided her quality of life was bad and refused to allow her any antibiotics. they decided to put her on hospice.

my own father was placed on comfort care only, no abx. he had 6 strokes, and while he was pleasantly confused at times, and i hated the thought of his death, i knew that was not what he ever wanted for himself.

he made us promise that we would not hook him up to iv's, tubes, and give him drugs which would only bring him back for another short time until another "thing" happened.

we honored his wishes, as painful as it was to know he would die.

i am glad, however, that he did not die from falling and breaking a hip, nor choke to death on food he could not tolerate. i am thankful that in the days leading up to his death he was comfortably cared for, even ate a meal when he got a sudden energy boost. ultimately, he died at 5:00am, in his sleep.

i think his death was dignified, mainly because i know it is what he wanted-even though it was difficult for us.

perhaps her family was aware of certain tx she did and did not want.

[JenniferSews]

It can be easy to judge patients and families, but be careful to allow each family to process end of life in their own way. I have had residents pass suddenly and those who's progression was long and drawn out. ABX might seem like a simple solution and an easy fix. But I happened to be on one night by myself. The family was unavailable and I made the call to send a resident out. The family was nice and understanding, but made it clear that in the future we should not intervene.

I then watched sadly as the much loved patient struggled for each breath for another few months, anxious from feeling SOB and also more confused each day from hypoxia. Looking back it would have been a blessing to let her go peacefully instead of the agony of those last few months. I still feel guilty.

Personally my grandmother has been battling ALZ for a decade. She is no longer able to communicate, move, or recognize even the daughter that comes to visit her daily. A peaceful death from PNA would have been welcomed years ago when those who loved her were still recognized as loved ones. She would have gone with dignity as she wished and we would have memories of a happy, albiet confused, grandmother. Instead we watch this husk of a person simply existing.

Sometimes death isn't the worst thing that can happen to a person.

[Junebugfairy]

i also felt some sense of comfort in knowing the old tale "pneumonia is the old man's friend.." it made me think that there were other really terrible ways to die, and his was as peaceful as possible.

[nursel56]

Here's what I wouldn't want to see. Pt comes into the ICU, septic, pneumonia, lungs sound like junk, O2 sats in the 70's. We start pressure support measures and IV Vanc or Gent. Pt doesn't know where she is, the Alzheimers and the constant "non-night" of the ICU makes her become completely demented. Lungs get worse, she goes on a vent, has be to restrained so she doesn't pull out the ET tube. BP starts crashing due to sepsis, now she's on dopamine, dobutamine, and Levophed, kidneys crap out and now they're talking about dialysis. Levophed causes severe blood restriction to the feet and hands, which turn black; docs start talking about how she'd need amputation once she's stable enough for the surgery. Now she's got an NGT with tube feeding, and it's a constant battle to keep her sedated enough to keep her safe, awake enough to let her have some ability to guard her airway. She aspirates, despite everyone's best efforts, and now she's got bacterial and aspirational pneumonia. Feet go necrotic, and all you can hope is that she's not aware enough to smell her own body rotting. This is what I see all the time, and all of this would have been done to a DNR, since their heart's still beating. All of this, weeks and weeks to die, maybe months of suffering, as opposed to letting her pass peacefully in her sleep her own bed at her nursing home, or sending her back home with hospice? Home with hospice, comfort care measures only.

I've had pneumonia, BTW, viral that went into bacterial. I just remember being so tired it would have been easy to not have taken the next breath and slipped away. It's in my living will -- pain relief ONLY, no other meds.

.

I know it's a grey area, but the above wasn't what I was visualizing in this particular case. I think the amount of interest in palliative care and the emergence of hospice as a distinct nursing specialty has been in large part as a rebound to that type of scenario. We've got a long way to go because of all the legal and philosophical barriers to making sure nobody dies that way, but treating pneumonia with abx in an LTC just seems different to me. I understand the line is blurry, though.

[BluegrassRN]

My grandmothers living will stipulated no abx, no blood transfusions, and to allow natural death. Unfortunately my mother and her brother (my grandmother's DPOAs) have overruled that now that my grandmother has had multiple strokes and can no longer make those decisions for herself.

She doesn't recognize any of us, is incontinent, unable to move, and yet lives on thanks to abx. How lovely is that?

[tewdles, RN]

The bottom line is that the family (POA) has apparently determined that the patient should not receive antibiotics and that supportive comfort care will be the basis of the plan of care...including the specific refusal of antibiotics for simple infections.

As the nurse, you may certainly advocate for an oral antibiotic...they get to make the choice. I have watched elderly dementia patients suffer significantly as a result of the antibiotic therapy that their family members requested. Sometimes, particularly when in SNF or acute care, they are overcome by C-Diff. Sometimes the drug itself is not so kind to their kidneys or gut. I have watched confused patients choke and fight NOT to take the big honkin pills that too often reflect antibiotic therapy.

Sure, sometimes we run into families who simply want the person to die...a particular family where grandma had won the big lottery a couple years prior to her dementia dx comes to mind...but in my experience they are the outliers and are sort of easy to discern over a short period of time.

Most of the time we are dealing with family members who do not value the advanced dementia quality of life and would rather allow a peaceful and natural death. Yes, death from an infection can be considered a natural death.

My generation has scores of people who have clearly indicated to their families how they feel about the dementia spectrum of diseases...this LOL may not have had that opportunity. BUT...her family presumably knows her best, and have made a difficult decision regarding what is priority for her at the twilight of her bright moment in the sun.

Honor her by providing impeccable care and kindness. Insure that she is not short of breath or painful. Offer her the fluids and nutrition which will comfort her and give her joy. Speak to her often about the love that so many have for her, remind her that she is not alone, hold her hand, make her smile...

Beyond that, find peace for yourself in the wide scope of hospice. I suspect that you might find my pedi hospice practices quite upsetting as this is not an uncommon pathway in that setting.