Family just wants Grandma to die

rita359 · Mar 5, 2011

Roser, working night shift I never see the families of residents for the most part, unless they are very near death. Other shift nurses have told me that the family does come in, but do not stay long.
Anon, this lady has Alzheimers and cannot make her own decisions. One of the nurses told me that having pneumonia is like feeling a very heavy weight laying on your chest, that cannot be comfortable at all. A long slow suffocation...
Thank God for O2, Roxanol and Ativan

Lady has Alzheimers. Mind is going, going. Family has watched the downhill slide. There is no merciful way to intervene except to let nature take its course. Abts can do wonders but WHAT wonders would it do in this case?

leslie :-D · Mar 5, 2011

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.

tewdles, we both know that c-diff is usually a result of pt having ongoing hx of potent abx.

it usually doesn't show up in pts who take the occasional levaquin x 7 days.

also, and esp with dementia, pills are crushed.

what i'm saying is, of course you're going to assess the pt's entire pmh and decide accordingly.

again, if this pt had indicated otherwise, and/or the family is actually honoring her wishes...then i'm fine with it.

i am taking issue with us (generic use) deciding what is best for the pt.

we have discussed this a million times when assisted suicide debate is the topic...

and the "slippery slope" it encompasses.

why is this issue any different?

when i was in ltc, we had a mentally retarded woman admitted to us, from a state mental institution.

she was violent and animalistic.

she ate with her hands, would throw food when she didn't like it, would bite, kick, scratch, etc.

we nurses, took her under our wing and within the year, she was quite the lady...

non-violent, happy, affectionate, and LOVED her barney tapes.

shortly thereafter, our facility had contracted with an hmo, and we had a revolving door of np's taking over our pts.

when 'ethel' was assigned a pcp, the FIRST thing the dr. did, was make her a dnh (she was already a dnr)...

basically stating that due to her mental retardation, and her gtube (yes, she had gotten a gtube within the time she came to us), her quality of life was presumably subpar, and thus the reason for not hospitalizing her.

i freaked.

here was this viable elderly woman, who according to herself, was extremely happy.

it was obvious...that ethel had responded very positively to all the fussing and love she had received by the nsg staff.

she had this 24/7 smile on her face, and singing along with barney while her arms waved, as if conducting an orchestra.

while i didn't yell, i was visibly upset, NOT understanding the rationale to address her life as relatively worthless.

and i am experiencing a similar reaction to this pt.

is this pt miserable? (we KNOW how horrible it is for the families).

and as stated, even if she was visibly miserable, isn't that still the makings of a slippery slope, when we decide whose life is worth living or not?

the only reason i asked about po abx, is because i consider pneumonia, esp in its early stages, a highly treatable situation.

to not treat it when the pt is still otherwise, highly viable...i'm just not understanding it.

i would be perfectly fine, when this pt loses her abiility to swallow, in starting comfort measures then...

and would strongly advocate for her NOT to get a gtube.

afterall, this is a natural sequelae of alzheimer's disease.

getting pneumonia, is not.

the only time atb didn't work for one of my pts, is when she got strep throat, and she said it did help with the pain.

however, she had too many other processes going on, that rendered the atb useless.

i was fine with that, and had no desire to implement anything more invasive.

finally, tewdles, while families should act on behalf of the pt's wishes, we know that is not always the case...at all.

esp with alzheimers, where caregivers are grief-stricken, exhausted and empty.

it's a horrible, devastating disease, much moreso for the family.

i do pray for this pt, and take comfort in knowing she will be treated with the compassion (and meds) that she deserves.

at this point, i can't wish for anything more.

leslie

MouseMichelle · Mar 5, 2011

That's rough. Okay I can understand if for example the patient is one who has had a major stroke, cannot talk, cannot move and basically lies in bed all day with very bad contractures, sure, don't give her the abt's and let her go. However, if it is a patient who has a good quality of life then treat her. Is there big money involved? Are they hoping for an inheritance? Seriousy....

backatit2 · Mar 5, 2011

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?

ugh - see, the thought of how hurtful that would be to my kids (and how hurt i would be if i knew it was happening) would be much worse to me than just dying. if i'm to the point that i'm incontinent and don't know who my kids are - i don't want to live. screw that.

steelydanfan · Mar 6, 2011

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.

"An occasionally lively lady", and it's not until your NEXT post that we find out she has Altzheimers?

Your original post was somewhat misleading, I must say. And yes, I agree with the families decision. I pray mine will do the same for me.

steelydanfan · Mar 6, 2011

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.

Beautiful, touching and so very truthful. Thank you for sharing with us.

Quark09 · Mar 6, 2011

Meh; it would bother me... but unfortunately I have a tendency to have a bit of transference, especially with little ones and the elderly (what if this was my baby? What if this was my grandma?) Not always the healthiest attitude to have toward every single patient on my floor :-/ So, OP, yes, it would bother me most vigorously... but, if as another poster wrote, she was in an extremely advanced stage of Alzheimer's, OR had no abx specified in her AD, it would make a difference.

That said, we don't know what's going on with the family, how long they've been watching their loved one deteriorate - maybe one of her other doctors had a talk with them re what to expect at end of life care? And in another thread, there was mention of the vast amounts the U.S. spends on prolonging life, and there's much truth to that.

But, I'd still be thinking "what if that were my grandma?"

BluegrassRN · Mar 6, 2011

But, I'd still be thinking "what if that were my grandma?"

I don't want my grandma to linger. I see many of my geriatric patients in the hospital, who don't know where they are, what they're doing, hollering for their mother/father/husband/friends all of whom are dead; incontinent of bowl and bladder, are dependent upon others for their bodily movements including turning in bed, can't watch tv, read or knit any more due to visual deficiencies and arthritis in the hands, can't listen to the radio because they can't hear well....please let me die before I get there. I wish my grandma would have died before she came to this.

Compassion doesn't mean we keep them alive until no possible quality of life is present.

leslie :-D · Mar 6, 2011

I see many of my geriatric patients in the hospital, who don't know where they are, what they're doing, hollering for their mother/father/husband/friends all of whom are dead; incontinent of bowl and bladder, are dependent upon others for their bodily movements including turning in bed, can't watch tv, read or knit any more due to visual deficiencies and arthritis in the hands, can't listen to the radio because they can't hear well....please let me die before I get there.

let me ask you:

while any observer would wince at this seemingly mere existence, does the pt realize they have a poor quality of life?

once again i ask, are we supposed to determine who should die or not?

if so, it won't be long before we start 'executing' all elderly, mentally challenged, criminals, or whoever else we deem unfit for earth.

i'm really trying to understand here, folks.

if we decide the aformentioned should die, will we just refuse to treat all infectious processes (and other curable conditions)...

and replace abx with morphine?

seriously, what am i missing?

leslie

Lovely_RN, MSN · Mar 6, 2011

To the OP, are you certain that this isn’t the wish of the patient? I know we get attached to our LTC patient’s and it’s hard to watch an especially sweet patient die but if it was me this would be my choice 100%. Who is to say that the patient didn’t say this is what she wanted prior to becoming mentally incapacitated?

I couldn’t accept the loss of my physical or mental independence. I have it written and I’ve said it numerous times. The day I can’t think for myself or wipe my own bottom is the day I’m done. It would be intolerable to me to have to have someone care for my physical needs or to wander around in a state of confusion for years regardless of whether I appeared to be happy or not. It's just not what I want for myself. I have a family h/x of dementia and death from untreated pneumonia would be my preference.

Is it possible that the patient had a long and fulfilled life and that she would prefer to go this way rather than continue to gradually decline into an inevitable state of contractures, feeding tubes, and increasing confusion? Today the patient is sweet and not agitated, maybe in a year she will be bed-bound and feel that she is being attacked every time you come in to give her meds, when the aids come in to clean her, or when you administer her tube feeding. I really hated it when I had a combative confused person screaming at me to leave them alone because they felt that I was assaulting them every single day. What a horror for the patient.

ETA: I know it will never happen but I wish that there was some way to educate people and make them write down their wishes before they become incapacitated.

Just a fantasy of mine that will likely never come to fruition.

Platypus · Mar 6, 2011

Thank you to all of you who replied. I have always felt that some things were unnecessary (like surgery or invasive procedures) to keep an elderly person alive, but something as simple and common as antibiotics should be given because it is relatively easy, not so invasive, and they could "bouce back" and enjoy a few more weeks or months of life. But, I guess I can see your points and I feel better about the situation. I don't have a problem with people dying - it is a part of life and it helps to believe that this is not the end of our existence. I just felt her death was being hastened unnecessarily.

Thanks for your input!