The Patient I Failed

[nerdtonurse?]

She knew what she wanted.

She'd watched her husband of 52 years die on a vent, and followed his wishes to remain a full code. But she knew that was not what she wanted for herself.

So, she wrote a Living Will, had it notarized, gave it to her personal physician, told all her friends and family what she did not want. She wasn't eligible for a DNR, as she was a healthy 89-year-old, but she knew what she wanted.

Quote

"I do not wish my heart to be restarted through usage of any chemical, mechanical or physical intervention..."

Of her 6 children, one fought against her mother's decision, and it was this child, this one desenting voice, who found her mother collapsed on the kitchen floor.

Quote

"I do not want any external device to be used to maintain my respiration if my body is incapable of sustaining it on its own."

The daughter told EMS her mother was a full code, and they intubated her on the floor of her kitchen. Once at the ER, her heart stopped, CPR was performed, and her heart was shocked back into a beat. Under the hands of those trying to follow the daughter's wishes, the woman's ribs cracked and broke.

Quote

"I wish to die a peaceful, natural death."

She was then sent to ICU, where her heart tried to stop 3 more times. Each time, the broken ribs jabbed and ripped into the fragile muscle and skin as CPR was performed. Electricity coursed across her body and her frail heart was restarted a 4th time. By this time, the other children were there, but the act had been done, over and over. No DNR was written, and the Living Will fluttered impotently at the front of the chart.

Quote

"I do not wish artificial means of nutrition to be used, such as nasogastric tubes or a PEG tube."

Her swallowing ability was lost in the storm in her brain that had left her with no voice, no sight, no movement. A scan showed she still had brain activity; she was aware of what was being done to her. Including the PEG tube sank down into her stomach, and the trach in her throat.

Quote

"I wish nature to take its course, with only medication to prevent pain and suffering."

The daughter who wanted the mother to remain a full code also refused to allow narcotics to be given, stating she did not want her mother sedated, since she would "wake up" when the correct medical procedures were performed. Her nurses begged the doctor to write a DNR, and he said, "the family can't get it together, and I'm not getting into the middle of it."

Quote

"Allow me the dignity we give to beloved pets. Let me die in peace."

I met her one Tuesday night, and spent that night pouring Jevity into her tube, only to suction it back out. Her legs were cool and mottled, her bowel sounds were non-existent, and her blue eyes stared blindly at a ceiling she could no longer see. The MD refused to terminate feedings, but I held them since there was no digestion taking place. The woman was turned and repositioned every 2 hours, and each time, she moaned and gurgled as her lungs slowly filled with fluid. I whispered my apologies as I did the very things to her she tried so hard to prevent.

Suctioning improved her lung function, but would make her body tremble. Over the next 2 nights, she slowly died, all while the daughter demanded more interventions, and maintained that her mother wanted to be a full code. We had read the Living Will. We knew better.

Quote

"Thank you in advance for helping me in the last moments of my life to have a gentle, peaceful passing."

She had another stroke, and went back to the ICU, where she was coded until there was not enough surviving heart tissue to maintain a beat. Finally her heart was broken.

And so was mine.

The-Patient-I-Failed.pdf

[mama_d, BSN, RN]

I so wish that I could print this out, frame it, and hang it in every one of the rooms on our unit.

[ajessrn, BSN, RN]

It is difficult to let go, but sometimes it is what is best. recently my grandmother had to have emergency surgery for a perforated ulcer. she did fine with the surgery, but two nights later had a massive stroke that would have left her paralyzed and unable to eat, speak, or open her eyes. she would have died eventually with or without machines. because i am a nurse my aunt and uncle and mother all looked to me to help them make the decisions necessary when faced with these kind of circumstances. my uncle was passive, whatever everyone else wanted. my mother had decided nothing more should be done. my aunt wasn't quite ready to let go yet. it was decided that no cpr or defibrillation would be done, but if she needed to be on a vent that could be done short term. two days later she needed the vent. they did another ct that showed the true extent of the damage and that was when the MD gave us the news that nothing more could be done, she would die. fortunately that was all my aunt needed to let go, and only about 12 hourse after whe was placed on the vent she was taken off and allowed to pass on her own. it was what she would have wanted even though she did not have a living will made up, we knew. i tried to just be supportive and informative and allow my grandmothers children to make thier decisions without me really voicing mine. it was their decision not mine. but i am grateful that i felt they made the right decision for her and what she would have wanted. i don't think she would have wanted the vent, but it was only for a short time and it gave my aunt and all of us more time to prepare to let go.

i think it is horrible that the daughter did not respect her mothers wishes. it was a selfish thing to do and i hope that her children do not do the same to her some day.

[iluvivt, BSN, RN]

Sometimes family members are thinking about themselves instead of their loved ones. It takes an incredible amount of love and strength of character to let go.....say good bye for the last time. My dad the the baby of his family has watched his entire family of origin die and each time with great love I saw him make and carry out a decision either not to seek further treatment or limit it so they could die in peace. So it does happen even though I see the opposite every day. There is hope for a better way.

[old rural nurse, RN]

What an eloquent way to describe such an awful situation. I have printed this out and am going to have all my children and husband read it, and let them know I will haunt them if this happens to me! I can't imagine how the daughter will ever forgive herself if she ever realizes what she has done. The physician should be drug out in the street and shot for allowing this to happen. I've seen docs act in both manners, protective of the patient's rights, and also afraid to stand up to an ignorant family member throwing their weight around. I can only surmise that the daughter had some tremendous issues of her own to deal with, and likely needs counselling and prayers. I do think this article should be submitted to a major publication (non-nursing) so others outside our field can have some idea of the issue and begin dialog. Congratulations on a well written piece!

[Mermaid in the Sea]

sorry to hear that about your grandmother i know that losing someone you love is really difficult, but thank goodness the right choices were made!!

[skwlpn]

Just beautiful....

[namaste_71]

What a sad and beautifully written story. If I am ever facing the end of life in a hospital ICU, I hope I have a nurse with a heart like yours.

[FLOBRN]

So sad but so often true.

[nerdtonurse?, BSN, RN]

My goodness! I had no idea I'd win. Thanks for all the votes.

And I've taken up the suggestions, both public and private, that I do something with this, and I've sent it to Reader's Digest.

Thanks again!:tku:

[Anna134]

had me in tears thank you so much for that story

[marsuz]

I couldn't have expressed that experience better, even though I've lived it many times.

I was fortunate enough to stay with my mother at home during her passing and able to continue her comfort measures despite my siblings' protesting.

Today is the anniversary of that day. Thanks!

[Bill Levinson]

Re:

So, she wrote a Living Will, had it notarized, gave it to her personal physician, told all her friends and family what she did not want. She wasn't eligible for a DNR, as she was a healthy 89-year-old, but she knew what she wanted.

"I do not wish my heart to be restarted through usage of any

chemical, mechanical or physical intervention..."

Of her 6 children, one fought against her mother's decision, and it was this child, this one desenting voice, who found her mother collapsed on the kitchen floor.

As far as I know, the initial decision to perform CPR was correct. A living will applies only if the patient is terminally ill or permanently unconscious. Some states prescribe a period of time in which death is expected to allow invocation of a living will. In Pennsylvania at least,

http://www.aging.state.pa.us/aging/lib/aging/Advance_Directives_brochure1.pdf

The advance directive or living will declaration

becomes effective when:

* Your doctor has a copy of it; and

* Your doctor has concluded that you are incompetent and either in a terminal condition, or in a state of permanent unconsciousness. For terminal conditions or permanent unconsciousness, a second physician must confirm your doctor's conclusion.

Since the woman in question was neither terminally ill nor permanently unconscious when she collapsed, paramedics would have attempted to revive her even with a living will right in front of them. On the other hand, it sounds like the living will should indeed have taken effect after the efforts in question failed to prevent irreversible and terminal brain damage.

I went through a similar situation in which my father, who had Lewy Bodies' disease (per autopsy), stopped eating and drinking. I was going to have a feeding tube put in because I envisioned him being hungry and thirsty. (The subsequent Terry Schiavo case certainly reinforces this perception, although I understand that they would not offer her liquids by mouth either). Also, his living will said only that he wanted to refuse CPR and artificial ventilation, not artificial nourishment.

(Perhaps fortunately) he died before I could act on the feeding tube. Furthermore, none of his doctors ever pronounced him terminally ill, so I am not sure I could have even refused CPR or ventilation on his behalf. One ER doctor (he was taken there after being unresponsive in the nursing home) asked whether I wanted anything done if his heart stopped, and I told him I had no idea because he had never been pronounced terminally ill as my state's living will law requires.

Although in this case it sounds like a family member was indeed an obstacle to the patient's wishes, the doctors also have a responsibility to make it clear (in writing) their belief that heroic treatment will only prolong the dying process. This is a legal requirement in my state.