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.

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"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

[My Dee]

You have such a big heart and soul in you . You did not fail your pt, her daughter did. This is exactly why I have POA and have made sure my Mom has a Healthcare Directive/Living Will . My Mom will go with dignity and grace when it's her time to go. I will go by her wishes and not the rest of the family's /doctors wishes for her because I love her more then words can say.

[CeeNurse12, RN]

This was one of the most beautifully written pieces articulating what so many of us feel in such circumstances. Thank you.

[marsmoon]

The situation is a tragedy for the patient and for the family who cannot let go. I have often wondered what demons lurk in those family members and have felt nearly as bad for them as for the patient. I end up praying for them all. Physicians should be able to write a DNR based on Dx and a living will without fear of retribution. Physicians should also stand up to families that want to deny pain and anxiety relief to terminal unresponsive patients.

[SENSUALBLISSINFL, BSN, RN]

I am so sorry you have to go through this. Especially, you being a nurse and know exactly what this is doing to your mum. How can your sister not know that this is just prolonging the inevitable, and making her suffer?

Sending you a virtual hug, that God have mercy on your mum.

Reading this made me break down and cry as I am currently in the same position, but my mom is the patient, and my sister is the one doing everything and anything to keep her "alive", even though mom made it plain and clear what she wanted and did not want.

Unfortunately mom failed to sit with me and do an advanced directive, nor a power of attorney, which has allowed my sister to continue to push the hospital to do everything in it's power.

Mom went in to the the hospital on July 31st, 2008 for a triple bypass. She ended up having 5 bypassed, in addition to mitral valve replacement. The surgery that was to last 5 hours actually lasted more than 8. She went into V-fib 3 times and was on and off bypass several times. She was hypoxic for some time, however the doctors did not note the length of time in the OP report, conveniently I might say. Anyway, needless to say, mom suffered major brain damage. She was comatose until just a week ago, and the signs of neuro deficit is there. She has a trach, something she absolutely did not want, but because of my sister.... I tried to inform her of the tremendous risks of a trach, to no avail. The trach was put in on August 9th and on August 13th was Pseudomonis positive in her lungs and Staph positive in her left sided intra-jugular line! Hmmmm sure didn't see that one coming! Of course you realize I have absolutely NO clue whatsoever about trachs, infections, feeding tubes, etc.. cause I'm just a nurse and trachs, vents feeding tubes, neuro, etc ARE MY SPECIALTY!

UUUGGGHHHH I just want to grab my sister and knock her silly because she knows exactly what mom wants and does not want done, and my sister is only keeping mom "alive" for her own selfish wants. I see my mom laying there in pain, suffering. She looks at me and in those very brief moments of cognitive awareness, she puts her hand to her trach and cries. I ask her over and over, "do you want that out?" ands she shakes her head yes. I tell her "mom, you need to say the word out, you need to mouth it for the nurses and doctors to know that you are aware enough to make that decision, and she tries so hard, but by the time the doctors or nurses finally get to the bedside, she is exhausted from having tried so hard, fighting the vent.

PLEASE LEARN FROM MY SITUATION! Make sure you have not only and advanced directive, but also a Power of Attorney for healthcare. I love my kids and husband enough that I have hand mine and in my chart at the hospital and with multiple people for the last 12 years. Please don't make your family have to decided and fight. It's bad enough that my mom is going to die, there is no question to that. The question is HOW LONG WILL MY MOM SUFFER due to the selfishness of my sister???

Sorry this is so long, but everything is still so raw. Today is day 31 post op and it hurts so much to see her like she is.

Thanks all for listening, as I truly needed to vent.

Gayla

[SENSUALBLISSINFL, BSN, RN]

To the OP, I am sure deep in your heart you know that you DID NOT fail your patient, but right now it is hard to see.

We all have here rallied together here and embraced you to tell you that because you need to hear it and feel it at this time. You wrote it beautifully, you have honored your patient.

The lack of education of some lay people is what drives them to make such decisions, I fear this daughter will regret this at some point, and I can only hope that she too will find someone to console her.

Hugs.

[vwellsdreamer2]

So beautifully written and so sad to hear that a family member had rather think of themselves then the very last wishes of their mother. I have seen this, working as a hospice nurse. Families not wanting their loved ones to have narcotics, I for the life of me don't understand this. In their last days on Earth let them feel no pain, please.

[Joyful2bee, ADN, RN]

I retired from nursing six years ago. But this brought back so man memories. I know exactly how you felt, as I am sure most of us do too. This was so well written. Thank you for sharing this painful experience with us all.

By the way, I have given Health Care Power of Attorney to my best friend who is also a nurse. I have talked with my sons and made it clear what I do and do not want done for me if I pass away. This is a great lesson for all of us.

[Nursechef]

First, there is a Living Will available signed by the pt. There is an Ethics Committe in every Hosp. And a Lawyer assigned to the Hospital who could have been contacted to ask the Courts about following this patient's wishes. The paper was witnessed and recorded in the Courts is legit. No one should have done nothing. Also a Nurse gas the right to refuse an assignment anyway. This is tragic where a patient paid fir this paperwork and bo one abides by it. This is to tell everyone what she refuses. I wished that she could survive and sue because this is battery. This is a crying shame.

[calivianya, BSN, RN]

First, there is a Living Will available signed by the pt. There is an Ethics Committe in every Hosp. And a Lawyer assigned to the Hospital who could have been contacted to ask the Courts about following this patient's wishes. The paper was witnessed and recorded in the Courts is legit. No one should have done nothing. Also a Nurse gas the right to refuse an assignment anyway. This is tragic where a patient paid fir this paperwork and bo one abides by it. This is to tell everyone what she refuses. I wished that she could survive and sue because this is battery. This is a crying shame.

Ethics committees can only make recommendations and talk to the family members and care team - they cannot take over the whole situation and make medical decisions.

I see this play out all of the time - just one family member gets it into his/her head that mom has to be a FULL CODE, that you must DO EVERYTHING, and everybody else (including the patient and all of the rest of the family) pays for it.

The thing is that a patient who dies as she wants cannot sue. The family members who survive her can. Even if the case is spurious, it's something hospitals don't want to be public. The son goes to the news outlets, and the front page headline of the local newspaper reads, "XYZ Hospital Killed My Mother" with a dramatic statement from the surviving family member that the hospital was unwilling to provide lifesaving treatment for his mother and just let her die. Nevermind that's what Mom wanted to happen. Stuff like this is deadly for hospital reputations, and patients can choose which hospitals they go to for treatment now. Hospitals are terrified of this sort of thing happening. It's so much easier to torture someone who wants to be DNR to death than to follow her wishes and risk a PR backlash when the unhappy family takes their grievances to the media.

[CrazierThanYou]

I want to know what you mean by "she wasn't eligible for a DNR"?

[NickiLaughs, ADN, BSN, RN]

That right there is why I left ICU.....and I'm so glad I was able to talk my grandma into honoring my grndpas wishes.....it took 3 days and she still holds a grudge against me....but he died peacefully. Beautifully written.

[HisInService]

Written almost eight years ago but is still very touching... Thanks for sharing!