The Patient I Failed - page 19
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... Read More
May 30, '11I have been an RN since 1998 and have worked primarily in ICU for most of that time. I have seen this scenario played out more times than I can count and always with the same result. It makes me angry with the family, but also more than a little sad for them. I cant change family dynamics, but i work hard to explain to people the result of these actions and discuss their feelings. Often the family feels guilty, frightened, angry. All stages of grief. Helping them to talk about it often helps them to finally come to resolution and sometimes allows the dying family member to die with dignity.
I found myself in the shoes of family member a year and a half ago when my mother died suddenly. I had spent the afternoon with her and my dad. They went home, had dinner and were watching TV. She was talking to and suddenly died. When I got the phone call, I thought it was her saying goodnight. It was my dad, hysterical, screaming. The EMS was there doing CPR. It had been 40 min or more. I had to tell them to stop what they were doing. It took all of my strength to make them stop and even more to calm my dad down and make him let them stop. I dont regret that decision.
Jun 2, '11It is so sad that the explanation for these events is probably that the children will be the ones around to sue the hospital, not the poor patient that had their most important wishes destroyed. Great article. Thank you for sharing
Jun 11, '11Quote from nerdtonurse?As sad as this is, the reality is it happens all to often.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.
"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.
"I do not want any external device to be used to maintain my
respiration if my body is incapable of sustaining it on its
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.
"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.
"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.
"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."
"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-existant, 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.
"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.
Jun 12, '11Quote from kbucksnLiving Wills vary by state so the following relates to Alabama - here the living will can be over-ridden by family. Whether there is 1 or 100 family members it only take one to undo a living will. Most people believe that the living will is a solid binding legal document but here it is not. If a person wants to make sure that their wishes are followed they appoint a "health-care proxy". A proxy speaks for the patient and overrides any family members attempt to ignore the living will...................
Now please excuse my ignorance as I am a pre nursing student, but what I don't understand, which Im hoping you can help me to, is having a Living Will in the chart, why were these interventions continued by the doc? I understand when EMS arrived and the daughter lied, but when they reached the hospital as well as the codes that occured after that time, why were heroic measures performed and the Living Will ignored? Working in hospital envirnoment in the past I have seen occasions where the doc has had to basically apologetically inform a family memeber that they are following the Pt's wishes. Is it because heroic measures had been taken from the beginning so they must continue? i don't quite understand the protocol or legalities behind that. I would have thought that once the Living Will was discovered they would have to follow it regardless of the wishes of the daughter. Did they bring in a social worker or anything to discuss the ramifications, etc with the daughter? How does that all work? Its awful that docs should have to take a "I dont want to get in the middle" stance on such things, when they know full well the Pts wishes are not being respected. But I can understand out of fear of the every looming possibility of a medical malpractice suit, they really have no other choice.
Now, as to the social worker to talk to the offending family member, by the time this can be arraigned the damage is done. Working in the ER I saw many living wills ignored and several fights breakout between family members that disagreed about whether to follow the will or not. My oldest son holds my proxy because I know that 4 children cannot agree on anything.
I have seen physicians continue coding patients on arrival despite having the will on the chart just because "it was started in the field" or because they did not have time to review the document. Patients have very little control of themselves while under medical care, physicians sometimes forget that just because you can does not mean that you should. I think that medical school needs to add a new required course - Respecting the Living Will or Stop playing God and follow the patients end-of-life requests.Last edit by Dragonnurse1 on Jun 12, '11 : Reason: spelling
Jun 16, '11No, you didn't fail her, you cared for her and she knows that. Any of us who work in critical care can definitely understand what you went through and felt. My prayers go out to you and please know you were a blessing to her during her last days.
Jun 16, '11You feel you failed, we feel the physician failed, we know the system failed. A suggestion--the POLST is a tool that can help. If your state does not have a POLST program, help make it happen. Check out POLST.org or http://www.ohsu.edu/polst/index.htm. Sometimes we participate in care (or lack thereof) that is unethical, as the author did here. It happens to all of us, though not always so dramatically. It's highly complex, and for better or worse the patient's family becomes our patient, too. All I can say is, utilize your resources and push all your colleagues (that includes MDs) to deal with these difficult issues. Call your social workers, your nurse manager, certainly your Palliative team (if you're lucky enough to have one), a patient advocate, a care planner, an ethics consult. I'm spoiled by having a lot of resources at a university hospital, but in another setting perhaps hospital administrators or social workers pinch hit when there is no patient advocate?
Jun 17, '11i worked as a hospice nurse for 12 years and this story is far too often the truth. we are selfishishly scared and do not let our loved ones go because of our own personal loss issues.
please talk with your family members and get a health care proxy completed today. it is free and accessible on-line. all you need to do is have 2 witnesses sign it and give a copy to your family member and doctor. believe me it is so much easier to talk about these issues in the non-crisis mode than the crisis icu situation described in this article. also, your hcp representative is legally supposed to agree to uphold your wishes not theirs! so pick someone that you trust and that is strong and reliable. blessings to all those who have suffered unnecessarily due to these issues.
and no narcotics...unheard of! my brother complained at my mother's death bed.."they have you all doped up mom"...yeah becasue she was in terrible pain. miss you mom and dad...glad hospice was there for you at your end of life process and that you were not attached to tubes and machines in the icu receiving futile treatment.
thank you to all the nurses who care enough to make an immediate ethical consult when these issues occur in their care!
Jun 22, '11Beautifully written! As nurses we have all experienced this at least once in our career...and the other end of the scale...where the patient's family wants you to euthanize their family member...what is wrong with people??? What is wrong with a system that allows a person's wishes (when made of sound mind) to be ignored? One can only hope that people who force a family member to go through something they have specifically requested to not have to endure, will receive their share of karma.
Jun 23, '11It's amazing the spectrum of response to impending death. I've had people who couldn't be in the room, we had to go get them from the waiting room and pull them into the crying room when the patient died, all the way to a guy who crawled in bed and held his dying father in his arms. I've been the unwilling witness to families that fell to fighting and letting every suppressed slight or moment of anger over the lifetime of the patient explode all over the unit. I've had people who wanted me to keep a dying person alive at any cost (to the patient) so they could continue to live off their check. I've had "camp euthanasia" who wanted the patient to pass on immediately because "everyone's here this weekend, and that way they wouldn't have to come back again."
For me, it's an honor to be present at a person's passing. Those who've been in my care their last night on earth are gently washed, made as comfortable as possible, I hold their hand and tell them it's okay to go, not to be afraid. I give the family as much or little support as they want, and I tell the patient that I'm looking after their family, too. I've made sure folks who were diabetic got something to eat, sneaked warmed blankets out of the PACU for family members who were cold in the middle of the night, and I've been cried on, had people ask me "why?" and called out of state family members in the middle of the night for that one phone call you never want to get. Right now, I split my time between ICU and ER, but when I get too old for my knees to take it on the floor, I hope I'm good enough to work for hospice.
Thanks for all the reads, folks. 3x the population of my county has read this article. Maybe I've done a little bit of good somewhere.
Jul 8, '11On May 16, 2011, I lost my mother to pneumonia among other things. We had no living will, but I felt certain she would not want to be intubated. She was on bi-pap most of the time, but occasionally they would try to wean her from it and put her on a non-rebreather. She couldn't talk, but could nod her head yes or no. I asked her if she stopped breathing if she would want to be intubated and she shook her head no. Two days later, she passed away. I have felt so guilty since that day thinking I should have told the nurses to do whatever they could to save her... Your letter makes me think my mother and I did the right thing. It has helped me heal a little. Thank you for sharing this with us.
Jul 9, '11Why do family members do this I am currently a terminally ill nurse with IPF and have a living will. If either of my children or husband ignore it I swear I will haunt them till THEIR dying days. I have been vented before and I DO NOT want to live the rest of my life like that. Right now living with an oxygen saturation of 82 I know it won't be long but my daughter still refuses to believe that ther is anything wrong with me. So, she is the one I am afraid of as I know she will say: "do everything, she'll pull through this just like all the other times" I wish she would realize I am at the end of my life and just enjoy it with me rather than fighting me.Last edit by obienursern on Jul 9, '11 : Reason: mis-spellings and additional information
Jul 9, '11God commanded to honor our father and mother. It's sad that even the very last wish of a parent, the child found it hard to just obey.