Of course, her name isn't going to be included, although I can't imagine her family being angry at what I'm about to write. For this entry, we'll call her Laura.
Laura was a beautiful and kind middle aged woman. She had two teenage children who were also very kind and polite. She had a multitude of friends and relatives that were all exceedingly wonderful to meet and interact with who came to visit her while she was in the ICU.
Laura could have been anyone. Never ill in her life, she developed a blood clot in her leg while on a long airplane trip to Las Vegas with her husband. In itself, this isn't that abnormal. When she got home, she didn't think much of the leg pain until it developed into difficulty breathing. The clot had moved to her lungs. This, although pretty rare, isn't surprising. She was treated with blood thinners and sent home without complication.
Less than a week later, she developed difficulty breathing again and came into the ER. Before I met her, she'd already been in the hospital for almost 2 months. Her lungs had developed so many clots that she actually had been placed on extra coporeal membrane oxygenation or ECMO, which for non medical people is a kind of heart-lung bypass machine. It takes over the work of the heart and lungs while someone recovers, and then hopefully normal blood flow can be restored. ECMO patients are exceedingly sick and often do not recover. Still, she beat the odds and came off ECMO, walking around the unit less than 2 days after being taken off the machine.
She was sent out from that ICU to the step-down unit. She was almost ready to be discharged when she developed a pericardial effusion and had to have a drain placed in the space around her heart. These drains have frequent maintenance needs and possible complications, so she had to be moved to my ICU for closer observation, but also to try to determine what was causing all of her problems.
Long story short: we never really did figure it out. She began to develop clots everywhere. The doctors called it DIC or disseminated intravascular coagulation. This term describes a condition where the body develops clots all through the vascular system. Once the body has run out of the building blocks it needs to make clots, they begin bleeding profusely from every small hole to be found. The treatment for DIC has a lot of research and science behind it, but basically we give them blood products to replace the building blocks of clots so that they don't bleed, and we put them on blood thinners so that they don't clot. It sounds contradictory, but there you have it.
She probably didn't have DIC. There were a lot of small signs in the blood work that our diagnosis wasn't quite on the mark, but the overall shape and symptoms of her illness looked like DIC, and we treated it as such. We really didn't know what else to do. Specialists from all over the hospital came to see her, to sample her blood, and to try and figure it out and as of yet, no one has been successful.
We knew she was dying. She told us this was so. She was very frightened, insisting to us over and over that something was wrong, and that she couldn't breathe. It wasn't that the doctors didn't care, but she was keeping her oxygen levels up to an acceptable level with minimal assistance and there wasn't really much we could do. She probably had more clots in her lungs. Unfortunately, the only thing we could really do for that was to put her on blood thinners, and we already had her on blood thinners for the DIC. Finally, they agreed to put her on a ventilator and submit her to a barrage of lung tests. She was unable to lie flat without the assistance of the ventilator, but she really wanted the testing done anyway, so we put her on one. She never came off. We kept her sedated to keep her relaxed and calm. This was both to alleviate her suffering, and to minimize her oxygen consumption.
Then the pulses in her feet disappeared. The vascular surgeons rushed her down to open her legs and remove the clots. They operated twice and both times the clots reformed within a couple of hours after surgery. She was so young, only 52, that no one wanted to give up, but finally the family pulled the plug on our efforts. Probably rightly so. She had developed gangrene in both lower legs and most of her fingers due to the clots blocking the blood supply. She was on a ventilator and didn't have much hope of ever coming off. She was requiring more and more oxygen every day, and soon even a ventilator wasn't going to be enough. Even if she miraculously recovered at that very moment, she would lose both hands and both legs mid-thigh.
As nurses, we knew it was coming, even if it blindsided the doctors. Indeed, her intern continued to order life-saving treatments even after her family expressed wishes to stop treatment and make her comfortable the next evening. We had stopped doing any painful treatments two days prior. We knew it was exceedingly painful to move her, so we stopped giving her the vaginal medication they had ordered for her yeast infection. We knew it hurt her to sit up higher than 30 degrees, so we stopped doing it, even though it meant possibly increasing her risk of pneumonia. It is common practice in the ICU to wake people every day to make sure they're cognitively intact while sedated on a ventilator. Her husband asked us not to do this, because meant increased pain and fear for her. Of course we stopped. We were preparing her family for her last day. All this happened under the radar of the doctors, who were carrying on as though they could make her live forever.
It was Friday the 13th; a fittingly unlucky day to die. Her father died on Friday the 13th. Her family was going to wait until the next day to withdraw care for that reason, but as evening approached, they decided that her suffering could not last another night. I came on shift at 7pm that night. She had liked me very much while she was awake, and the charge nurse from the previous shift asked that I please take her on her last night alive. By 8:30 I had my morphine drip and her family was ready to start. Before this process, I always have a long conversation with the family about what they should expect. Dying is ugly and scary to the lay person if they've never seen it before. There was a lot of crying and hugging. Her husband elected not to be in the room and we supported that decision. Her children also felt like they couldn't bear to be there. At her bedside was her life-time best friend, her best friend's husband, and her sister.
I started the morphine drip at a generous rate to keep her comfortable, and then the respiratory therapist and I came in the room and pulled the breathing tube at her family's request. We took them back in and they held her hand and pleaded with her to go and be at peace. It was really a beautiful death. Her family touched her, and I asked the clergy to come in and say a prayer with them. She passed on during the final sentences of the Catholic last rites. Almost as if she was waiting for that prayer before she could go. After it was over, her brother exclaimed that she had died at 9:13, the same time as her father, and on the same day. The family felt that this was significant (and I made sure that was the exact time written on the death certificate by the doctor who came in to pronounce her dead.)
I helped them pack up her belongings and they came out into the unit to hug all of the other nurses and thank us for our help.
"Please don't leave her alone," cried her friend as they left.
"I won't," I promised, although I knew it was a lie. Of course I would be with her while her body remained on our unit, but soon she would have to be moved to the morgue. I didn't point this out to her friend, of course.
Right before leaving, her best friend's husband gave me a lottery ticket they had purchased for her and taped to the side of her bed. "Keep this," he insisted. "Maybe it's a winner."
The significance of a lottery ticket taped to the bed of a woman who had a one-in-a-million chance of survival wasn't lost on her family. Of course, the ticket wasn't a winner. That's life. There's very few one-in-a-million miracles to be had. If you have very poor chance of survival, than the odds are that you're going to die. That's reality, and there's really nothing wrong with that.
I folded the lottery ticket up into a tiny square and taped it to the back side of my name tag. 999,999 out of a 1,000,000 of my patients won't be the one-in-a-million, happily ever after, beat all the odds, survival story. However, that doesn't mean that all 1,000,000 of their stories can't have a happy ending.
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