The Story of B.L.

Back in late August when I was working in the MICU, my resident (who was overnight) got called for a code on a 65-year-old woman who'd been found unresponsive in her bed. The attending had last seen her awake and alert at 7:30 pm, and the code was called at 7:45 pm. No one knew how long she had been without a pulse during that time (she had PEA), and like most codes, she was resuscitated, intubated, and rushed to the ICU. Her name was B.L. She was one of the trainwrecks signed out to me on that one day in the MICU when everything went wrong, a vasculopath with ESRD who had come to the hospital days prior for left foot pain and toe gangrene due to arterial insufficiency. Hours before she coded, she had refused to have her foot amputated. Everyone--the MICU team, her vascular surgeon, her nephrologists--expected her to be dead within days.

The first time I saw B.L., she was seizing, a bad sign indicative of anoxic encephalopathy. Her EEG later confirmed that she had low brain activity. Her left big toe looked dried up and withered. I wondered if she could become septic from that toe, but the surgeons who saw her said it was dry gangrene and not a source of sepsis (she was constantly hypotensive). Finding access on her was a problem because most of her veins were too scarred or damaged to use; her only access (later put in by surgery) was a permacath for dialysis. No one could really declare her brain dead because she still had her corneal and gag reflexes, and we couldn't call her a vegetable because it takes 3 months to declare someone to be in a persistent vegetative state. Despite our low expectations for her survival, however, she hung on. Regularly scheduled dialysis and antibiotics kept her going. At one point the surgery chiefs even pulled me aside and asked why she was still alive.

B.L. had a daughter, who also served as her power of attorney. She came to visit every once in a while, and despite doctors' numerous attempts to talk to her about making B.L DNR/DNI, she insisted on keeping her mother full code. My resident tried several times to bring up code status with her, but each time she'd say that she needed to talk with family or some other excuse. Even after 1-2 weeks passed, she still wouldn't discuss the subject. I was able to arrange a family meeting between her, the ICU attending, and the neurologists so that they could explain the poor prognosis of anoxic encephalopathy, and the ICU attending asked whether she wanted to take her mother out of the hospital to a hospice center, or if she wanted a trach and PEG to keep her alive longer. The daughter immediately requested the trach and PEG (much to the dismay of the surgeons, who believed that the woman should be allowed to die peacefully since she would never have good quality of life again), leaving everyone wondering what the purpose was of keeping this poor woman alive. B.L. got her trach and PEG, but not without problems. On my last call in the MICU, she had to be reintubated because her trach was leaking. After I left the MICU, I didn't know what became of her, only that she was sent to the PCU.

Before she coded, B.L. was a fairly frequent flyer to the hospital for her PVD and ESRD. During her hospital stays, she had developed close relationships with the nurses and nephrologists, who later filled us in on her family situation. She lived with her daughter, who often neglected her and didn't give her enough food or blankets to keep warm. B.L. often ended up getting better care at the hospital because the nurses knew of her sad home life and tried to make her as comfortable as possible. Her nephrologists also told us that her daughter was taking advantage of her by living in her home (rent-free) and cashing her Social Security checks for her own use, and they suspected that her daughter wanted to keep her alive for those same purposes.

Three months later, I attended a case conference with "Futility of Treatment" as the main topic. My MICU resident had a case to present: a 65 yo woman with hx of CAD, PVD, ESRD who presented at the hospital for left foot pain. That description could have fit any lady in this hospital, but as soon as he said the pt had a PEA code and was found unresponsive for an unspecified amount of time, I knew he was talking about B.L. I then learned what happened to B.L since I left the unit: she was discharged from the PCU in mid-September and went to a long term care facility for one day before her daughter brought her back for hypotension. The pt's status was still full code, and despite numerous attempts by both the medicine and nephrology attendings to talk to the daughter about making B.L. DNR/DNI, the daughter refused to do so. She would always change the subject whenever it was brought up, and yet had the gall to ask the medicine attending to sign a form that would allow her to pick up and deposit her mother's Social Security checks. The Ethics committee was consulted three times to meet with her, but each time there was no resolution, either because she wouldn't show up to the meeting or else she'd have to "discuss" with some other family member. I couldn't believe that this had dragged on for three months, and yet I was also amazed that B.L's body had lasted this long.

Last week I started my rotation in the PCU, and one of my patients was B.L. Her left foot, which had a slow-growing gangrene when I first saw her, had been amputated (a BKA). Her eyes opened spontaneously and she sometimes moved her head from side to side, but that was the most of it. Now she could be classified as being in a persistent vegetative state. Interestingly enough, on my first day of PCU, the nephrology attending decided that she would no longer dialyze B.L, since every time she's dialyzed her BPs fall to 50s-60s/30s-40s and then we'd have to bolus her to get her BPs up again. "There is no benefit to this," she said, and stated that by stopping dialysis she was willing to be the "bad guy." After all, without dialysis, the patient would surely die within a week or two, and that would be letting death take its natural course.

Needless to say the daughter was pissed when the nephrologist and told her that they would not be dialysing B.L. anymore (the rationale being that HD dropped her pressures dangerously low and that it could no longer be safely done). My attending later called the daughter to once again bring up code status, and while the daughter agreed that chest compressions and defibrillators would be "excessive" for a dying woman, she refused to change the code status to DNR/DNI. No hospice center would take B.L. as long as she's full code, so essentially she'd be staying at the hospital until she died. And despite the daughter's claims that she'd come visit her mother at the hospital, I never once saw her (and I worked every day last week). Nephrology also recommended that we stop drawing labs on her, to minimize anything we do as much as possible. Everyone seemed to be in agreement...for a while.

Then last Sunday, everything went to hell. B.L.'s blood pressures became dangerously low once again, and her nurse asked me why there were no labs on her for the last five days. "You need labs to know what you're treating," she said, so I ordered basic labs on her. As it turned out, a week of no dialysis didn't really budge her electrolytes at all (K+ was less than 5) Then nephrology came by and asked why the heck I ordered labs on her, saying I opened a new can of worms because if she was uremic, then she'd have to be dialysed. My attending said I should start her on pressors, but pressors can only be given in the ICU. The pulm/critical care fellow knew her well (as did everyone in the ICU and PCU) and did NOT want to take her back, asking us instead to give her albumin and see if that would help her pressures. I felt bad for leaving the nurses to deal with her that night, but honestly, I was at the end of my rope, and I went home secretly hoping that I wouldn't have to deal with her the next day.

As it turned out, she did get transferred to the ICU, and my PCU resident expressed her hope that it would be a "terminal transfer" (meaning she'd die in the ICU). When the nurse called the daughter to let her know that B.L. was being transferred to the ICU, she asked (again) why her mother wasn't receiving dialysis. I couldn't believe it. Did this woman really not have a clue what was important, or was she just playing us for fools? And no, she wasn't coming to the hospital.

Early this morning, as told to me later by the social worker and one of the MICU interns, B.L. coded...three times. And because she was full code, everything was done: chest compressions, bagging, epinephrine, everything. I had half-expected the team to run a "slow code" but they went all out. She lasted about 30 minutes before she coded for a second time, and the third time they couldn't bring her back. Each time she coded, someone called the daughter to ask her how much she wanted done for her mother. The first time, she suggested (sarcastically?) that the team do "whatever was ethical." The second time, she got mad and hung up on the doctor who called her. The third time, she didn't even answer the phone; another family member had to answer for her. I'm just afraid that now there'll be hell to pay.

But even still, as news spread through the ICU, PCU, and beyond that B.L. had finally passed away after 3.5 months of living in a vegetative state, I think everyone felt relieved. From the nurses who cared for her round the clock and the doctors who coordinated her care, we were relieved that her suffering was over, and that she was truly in a better place now.