Geena at Code Blog has a story that every nurse can echo: the conundrum of the patient whose doctor is unwilling to let him die the way he'd like. When something like what she describes starts to go down, everyone around gets involved--the family, the nurses, the residents. Sometimes it works out. Sometimes it doesn't. Here, from my own experience, two stories that came swimming back to the top of my head after I read Geena's post. Note that these are even more heavily fictionalized than usual.
Case #1: Bill W.
Bill W. was a high-powered executive with a large national company based in our town. He was well-liked, considered by friends and coworkers to be a highly ethical, stand-up kind of man. He had a large supportive family. He was diagnosed with lung cancer at 45 and, with extensive treatment, went into remission.
His remission lasted twelve years, at which point he ended up with brain, liver, and spinal metastases. The prognosis was quite poor; you rarely end up beating back a disease as aggressive as lung cancer more than once. He ended up in my care on the medical floor. The first day he was communicative but disoriented. The second day he was responding to touch but not making any sense. The third day he stopped responding at all.
He and his family agreed that he should be no-coded (ie, a "DNR," or "do not resuscitate") and that treatment should be palliative. His doctor, on the other hand, was unwilling to let his patient die. On the third day I had Bill in my care, his doctor wrote orders for IV fluids at 125 ccs per hour (about half a cup; much more than is necessary for palliative care), every-six-hour fingersticks for blood glucose, insulin injections, and three different IV antibiotics.
The man was comatose. His kidneys had failed; he was producing about three tablespoons of urine in an hour. What his kidneys couldn't get rid of had settled in his legs, his scrotum, and his lungs. His hands and arms were swollen and bruised from repeated IV sticks and lab draws. His breathing was harsh and slow, with long periods of apnea.
The resident and I got into a very polite shouting match about his treatment. I told her that it went against my grain to go against his and his family's wishes for his death; she told me that her boss (his attending physician) felt he had to "try everything" for the man and the family he'd known since childhood.
Eventually, the family's and my viewpoint carried the day and Bill was put on an IV morphine drip. Palliative care was all we gave; we stopped the insulin injections and the antibiotics. He died the next afternoon with his family in the room with him; I bathed his body and walked it to the morgue.
Who was right? Who knows? Who can say that a person at the edge of death, unable to talk or make his wishes known, might not experience a change of heart and want others to do whatever's necessary to bring him back? Is it cruel to run IV fluids and antibiotics and stick somebody with needles when they most likely can't feel it, or at least can't translate the pain into anything meaningful? And would the person in the bed want to go through all that, if it meant that his wife and kids could sleep better at night?
Case #2: Kelly G.
Kelly was involved in a one-car accident that left her in a persistent vegetative state. The trauma of her accident had led to one of her arms being amputated below the elbow and one leg being amputated above the knee. She had a tube going into her stomach for feedings, a trach to breathe through, and a tube coming out of her belly just above her pubic bone to drain urine. She came to our floor without purposeful response to anything including pain, with only basic brainstem reflexes, and with very sluggish pupillary reflexes.
She also, because of the sort of trauma she'd had, had seizures. In order to relax her rigid muscles and prevent the seizures, she was on a number of medications, all of them sedating.
By the time I saw her the first time, she'd been like this for four years. She'd endured seven bouts of pneumonia, uncountable urinary tract infections, bedsores, and her limbs were contracted from lack of use. Her parents had bankrupted themselves to care for her. They were convinced that she would someday wake up and begin to respond to them in a meaningful way.
Shortly after her last hospitalization with us, her parents began to wean her off of all sedating medications, including the ones that were preventing her seizures. Their theory was that the medications were delaying or derailing any chance she had of getting better. Within six months she'd had six tonic-clonic ("grand mal") seizures. One had lasted three and a half minutes, a long time for a seizure. Her spasticity had gotten worse, and she'd begun to vomit tube feeding and inhale it, thus setting herself up for more bouts of pneumonia.
But her parents persisted, thinking that at some point she would, in the words of one of my more blunt colleagues, "Sit up and ask for a Pepsi."
Again, who's right? I can't imagine what her parents went through, having a bright and talented 16-year-old who came so close to dying and returned to them far from intact. Was it cruelty to keep her alive on life support in the first place? What about each successive case of pneumonia? Should one of them have gone untreated? And is it ethical to subject a person, no matter how unable to think or feel or respond, to repeated seizures in an attempt to bring them out of the shell that brain injury creates?
And the question comes up again: would the patient have wanted to go through this in order to spare her family the late-night what-ifs?
At the end of the day, I guess it's just not up to us, as caregivers, to have the definitive answers to those questions. The best you can do is to have some sense of when things are crossing the line for you, personally, and when you have to get somebody else to provide care. Sometimes it's hard like this; most of the time things are easier. Thank God.