Advance Health Care Directive
If the extension of my life would result in an existence devoid of cognitive function, with no reasonable hope for normal functioning, then I do not desire any form of life-sustaining procedures, including nutrition and hydration, unless necessary for my comfort or alleviation of pain.
My agent shall consent to and arrange for the administration of any type of pain relief, even though its use may lead to permanent damage, addiction or even hasten the moment of, but not intentionally cause, my death…
That’s the document my Uncle Larry signed fifteen years ago when he first got his HIV diagnosis. He had always seemed like a devil-may-care sort of guy who planned to live fast and die young. Linger for months, attached to tubes and machines? No way! “Just shoot me now” was his signature expression, often used to express sarcastic disapproval of anything unfashionable, but taken literally in the case of his “Advance Health Care Directive.”
I actually knew very little about my uncle (whom I’ll dub “Larry” here to maintain his privacy) until he collapsed in public a little over a month ago. He never got along with his brother (that is, my father), and he lived 3,000 miles away on the East Coast, so he rarely showed up at family events. But on those rare occasions he did, he fawned over me, called me his “favorite,” and once I had grown up he told me that I was the only relative he could stand to be around.
As a gay man, Uncle Larry never had any children of his own, nor did he (as far as I could tell) ever have a long-term romantic relationship; so I shouldn’t have been surprised that when the time came for him to name an “emergency contact” on various health-care forms, he wrote my name down.
But he never informed me of this. So when I got a call in the middle of the night last month from a hospital on the other side of the country, with the news that Larry was deathly ill and that it was incumbent on me to make health-care decisions on his behalf, I was taken aback. I’d always been somewhat fond of my uncle, but hadn’t given him much thought in the last decade, as he’d fallen out of touch with the family.
Before I knew what was happening, I put my own life on hold, jumped on a plane, and flew to be by my uncle’s side. At the hospital, I was asked to sign a flurry of documents, granting approval for all sorts of seemingly trivial medical procedures. Do I consent to be the decision-making agent for this unconscious patient? Sure. Is it OK to give him an X-ray? Yup. Permission to transfer him to a different room? Connect an IV? Give him him this drug and that drug? Yes, yes, yes.
Despite all this, the doctors were a little cagey in revealing to me exactly what was wrong with Uncle Larry. Apparently his immune system had finally collapsed after living mostly symptom-free with HIV for at least 15 years, and as a result he had not one but several life-threatening conditions all arising at once. Infections here and here, cancer there and there, organ failure top to bottom — the more the doctors looked, the more they found. When I asked precisely what it was that was killing Larry, one doctor summed it up by shrugging and saying, “Everything.”
Even so, Larry’s body was stubborn. Despite numerous predictions of his near-immediate demise, he kept living. Unconscious, bed-ridden — but still breathing, blood still pumping.
After three days in the hospital, I was told by the staff to “go home” and get some rest. But home was thousands of miles away. So I took Larry’s keys from the “Patient’s Possessions” bag and spent the night sleeping in his apartment.
The next morning I realized just how sudden Larry’s collapse had been. There was perishable food still sitting out on the counter. His dog had finished off what was in the dog-food bowl and was now starving. There was a movie in the DVD player, still on “Pause” apparently from when Larry had stopped it momentarily to go down to the corner store.
On the kitchen table was a pile of half-opened mail, half of which were overdue notices for various bills and debts. I went downstairs and opened his mailbox to discover it stuffed with more envelopes marked “Urgent Attention Required!”
I returned to the hospital but his status was unchanged. I sat by his bed for a while, watching him breathe, until a trio of grim-faced men appeared in the doorway. They ushered me into an office. It was time for The Discussion.
The trio consisted of Larry’s physician, a “hospital social worker,” and the head of “hospice care.” They informed me that, in their opinion, Larry was not going to survive, and that only the most extreme measures could prolong his life, and even then it would probably only be for a short time. Furthermore, any operations or chemotherapy or other treatments could very well kill him more rapidly, considering his delicate condition. Considering all this, they recommended transferring Larry to “palliative care.”
When I seemed confused by this term, they explained that “palliative care” meant that the hospital would no longer try to diagnose or treat his condition, but rather would just let him drift toward death at his own pace. The only steps the doctors would take would be to ease his suffering with potent painkillers.
I must have hesitated, because the hospice guy whipped out the “Advance Health Care Directive” which Uncle Larry had indeed signed in 1996, part of the standard “end-of-life planning” the hospital insists on for all elderly and sick patients — especially people diagnosed with an HIV infection, as Larry had been.
When I again hesitated, I was informed that in this case, my consent was not needed, because Larry had himself left explicit instructions, which overrode any opinions I might have on the topic.
I read the whole document, which actually ran to over three pages, and conceded, “Well, if that’s what he wants, that’s what he wants.” I signed the form for Larry to be transferred to a hospice facility.
He was supposed to last only a couple of hours in hospice — a day or two at most. Oh no, but not Larry. Days turned into weeks, weeks rolled on to over a month. He was like the Terminator of patients: he just…wouldn’t…die….
What was I to do? Fly back home and leave him there? Believing the prognostications that he would expire at any moment, I stayed, and stayed, and stayed, calling California every now and then to try to keep my own life from falling apart.