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.
I ended up spending a month living in Larry’s apartment, deciding what to do with his personal effects. I searched the place for a will (which I never found), but in the process learned the truth about my uncle.
Where to begin? First of all: He was a criminal. I never knew this, but I had always wondered what his “job” was. Turns out he “made a living” by forging checks, stealing people’s identities, embezzling, you name it. I found this out because he wasn’t a very good criminal: he had gotten caught numerous times, and been sentenced to several jail terms over his lifetime, the longest being three years in state prison. Next: having HIV apparently didn’t put a damper on his sex life. From the evidence strewn about his apartment and his computer, he was quite “active” until the day before he fell unconscious.
But the last thing I learned about Uncle Larry was the most significant: He had long been diagnosed as having “bipolar disorder,” what they used to call “manic depression.” Which, in retrospect, explained a lot. Sometimes when he visited my family as I was growing up, Larry was giddy with excitement, spinning me around, taking everybody out to expensive dinners, telling wild stories, buying everyone presents. That’s the Larry I like to remember. But there was another side of Larry I only saw from the shadows: desperate calls in the middle of the night, inconsolable depression, suicide attempts, a near-catatonic passivity in the face of endless financial and legal problems. That was the Larry which had driven my father to distraction, and the reason the rest of the family had cut him off.
And I became convinced that it was this “down” Larry who had signed the “Advance Health Care Directive” quoted above. As I riffled through his disorganized paperwork files, I found that his 1996 HIV diagnosis was followed by a long period of severe depression, including half-hearted suicide attempts, a stay in a psychiatric facility for “observation,” notebooks filled with mostly illegible self-obsessed morose ramblings. It was in the middle of this period that his doctor advised him it was wise to make some crucial “end-of-life care” decisions, and a depressed self-destructive Larry signed the form stating “I do not desire any form of life-sustaining procedures.”
Turns out he had gone on an “end-of-life care” binge, as I found several similar documents he had also signed, some with doctors, some on his own, including:
Durable Power of Attorney for Health Care Decisions
Medical Treatment Desires and LimitationsI do NOT want efforts made to prolong my life and I do NOT want life-sustaining treatment to be provided or continued: (1) if I am in an irreversible coma or persistent vegetative state; or (2) if I am terminally ill and the use of life-sustaining procedures would serve only to artificially delay the moment of my death; or (3) under any other circumstances where the burdens of the treatment outweigh the expected benefits…
…and…
Physician Orders for Life-Sustaining Treatment (POLST)
A. Cardiopulmonary Resuscitation (CPR):
Do Not Attempt Resuscitation/DNR (Allow Natural Death)B. Medical Interventions:
Comfort Measures Only
Use medication by any route, positioning, wound care and other measures to relieve pain and suffering. Antibiotics only to promote comfort.C. Artificially Administered Nutrition:
No artificial nutrition by tube.
In the midst of his depression, Larry saw a way out: suicide by withheld treatment.
But when his HIV infection did not progress to AIDS, and he remained healthy, Larry’s mental state improved. And improved. Within two years of the original diagnosis, he was back on a high, jetting off to resorts in South America and Asia, getting involved in ever-more grandiose shady financial schemes — punctuated by the occasional arrest and conviction, or getting prescriptions for anti-psychotics and mood stabilizers, or entanglement in this or that disastrous love triangle. He lurched from crisis to crisis, from ecstatic highs to miserable lows.
In recent months, however, he seemed to be on a high. The overdue bills which would have been hair-raising for the average person were of little concern to Larry; his bills were always overdue (as far as I could figure), so it was par for the course. The sudden onset of AIDS and the collapse of his immune system seem to have blindsided him.
And now here he was, unconscious in a hospice care facility, an “Advance Health Care Directive” clipped to his chart instructing everyone to let him die.
On my daily visits over that month, I began to wonder: Had Uncle Larry changed his mind? Did he still want a “Do Not Resuscitate” order to prevent anyone from saving his life? From what I could tell, he had signed all the “end-of-life instructions” while in a state of passing depression, and then had likely forgotten all about them once his mood had lifted.
I’ve studiously avoided the word “coma” to describe my uncle’s condition, because in fact he was not in a coma. He often slept for days at a time, but he would on occasion wake up — or at least open his eyes. Even so, he never really was able to speak. He’d look around, and now and then weakly move his lips, but no sound came out. I once put a pencil in his fingers and rested it on a pad, to see if he could at least write something, but his hand remained limp.
The hospice facility was an independent company, subcontracted by the hospital to house patients in their last days of life. It was owned and almost entirely staffed by Filipinos and Hispanics, all of whom were staunchly old-school Catholic; pictures of Jesus hung in the hallways, and every corner had a shrine to the Virgin Mary or some saint.
It was these orderlies who took care of the hospice patients. The (secular no-nonsense) hospital sent around a low-level nurse for daily inspections, doing the rounds for an hour or so to make sure the staff was following the care orders properly. And then once or twice a week a doctor would visit and do a quick assessment of each patient. And that was it. Mostly, care was left to the hospice staff, who were poorly paid, did not have medical degrees, and in many cases only barely knew English.
But they all had another attribute which was surprising, considering their profession working at what was essentially the waiting room for Death: They valued human life above all else.
You may have noticed that the instructions quoted at the beginning of this essay which Larry signed said “…I do not desire any form of life-sustaining procedures, including nutrition and hydration, unless necessary for my comfort…”. If this was the case, how was Larry surviving for a month, with no food?
Well, the answer was simple; the hospice staff were giving him food, against doctor’s orders. Once a day they’d gently wake him up, and hand-feed him soft foods like Cream of Wheat and applesauce. Larry was able to swallow, even though he often didn’t even open his eyes.
Furthermore, he had been prescribed morphine to remove any pain he might be experiencing. When I later asked a nurse what evidence they had that he was experiencing pain at all, she told me that a morphine prescription went hand-in-hand with a palliative care order, and that it was presumed that all patients here were suffering pain, either physical or mental or both. Getting transferred to hospice meant getting morphine, period. That was the whole point.
But then one day, about a week before Larry finally passed away, everything hit the fan. A new nurse happened to walk in at the exact moment one of the orderlies was feeding Larry.
“What are you doing?” she yelled. “Can’t you read his chart? No nutrition!”
“But he still able eat,” the orderly replied.
“That doesn’t matter. You’re violating direct care instructions. I’m calling my supervisor right now.”
While she was on the phone, I discussed things with the hospice staff. Turns out the previous nurse had been inattentive and lax, and either didn’t notice or didn’t care that they had been feeding Larry (as well as several other patients) in direct contradiction to various Health Care Directives. Furthermore, the staff confessed to me, they had not been giving the prescribed morphine to some of the patients who in their opinion didn’t need it. Why not? Because, they explained, morphine suppresses the heart rate and the breathing rate, and while it may alleviate suffering, it usually accelerates the patient’s moment of death. The hospice staff felt it was immoral to give a patient morphine if they weren’t visibly in pain, because by giving them morphine you’re basically killing them in slow motion.
By this time a doctor from the hospital had shown up. He was livid about the feeding. He found out about the withholding of morphine as well. He threatened the facility with revocation of their contract and their license if they did not toe the line exactly as instructed. From here on out, he said, we will assign hospital nurses to monitor this place 24 hours a day until this situation is resolved.
From that moment on, Larry well and truly did begin to die. He went downhill rapidly. A rotating roster of hospital nurses were always on had to ensure that the orderlies did not feed any of the patients who had “nil by mouth” (no nutrition) orders. They also personally administered the morphine to each patient, no longer trusting the hospice staff.
There were now frequent hushed conversations in Tagalog and Spanish in the hallways between the upset orderlies. They were concerned about possibly losing their hospice license and their jobs, but it was more than that. Some confided in me that they felt very uncomfortable about being forced to “kill” the patients this way. When I pointed out that the patients had all signed directives to withhold life-extending care and for pain relief, one orderly shook his head, explaining, “The hospital wants to keep them unconscious on morphine so they don’t wake up and change their minds!”
I might have thought this accusation was a little over-the-top had it not been for the attitude of the nurses themselves, in particular the main daytime chief nurse who also confided in me and whom I eventually nicknamed “Nurse Kevorkian.” She flew into a rage whenever she found a hospice worker sneaking food to a patient, going so far as to clean the food out of one patient’s mouth to make sure no more got swallowed. As we sat by Larry’s bed together now and then, she expressed enthusiasm when his vital signs continued to drop, but became annoyed if he seemed to rally with a stronger pulse and more vigorous breathing. She assumed that I too was hoping for as rapid a death as possible for Larry, and complained bitterly about the crazy Filipinos and their weird attitude.
One night, I was alone with Larry in his room, while the night nurse was elsewhere in the building. He was due for another morphine dose in a few hours, so the previous dose was probably starting to wear off. For the first time in days, Larry stirred, and seemed to wake up. He made a faint moaning noise. I got up and leaned closer, and for the only time during the last month of his life, he spoke. It was just two raspy words: “Help me!”
I ran into the hallway and got the nurse, describing to her what had happened. Her response? “He must be in pain!” She came in and quickly gave him another dose of morphine. Before he faded back to sleep Larry made one last gesture: He shook his head, as if to say “No no no.” And then he went unconscious again. He never woke up after that, the nurses ensuring that he was drugged up at all times. He died three days later without saying another word or regaining consciousness.
What killed him? Well, the doctors would likely say he died of AIDS. But the direct cause of his death was, basically, starvation and dehaydration. Which, I later learned, is what actually kills many patients in hospice care, who often die from the withholding of nutrition rather than from the more slow-moving effects of their terminal illnesses.
The Aftermath
I’m still untangling the mess that was Larry’s life, and will likely still be doing so for months or even years from now, which is what happens when someone dies without a will and with a pile of debts and legal obligations.
But more than that I’m still untangling the moral and political ramifications of his death.
In 1996, in a fit of depression, he signed agreements that his life not be “artificially” prolonged should he become severely ill. But I have this terrible nagging feeling that once he came face to face with the real possibility of death, he wanted to stay alive. I suspect that he struggled for a month to wake up so he could revoke the “Do Not Resuscitate” order. But partly because of his condition, and partly because of the drugs he was given, he was unable to speak or move.
When one is healthy and young it’s easy to causally say, “If I get old, just unplug me!” But the young and the healthy can’t imagine what it’s like to stare death in the face and know that no one will save you because you told them not to. The will to live is truly tested and often only becomes manifest when one is at the point of death. Can we trust the wisdom of our 40-year-old selves to know how we’ll feel when we’re about to die?
Furthermore — and in Larry’s case, more troubling — can we trust end-of-life instructions that were signed by someone who may or may not have been in his right mind? Whom do we believe: The depressed Larry in 1996, or the craving-life Larry of 2011? If it can be demonstrated that a person’s end-of-life directives were signed under duress, internal or external, then can they be revoked without the person’s apparent consent?
In unguarded moments during Larry’s last week, Nurse Kevorkian revealed various opinions to me which I found very disturbing. She discussed what she thought was an urgent need for everyone to get “end-of-life counseling” for the explicit purpose of signing these Advance Health Care Directives for withholding treatment when people get seriously ill. Because, she reasoned, without one of those directives in place, doctors and hospitals are legally required to do everything possible to keep a patient alive. The default position is the Hippocratic Oath, under which no harm can be done to a patient, including the withholding of treatment. Thus, there’s no need for anyone to sign any end-of-life care agreement stipulating that the patient desires life-extending measures; that goes without saying. No, we need end-of-life counseling for one reason only, that reason being to convince the patient to consent to having life-saving treatment withheld. Without this, she explained, hospitals would have to spend a fortune on ridiculously expensive diagnostics and operations and procedures for people who are dying anyway.
While we were engaged in one of these discussions at Larry’s bedside, I could see over her shoulder out in the hallway some of the orderlies pointing to us and noting among themselves that she was busy and not paying attention to what the staff were doing. And so very quietly, they tiptoed off to the kitchen and snuck back into another patient’s room with a cup of applesauce, sustenance for life regardless of what the doctor, the nurse — or even the patient — wanted.
In that moment the whole moral conflict of modern society played out in front of me. I listened politely to the nurse as she explained her philosophy, but when she momentarily glanced down at her watch, I looked up at the orderly standing guard in the hallway behind her and I smiled and nodded at him ever so fleetingly, to convey my approval of their illicit life-affirming deeds.
Without realizing it, I had just taken sides. What choice did I have?