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.
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?