How and When to Die
August 12, 2018 (2,776 words)
We all start out thinking we’ll live to a ripe old age, and die peacefully in our sleep. But eventually we come to realize that aging gracefully and dying gently is a rare circumstance, experienced only by the select few. If not felled prematurely by a debilitating disease for which no cure has yet been found, most of us tend to fall apart in stages, piece by humiliating piece.
In order to fend off decrepitude and keep the deteriorating organism going, the older population willingly submits to a series of pokes and prods and tests and procedures. One the one hand, we talk of being ready to accept the inevitable when our time comes. Yet we are only too quick to partake of the latest implants and replacements and other surgeries which are by their very nature designed to delay the inevitable.
A long life that ends in death by natural causes is proving to be something of a contradiction in terms. It seems we can either have one or the other, but not both.
… valiantly fending off decrepitude
My old childhood friend Jim Gillis died earlier this year, one month shy of his 64th birthday. Sergio Marchionne, the unconventional CEO credited with saving both the Fiat and Chrysler auto lines, died last month from complications related to shoulder surgery, at the age of 66. And everyone’s favorite roustabout, Thomas Aquinas (1225 – 1274), still a philosophical and theological touchstone all these years later, never made it to 50.
Euthanasia and doctor-assisted suicide are popular trends that smack of a disregard and disrespect for life. And we are told to be wary of a looming prospect: Nameless bureaucrats responsible for administering government-managed healthcare whose primary mission is to “keep costs down.” Thereby determining the limits of care and treatment based solely on balance sheet considerations.
Yet the system now in place actually functions at the opposite end of the concern continuum. Rather than care being rationed, what we have is a system that positively lavishes care upon us in an extravagant and thoroughly uncoordinated manner.
The medical profession as it is presently organized seems to operate with blinders on. Though individual practitioners are eminently well-meaning, the overarching umbrella under which they operate is unable or unwilling to consider the whole person. Each specialty of medicine functions as its own entity, and has only one speed: to busy itself doing anything and everything it can to keep an older individual alive for as long as possible, regardless of any other mitigating circumstances.
… functioning at the opposite end of the concern continuum
We are instructed that life must be respected from “inception to natural death.” Defining when inception begins has been aided greatly by advances in medical technology. But defining what constitutes a natural death is getting harder to pin down every day, what with the bevy of new medical procedures that continue to proliferate.
Both my parents died five years ago, within six months of each other. Dad was shy of 86, while Mom had reached her 88th birthday. Their respective experiences with medicine and healthcare during the latter stages of their lives have informed my opinion on this matter.
My mother’s health had been failing for years. She suffered from high blood pressure her entire adult life, the result of her fifth, and next-to-last, pregnancy. Diabetes was also a condition she became very familiar with, and arthritis eventually kicked in, with a thud. By the time my parents moved in with us in 2004, her mobility had become severely limited. Going to see her phalanx of doctors was quite a chore for her, as well as for my father, the reliable chauffeur.
Occasionally Mom would get checked into the hospital for a day or two, for tests and monitoring. On one such occasion, one of the many specialists with whom she had a long-term relationship, a truly salt-of-the-earth gentlemen, decided that she needed a pacemaker installed. It all happened very quickly. It seemed this operation was green-lighted without my father’s full knowledge, or at least without him being fully cognizant of what was being proposed.
What was supposed to be a short visit turned into a week-long stay, as my mother recovered from this unplanned surgery. When she did come home from the hospital this time, she was 100% immobile. Now confined to a wheelchair at all times, she was permanently hunched over, with both hands curled from severe arthritis, her fingers completely unresponsive. While we tried in-home nurse care for a short period, soon we had no choice but to place her in a long-term care facility.
… receiving kind and considerate care, without exception
Every staff member we encountered at this facility was kind and considerate, without exception. My father visited Mom every day. They had lunch and said the Rosary together, until his own health started to fail and he could no longer physically manage to make the trip.
We picked up the slack to some degree, visiting every Sunday with the kids still living at home. We would all have lunch in one of any number of appealing dining areas, after which we would wheel Mom outside to the koi pond. Or to the edge of the adjoining field, where she would try to tilt her head up for brief periods, and watch the horses roam around the neighboring farm.
I readily admit that every such visit, though tedious at times, created a lasting impression and was an edifying experience for me, my wife, and our children. But there is also no getting around the fact that my mother was essentially being warehoused, albeit in a very clean and extremely pleasant environment, for the last few years of her life.
Much to everyone’s surprise, it was my father who left us first. He took a bad a fall in the middle of the night on a Monday in November. I found him at 4:00 am the next morning, curled up on the floor and moaning. I struggled to get him up and into his favorite easy chair, and then I wept like a child. He was mumbling a little, obviously not himself. But he did continue to say, with a familiar lilt in his voice, “I’m alright,” and “I’m not going to die.”
… a bad fall in the middle of the night
After getting him settled in and comfortable, my wife and I decided there was nothing more to be done for him at that precise moment, and I should go to work as per usual.
We monitored my father’s condition throughout that first day, and given the fact that he took some food at lunch, we thought he might be recovering on his own. By the middle of the next day (Wednesday), however, even we realized this was going to require medical attention. We called one of his doctors around noon, and the receptionist called back within minutes to say we should take Dad to the emergency room immediately.
We felt a little stupid for not thinking of this sooner ourselves. After entering through the ER, Dad was soon admitted into the ICU, where they kept him for a couple of days, doing tests and monitoring his condition.
Visiting him in the hospital that Friday night, he was calm and composed but still not himself. His fall was a turning point. Something had irrevocably changed. It was clear as could be that he was now ready to die. One of his doctors (the cardiologist?) was due in the next morning to perform an evaluation. As he lay upright in bed my father quietly told me, without a trace of animosity in his weak voice, “They are the enemy now.”
… they are the enemy now
When I got up to leave and reached the door of his hospital room, I turned to take one last look. He was lying on his back, his head centered perfectly on the pillow. The headboard light was casting a diffused glow over my father’s head. His eyes were closed, and he struck me as being the epitome of a man at peace with his impending demise. All signs pointed to this being the end, and I went home that night to acclimate myself to this reality.
But bright and early the next morning one of my father’s doctors (was it the cardiologist?) stopped by, right on schedule. (He had been notified as soon as my father had been formally admitted into the ICU. It just takes a few days for these busy physicians to work in a last-minute request for a hospital visit.)
This man reviewed the pertinent EKG that sunny Saturday, declared my father’s fall had not resulted in any permanent cognitive damage, and confidently proscribed physical therapy as being the only thing needed in order for my decrepit Dad to return to his intellectually spry, pre-fall self.
It should be noted this optimistic evaluation was made simply by reviewing the test on a computer screen perched at the Nurses’ Station there in the ICU. The doctor in question did not actually venture into my father’s room and encounter the patient in person. Even though my father was lying motionless in bed, much as I had left him the night before, just a few steps from the computer screen at the Nurses’ Station.
… no need to actually examine the patient
I was, of course, stunned by this diagnosis. But feeling quite out of my league, I acquiesced to the professional’s opinion, and started to make arrangements to have my father admitted to the same wonderful long-term care facility where my mother had been firmly ensconced for the last few years.
And so began a three-week odyssey I hope never to repeat again, for as long as I may live. It was Sunday afternoon when I and two of our sons drove my father the short distance from the hospital to the facility. Starting at the hospital, just getting him out of his wheelchair into the car was a job that took all three of us to manage. He was still not himself, mumbling absent-mindedly, wondering what was happening and where we were taking him.
At the long-term care facility, we were informed my father would be receiving immediate attention from the staff, specifically from the physical therapist and the speech therapist. But as it was Sunday most of that staff was off, so things would really get started the next day, we were assured.
The next day came and things really didn’t get started. The therapists and their staffs were already very busy with existing patients, as it turned out. Interviewing and integrating a new patient into their programs would not be happening instantaneously. I had to dial back my expectations a bit. The “care manager” assigned to my father’s “case,” who I was now dealing with primarily over the phone, was extremely solicitous and reassuring, though, and this kept my worries at bay.
… not wanting to eat says it all
In those first few frustrating days, waiting for my father to be brought in to see the physical and speech therapists, I would visit at mealtime. Naturally they positioned my parents at the same table in the dining room of their wing. It was a comical scene. My father sat upright in his wheelchair, eyes closed, more-or-less asleep. My mother, short of stature to begin with, was now so hunched over in her wheelchair by virtue of her arthritis that her head was almost in her bowl of soup.
With great effort Mom would turn her eyes my way, and ask how Dad was. Dad was oblivious to the fact that his wife of over sixty years was at the same table. He was actually oblivious to everything. I would try to get him to eat, by bringing the spoon up to his lips. His eyes would flicker open for a brief moment, but his lips remained sealed shut the entire time at table.
After a few days of this I began to seriously doubt what my father was doing here, and what all of this was supposed to accomplish. But as we were still waiting for the speech and physical therapists to see my father and begin to work their magic, I kept my concerns to myself.
At the end of that first week one of the therapists – I forget which one – visited us in the dining room at lunchtime. This cheerful person directed what she had to say to me, since my father was, well, completely out of it. She described an ambitious program she was prepared to launch into, the success of which would naturally depend on my father’s cooperation and participation.
But he’s not eating anything, I pointed out. Yes, she said, that is a problem. He will have to eat if he is to recover and get better. As we rolled into the second week I honestly cannot remember the exact sequence of events. I do believe my father finally got in front of both therapists. But since his appearance at mealtime had remained the same, and since he was still not eating anything, it was becoming glaringly obvious – at least to me – that this was a lost cause.
… being able to recognize when the end has arrived
In addition to the facility’s therapeutic staff, my father was also visited by one or more of his doctors along the way. They came and went without notice. I would be told of these outside visits after the fact, by the “care manager.”
What did it all mean? What was the professional consensus? There were a lot of cooks in the kitchen by this point, but nobody was in charge of providing an overview. Each “specialist” was simply plugging away, doing their thing, providing their particular service. The role of the “care manager” was apparently confined to simply recording and reporting activity.
Finally on Wednesday of the third week, I got up the courage to ask the “care manager” the burning question that had been on the tip of my tongue all this time. At what point will all you fine, caring people acknowledge the obvious, and allow my father to die in peace?
“Oh Mr. Cavanaugh,” this very courteous woman replied, “it’s up to the family to tell us what they want us to do. It is never our place to recommend anything that even remotely hints at stopping treatment in any way, shape, or form.” And there you have what I consider to be the giant conundrum at the heart of our present healthcare system, folks.
… each specialist plugging away, with no overview provided
I had spent almost three weeks taking the advice of the medical professionals, against my better judgement, only to be told at the end of the ordeal that they were all waiting for me to politely tell them to back off.
Dad finally took his last breath that Saturday night, December 1. We all visited him early in the evening, after Vigil Mass. He was gasping for air at that point, and I doubt he knew we were in the room. Having gone home, we were called at 11:30 pm and told he had expired. I hope he will forgive my failure to properly implement his directive from three weeks prior. I hope he has already forgiven me.
Mom was predictably distraught at her husband’s death, but was unable to do anything more than partially engage. She was in a room across the hall, but might as well have been miles away. Though we briefly considered making extraordinary arrangements, we finally had to admit getting her to Dad’s funeral was thoroughly impractical, given her own fragile condition.
When she herself passed away the following August 1, one of her long-time physicians (the guy who ordered the pacemaker installed?) called me at 10:30 pm to offer his heartfelt condolences. It was a very kind gesture and I was genuinely touched by his concern.
But again, Mom was 88 when she died, and had been hanging on by a thread for years. Is it really so callous or morbid to ask: At what point do we realize this life is not all there is? At what point do we begin to confront and consider the four last things? When do allow ourselves and our loved ones to disengage from the pedestrian routines of this world, this vale of tears, so as to shuffle off this mortal coil at long last?
Robert J. Cavanaugh, Jr.
August 12, 2018