Michael Wolff of the New York Magazine wrote an article called “A Life Worth Ending.” His topic? The approach that our modern society takes towards aging and death. His focus? His personal journey dealing with the healthcare system and his mother.
His ability, through his choice of words, to bring the topic front and center is as rich as the questions he poses in the topic he explores. For example, read how he describes aging in our affluent society, in which death has become the ultimate frontier to tame and subjugate:
Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: [emphasis added] By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources. ……
This is not anomalous; this is the norm.
Mr. Wolff writes of the irony that:
The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.
Seventy percent of those older than 80 have a chronic disability, according to one study; 53 percent in this group have at least one severe disability; and 36 percent have moderate to severe cognitive impairments; you definitely don’t want to know what’s considered to be a moderate impairment.
Phew! What have we done? How did we go from acknowledging that death is a part of life and there is no way around it to believing that if we only do……then we will live longer and, hey, don’t we want to do that? Sure, we all clutch at the idea of dying. It is inherent to our nature. Moving into an unknown is scary and death is the biggest unknown. But does that warrant doing everything, at any cost to avoid it? It really does seem that by doing everything to avoid it, we actually have created a nightmarish extension that includes all sorts of physical and mental break downs and more and more frequent visits to the hospital.
In Mr. Wolff’s case, his mother started to decline physically and mentally sometime in her ’80′s. As Mr. Wolff found out:
There is a precept here, which no doctor quite spells out: Once it has begun, it has begun; decline follows decline; incident precedes incident. Here’s the medical language: “A decrement in capacity occurs.”
The system has been created that encourages families to follow one course of action after another to delay the eventuality that this “decrement in capacity” will ultimately lead. And so we are creating a citizenry of individuals who have no quality of life but live on because the natural breakdown of body and/or mind is delayed with round the clock attention (at unbelievable costs). Pharmaceuticals intervene to prevent the stroke or the heart attack or the pneumonia that might otherwise allow a person who has entered into a state of decremental capacity to leave this world with some dignity.
I lived this with my mother-in-law, a brilliant, vivacious human being who at the age of 93 started to develop memory loss.
Focusing back on Mr. Wolff’s reflections:
From a young and healthy perspective, we tend to look at dementia as merely Alzheimer’s—a cancerlike bullet, an unfortunate genetic fate, which, with luck, we’ll avoid. In fact, Alzheimer’s is just one form—not, as it happens, my mother’s—of the ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.
There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.
Speaking of price: This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.
That is the thing that you begin to terrifyingly appreciate: Dementia is not absence; it is not a nonstate; it actually could be a condition of more rather than less feeling, one that, with its lack of clarity and logic, must be a kind of constant nightmare.
As Mr. Wolff and his family chose to do, so did my husband and I: We put my mother-in-law in a very homey like assisted living facility just before her 95th birthday. The first year was actually quite good. The local owners very much wanted to create a home-like environment. But then they decided to expand which adversely affected their original home. And like Mr. Wolff, we also learned:
That assistance in an assisted-living facility, even as you increase it and pay more for it, is really not much more than kind words and attendance, opened doors, a bit of laundry, and your medications delivered to you. If there is a need for real assistance of almost any kind that involves any sort of calibration of concern, of dealing with the real complications and existential issues of aging people, then 911 is invariably called. This is quite a brilliant business model: All responsibility and liability is posthaste shifted to public emergency services and the health-care system.
The rate of hospitalization for all other age groups is declining or holding steady, but for people over 65 it’s skyrocketed. The elderly use 50 percent of all hospital days, according to one study. Emergency rooms, …. the land of the elderly, and their first step into the hospital system—where, as Medscape matter-of-factly explains, the “inability to recognize normal aging changes … raises the chances of iatrogenic illness.” Iatrogenic illnesses being the ones caused by hospitals or doctors.
In Minkie’s case, she developed pneumonia while in the assisted living facility. In the old days, before immediate intervention and antibiotics, she probably would have died peacefully and the horror of her memory loss would not have plagued us for another six years. But in our modern society, off to the hospital she went, tubes and catheter inserted (I was told this was done automatically because nurses did not have time to take elderly patients to the bathroom every time they needed to go. Of course, the consequences of stretching the muscles by inserting a catheter — itself a painful procedure — is never addressed by those who do it and the family is not given a choice).
And so we found that for any real care, this was no longer the place to keep our parent. We were lucky. We had a friend who was a CNA. She had just lost her father and had the extra space in her house. She asked us if we would feel comfortable having Minkie move in. We said yes. She lived right down the street from us and so we became the modern model of an extended family. She and her housemates and my husband and me. Five people with our friend and us doing most of the care, but all being able to continue with our daily responsibilities without too much taxation on any one person. Also, at this stage, Minkie was no longer moving on her own, which made her care much more manageable and less dangerous.
Back to Mr. Wolf’s story. His mother had been living for years, unaffected by a potentially detrimental heart situation. At some point, she had expressed shortness of breath at the assisted living facility in which she resided and they sent her off to the hospital. Her cardiologist decided she should have surgery:
…. now that she was showing symptoms that might suddenly kill her, why not operate and reach for another few good years? What’s to lose? That was the sudden reasoning and scenario.
My siblings and I must take the blame here. It did not once occur to us to say: “You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?”
This is not quite true: My brother expressed doubts, but since he was off in Maui, and therefore unable to appreciate the reality of, well, the reality of being near, we discounted his view. And my mother protested. Her wishes have always been properly expressed, volubly and in writing: She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist—sitting in the hospital writing panicky, beseeching, Herzog-like notes, to anyone who might listen—but of course who listens to a woman who scribbles such notes?
The truth is you’re so relieved that someone else has a plan, and that the professionals with the plan seem matter-of-fact and unconcerned, that you disregard even obvious fallacies of logic: [in this case] that the choice is between life as it was before the operation and death, instead of between life after the operation and death. (emphasis added).
So often, I find that people, myself included, although much less so than the average, walk into their territory (the healthcare industry’s territory) and listen to them spout something that may make no sense, but they are the experts, right? We nod our heads, and walk out with the decision made. When my husband had heart surgery, the cardiologist suggested that he start taking Lipitor. I objected, citing all the side effects. My husband pointed out that he did not have a history of high cholesterol. The doctor replied with, “Yes, but you had heart surgery.” His nurse practitioner added in helpful tones: “Lipitor prevents death.” (You can imagine how I responded to that statement!). My husband ended up taking the Lipitor.
As for Mr. Wolff and his story, when they confronted the medical team about the fact that their parent had deteriorated so badly and asked why they had not been better informed of this possible outcome:
Here’s what the surgeon said, defending himself, in perfect Catch-22-ese, against the recriminations that followed the stark and dramatic postoperative decline in my mother’s “quality-of-life baseline”: “I visited your mom before the procedure and fully informed her of the risks of such a surgery to someone showing signs of dementia.”
Six weeks and something like $250,000 in hospital bills later (paid by Medicare—or, that is, by you), she was returned, a shadow being, to 86th Street and her assisted-living apartment.
At the publication of his article, his mother was still alive, still living her shadow existence with occasional moments of clarity. I doubt that this will ever change. It certainly did not with my mother-in-law.
Would we have done things differently? Maybe. I don’t know. Would Minkie have chosen to stay alive in a half state? I don’t think so. But by the time she ended up in her half state, she was no longer the same person. We have made advancements in our medical care. But hand in hand with the advancements has developed this fallacy that lives should be saved no matter the cost. And so, I end with Mr. Wolff’s conclusions:
I do not know how death panels ever got such a bad name. Perhaps they should have been called deliverance panels. What I would not do for a fair-minded body to whom I might plead for my mother’s end.
The alternative is nuts: to look forward to paying trillions and to bankrupting the nation as well as our souls as we endure the suffering of our parents and our inability to help them get where they’re going. The single greatest pressure on health care is the disproportionate resources devoted to the elderly, to not just the old, but to the old old, and yet no one says what all old children of old parents know: This is not just wrongheaded but steals the life from everyone involved.
…. My bet is that, even in America, even as screwed up as our health care is, we baby-boomers watching our parents’ long and agonizing deaths won’t do this to ourselves. We will surely, we must surely, find a better, cheaper, quicker, kinder way out.
© Yvonne Behrens 2012