It was a nightmare Rick, his wife, and their family thought they had guarded against. But after Rick’s father in law became short of breath and an ambulance arrived, the Parker, Colo., family was dragged down into America’s maddening morass of misguided medicine when it comes to end-of-life care.
It actually started seven years ago (I’ve agreed to use Rick’s first-name only because of the sensitivity of these issues) when the older man’s heart stopped.
He was revived, but doctors informed the family of numerous complications, and he was admitted to hospice care. As is sometimes the case with hospice patients, his condition improved. He was far from 100 percent, but he was discharged from hospice.
However, because of his ongoing complications and an up-close experience with the revive-at-any-cost mentality, he and his wife filed “advance directives” with the hospital asking that “he not be resuscitated again, because of the emotional cost to him and his wife,” Rick says.
When he became short of breath a couple months ago, the family did call 911; he needed help, but didn’t appear to be in crisis. (After all, just because a patient has a “do not resuscitate” order doesn’t mean he or she shouldn’t be kept comfortable in non-life-threatening situations.) for But then, his heart stopped, and the 72-year-old man was revived no fewer than eight times in the ambulance and hospital, despite the family’s wishes.
At the hospital, anguished and stressed, when doctors provided contradictory information — first that he was brain dead, next he was “responsive” — the older man’s wife decided to wait until morning before making any decisions about discontinuing care.
In the morning, another doctor showed up and said, “I’m sorry, we made a mistake,” Rick says. The doctor acknowledged to the confused family that the older man had, indeed, been brain dead.
“I asked why did you bring him back eight times then?” Rick says. “He says, ‘No good reason.'”
Worse, the older couple had taken pains to file documentation of their express legal wishes with the same hospital, asking that the man not be resuscitated.
The medical team had even consulted the older man’s file, but either had failed to see, or worse, ignored the family’s clear advance directive.
To Rick, who used to work as an emergency medical technician, the whole painful episode — his father-in-law eventually was “allowed” to die — reminds him of people he saw in the medical world who have “almost a God complex. … There are times they get so wrapped up in what they’re doing that they don’t stop to consider the ramifications to individuals and families.”
Sadly, such situations are more common than many think, says Dr. Merle Miller, a physician with HospiceCare of Boulder and Broomfield Counties, who worked as an emergency room doc for 20 years. (Dr. Miller was not involved in the above case.)
“Paramedics tend to be driven by protocol, and if there is any doubt, they resuscitate,” Miller says. “And that can start a cascade of events.”
In her practice, “I’m not one of those people who needs a piece of paper that’s been stamped and signed,” she says. She communicates directly with family members and wishes more emergency personnel would consult their “medical backup” before plunging into something that could cause a tragic cascade.
The roots of most of our misconceptions about resuscitation go deep in American society. Entertainment and media have badly skewed our notions of success and promulgated the false impression that medicine can rescue us at every turn.
“The pendulum has gone too far toward this resuscitate mentality, and I think TV is part of the problem,” she says.
On “House,” “ER,” and other shows, resuscitation is shown as normal, and successful 75 percent of the time, according to a 1996 survey by the New England Journal of Medicine. In fact, among the chronically ill and elderly, the success rate is an underwhelming 1 to 3 percent. Overall, the rate hovers around 18 percent, with the best success rates for younger, healthy people who experience sudden heart arrhythmia in a setting where help is immediately available.
And did you know that, done right, CPR will probably snap a good number of your ribs? CPR is only done with someone who is dead or almost dead, not whenever they are having a medical emergency.
The problem, at the deepest level, is our death-denying culture. Miller, who grew up in the African nation of Congo, saw death regularly: “It was visible, and not uncommon.” In 21st century America, few people see death up close, and many of us consequently have deluded ourselves into believing that medicine can — and should — keep us living far beyond our otherwise likely sell-by date.
Physicians today run the whole gamut from being very aware of these issues and of the equally important potential trauma to the families to physicians who have had no professional education and very little experience in dealing with the outcomes of end-of-life choices. But doctors, more than anyone, also know all too well that the massive interventions they inflict on us — typically at our own, misguided request — are a “cure” worse than the “disease” of human mortality. I urge you to look up “How Doctors Die,” an essay by physician Ken Murray of the University of Southern California.
“Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone,” Murray writes. “They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen — that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR.”
Some physicians and institutions understand all this; others don’t. In other words, every situation is individual, contingent on how decisions are made.
Murray writes candidly about all that intervention we think we want.
Most doctors, he writes, have seen ” ‘futile care’ being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs.”
And guess what? Those who elect hospice and palliative care, blessedly free from such brutalities, actually live longer, statistics have found.
With yet another round of “debate” about the Affordable Care Act (Obamacare to those who diss and dismiss it), the know-nothings are bound to start spouting demagoguery about “death panels” and such nonsense.
But the truth is, much of the medicine we inflict on ourselves, particularly at the end of life, causes more pain and suffering … for both the living and the dying.
“If you go to the hospital, you are offered a whole spectrum of treatments,” Miller says. “People don’t always realize that they have any choices” — including the choice to say, “No thanks.”
Coming up next: Kim Mooney, an expert in advance directives, will discuss how to protect your family against situations like that faced by Rick’s family.