With everything being written about our changing healthcare climate, you’re probably also seeing articles about end-of-life care. During a person’s final weeks or months, costs escalate from tens to hundreds of thousands of dollars, and all too often for little more than a minor extension of misery.
It puts a new spin on Dylan Thomas:
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Bravo to those who are reluctant to let go, but do consider these same courageous souls are grievously misinformed about the consequences of treatment. With heroic life-prolonging maneuvers, we risk spending our final moments in an ICU, connected to a ventilator, feeding tube, or both, fluids pouring in and draining out. The last words we might hear are those of a frantic intern shouting “Cardiac arrest! Full code! Crash cart!,” the last sound the crack of a rib with resuscitation efforts in full throttle.
All in all, we might prefer crossing over peacefully at home, perhaps after hosting a dinner with close friends. Finally, in our own beds, letting death simply happen as we share some cannabis with family, enjoy the sensation of an old dog (or cat) nuzzling our hand, in the background a Beethoven string quartet, a duet from Otello, or a Jimi Hendrix riff.
An elegant piece on this subject appeared in the business section of the New York Times several years ago. I urge you to also read through some of the comments that follow. I’m always fascinated to learn what patients really think of us physicians and how many mistakes (well intentioned, but sometimes self-serving) we’re making.
Working in hospital medicine as I did for 20 years, I and most of my physician friends knew we didn’t want an ICU departure for ourselves. Spend our last months or weeks in a nursing home? No way! We’d even take a pass on cardiopulmonary resuscitation (CPR) since the odds of long-term survival (i.e., actually walking out of the hospital) after CPR are pathetic.
What I learned, from internship onward, was that there was an unwritten agreement among physicians in which the patient-doctor would be the one to call the shots on her treatments and eventual demise. More recently, these have been codified as advance directives, available to everyone and written by attorneys as part of an estate plan. The trouble with advance directives is that often during a crisis nobody can locate the paperwork. (Instead of trying to remember where you put your advance directive, you might try one of these as an alternative.)
Doing everything, then doing less
When you the patient first learn of a diagnosis that might impair your longevity, you quite reasonably want everything done. You’re thinking survival and you’re in no frame of mind to mull even the possibility of end-stage issues. Your doctor and the team she gathers to manage your care all are in synch: restoring you to health is their goal and you’re very glad for this.
But when one treatment leads to another, complication follows complication, and your quality of life starts to fracture, you wonder if it’s really worth it.
You might even ask yourself what doctors do for themselves or their families in these situations. It’s extremely difficult to get accurate information from doctors about this. Remember, you’ve hired this doctor and her team to keep you alive and you may get a sort of confused look if you ask, “Doctor, if you were me, what would you really do?” No one knows for sure how long you’ve got, or really what quality of life you’ve got in store, so their best guess on your outcome will usually lean toward hope and optimism.
Almost no doctor will ever answer your question with “This treatment is too brutal for my liking. Personally, I’d get my affairs in order and rent a beach house somewhere.” In other words, your physician might plan that beach house for herself, but as far as you go, don’t expect suggestions on bargains in waterfront real estate.
And that’s not a bad thing. How far you’re willing to extend your life and hold death at arm’s length is just too personal a topic for your doctor to make too strong a suggestion.
I want to mention one bit of distastefulness and that’s the issue of fee-for-service in which everyone is getting paid to do more rather than less. Internists earn more money pouring antibiotics into Alzheimer patients with pneumonia, surgeons insert feeding tubes to keep the comatose alive, hospitals and nursing homes lose money when their beds are empty. It’s really only after terminally ill patients have been squashed a few times by the semi-trailer of healthcare and the family finances have been eviscerated that anybody seems to finally hear, “We’re sorry we can’t do anything else. Maybe consider hospice care.”
When doctors are patients themselves, the situation is much different
Given their experience with patients–seeing what works, what doesn’t, and which therapies can be brutal—doctors are clearly in a prime position to press the “Whoa!” button. Indeed, it turns out that doctors say “Not for me” more often than you might think. A superbly written piece on this topic, by physician Ken Murray, MD, appeared first online on Zocalo Public Square before going on to be selected for inclusion in The Best American Essays of 2012.
The very best book about mortality and saying no to excessive and unnecessary life-prolonging therapies is Being Mortal by Atul Gawande, MD, an enormously compassionate physician who follows the end-of-life care of several patients, including his own father, also a physician.
I remember during my training two surgeons who had been friends for decades. One was suspected of having stomach cancer and died during surgery. I later learned he’d told his surgeon colleague that if he discovered metastatic cancer, he the patient was not to wake up.
Sometime later, a different and much beloved physician was diagnosed with intractable cancer. He reviewed the chemo protocol proposed by his oncologist, tallied the side effects, and calculated his life expectancy with and without treatment. He decided it wasn’t worth it, walked out of the hospital, signed up with a hospice service so he could get pain meds (which he never needed), and died peacefully at home several months later.
“He hated a fuss,” his widow told me later.
But before you come to believe all physicians throw in the towel easily, virtually every study about the health habits of physicians show we follow our own treatment guidelines more conscientiously than the patients who’ve been listening to our nagging for years.
If a doctor’s diagnosed with, for example, diabetes, she’ll likely get pretty obsessive about it: a perfect diet, regular blood sugar measurement, eye exams—everything needed for a healthy longevity. No doctor would dream of turning down chemotherapy for Hodgkin’s disease or lymphoma, or immune modulating therapies for multiple sclerosis. In other words, when a treatment will pay off in spades, doctors are at the head of the line.
But when faced with a terminal illness and a treatment that might add a few months–at the high cost of endless nausea, profound fatigue, blurry thinking, no appetite, and loss of sense of humor–most physicians recheck the survival odds and say “Thanks but no thanks.”
A weekly trip to the medical center? “Nope,” they’ll say. Endless prescription drugs to treat the side effects of side effects? “Not for me.” Hospital food, a nursing home, and ambulance rides? “Thanks, but no thanks. Just turn on Placido, Janis, or Jimi and make me a toddy. In fact, I believe I’ll have time for a double.”
David Edelberg, MD