For the past seven months, I’ve carried around my husband’s advance medical directive in my purse. During this time, I’ve shown this lawyer-prepared and notarized document to dozens of doctors, nurses, ambulance crews, surgeons, dialysis center teams, hospital emergency room workers and administrators, intake staff, nurse practitioners, nursing home staff, medical transportation drivers, and others. I’m an expert in summarizing its contents, and my 11-second elevator pitch goes like this: Do not resuscitate. No heroic measures. A gentle and peaceful death, pain-free and with dignity. Please.
After my husband was diagnosed with end-stage renal failure, we talked about how he didn’t want to be a burden to his family, how much he hated hospitals and getting poked and prodded by doctors. We talked about how his 81 years had been full of love and laughter, being a great dad and loving his work. He noted how even his much-beloved Cubbies had finally delivered him a World Series title, and he joked that he could “now die a happy man.”
Death, we agreed, was a natural consequence of life and not something to be feared. And so we prepared the legal documents that were intended to give him control over the end of his life.
A fat lot of good it did us. On Jan. 4, my husband died, and I threw his advance medical directive into the fireplace. It worked better as a fire starter than it did as it was originally intended.
We simply had no clue that dying and medicine, as it is commonly practiced, exist at cross purposes. And in my husband’s case, the engine of life-prolonging medicine decisively won.
End-of-life care is a pot of gold in our modern medical system. Spending on Medicare beneficiaries in their last year of life accounts for about 25 percent of all Medicare spending. In 2011, Medicare spending was almost $554 billion ― 28 percent of which was spent during patients’ last six months of life, according to Kaiser Health News.
But when it comes to death and dying, this spending isn’t always in the genuine best interest of the patient. As Forbes reported, a study published in the Archives of Internal Medicine asked if a better quality of death occurs when end-of-life medical spending rises. The short answer: Quite the opposite happens. The study, which considered factors like adequate management of pain and symptoms, found that the less money that’s spent in this time period on medical interventions, the better the death experience was for the patient and their family.
Despite studies like these, many health care practitioners have a view that extending life ― at any cost ― is preferable to death. They are trained to perform every possible diagnostic test, and treat every symptom with whatever is in their arsenal. Some experts in palliative care go so far as to say the U.S. has a “death-defying” culture. Slogans like “conquer cancer,” “cheat death” and “beat the disease” shape our expectations. Education in palliative care is offered in nearly all U.S. medical schools, but it is most often a brief portion of a course with a larger focus. The average total instruction on death and dying for would-be doctors is a mere 17 hours in the four-year curriculum, according to one study.
But this avoidance doesn’t change one undeniable truth: We all will die.
In the last 24 hours of his life, my husband ― lucid and alert ― had the following done to him: An IV was stuck in his jugular vein when another vein couldn’t be found. He was rushed by ambulance to the emergency room, where he spent seven hours before being admitted to the ICU. He was treated for bedsores on his back, his behind and his legs ― all developed in a nursing home with a staff that failed to turn him over to prevent them. His arm oozed fluids through cracks in his skin that soaked his shirt and stunned our children. He had blood drawn repeatedly through veins that nurses struggled to tap ― more try-and-fail needle jabs than I could bear to witness. He was denied food and water for at least 24 hours as a procedural precaution.
And the coup de grace: Once admitted to the ICU, he was rushed into a five-hour emergency surgery that left him with a colostomy bag and on a ventilator. His heart stopped for about a minute during the “pretty eventful” surgery, said the doctor who called me at 3:30 a.m. to tell me that my husband was in recovery and stable.
But my husband never woke up. He remained sedated until his heart beat for the final time at 10:38 a.m. ― seven hours and tens of thousands of dollars later.
I am bereft. I am grieving. And I am working hard to understand why medical teams feel they must chase life so relentlessly.
Nobody wants to use the “D” word.
Medical good intentions notwithstanding, prolonging death is not the same as extending life. Death isn’t the boogeyman; turning the dying process into a torturous experience is. And yet the medical establishment just can’t seem to help itself when it comes to dying.
Nobody wants to use the “D” word. When my husband and I met with the “compassionate care” team in his nursing home days before his death, I was corrected when I called it a “hospice” meeting. Besides, I was told, hospice is the “treatment plan” you choose when your “health care goal” is to accept that you will not recover and you merely want to be kept comfortable and emotionally supported. I rolled my eyes.
“We know that your insurance won’t pay for your nursing home anymore,” the compassionate care team nurse told him, “but we don’t want that to be a factor in any decisions you make.”
Really? Why the hell not? I bit my tongue before asking who exactly she thought would pay for his medical care, since insurance had denied his claim. She was giving him permission to bankrupt his family, robbing his children of their college funds and his wife of her retirement ― and for what quality of life? Our current medical system operates under the assumption that we should thwart death, no matter the consequences. So don’t let money be a factor in any decisions you make, she told him.
“Prolonging death is not the same as extending life. Death isn’t the boogeyman; turning the dying process into a torturous experience is.”
When they asked my husband what his health goals were, he ― who spent three days a week hooked up to a kidney dialysis machine, had a failing heart despite seven bypasses and was unable to walk, dress himself, or get out of bed without three people helping ― told them he wanted to go home. It’s a goal the whole family prayed for. But without 24/7 home health care assistance, that was about as realistic a health goal as me saying I was going to run the Boston Marathon tomorrow. Still, the compassionate care team wrote it down, as if it were a legitimate option.
A few days later, his doctors said he needed an emergency five-hour colon surgery to rid his body of sepsis. Buoyed by a false sense of hope about going home, he uttered the words that are music to the medical establishment’s ears: “I want to live.”
I get it. I really do. You can’t blame a guy for changing his mind. And certainly his words trumped a document prepared months earlier. Decisions made in the abstract may not feel so spot-on in real time.
But I also know that my husband was prodded to that point by a medical system that charts death as a failure ― when in fact, a good death should be considered an inalienable right.
As Atul Gawande wrote of one of his patients in Being Mortal: Medicine and What Matters in the End, my husband “pursu[ed] little more than a fantasy at the risk of a prolonged and terrible death — which was precisely what he got.”
I don’t blame my husband one iota. I love him. I love that he wanted to come home to us. He was brave and honest and true to the end. What he wasn’t was protected from a medical team trained to push him into life-prolonging surgeries and procedures, even when those actions would prolong pain and prevent a gentle death. And he certainly wasn’t protected by the worthless piece of paper I had put so much stock in.