End of life care – A great American tragedy.

“Why don’t we die the way we say we want to die? In part because we say we want good deaths but act as if we won’t die at all.”

Katy Butler, WSJ

There is a humanitarian crisis unfolding right now in nearly every hospital in this nation. Aggressive life-prolonging care of the elderly too often results in extending suffering and loss of autonomy. “Bad deaths” are on the rise. As a physician witness to this, I feel shame. As a fellow human, I feel sadness.

Acclaimed American journalist Katy Butler has written an essay (and book) that I believe may help spark the changes needed to quell this crisis. I’ve been writing on the Internet for almost four years, and no one essay has moved me more. This is the most important piece I have ever hyperlinked. By far.

Two recent cases illustrate the problem: In the last two months, I have been asked to operate on two elderly frail patients; both had expected lifespans measured in weeks to months. One patient weighed less than 90 pounds; the other wore a diaper and ate honey-thickened liquids. Nothing I (or any sub-specialist) had to offer would have changed their elderliness or frailty. These poor souls needed compassion, candor and comfort measures, not cardiac procedures. So why was I asked to consider intervening? Why weren’t these patients receiving palliative care? Where was the appreciation that death is a natural part of life?

Ms. Butler’s WSJ essay, written from the perspective of both a loving daughter and an investigative journalist, gets us close to the answers to these questions. One could even draw a potential solution to the crisis in end-of-life care from her story. At least I did.

Ms. Butler was forced to face down the paternalistic death-is-a-failure mentality of typical US healthcare for both of her parents. First was her father’s tragic case. This award-winning essay, published in the NY Times, told the story of how a hastily implanted and unwanted pacemaker prolonged her father’s suffering. A daughter and wife learned important lessons from this sad interaction with caregivers.

Now, years later, Ms. Butler writes about how her 84-year-old mother “fought the medical establishment and avoided what most Americans fear: prolonged, plugged in suffering.” In this case, both patient and family displayed extraordinary vision and courage.

Surveys consistently find the majority of Americans want to die peacefully at home. Most do not get their wish. Rather, it’s the opposite: nearly 50% die in a hospital and 20% die tethered to machines in an ICU. Ms. Butler writes:

“Family members who once wiped the brows of the dying were restricted to visiting hours. Often there were no “last words” because the mouths of the dying were stopped with tubes and their minds sunk in chemical twilights to keep them from tearing out the lines that bound them to Earth.”

This is not hyperbole. This is real. I could show you. Any hospital doctor could.

Why can’t intelligent people see death as a normal part of life?

End of life care is complicated. Start with the premise that death isn’t easy to think about—for either patient or caregiver. Ms. Butler tells how her mother struggled to accept her own mortality. Her mom was active, aware and full of life until the end. Being well made it hard to give up on life. Why wouldn’t it? When life is good, wanting to hold on to it is normal.

But Ms. Butler’s mother had an advantage. She saw her husband suffer. On some level, all people understand that death cannot be avoided, but in reality, few people see the risks of a bad death. People are optimistic; they focus on good outcomes. Loss of autonomy in a hospital, ICU, or nursing home won’t happen to them. The will to live (or avoid death) obscures the ability to see the risks of a bad death. So in part, the problem lies with human nature: “we act as if we won’t ever die at all.”

This is where trained caregivers—like cardiologists and oncologists—should be able to help. But for some reason, in far too many cases, neither doctors nor nurses can see the risks of a bad death either.

“Her later cardiologists were disturbed by her decision. But I would discover that people of my mother’s age are often like Humpty-Dumpty, seemingly vigorous until a mishap, a traumatic surgery or a hospital-acquired infection sets them on a rapid downward spiral.”

In the case of Ms. Butler’s mother, caregivers from the highest echelon of Medicine (at Harvard) failed to align care with their patient’s goals. They failed because they didn’t consider death as a natural part of life. Rather, death was the enemy that had to be defeated. Her heart surgeon spoke of living to age 90; a heart failure nurse urged her to reconsider and another cardiologist recommended (and nearly strong-armed her into getting) aggressive experimental heart surgery immediately before she died.

This was a total failure of patient-centered care. Only the primary care doctor understood:

I called my mother’s internist. “I know your mother well enough, and I respect her,” he said. “She doesn’t want to risk a surgery that could leave her debilitated or bound for a nursing home. I think I would advise the same decision if it was my Mom.”

Patient-centered care is part of the solution

Aggressive medicine served Ms. Butler’s mother well when she was in her forties. At that time, surgery and radiation were aligned with her goals to live longer. She was young and strong. In her eighties, things were different. She knew life was finite and death was unavoidable. Facing this reality didn’t mean she wanted to die. She didn’t. In fact, it took great strength on her part to accept death. But at age 84, her primary goal was avoiding a horrible outcome, like a stroke, loss of autonomy, suffering, and being a burden to her family. To increase the chance of a good death, she chose to accept a sooner death.

The take home…

For patients: the message is awareness.

First, all humans must grow more aware of their own mortality. This is not morbid; it’s just an important fact. Acting as if you will never die at all increases the risk of prolonged plugged in suffering. Think about your goals for care. Share them with loved ones. Second, be aware of the risks of aggressive medical care. Third, be aware of the death-is-a-failure mindset of doctors and nurses. Don’t expect the average doctor to offer no intervention or symptom-control as a viable option. Expect the average doctor to say, “if you don’t have this procedure, you will die.” Until the mindset of the medical establishment changes, you may need to demand patient-centered care, like the Butler’s.

For caregivers, especially specialists like me who wield the big hammers of medical care: We must work to improve the care of the elderly. Plugged-in suffering and loss of autonomy should be considered a major complication to avoid. It’s not a success when a fiercely independent elderly patient has to live out his days in a nursing home.

The first step for us is the same as it is for patients: namely, accept that death is normal, and not the only enemy. A bad death should be equally feared. Beautiful technologies, like the ICD, open-heart surgery, or chemotherapy, do not offer the elderly the same risk/benefit choices. We need to pay more attention to Ms. Butler’s use of the Humpty-Dumpty analogy. My wife, a palliative care doctor, speaks of the elderly as a house of cards. Pull out just one card, from, say aspiration pneumonia, post-op AF, UTI, VTE, the list is endless in the elderly, and the once independent elderly patient is no more.

Realizing that death is a normal part of life is only the first step. The next step is to embrace the notion of patient centered care. This is critical in the elderly. Consider the case of Ms. Butler’s mother: only her primary care doctor respected her wishes. Why didn’t her heart specialists offer her the same respect?

Here’s a post I did on an ACC board question on valvular heart disease in an elderly patient. Nowhere in the list of ‘best options’ was the choice not to intervene. That’s my point: not intervening, choosing to live with the disease is an option that must be offered to the patient. And not just as a side-note, but as a real option. The elderly patient who decides not to have heart surgery may not get the benefit of the surgery, but they get to avoid the risks of a bad death from a complication.

A theory: If we specialists were more candid about the risks of a bad death (be it from complications of heart procedures or chemotherapy), we would find that the primary goal for many of our patients would be to remain independent until the end, whether that came sooner or later.

Finally, the highest quality medical care is that which aligns with the goals of the patient. It is their life and their death. The ultimate job of the caregiver is to care. And that means, as described in the Oath of Maimonides, “to watch over the life and death of Thy creatures.”

JMM