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

14 comments

  1. Thank you for a very well thought out summary. Your oppinion is a rare one for the medical profession. I sit in my oncology office and am amazed at the amount of eighty and ninety year olds who are there for chemotherapy. I wonder is someone doesn’t understand that they are more likely to die with that cancer than from it. I seriously am appalled. Chemotherapy is like using a sledge hammer to swat a fly on a table. The fly may or may not die, but the table will never be the same. I pray that I have the wisdom to know when to say “no, thank you.”

  2. Excellent post Dr. M. and all too true. Why can’t we choose our own final exit? I always loved Edward G. Robinson’s death scene in the old sci-fi movie Soylent Green. I don’t know if you’ve ever seen it, but that’s a wonderful vision of dying well.

  3. Hey – My name is Debbie and am new to the blog’s – hav in fun reading them — this one stuck out to me because I am an Adult congenital heart patient — I have had 3 OHS’s first in 1962 and last just 2 years ago – I am a TOF’er and 51 yrs old— So my last surgery went great but recovery is a long process – I am young?? and a kinda bike rider (I can ride 50 miles) but being young recovery is still a long process — I think about in 15 – 20 yrs. I will have my pulmonary valve changed out again and I will be 70 then and it is NOT going to be as easy as this last surgery!! I have seen with several of my older friends with on going heart issues that they can survive the procedure but the recovery kills them!!! Really – I have sat with 2 friends that could never recover from the procedure and they passed away — All I can say is I have things to think about in 20 yrs.– for now I live each day to the fullest!!!!

  4. Been there with both my Mom and Dad. Decision making was tough, and the outcome still haunts me, but Dad would not have wanted to be hauled back to the hospital to be propped up yet again, only to be miserable afterwards.

    Hits home John, and something everyone needs to think about before their time comes.

    Remarkably, though, many people DO bounce back to go on for longer, productive lives, so each case requires careful thought and evaluation. My in-laws are incredible examples of that.

  5. We have multiple problems here. Although nurses are taught that we never fail a patient if we promote their comfort because everyone dies eventually, physicians are not. Too many physicians still consider a patient death a professional failure, even though it is the normal natural conclusion to a life well lived. Families also sometimes mistakenly think that if they don’t avail their families of every potential procedure, that they aren’t taking good care of their beloved family member.
    We need dialogue between family members of all ages so we are taking good care of family members often by limiting the number of high tech medical procedures they must endure before being permitted a natural passing. My father was very clear on where he wanted those limits to be, and this was instrumental, many years later, in my telling the physician in charge of his care, that this was where my father had wanted to stop, not just that day when he was in pain but thirty years prior when he was clearly of sound mind and body.
    Thank you for your essay.

  6. We went through this with all of my grandparents and I watched my parents make the hard decision not to go through with the surgeries, etc. Thank you for understanding the other side.

  7. Excellent post. I am rheum in private practice. I agree completely about the failure to accept death when it’s time– it is obvious that many patient’s quality of life has been reduced, and they are living shadows of their past lives. The problem I foresee, is that it takes a good physician, often a generalist, who not only cares about the patient, but has developed a trusting relationship with that patient, to guide them through the last few years of their lives. In the environment today, the patient-physician relationship is no longer valued, and longitudinal care has been supplanted by “clinically meaningful use” EMR’s which are supposed to substituted for knowledge of the patient. Here’s a secret– many patients actually trusted their FP’s and generalist and NP’s, often because they can speak to them in a way that was meaningful, and the rise of EMR’s and increased insurance/insurance hassle had eroded that trust.

  8. I needed to see this post today, John. I co-created and launched a palliative care program in my long term care facility in 2008 where I lead a team of like-minded, loving, compassionate healthcare professionals who help soothe the sting of impending death by being a voice of reason, enlightenment and love to our residents and their families. I have witnessed “bad deaths”, brutal symptoms that could have been managed. During the development of our program we came to understand that taking the hands of family members, talking them gently through the illness and prognosis of someone they love, is vital. There is no reason why human beings should suffer when their end is coming. At the same time, I understand that letting go is so hard for families. There is guilt there if they stop trying everything. I learned that from the two amazing doctors [one of whom you know quite well, indeed, John] I worked with when we started. I always say to my families…”you aren’t causing this death…you are allowing it.” Thank you again for the article and link.

  9. Unfortunately what we wish and what Katy’s mother achieved for herself, can only come about, with little exception, for the privileged wealthy, for men, who have a wife to care for them.

    Today the majority of women work, many are single parents, and cannot stay home to take care of elderly parents, and people who do not have money will be placed in the warehouses. If a woman who lives in an apartment must go to hospital for a stroke, the apartment will not take her back, they cannot legally be forced to do so, so she goes into care immediately upon leaving the hospital. She has virtually no say after she crosses that threshold over the phalanx of drugs and procedures she will be subjected to, nor will her family.

  10. I also wonder if the very poor who cannot afford medical insurance and care, die better deaths than those privileged and primaily white folks with insurance. Do they manage to leave this life without the self-serving interventions of the profiteering medical profession? (Witness the doctors comment about no intervention being unfair to his team. Unbelievable.)

  11. As I am want to say, outrage and handwringing are cheap. What is there to do?

    We frequently receive requests to put in a G-tube when it is clearly inappropriate, and attempting an “on the spot” correction is usually not well-received. Why don’t we have better means of educating a small target group, the requesting hospitalists? How many Drs request G-tubes at our institution? I’m guessing ten to fifteen. Why can’t we see that the referrals are more appropriate? The docs in question are all bright, well-meaning people. If they are making inappropriate requests, it’s not because they are stupid or mean-spirited.

    So what is the problem here?

    Doctors who are far brighter than me have requested G-tube placement in a handful of cases where I have had to wait in the hallway while the patient was receiving the extreme unction.

    Why is this? Is it all the doctors’ fault? My gut tells me that that is not the case. I believe it is far more complicated than that.

    I know exactly how I would handle it, but I’d be interested how others think it should be handled.

  12. I made another comment that hasn’t appeared and I realized it may seem to contradict the first. But that’s because the first applies to an universal care system, like U.K. and Canada, and the second comment to the United States.

    And definitely, I would like to know, how do doctors die?

    1. Right. Having never died before, I wondered how it was supposed to happen, so I pulled out my Doctor’s Handbook and turned to the last chapter, On Dying, and followed the instructions.

      1. Stop breathing.

      I don’t remember much after that, but when I came to, my wife, automatic defibrillator in hand, was yelling at me and said if I ever tried that again she would kill me herself.

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