Living With Dying articles

Beyond The Statistics

By Leah Carey
Nov. 22, 2016

In this issue, we continue our deeper look into how and why doctors make particular recommendations for patients with terminal diagnoses.  This week, we talk with Dr. Peter Ubel, a physician and professor at Duke University, about more of the factors that enter those decisions.

Ubel’s papers include Physicians Recommend Different Treatments for Patients Than They Would Choose for Themselves in the Journal of the American Medical Association in 2011 and A Matter of Perspective : Choosing for Others Differs from Choosing for Yourself in Making Treatment Decisions in the Journal of General Internal Medicine in 2006.

The “shoulds”

According to Ubel, the presence of statistics and medical research fills the landscape with things a doctor should do.

“When you’re deciding for someone else, you’re thinking about what you ought to do,” he said. “At end of life, I might know for myself that I feel like I want to be in comfort care and not getting extraordinary measures, but when I’m thinking about someone else, I’m thinking about what I should do.”

“It shows two things,” he continued. “We don’t always make the same decisions for ourselves that we would make for someone else. And when doctors give advice to somebody else, it’s hard to know whether they’re giving advice in terms of what they would do, or what they think you should do.”

Unfortunately, it’s not just a feeling of “should.” Doctors also face the very real possibility of litigation if they step outside the norms and it goes wrong.

In Physicians Recommend Different Treatments for Patients Than They Would Choose for Themselves, co-authored with Dr. Andrea Angott and Dr. Brian Zikmund-Fisher, Ubel wrote, “Previous research has shown that when people make recommendations for others, they tend to focus on a single dimension of the alternatives, typically on the aspect of the decision that is easiest to defend.”

The result: sometimes quantity of life overwhelms quality of life considerations when a physician is facing treatment decisions for a patient who might die.

Partnering with patients

In the same article, Ubel also wrote that physicians have moved away from making treatment recommendations in favor of informing patients of all medical alternatives and allowing the patient to make a choice.

Which raises the question: what if the patient doesn’t understand the choices? And also, are doctors unconsciously swayed in the way they offer the alternatives?

“The answer is yes,” said Ubel in our conversation. “There’s no way that most patients are going to get a medical degree level of knowledge fast enough to inform their decision … I think patients shouldn’t be expected to just make a decision like they understand everything about it.”

Therefore, he said, the role of a clinician is to help the patient understand the most important things relevant to their choice, and then to know the patient well enough to help guide them toward the best alternative.

For instance, he said, consider a slow-growing disease like early stage prostate cancer.

“If I know that you’re someone who would be very anxious about having an untreated cancer in your body, and don’t worry about any side effects from treatments that could impact the cancer, I might recommend that you get the cancer out of you. Someone else might say that they’re not worried about the cancer as long as they’re monitoring it, and would feel terrible about the side effects. Maybe that person should just watch the cancer,” he said.

Or another example: “You might be the type of physician that explains, ‘Here’s your alternatives – we could try one more round of chemo, or we could just put you in hospice.’ And the patient is like, ‘Oh my gosh, I don’t want to die, give me chemo!’ The physicians don’t feel comfortable saying, ‘Well, if it was me, I would go into hospice.’ So maybe they don’t share their own perspective.”

Meanwhile, that perspective might be worth hearing. “Physicians will bring to that experience so much of what they’ve seen. Those who have seen too many patients suffer with extraordinary end-of-life care, I would expect them to want to say no to that kind of care – even though they might have given that same kind of care to other people.”

Taking the personal view

How do we, as patients and loved ones, encourage doctors to step away from the statistics and help us make these very personal decisions in a personal way?

One option is to ask the doctor, “What would you say if I were your mother? How would you advise her?”

Ubel said it’s worth a try, but he can’t confirm that it’s necessarily going to get the desired results.

“We’ve seen patients asking questions just like that when they’re talking with doctors and I think it’s a very powerful way to frame it,” he said. “But I don’t yet know if it works. It’s worth trying, but I don’t know.”

But there is one thing that Ubel feels comfortable recommending.

“[The doctor] might be assuming that what the patient wants is aggressive care, without really checking whether they might be happier with something less aggressive,” he said. “I think the most important thing is to give your doctor permission to do less than everything. Let the doctor know, I know I’m not going to live forever and I don’t want treatments that are going to make me more miserable with little to gain. Sometimes when physicians realize you’re not desperate to try everything, that might flip a switch in their thinking.”

A Graceful Goodbye - Personal reflections from Leah

Prior to my experience with my mother’s uterine cancer, I never gave much thought to how doctors make treatment recommendations. I assumed that it was all based on statistics and medical studies. And, with no skin in the game, that seemed rational to me.

But once those recommendations became extremely personal, I was no longer interested in statistics. My mother was my favorite person in the world, not a tick mark on a spreadsheet. I wanted her to live as long as possible, but not at the cost of terrible suffering – something that became part of the picture when the doctors recommended a second type of chemo that was supposed to have minimal side effects. Unfortunately, for my mom, that wasn’t the case. She had terrible side effects that were going to become increasingly untenable as time went on.

If the trade-off between quantity of life and quality of life meant that she was going to die sooner, I was willing to accelerate my grief in order to decrease her suffering. Numbers and percentages can only go so far in making flesh-and-blood decisions.

My mom’s decision to halt treatment and live the rest of her life on her own terms remains one of the most courageous decisions I can imagine.

And even though she might have lived a couple extra months if she had chosen differently, if we had it to do over again, I wouldn’t ask her to spend a single moment reconsidering that decision.

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