Doctors struggle with telling patients the end is near

Over the nearly 41/2 years of Nancy Carolan's battle with acute myeloid leukemia, her oncologist had pulled her from the brink several times.

Strong-willed and brave, Carolan had endured infections, brutal rounds of chemotherapy, and a bone-marrow transplant. She was an optimist who wanted to believe she could beat the blood cancer.

By August, though, her sisters could see that Carolan, 63, had lost the fight. She was hospitalized, very sick and still receiving aggressive care.

Carolan's sisters had given more thought to death than most. One, Sally Downey, is a retired Inquirer obituary writer. The other, Marian Parrott, is a hospice doctor in Maryland.

Carolan had resisted their frank approach to the topic, and they were reluctant to tell her where things were going. She saw them as "harbingers of death," Downey said. "We did not want to bring it up because we were afraid she would scream at us."

So Downey asked her sister's oncologist at the Hospital of the University of Pennsylvania to tell Carolan she was dying. " 'We never tell patients they're dying,' " Downey said the doctor told her. Pressed more, the doctor said she would tell Carolan when it was time for hospice.

About a month later, hours before a scheduled family meeting, the doctor had a private chat with Carolan, who went to inpatient hospice the next day. She was dead less than 24 hours later.

The doctor declined to discuss this case or how she delivers bad news. A Penn spokeswoman said the doctor believes "she has a responsibility to offer all treatment options." She pointed out that the family might not have known about all conversations between Carolan and her doctor.

Downey and Parrott praise the Penn team for giving heroic care. But they think better communication might have given Carolan a more comfortable final chapter and more quality time with her adult children.

"Everybody felt like this was a third rail that couldn't be touched," Parrott said.

Death is not the taboo topic it once was, but experts agree many doctors still wait too long to discuss it.

Oncologists have a bad reputation. "There are lots of jokes in my business," Parrott said, "like, 'Why do they nail the coffin shut? To keep the oncologist from getting in there and giving one more dose of chemo.' "

There may be a kernel of truth in that, but have some sympathy for people who have chosen a hard, heartbreaking job. After months or years of trying to eke out as much precious life as possible, it's hard to tell a patient the cancer is winning.

Parrott gets that. "They took such wonderful care of her," she said, "but it was just too hard to let go at the end, I guess."

Doctors now get some training in school in delivering bad news. The American Society of Clinical Oncology (ASCO) is working to integrate palliative care - which focuses on patient comfort before or during hospice - more seamlessly into cancer care. Palliative-care practitioners often ask patients how they want to balance quality and length of life and what they value as death nears.

A nonprofit group originally designed for oncologists recently changed its name to VitalTalk and included other specialties. Its mission is to teach practicing doctors how to talk with patients about emotion-charged topics.

A VitalTalk founder, Bob Arnold, a palliative-care physician at the University of Pittsburgh, said giving patients bad news and "walking with" them as they die were as much a part of a doctor's job as fighting disease.

"Part of it is to think about what your job is in a different way," he said. "If your job is to cure things . . . then it's going to be really hard."

Nancy Carolan's case illustrates why what Fox Chase Cancer Center lung oncologist Hossein Borghaei calls "The Talk" can be so hard. Some patients want the unvarnished truth. A smaller percentage do not. Some seem hell-bent on denial. Families might not be on the same page.

Everyone hears how great new targeted cancer care is. Diseases that once killed quickly can be held at bay for years. It's hard to accept that there are no more rabbits in the hat. Plus, doctors are notoriously bad at estimating when patients will die.

Still, aggressive care may do more harm than good at the end. Patients should know that.

How should doctors respond?

Ideally, talking about death would be a normal part of life. Then it wouldn't be so hard when the medical going gets rough, said Salimah Meghani, a Penn nursing professor who helped produce the Institute of Medicine's recent  Dying in America  report. We should start talking with our kids when they get their driver's licenses or turn 18. "It's never too early, ever," she said.

Doctors should be asking about end-of-life wishes before patients get sick and certainly after they get a life-threatening illness. There should be another talk when doctors wouldn't be surprised if the patient died in a year.

Meghani thinks only a "very, very small percentage" of doctors are doing it right.

Other experts said oncologists should make it clear from the start to patients with metastatic cancer that there is no cure. They also recommend telling patients when the doctor thinks the next treatment will likely be the last.

Still, the point will come when someone should get to the hard stuff. Several oncologists said they try to have the talk two to three months before they think a patient will die.

They usually call a family meeting. Some ease into bad news by asking questions. Most patients already know their bodies are giving out. The model is Ask Tell Ask: Ask a question to learn what patients know. Fill in some facts. Ask again. Repeat.

Some avoid the D-word. Some reserve it for the patients who seem most reluctant to hear it.

Oncologist Jamie Von Roenn, whose husband died of cancer eight years ago, thinks doctors should go ahead and say "die." If they use euphemisms, it tells patients they're not comfortable talking about death. "It has to be couched in kindness and empathy," said Von Roenn, ASCO's senior director of education.

Parrott agrees the medical jargon can get in the way. "We tell them we've exhausted all therapeutic modalities . . . which I don't think the average person can make sense of," she said.

Pennsylvania Hospital's new supportive oncology service helps patients understand what their doctors said. "It's not explicit, and I think that leaves a lot of questions for people to try to understand," social worker Dana DeDonato said.

Then there's the other D-word: denial. It is a powerful coping mechanism. As Penn lung cancer specialist Corey Langer put it, "You disentangle denial at your own peril."

Other doctors agree. They also say they must tell patients when things are going poorly. Some refuse to give more care aimed at killing the cancer at that point, even if patients want it.

John Leighton, an Albert Einstein Medical Center oncologist, introduces the idea that the end is near before giving what he suspects is last-chance care. If a patient insists he keep going, he says he'll see how things look after one or two doses. "If I feel that I've made things worse for you," he says, "I will stop it."

Massimo Cristofanilli, a Jefferson oncologist who treats women with aggressive breast cancers, said removing care "is the last thing I want to do." Before talking to a patient, he reviews her chart and convinces himself there's nothing else to do. "I want to be honest, always, all the time."

Because patients fear abandonment, doctors should lay out plans for a different kind of care. "I would never, ever say there's nothing we can do," said David Axelrod, who coaches medical students at Thomas Jefferson University on giving bad news. "There's always something we can do."

Borghaei knows his patients worry about pain and being unable to breathe. "I'm not going to abandon you," he tells them. "I'm not going to let you suffer."

Von Roenn changed her message because of her husband. Before he died, he said what hospice experts call the "five things" to each of their children: I forgive you. Please forgive me. Thank you. I love you. Goodbye.

When she saw how powerful that was, she told patients about it. She'd say, "I'm hoping you're going to do well, but I think we have to prepare for if you don't." Then she'd introduce the five things. "I was stunned by how receptive patients and their families were." Now it's her routine. "It's painful, but it's meaningful."

These conversations can be hard on doctors. Some think maintaining composure is a must. Others get teary-eyed.

Sometimes Borghaei feels he's failed. He teared up recently when he had the talk with a young mother. "You never get used to the fact that you're sending someone to hospice because medical knowledge and our understanding haven't progressed to the point where a 35-year-old can see her kids graduate," he said.

Langer said he cries sometimes, too, even after 27 years of practice. "It doesn't get any easier," he said.

Arnold, who says meditation can help doctors feel more comfortable with emotions, doesn't think they should worry if patients see a few tears. "I can't let my sadness keep me from having conversations that in the end are really helpful to people," he said.

"I think patients see it as . . . 'He gets it.' "

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