scroll down please for other stories: How teen faced fatal cancer, & Gawande End-of-Life Lessons:

Hannah Duffy and her mother, Susan Funck, during Hannah’s last visit to the beach. She died three weeks later in 2013.

Deanna Ryan Photography

Hannah Duffy during chemotherapy. Her mother spoke at aconference in Philadelphia. SUSAN FUNCK

How a teen faced her fatal cancer

Hannah Duffy taught adults and her friends as much about life as about death.

By Stacey Burling INQUIRER STAFF WRITER

Susan Funck got the horrible news on her 47th birthday — Aug. 27, 2012.

Her 13-year-old daughter, Hannah Duffy, had a brain tumor. A biopsy later confirmed that the tumor was malignant. It would be fatal.

Funck swore from the beginning that she would tell Hannah the whole truth about her diagnosis. Over the next year, Hannah confronted her mortality, sometimes tearfully. She also scored a winning soccer goal in double overtime two weeks after her biopsy. She laughed and celebrated. She demanded spicy food on chemo days. She kept her heart open.

She taught the adults in her circle and her young friends as much about life as death.

“We kept wondering why God didn’t cure her,” one of her friends said at her wake.

“But I realize now the miracle was that last year of her life,” another said. “Nothing was left unsaid.”

Hannah’s mother and her oncologist and chaplain at Children’s Hospital of Philadelphia talked about that year at Friday’s joint annual meeting of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association. During an emotional hour in a small Convention Center meeting room, they described what Hannah feared and wanted as her cancer progressed.

While it is her “mission” to be open with the children she treats, Jean Belasco, the oncologist, said the path that Hannah and her family chose was unusual and a “work in progress.”

Laura Palmer, the chaplain, said Hannah’s story showed the value of hard conversations, are-curring theme at the four-day meeting of nearly 3,000 health professionals. The author and surgeon Atul Gawande had addressed the main gathering a short time before.

“Until we ask someone what their fears and concerns are about dying,” she said, “we really cannot know what they are thinking.”

Hannah was a natural athlete, a loyal friend, and an adoring big sister, her mother said.

Funck and her ex-husband, Kevin, decided that Belasco would break the news to Hannah that MRI had found a tumor. Her mother would be present.

“I looked at her and only her, and said she had a brain tumor,” the oncologist said.

“Is it benign or malignant?” Hannah immediately asked.

“I don’t know,” Belasco replied. That and a little information about the biopsy was all that the girl needed then.

Hannah, who had been having seizures that summer, had suspected a brain tumor. “It wasn’t a surprise to me,” she wrote in her journal after MRI. “It was like I expected it.”

After “nine really good months,” her mother said, Hannah was hospitalized again.

Belasco told her the cancer was back.

“Well, it never went away,” Hannah said.

“Am I going to die?” she asked.

“Yes, but not today,” Belasco answered.

Then Palmer stepped in. She talked with Funck about Hannah’s upbringing — Catholic — and met her new, very sick patient in a dark hospital room. Funck lay in bed with her daughter. The three talked for a long, painful time. They all cried.

“Will everyone forget me when I die?” Hannah asked.

Palmer said Hannah had made such a big impact on her family and friends that her spirit would live on. “No one could possibly forget her,” she said, “because, when you love someone deeply, you live in that love forever and, unless you stop loving someone, you can’t forget them.”

Hannah asked if it would hurt to die or be cremated — no — and if she would be able to recognize her Aunt Michele when she got to heaven. Palmer said Aunt Michele would recognize her. She said Hannah would be able to recognize her mother even if Funck died 50 years later. “You know the sound of each other’s heartbeats,” Palmer said.

“Will people be disappointed in me?” Hannah asked. “I was supposed to beat my cancer.”

Hannah had beaten the cancer, by not letting it touch her spirit, Palmer said. She had inspired others by not letting fear hold her back, by living life on her terms.

Hours later, the chaplain was still shaken. Then she saw a surprisingly happy Funck in the hall and learned that Hannah felt much better. “What I thought might be too much was cathartic and liberating for Hannah,” Palmer realized.

Soon after, Hannah asked to go home. Her doctor was pleased. It meant Hannah had taken control of her life. Hundreds of people from her community, Tinton Falls, N.J., welcomed her home. She lived, with help from hospice, for five more weeks.

She gave marching orders to her survivors.

Her close friends were to wear pink high heels with shiny silver H’s etched in glitter on the soles to her wake. (They used rhinestone stickers.) She asked friends to embroider her name on their wedding dresses. She said she would send signs for them after her death: sunbeams and butterflies.

“When you look at a clock and you see that it’s 9:11, think that it’s me,” she told her mother.

Why 9:11? Funck asked. “Every time I look at the clock, it’s 9:11,” Hannah told her.

On Hannah’s last day, her room seemed peaceful and glowing. “You can fly with the angels,” her mother told her. “Mommy will be OK.” Hannah died on Sept. 26, 2013, at 9:11 p.m. She was 14. After the presentation Friday, Funck said Hannah would have wanted the hospice doctors and nurses to hear about her life. “Her greatest fear was that she was terrified of being forgotten,” her mother said. “I think it’s important, as hard as it is for me, to share her story.” sburling@phillynews.com 215-854-4944 @StaceyABurling

End-of-Life Lessons

An accomplished physician learns the value of talking and listening, whether doctor to patient or within families.

By Stacey Burling INQUIRER STAFF WRITER

It may be the fact that Atul Gawande is a doctor — a Harvard doctor, yet — that draws readers to his books on our flawed medical system.

But he wouldn’t make the best-seller lists if he wrote — or thought — like most doctors.

This is a guy with one of those renaissance-man resumés that makes even quite accomplished people look like slackers. Stanford undergrad. Rhodes scholar studying philosophy. Health-care adviser to President Bill Clinton. Medical degree and master’s in public health from Harvard. Writer of four books and many New Yorker articles . MacArthur fellow. Surgeon. Founder of a lab that studies health quality. Now, after working on aPBS Front-line segment on his book, he’s learning filmmaking. He’s 49.

What seems to hold all that together is, obviously, a fine brain, but also relentless curiosity, an eye for story, and an attraction to complex problems. What sets him apart as a writer is his ability to make what he’s learned seem simple. Or at least simpler.

His latest topic — aging and dying in America — is immense. In Being Mortal: Medicine and What Matters in the End, Gawande tackles the joyless way many people live in their later years and the excesses of medicine that many endure in their final months and days. The 263-page book interweaves stories about his own family and patients with reporting on how we die, trends in housing for the elderly, and the value of geriatricians and palliative-care specialists.

Gawande — pronounced guh-WAHN-dee —is scheduled to speak this week to about 2,500 doctors and nurses at a joint meeting of the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association at the Convention Center. (The meeting is aimed at medical professionals and students. Registration costs $205 and up.)

The book is selling well — it’s the No. 1 nonfiction title on the New York Times best-seller list — but it is unlikely much of what Gawande says in it will be news to this crowd. Asked by phone what he would tell the pros,

Gawande laughed and said he was still figuring that out.

“At one basic level,” he said, “it’s, ‘Thank you, and why the hell aren’t people listening to you?’ ”

Gawande’s book, which includes some material previously published in the New Yorker, is partly a personal journey: adoctor discovers he has been seeing only a fragment of the medical picture as his wife’s grandmother declines with age and his father, also aphysician, copes with afatal cancer.

Gawande the surgeon has focused on keeping people alive. As he explores what aging and disability are really like, he sees that he has shied away from talking with his patients honestly about the problems he can’t fix.

Asked how someone steeped in medicine and health policy could have been so naive, he referred to the first line of the book: “I learned about a lot of things in medical school, but mortality wasn’t one of them.”

Many doctors go into medicine because they like the idea of saving people, he said. He did, too, but he was soon troubled by suffering he was unable to relieve.

Still, his perspective was limited. “Your glimpse of people’s lives is the glimpse you get in a 30-minute office visit,” he said. “That’s not their real life.”

Researching the end of life like a reporter took him into houses, nursing homes, and assisted-living facilities, places where most doctors don’t go. Seeing firsthand the tough decisions his family had to make added to the picture.

“I’d not seen what it was like to be the husband dealing with the wife who couldn’t eat anymore,” he said, “or the daughter with the father who’s become a quadriplegic.”

He had set out to write about the end of life but realized the need for better communication about what people want and need starts much earlier, as age and debility begin to erode independence. Their children want them to be safe, Gawande said, but what older people want for themselves — what we all want for ourselves — is autonomy and a sense of purpose.

These attitudes should have been entwined in medical decision-making, but they weren’t. Faced with choosing among eight or nine chemotherapy regimens for his father, Gawande realized he needed more information. How would each affect his father’s desire to maintain mental clarity and function? Ultimately, his father’s condition declined, and he had no chemo at all. Soon, it was time for hospice.

If there’s one message Gawande would want people to take from the book, it is that doctors need to talk to their patients, and we need to talk to our families about what really matters at the end. “People have priorities beyond just living longer, no matter what,” Gawande said. Those priorities vary. “The most reliable way of knowing is to ask them.”

Gawande comes across as low-key and serious, not flashy like, say, TV’s Dr. Oz. He came to this topic after studying medical quality. He is big on checklists as a way to reduce errors in complex care. So, of course, he asked experts on patient communication for key actions to check off.

One of the suggestions that stuck with him is to talk less than half of the time while he’s with a patient. He was horrified to learn he was talking close to 90 percent of the time. A palliative-care doctor told him, “You’re an explainaholic.” Once he talked less, he saw what patients need is “some opportunity to explain themselves, what their fears are … what they’re willing to sacrifice, what they’re not willing to sacrifice.”

He has become more comfortable with the topic and is hopeful others will too as more people witness hospice and palliative care. Each of his own three children, now teenagers, has been exposed to at-home hospice through a friend or teacher, he said. “That idea that there’s someone in the neighborhood who might die and in their home” has led to questions and good discussions at his house. More of that, in other families and other doctors’ offices, will bring the barriers down and, he hopes, drive policies that will restructure long-term care and how we pay for care of the sick and elderly.

Gawande does not spend much time in the book on the nuts and bolts of how to change end-of-life care. He thinks better care will flow from awareness, talking about what makes life meaningful and what reduces suffering when time is short. The “fundamental barrier” to change, he said, is not money, but “tremendous anxiety on the part of clinicians and family members.”

Ariadne Labs, his research center with Brigham and Women’s Hospital and the Harvard School of Public Health, is an effort to provide tools that improve care at key points in people’s lives. Those include childbirth, surgery, and, now, serious illness.

A current project is testing the impact of routinely discussing end-of-life goals with patients at risk of dying in the next year.

Susan Block, a Harvard palliative-care specialist who heads that study, said it would involve 400 patients, 400 family members, and 90 oncologists. “This is one of the largest palliative-care trials of a complex intervention,” she said. It likely will take three years to complete.

She said Gawande’s interest in checklists made her rethink what she does. She was also impressed with his ability to illustrate how aging and palliative care’s emphasis on non-medical goals flow together.

It is true, she said, that others have already said much of what’s in the book, but she thinks Gawande framed the information differently and found a way to make it especially moving.

“Atul has a unique voice and a way of telling stories and synthesizing information that is quite extraordinary and compelling to people,” she said.

Gawande thinks sales of the book — even as Christmas presents and airport purchases — are a sign people are ready to talk more openly about death. Where will he focus his energy next? He was cagey about that. “I can’t give it away yet,” he said. ssburling@phillynews.com 215-854-4944 @StaceyABurling www.inquirer.com/health_science

“Being Mortal” decries the joyless ways many people live their later years.

“Your glimpse of people’s lives is the glimpse you get in a 30-minute office visit,” Atul Gawande says. “That’s not their real life.” ALEXANDER RATHS

Being Mortal

COMING FEBRUARY 10, 2015Check local listings »

FRONTLINE follows renowned writer and surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life.

(3:34) How should doctors help terminally ill patients prepare for death?

FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. In conjunction with Gawande's new book, Being Mortal, the film investigates the practice of caring for the dying, and shows how doctors -- himself included -- are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.

THE LATEST

A Link Across Generations

February 10, 2015, 1:31 pm ET · by Priyanka Boghani

The prolonged dying process of his own father was one of the catalysts for Dr. Atul Gawande to better understand end-of-life care.

Why Is It So Hard for Doctors to Talk to Patients About Death?

February 10, 2015, 10:41 am ET · by Tim Molloy

When a young mother was terminally ill, Dr. Atul Gawande offered advice to give her family hope. In “Being Mortal,” he says he now regrets it.

Coming in February on FRONTLINE

January 28, 2015, 10:14 am ET · by Patrice Taddonio

Is modern medicine failing patients at the end of life — and what can be done to turn the tide? On Feb. 10, FRONTLINE teams with surgeon and bestselling author Atul Gawande to explore “Being Mortal.”

Press Release | FRONTLINE Teams with Atul Gawande to Explore Being Mortal

January 21, 2015, 6:45 am ET

Death is something we will all one day face. So why is it so hard for doctors to talk about dying with their patients?

How Should Doctors Help Terminally Ill Patients Prepare for Death?

October 17, 2014, 4:30 pm ET · by Patrice Taddonio

“You don’t have to spend much time with the elderly or those with terminal illness to see, over and over and over again, how medicine fails the people it is supposed to help,” says renowned surgeon and author Dr. Atul Gawande.

RELATED PROGRAMS

13:01 Doctor Hotspot07/26/2011

"Poignant and agonizing" -- The New York Times
"Truly excellent TV" -- The Globe & Mail
"Important" -- The Denver Post

Death is something we will all one day face. So why is it so hard for doctors to talk about dying with their patients? And how can the medical profession better help people navigate the final chapters of their lives with confidence, direction and purpose?

Tonight on FRONTLINE: Being Mortal, based on the #1 New York Times bestselling book by surgeon and New Yorker writer Atul Gawande.
The film is an intimate look at how, in Gawande's words, "medicine fails the people it's supposed to help" -- and how doctors and patients can better deal with the end of life.

Find out when Being Mortal airs on your local PBS station, and join us on Twitter and Facebook for a special conversation using the hashtags #BeingMortal and #WhatMattersMost.

***

Text FRONTLINE to 617.300.0810,
and we'll let you know when FRONTLINE airs next.

How a teen faced her fatal cancer

Hannah Duffy taught adults and her friends as much about life as about
death.

By Stacey Burling INQUIRER STAFF WRITER

Sometimes, patients with life-threatening diseases can live for years or decades. But Dr. Atul Gawande says he knows that many "will not get to win that lottery."

What can he do for them? FRONTLINE's Being Mortal followed Gawande and other physicians with terminally ill patients. In an intimate new podcast produced by Gary Covino, Gawande and Being Mortal filmmaker Tom Jennings talk about why they made a film about end-of-life care -- and how doctors can still help patients, even if they can't save their lives.