Showing posts with label end of life. Show all posts
Showing posts with label end of life. Show all posts

Sunday, May 28, 2017

What's A Good Death? How Do U & Yr Loved Ones Handle Death? End-Of-Life. Assisted Death




Saturday, May 27, 2017

End-of-Life Stories
By CATHERINE PORTER
John Shields was one of a growing number of Canadians to choose a medically assisted death. The day before he died, he held a living wake with his closest friends and family members.
John Shields was one of a growing number of Canadians to choose a medically assisted death. The day before he died, he held a living wake with his closest friends and family members. Leslye Davis/The New York
One of the hardest parts of my job is not writing many of the stories I gather. There is never enough room. My article about John Shields’s decision to end his life was particularly heartbreaking on this account because he wasn’t the only person who opened up his life and pending death to me. Two women also did.
In all three cases, we struck a deal. They were free to tell me to buzz off at any time, and I might not write their stories. There were two main reasons for this: I didn’t want to influence their decisions, and I wanted, in the end, to tell one intimate story. All three graciously accepted. In the case of the two women, they told me they had found the interviews helpful. I’d like to tell you a bit about them.
June Vaile was a feisty and forthright Torontonian. Her diagnosis of colon cancer came as a relief to her, she said, because near-total blindness caused by macular degeneration had robbed her of her life’s pleasures two years before. Canadian doctors performing medically assisted deaths told me this is common, by the way. The suffering of many people nearing death is psychological, from their loss of abilities and purpose.
Ms. Vaile, 80, was a single parent, an interior designer, an avid traveler and, in her 30s, an activist for assisted death with the lobbying group Dying With Dignity. She delighted in the fact that she was now benefiting from that work. She called it a seed she had planted decades ago that was taking bloom now.
In the weeks before her scheduled death, her family surrounded her and many friends dropped in to say goodbye. “If I’d died naturally as a sick old lady, I’d have missed it,” she told me. “I think it’s wonderful.”
She died on April 1 with her two children beside her.
The second woman was Eve McLeod, 62, a quiet and introspective person from Victoria, British Columbia, who died on Tuesday from pancreatic cancer. When she was told she had cancer, she had recently retired from her nursing job and was mourning the loss of her mother.
Ms. McLeod lived in a quaint bungalow, cluttered with her mother’s furniture. Out back was a stunning garden that she loved to work in while listening to Baroque music. She never married, but had deep, rich friendships.
In the end, Ms. McLeod died naturally. But the option to end her life offered her relief — she was very frightened of the pain she might endure — and focus. It prompted her to prepare, she said. When I arrived at her house one day in March, she had the outfit she wanted to be buried in laid out. I recorded her telling me about it on my iPhone. You can watch that video, edited by my colleague Erica Berenstein, here.
Read: At His Own Wake, Celebrating Life and the Gift of Death
Mr. Shields, in photographs provided by his family, was an activist, an environmentalist and the president of the British Columbia Government Employees’ Union. “He has never met an audience he didn’t love,” said Preben Skovgaard, his former chief of staff and best friend.
Mr. Shields, in photographs provided by his family, was an activist, an environmentalist and the president of the British Columbia Government Employees’ Union. “He has never met an audience he didn’t love,” said Preben Skovgaard, his former chief of staff and best friend.
My article about Mr. Shields prompted readers to leave comments both on The New York Times’s website and through Facebook. A selection of comments, edited for space and clarity, is below.
We’re interested in hearing more. How do you and your loved ones handle death? Has Mr. Shields’s story affected your views on what you might consider a “good death”?
Please let me know. We will be reading your responses, and we may publish more of them.
My husband made his own coffin, used it as a bar to celebrate his life with friends and music one week before he died. Much love, friendship and music in the backyard. All was good.
Carmen Lopez, Winnipeg, Manitoba
John Shields was a man of integrity. He stood up for his convictions and always fought for the working person. I do believe that Canada is a more compassionate society than that of the United States. We’ve also had governments that tried to hurt and divide us. Men like John Shields prevented this from happening in Canada.
“Vanstar,” Vancouver, British Columbia
My mother passed away two months ago and she chose life to her very end. Five years ago, doctors told us she was at the end of her life. Miraculously, she lived much longer than anticipated and got to see her then-2-year-old granddaughter turn 7 and get to know her and love her. I saw my mother suffer, especially during the last year, so I can totally understand why people would choose just to go. However, as Christians, we believe that our lives are brief moments, and that it is not so much about how we died; it is much more about where we will spend eternity. This, too, is respectful, just as the decision of this Canadian gentleman. As a Canadian myself, I will always advocate and be proud to live in a country where my rights and beliefs as a Christian are also respected, just as it should be for doctors who do not wish to facilitate euthanasia. This to me is the true sign of a civilized society.
Patricia Gonzalez
I have never read anything that moved me as much as this story. I am sitting here trying to see my keyboard through many tears. I salute the intelligence and compassion the government of Canada has shown in allowing this procedure to be performed. Godspeed, Mr. Shields.
John Lusk, Danbury, Conn.
My dad died last year, and I think if he’d had more time he’d have chosen this. In the end, he needed so much morphine and methadone to control his pain that it killed him. I’m still angry that heroin wasn’t available. But I’m glad this is available now and that marijuana will be more available for those with chronic pain. We are getting less prissy and judgmental. Our family is not religious and feel that anyone who is should not use these options, but shouldn’t interfere in the lives of others.
Shawn, Saskatchewan
Mr. Shields with his wife, Robin June Hood, in a photograph of their wedding provided by his family.
Mr. Shields with his wife, Robin June Hood, in a photograph of their wedding provided by his family.

Tuesday, April 5, 2016

End-of-Life Care/Counseling and Medicare/Doctors/Patients

Philadelphia Inquirer, Sunday, March 27, 2016, Page G1, HEALTH section:


End-of-life care and Medicare

Doctors can now bill for end-of-life counseling.

Picture
istockphoto.com
JUPITER, Fla. — She didn’t want to spend the rest of her days seeing doctors, the 91-year-old woman told Kevin Newfield as he treated a deep wound on her arm.
“You don’t have to, but you have to tell me what you do want,” the orthopedic surgeon replied.
“I’m not afraid of dying. I’m afraid of being 106,” she told Newfield and her daughter, who was in the room with them.
The woman’s admission in Newfield’s south Florida office that January day triggered a 20-minute discussion about living wills, hospice, and other end-of-life questions, Newfield said.
Newfield is comfortable having those conversations. Many doctors are not, but a Medicare policy, known as advance care planning, that took effect in January could help change that.
Physicians can now bill Medicare $86 for an office-based end-of-life counseling session with a patient for as long as 30 minutes. Medicare has set no rules on what doctors must discuss during those sessions. Patients can seek guidance on completing advance directives stating if or when they want life support measures such as ventilators and feeding tubes, and how to appoint a family member or friend to make medical decisions on their behalf if they cannot, for instance.
The new policy reflects Americans’ growing interest in planning the last stage of their lives when they may be unable to make their wishes known.
In 2014, the Institute of Medicine, an influential panel of experts, found that the nation’s health system was not adequately dealing with end-of-life care, and among its recommendations was that insurers pay providers for advance-care planning discussions.
Last September, aKaiser Family Foundation poll found 89 percent of the public said that doctors should discuss end-of-life care issues with their patients, though just 17 percent of Americans — and 34 percent of people 75 and older — said that they have had such conversations. (KHN is an editorially independent program of the foundation.)
Under the new Medicare policy, doctors can give end-of-life advice during a senior’s annual wellness visit or in aroutine office visit. Nurse practitioners and physician assistants can also get paid for having the talks. Counseling can also occur in hospitals.
“For doctors already providing this counseling the payment is an added benefit and for doctors on the fence about talking about the issue with patients, this may be enough to inspire them to try it,” said Paul Malley, president of Aging with Dignity, anational advocacy group based in Tallahassee, Fla.
Newfield, the Florida surgeon, is less optimistic. He said that he doesn’t think the money will cause him to initiate more end-of-life discussions and that doctors who were not having them before now are unlikely to start. After all, said New-field, doctors make money by keeping people alive.
The payment idea was first floated in 2009, as part of the congressional debate over the Affordable Care Act. Back then, a proposal to have Medicare pay for such discussions sparked political controversy and fueled concern that they would lead to so-called death panels that could influence decisions to avoid medical care. The proposal was quickly dropped.
Medicare’s policy now has broad support from health providers and patient groups, but neither physicians nor the American Medical Association foresee a surge in end-of-life planning among Medicare’s more than 50 million enrollees. The AMA, which supports the reimbursement, estimates that Medicare will pay for fewer than 50,000 counseling sessions in 2016.
The numbers may well be held back by the small reimbursement rate for half an hour of counseling, but another obstacle rests with doctors themselves. Many are not trained to offer such advice or they are uncomfortable talking about it with patients.
“Just the first step,” the journal Health Affairs headlined an article about Medicare’s new policy in its March issue.
“The perception that lack of training could be a major stumbling block to the greater implementation of advance care planning is widely shared,” wrote David Tuller, a lecturer at the University of California-Berkeley’s School of Public Health.
Medical schools such as the Cleveland Clinic Lerner College of Medicine and the University of California-San Francisco have recently begun expanding training on the subject.
“This kind of training is crucial — one of the things that gets in the way of understanding and using patient preferences is that clinicians are often uncomfortable having these challenging conversations,” said Robert Wachter, professor and interim chair of UCSF’s Department of Medicine. “The issue of end-of-life conversations is so compelling and fraught — teaching it also allows us to teach about more general communication skills.”
Some doctors admit they could do better.
Scott Dunn, a family physician in Sand-point, Idaho, said he regrets not having done more recently to help a 76-year-old patient avoid spending his final weeks in intensive care, connected to machines breathing for him and feeding him. That meant the patient may have needlessly suffered and cost the health system tens of thousands of extra dollars, he said.
“I wish I had taken the time months earlier to have that end-of-life discussion, but I did not,” he said.
Dunn said the incentive payment will entice him to have more such discussions with patients, but they won’t become routine in his practice. “Medicare pays us more to do other stuff.”
Michael Guarino came to a different view after watching his elderly father die last year, weeks after he became unable to move or talk. Guarino decided then that the 800-physician organization of which he is executive director — the Independent Physician Association of Nassau/ Suffolk Counties in New York — would include end-of-life discussions for all adult patients.

Saturday, August 1, 2015

DEATHWATCH:A Day in the Life of My Dying Mother-in-Law PART IV

Continued from yesterday - Part IV - more parts to follow:


Everyone is looking for you” (Mark 1:37).Just another add on thought FYI:  Geri has been mostly very difficult through all this, very mean and demanding something often, close to all of the time.  She has not been thankful or appreciative.   And she has often been very mean to Amy, insulting and belittling Amy.



We have a hospice nurse coming roughly every other day to the house.  She is really quite helpful, to us and to Geri.  Yesterday she pulled us aside and asked if we had a funeral home in mind that we want to use for Geri.  And we answered no we do not have a particular funeral home in mind.  She offered that now is the time to pick out a funeral home and that we should keep their phone # handy.  She feels that Geri's at time labored breathing among other issues indicates that Geri could have an episode at any time, and that she could die.
It's funny because the nurse being so direct makes you focus on and really think about death pretty clearly, as clearly as is possible.  It's still hard to fully grasp, especially for Amy who has not lost a parent yet.  And Jack doesn't want to think about it and the details at all.  When we've brought up death with Geri briefly and only 2 or 3 times in the last few months, when she was able to think better and to understand things, she always said, "do whatever you want."  To me that is very selfish, irresponsible and actually kind of mean. The Geri I know has been great at times but often she's been very selfish, and jealous, living her life.  The right thing to do is to figure it out FOR us and tell us what to do in detail so that we don't have to figure out what to do, to "do whatever we want."  Death is hard for most people.  Even right now Amy is struggling with what to do.  We're not thinking clearly NOW.  It's hard to focus on.  And when death
does occur thinking clearly will be hard; emotion, grieving and sadness kick in.  It can be easy to talk about death away from death, way before death has occurred (even though most Americans, only about 28%, preplan), but most Americans still do not like to talk about death, and do not do so easily.
Amy is thinking that when Geri dies she does not want to see people.  While grieving she just wants to grieve she doesn't want to talk to people.  So she does not want a funeral.  She's wondering though if our friends and her family would think that that's a terrible thing.  Probably we will cremate Geri and scatter most of her ashes privately in different places nearby.  Thinking about "doing whatever we want" burial-wise and funeral-wise for Geri has been hard and usually Amy starts crying.
Amy advised Jack to tell Geri he loves her.  He offered that he had not said that to Geri in a long time.  Amy thinks she will start calling some family and friends today and suggest that they come by the house to say goodbye to Geri.  Even though Jack thinks we should tell no one.  Watch, Geri will live 6 more months, or years.?!
Hospice asked Geri a # of times if she would like to see a chaplain and Geri has said no, loudly, each and every time.  As difficult as Geri has been at times, we still love her very much.
It's such a cliche unfortunately, and we all get so caught up in our lives, but love the one you're with, and enjoy each and every day.

To Be Continued 

Friday, July 31, 2015

A Day in the Life of My Dying Mother-in-Law PART III

continued from yesterday - PART III:



Everyone is looking for you” (Mark 1:37).
Yeah sorry to go on and on.  I tend to do that; stream of consciousness.  I just wanted to give u a sense of a "Day in the Life Of."  And that was just the first half of yesterday.  We had a tough 2nd half of the day too.  Geri had a very important Doctor appointment yesterday late afternoon.  Since she can no longer walk or go in a wheelchair she has to be transported everywhere via private ambulance.  The drivers took her to downtown Philadelphia to a very wrong address, not to the correct address in a town just outside of Philadelphia!!  The doctor's secretary yelled ridiculously at Amy which got Amy crying.  The doctor, a "good" friend of Geri and Jack's, said he was leaving his office and would not wait for the ambulance to arrive at the right location which would take about 40 minutes.  The secretary offered that Geri could reschedule in another 3 weeks!!  We had already waited 3 weeks for this appointment.  The secretary and doctor should react
with a lot more empathy and kindness and urgency.  
We're now literally on about our 12th private ambulance company in the last year.  There's been a HUGE problem here in and around Philadelphia with private ambulance companies engaging in massive Medicare fraud, especially for dialysis patients like Geri. They're getting shut down and arrested by the Feds.  Most of the companies are run by shady people, several by Russian expats.  Their equipment and employees are very substandard.  It's scary and a shame.  And it's made things much more difficult for us.  It's actually so far been impossible to find a good private Medicare-approved ambulance company here in Philadelphia.  Anyway, just so you know.  Thanks.  Amy and I are trying very hard and doing a lot for Geri, but we're not really equipped for this.  Hospice does open up a lot of help in terms of people coming to help us at the house pretty much on a daily basis: nurses, social workers, bathers, etc.  We have no idea if Geri has a week, a month, 6
months left.?!  We're always hopeful she'll get better but ...

To Be Continued



Tuesday, February 10, 2015

FRONTLINE "Being Mortal" Dr. Atul Gawande-End of Life, How Teen Faced Fatal Cancer, Life-Threatening Disease Lottery


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


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?


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


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


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?


“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

13:01Doctor 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.







   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
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 

54:00Facing Death11/23/2010
27:26Ebola Outbreak09/09/2014