SUMMARY: There will be some advantages to non-beingness, says Sheila Nevins, namely, avoiding the family squabbles after her death. The author and former president of HBO Documentary Films offers her humble opinion on preparing for the end of life, and finding the greatest pleasure is still a big ice cream sundae.
SUMMARY: By age 36, neurosurgeon Paul Kalanithi had earned five degrees across various fields and was at the end of a residency at Stanford. Then he was diagnosed with lung cancer, a disease that killed him 22 months later. Facing death, he wrote “When Breath Becomes Air,” a memoir of his search for meaning in his last days. His widow, Lucy Kalanithi, joins Jeffrey Brown to discuss the book.
JUDY WOODRUFF(NewsHour): What makes a life worth living? What gives it meaning? And how does that change when the time one has left collapses? These are some of the profound questions taken up in a new memoir by a doctor who suddenly faced his own mortality.
Jeffrey Brown has our newest addition to the "NewsHour Bookshelf."
JEFFREY BROWN (NewsHour): As a neurosurgeon, Paul Kalanithi was used to dealing with life-and-death issues. He was, by his own account, a driven man who studied literature and philosophy before turning to medicine, earning five degrees along the way.
He was near completion of a rigorous residency at Stanford when, at age 36, he got a diagnosis of lung cancer.
DR. PAUL KALANITHI, Author, “When Breath Becomes Air”: Five years down the line, I don’t know what I will be doing. I may be dead. I may not be.
JEFFREY BROWN: He would live just 22 months more, and in that time have a child with his wife, Lucy, and write an indelible memoir, “When Breath Becomes Air.”
JUDY WOODRUFF (NewsHour): How we choose to deal with the end of life and the decisions patients and families face are difficult subjects that are often hard to discuss. But there are moments when they capture headlines and spark a national conversation.
We have recently heard from a number of voices grappling with these tough questions.
Tonight, Jeffrey Brown looks at a high-profile case in the Northwest.
BRITTANY MAYNARD: I can’t even tell you the amount of relief that it provides me to know that I don’t have to die the way that it’s been described to me that my brain tumor would take me on its own.
JEFFREY BROWN (NewsHour): Brittany Maynard’s video has thrust the issue of end of life decisions back into the national spotlight.
The 29-year-old has terminal brain cancer, and, last spring, doctors gave her six months to live. Instead, she’s decided to die on her own terms, November 1.
BRITTANY MAYNARD: I hope to enjoy however many days I have left.
JEFFREY BROWN: And her online video has been viewed more than seven million times since last week.
BRITTANY MAYNARD: I will die upstairs in my bedroom that I share with my husband, with my mother and my husband by my side, and pass peacefully with some music that I like in the background.
JEFFREY BROWN: Maynard and her husband moved from California to Oregon to utilize the state’s death with dignity law. It allows her to take lethal medication prescribed by a doctor.
The Oregon law, which calls this aid in dying, has been around since 1997, and since then, more than 750 people have used it to end their lives. All told, only Oregon, Washington and Vermont have laws allowing the practice that’s sometimes referred to as doctor-assisted suicide.
Court decisions in Montana and New Mexico have also authorized it, but those rulings have not yet been codified into law. The nonprofit group that posted Maynard’s video, Compassion & Choices, is working to expand the option of death with dignity in more states.
Maynard’s husband and other relatives also appear on the video supporting that right.
GWEN IFILL (NewsHour): Finally tonight: deciding what’s important, and preparing for the inevitable, a conversation about the end of life.
Jeffrey Brown has that.
JEFFREY BROWN (NewsHour): “I learned about a lot of things in medical school, but mortality wasn’t one of them,” words written by a surgeon, but if you take out the reference to medical school, probably true of most of us. We might learn to live. Few of us learn to die.
That is the subject of a new book titled “Being Mortal.” And the aforementioned surgeon is also the author, Atul Gawande.
And welcome to you.
DR. ATUL GAWANDE, Author, “Being Mortal: Medicine and What Matters in the End: Thank you.
JEFFREY BROWN: There are two facts of life you seem to focus on. One is that, yes, we all age and die, and the other is that we don’t seem to understand it very well.
DR. ATUL GAWANDE: No.
Medicine has taken over mortality in some sense. We are responsible more and more for trying to fix the problems of aging and dying. But we don’t know how to do it. And I think the thing that I discovered was, we have a fundamental failure. We don’t recognize that people have priorities besides just living longer.
JEFFREY BROWN: Why do we not understand that, I mean, that we want to live longer, but we want to live longer in a certain way with certain values and beliefs?
DR. ATUL GAWANDE: Yes, I think you’re exactly right.
Some people will say it’s really important to me that my brain work, that I am who I am. Other people will say, look, I just want to know that I’m not suffering and that I’m not in pain. Others will say, I have a life project that’s really important to me.
And the fact that we in medicine, we prioritize health, safety, and survival. We think that that must be what people place first. But, in fact, we make choices all the time in our own homes about risks we take.
And one of the consequences is that, in medicine, as we face problems we can’t fix, like aging or a terminal illness, we often sacrifice the very reasons that people want to be alive.
JUDY WOODRUFF (NewsHour): We have partnered with Inewsource, a San Diego-based journalism nonprofit, to take us inside special nursing home units where thousands of people live on life support. The state spends millions of dollars on this type of care designed to preserve life at all costs. Families often have high hopes for their loved ones to recover, but few ever will.
Inewsource reporter Joanne Faryon reports on the impossible choice facing those families, when to let go.
STEVE SIMMONS: Your husband. Your husband. You know me. You know me.
JOANNE FARYON, Inewsource: Steve Simmons spends most evenings by his wife’s bedside.
STEVE SIMMONS: Does that hurt? Does that hurt your ear?
JOANNE FARYON: Rafaela Simmons is severely brain injured.
STEVE SIMMONS: Squeeze my hand. Squeeze my hand if you love me.
JOANNE FARYON: She has a feeding tube in her abdomen, a tracheotomy tube in her throat. She is unable to walk or talk or respond to the world around her.
STEVE SIMMONS: Squeeze my hand. Squeeze my hand.
JOANNE FARYON: She has lived in this nursing home for the past four years.
STEVE SIMMONS: You can do it. Squeeze my hand.
JOANNE FARYON: Rafaela is one of the 4,000 people living in units like this in California. On the books, they’re called subacute units, but among some doctors, they’re known as vent farms, because so many of the people who live here need ventilators just to breathe.
The average age of these residents is 56. But there are units devoted just to children. They’re the end of the line, the place people go once medicine has saved them, but where there is little hope for recovery.
Ed Kirkpatrick is the director of the Villa Coronado Nursing Home in San Diego County.
ED KIRKPATRICK, Director, Villa Coronado Nursing Home: The drive in the system is to be able to repair and fix anything. And that’s a good thing. That’s a good thing. We want that to happen. At what point, though, does it become futile?
