Scott Simon On His New Memoir And Tweeting His Mother’s Final Moments
Posted on Saturday, April 11th, 2015 at 7:55 am by lifemediamatters
Veteran journalist and broadcaster Scott Simon is riding a wave a public support and critical acclaim for his new memoir, Unforgettable, the story of his mother’s thunderous life and death.
In July 2013, nearly 1.2 million Twitter users followed his series of tweets sent from a Chicago hospital room in which he provided poignant updates of his mother’s final moments.
Simon, host of NPR’s Weekend Edition, read an excerpt from his book at the Union League Club of Chicago on Thursday. He then spoke with Life Matters Media about his decision to share his mother’s final days with the world and the importance of end of life decision-making.
What inspired you to tweet about your mother’s death?
I don’t remember saying “I’m going to just keep tweeting” so much as it didn’t occur to me to stop. My mother was just so interesting, and it’s not as if she would say something, and I would go “oh, wait, hold on, I’ve got to tweet that.” We would spend hours together, and if she closed her eyes for 20 minutes, I would tweet things she said. It never occurred to me to stop. She was giving a great show, she was putting on the last great performance for our family. I wasn’t aware as to what kind of attention it was attracting until really the last day.
Do you think live-tweeting your mother’s death inspired more Americans, especially young people, to have end of life conversations with their loved ones?
I hear that it’s done that, so it’s not a guess. I’ve heard from a lot of people who say, “Yes, that’s something we had to discuss, and what I read gave me the wherewithal for us to go ahead and talk about these sort of things.”
Do you believe end of life conversations are taboo in America?
I can speak for myself: they’re creepy. Even though it’s utterly obvious and universal, they make you contemplate the fact that you don’t live forever.
I absolutely believe that on the one hand, in some ways, we have to live as if we will live forever. You know, we can’t keep ourselves wrapped in some kind of shroud.
But on the other hand, I think there’s also a lot to be said that because we won’t live forever, we have to make maximum use of each and every moment that we have. This doesn’t have to be morbid, but we just have to recognize the obvious: that at some point we’re going to give out, that the people we love are going to give out, and that ought to inspire us to get maximum use of every second that we have.
Yes, following my mother’s death, my wife and I got that legal work taken care of. Legal work in my case is that whatever my wife says is fine with me. That was important to me. If she decides this is still worth going on, that’s fine. If she decides it’s not, she loves me and I have no reservations about that. And vice-versa.
As a broadcaster, how do feel about the “war-like” language so often used to describe death and disease? For example, it is so common for journalists to write, “He or she lost the battle with cancer.”
I think it’s unfortunate. I understand coming from journalism why we look for a metaphor, and that’s it.
When we tell people to “fight,” I think that’s fair, in that we are telling them to care. But I think it’s also unfortunate, because it suggests that somehow, if you just fight hard enough, you are going to survive, and we know that that’s not true.
I do think it’s possible that people who lose interest in life might die earlier, but on the other hand, I don’t think it follows that if you are afflicted with some kind of terminal disease, merely wanting to live and letting doctors try whatever they want is going to mean that you will live longer. So I think it’s an unfortunate metaphor, and we have to come up with something else.
I’ve said it even though I don’t believe it, just because it has insinuated itself into the language. I’ve been trying to say recently something like “after a long seize of cancer.”
You became emotional during your lecture when you mentioned your mother’s picture on the cover of your book, which is now a New York Times bestseller. How does it feel knowing that her picture is being seen by people across the globe?
It means the mother to whom I personally owe just about everything, and who sacrificed everything for me, is in the position to help other people learn from her experiences.
I’ve already heard from people who’ve told me “your mother has become very important to my life.” I can’t tell you what that means to me. I wish I had words for it, that someone who meant everything to me has become important in many other lives too. It’s a very precious thing, and it makes me glad to share the experience, it makes be glad to share the book.
It makes me very happy that in theory, ten years from now someone can pick up this book and read about my mother and find solace or inspiration.
Read an excerpt of the book here
The Growth Of End Of Life Planning Services
Posted on Wednesday, April 1st, 2015 at 7:08 am by lifemediamatters
Americans just beginning to plan for their end of life care and assemble important medical and legal documents have a multitude of services vying for their business. In recent years, the number of end of life planning services has mushroomed, and tech-savvy entrepreneurs are seeking ways to capitalize on the massive baby boomer population and the shift towards electronic document storage.
One of the newest and simplest services is the LastingMatters Organizer, a planner aiming to be the hub of instruction for loved ones after death. The planner, $20 for the PDF version and $29 for the booklet, prompts users to answer a variety of questions intended to help family members honor their final wishes.
Among the dozens of questions: Who should be notified when you die? What kind of service would you like? Where are the keys to your home? Where are your passwords listed? Who should take care of your pets? Where are your bank accounts? Which family traditions would you like to pass on?
“I wanted to create something that was easy to use, comprehensive in nature and not morbid or morose,” said Barbara Sedoric, founder of LastingMatters. “None of us know when we’re going to die… This really is about helping your loved ones left behind figure out what your life was about and what you really wanted.”
She was inspired to create LastingMatters after the unexpected death of her mother in 2006.
“One morning, I got a call from my brother simply saying ‘mom’s dead.’ My own family was thrown into this chaotic scene of trying to find all the facts and information,” she said. “I liken funeral planning to planning a wedding, only you have three days to do it versus a year.”
After nearly three years of development, Sedoric said she believes her organizer is the most comprehensive option on the market, partly because of its large variety of questions. The organizer is neither a legal document nor advance health care directive. Loved ones should be informed of its existence before death, so they know where to look for it.
“It’s more of a thought provoking organizer,” she added. “It gives no legal advice… a legal document would probably override the organizer.” Sedoric said nearly one thousand LastingMatters organizers have been purchased since May 2014. She plans to create an online application to replace the PDF version that allows users to change preferences over time.
Other notable end of life planning services include Everplans, Final Roadmap, Estate Assist and Five Wishes.
Words Matter: Physician Assisted Suicide Is NOT Physician Aid In Dying
Posted on Thursday, March 26th, 2015 at 10:23 am by lifemediamatters
The classic Hippocratic Oath, translated by Heinrich Von Staden, requires a new physician to swear to the following oath:
And I will use regimens for the benefit of the ill in accordance with my ability and my judgment, but from [what is] to their harm or injustice I will keep [them]. And, I will not give a drug that is deadly to anyone if asked [for it], nor will I suggest the way to such a counsel.
A 1964 translation by Louis Lasagna, Dean of the School of Medicine at Tufts University, rephrases the classic oath to say:
I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism. I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
Physician-assisted suicide is now legal in Oregon, Washington, Vermont, Montana and New Mexico. It is under consideration in 13 other states. Along the way, the terminology has moved from “physician-assisted suicide” (PAS) to “physician aid in dying” (PAD). “Suicide” has traditionally conjured up a vision of premature death prompted by despair, impaired judgment and the like. As a result, several professional organizations have objected to the use of the term “suicide,” articulating that this word does not describe those opting to exert control over their end of life under the laws allowing this deliberate choice.
I argue that the true paradigm for physician aid in dying is palliative care, and that physician-assisted suicide is just that- suicide. Palliative care reflects and delivers on the Hippocratic Oath, among the oldest binding documents in history. For those who are terminally ill, it is “physician aid in dying” in its purest sense. Palliative specialists do not send patients on their way with lethal medication which- if following legal requirements- must be self-administered. Palliative specialists do not ask patients to respond to their condition alone; palliative care is patient-centered and collaborative.
Palliative care is specialized medical care for those with serious illnesses. It focuses on providing patients with relief from symptoms and stress of serious illness, and it is not restricted to those with diagnoses of six months or less to live. Its goal is to improve the quality of life for both the patient and his or her family.
Palliative care includes a multidisciplinary team of doctors, nurses and others who work together with other providers to provide an extra layer of support to meet personal goals and goals of care, assuring that pain is always managed. A patient is not required to forego curative treatments to receive palliative care; palliative services maintain patient autonomy and control over individual destiny but they do not include killing oneself.
Surveys indicate that 91 percent of those opting for assisted suicide do so to gain control; only 30 percent choose this route due to pain. My earlier article, Is Autonomy All We Really Want?, explores “the space between,” the dialogical encounter and the isolating, frightening aspects of autonomy. A high quality palliative care team can mitigate that aloneness by accompanying patients shoulder to shoulder, respecting their autonomy and goals while providing warmth, sympathy and understanding. Not only do patients benefit from a higher quality of life, but physicians stay true their vow to “avoid…traps…of therapeutic nihilism.”
I argue that the true paradigm for physician aid in dying is palliative care, and that physician-assisted suicide is just that- suicide.
Words matter. Physician-assisted suicide is equivalent to the facilitation of killing. There is no other way to characterize the act. Physician aid in dying in the context of palliative care supports the chronically ill and dying in a respectful, professionally honored tradition. As Leon Kass, physician and Hertog Fellow at the American Enterprise Institute, states:
In forswearing the giving of poison when asked for it, the Hippocratic physician rejects the view that patient’s choice for death can make killing him right…the deepest ethical principle restraining the physician’s power is…the dignity and mysterious power of human life itself. A person can choose to be a physician but cannot choose what physicianship means.
Snapshots Of Bobby
Posted on Tuesday, March 3rd, 2015 at 9:11 am by lifemediamatters
By Ellen Rand
Hospice Volunteer, Holy Name Medical Center, Teaneck, NJ
One winter afternoon during my first year as a hospice volunteer, I drove slowly through the kind of neighborhood where the only people you see during the day are landscapers, contractors and housecleaning services and where one house is grander than the next. I was looking for the ranch house where Bobby had been living since his diagnosis.
Most people I visit, as a hospice volunteer, are my senior by 20 years or more, but Bobby was the first person I’d see who was my age. Too close to home, as it were; a reminder that, yes, it can happen to you. Worse, Bobby was in hospice care for ALS (Lou Gehrig’s disease), whose cruel impact I’d last encountered with my aunt 15 years earlier.
Heavy and pear-shaped, with a full head of gray-white hair and lopsided glasses, Bobby sat in one of three wheelchairs positioned side by side in a dark, silent and cluttered family room that felt like a cave and greeted me with a wan handshake. That first conversation was tentative, as awkward as a blind date.
Before I left, he said, “There’s no hope. And all I want is a cure.”
I felt that I couldn’t leave without responding; that he needed his fear and despair acknowledged.
“Well, there’s a different kind of hope,” I said. But even though this is what I truly believe — that there can be hope for good days, for good companionship, for the comfort of being with friends or family, for seeing another season — my words sounded hollow even to me.
In the course of a few months, it became clear that we had virtually nothing in common. But he did tell me about what he used to love to do: rollerblading, driving, going to Central Park. He brightened only in talking about his three German shepherds that he missed so much, who remained in his house in a nearby town, cared for by his girlfriend Jenny.
“Can’t the dogs stay here? Or visit?” I asked. He looked at me as if I’d asked if he could leap out of the chair and fly away.
“No,” he said. “My brother hates dogs.”
One time I rooted around my basement to find a checkers set because the week before Bobby had told me that he liked playing checkers. I won the first game we played. By the time we played the second, he didn’t have the strength to move his own pieces, but indicated to me where they should go. He won that game, which annoyed me no end.
“Two out of three?” I asked, my competitive streak raising its sly little head. But he was too tired.
Another time, when his voice was giving out, I told him I could play some music on my iPhone with the Pandora music app.
“Can you get Johnny Cash?” he asked. And I did, cranking up the volume. We sat in companionable silence, me on the couch in the family room, Bobby in one of the wheelchairs, as Johnny croaked about Folsom Prison and being caught in a ring of fire.
Bobby was released from his own prison in early May that year. I learned about it via a short email from our Volunteer Coordinator, chronicling his fatal breathing problems. It was a shock, partly because I had seen him just a few days before that. I’d left earlier than I normally would have then, when a friend showed up, presenting Bobby with a large, detailed drawing of his three dogs. I wanted to give them a little time together. And fully expected to see him the following week.
In hospice volunteer training, we’d talked about the Big Questions that people often focus on close to the end, if they’re blessed with a clear, conscious mind: What did my life mean?Why was I here? What was my purpose? What’s my legacy? And despite ample evidence to the contrary, I believe in the possibility of resolution and reconciliation and redemption. But for Bobby there was none of that.
I thought about how he left the world, in anxiety and fear, with many regrets. Was I of any comfort at all? I was a visitor, who played some checkers, played some music, told some jokes and listened to him expressing his sorrow and anger without telling him that everything was going to be OK.
Ellen Rand is a hospice volunteer with Holy Name Medical Center in Teaneck, NJ and visits people in their homes, nursing homes and assisted living facilities throughout Bergen County, NJ. She has been a reporter and writer for more than 40 years, including a five-year stint as a weekly housing columnist for The New York Times. This piece is adapted from a book she is writing about end-of-life issues, whose working title is “Endings: Finding Hope and Comfort Through the Close of Life.”
Delightful Dysfunction in Death and Dying: Larry David’s Fish in the Dark
Posted on Sunday, March 1st, 2015 at 9:19 am by lifemediamatters
No subject has ever been off-limits for Larry David, who has spent a career in comedy saying exactly what he thinks- even it happens to offend African-Americans, poke fun at Parkinson’s patients or expose the awkwardness of accepted social norms.
Somehow, his observational humor always hits big, and it does so again in Broadway’s most popular show, Fish in the Dark. The creator of Seinfeld and Curb Your Enthusiasm is making his first appearance on stage, shattering any assumption that we’re not supposed to laugh about death and dying.
Officially opening March 5th, David’s newest work has sparked more than $14.5 million in advanced ticket sales. Fans eager to experience this end of life expose are finding seats at Cort Theatre difficult to come by, as only a few hundred tickets remain for the estimated 110 shows scheduled through June 7th.
For those who have ever considered the comedic elements of illness, intensive care and the intra-family dynamics that often accompany the dying process- this show is for you.
“Oh my God, who’s dead!”
Those are the first words of the curmudgeonly pessimistic Norman Drexel- played by David and hardly a stretch- in response to the three a.m. phone call we all dread.
Sure enough, the call did come from the hospital; it was regarding Drexel’s father. But he wasn’t dead just yet. Getting there, however.
Since no decisions would be made about his care until the doctor’s visit in the morning, Drexel asks the logical question to a full house of laughter and nods: “Then how does waking up at three a.m. do anything?” He then goes back to sleep.
He arrives at the hospital later, only to wait. And wait. He soon greets his brother, Arthur, who arrives with a statuesque and buxom blonde.
“His father’s dying, and he’s bringing a date?” Drexel asks his wife, Brenda, played by Rita Wilson.
He then turns to Arthur, played by Ben Shenkman, to point out the practical: “This is wildly inappropriate. I hate to inform you, but the deathbed is not a good place to introduce new people.”
The introduction turned out to be welcomed by their father, who is spotted touching the girlfriend’s breasts and thigh. She doesn’t seem to mind, at all. He is a dying man, and she’s delighted to ease his exit.
When the time comes for making medical decisions, Norman and Arthur realize they never had the discussions that the majority of Americans do not. They never learned their father’s end of life care preferences.
“The ventilator would keep him alive, but he would never recover,” the doctor tells them, instructing them to ask their father whether or not he would like to continue the intensive medical treatment.
When the brothers ask the doctor what he would do if they were not there, he says he would ask the patient himself. “Well, we’ll go get a bite, and you’ll have your ventilator talk,” Norman says desperately, hoping to avoid the uncomfortable encounter.
That’s just the first act.
The family dynamics from then on devolve, as neither brother knows exactly to whom their father was speaking when he uttered his last words: “Take care of your mother, I do not what her to live alone!”
If the overbearing, outspoken matriarch, Gloria, were to move in with Norman, his marriage with Brenda would be unquestionably jeopardized. However, Arthur won’t consider the possibility of his mother as roommate. His excuse: he just can’t.
Norman wonders why his father’s wishes are only voiced in his last breaths, and even then, they’re not too clear.
While the details of dying prove difficult for the Drexels, they are delicious for the audience, as we all see our own family eccentricities within this messy Jewish family with a Puerto Rican maid, Fabiana, played by Rosie Perez. While the Drexels do just about the antithesis of everything that could enable an enriching and peaceful end of life experience for their family, they do so to our delight. David’s sharp observations about this universality prove, once again, educational. Don’t do it like the Drexels did.
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