Raging Against The Dying Of The Light

Raging Against The Dying Of The Light

Posted on Saturday, May 16th, 2015 at 10:11 am by lifemediamatters

When do we die?

The legal and medical answer is when we experience loss of all brain function, or when cardiopulmonary activity stops. The biological answer, however, is when we lose our ability for integrated function— enough parts have ceased to function so that we cannot be put back together. The moment we call “death” is quite arbitrary.

I am now in the second half of the academic quarter, teaching the course Death & Dying. Students have learned about the causes of death, diagnosing death, the biological process of bodily decay and autopsy. We have discussed advance directives, palliative care, hospice, funeral practices, grief and cross-cultural perspectives on these subjects. The most interesting idea that I have learned through leading this course is that “death” and “dying” are distinct things.

Frame from Showtime's "Happyish."

Frame from Showtime’s “Happyish.”

Yes, “death” is about biology. But “dying” is about the social process of preparing to leave this world and enter another (real or imagined). In

The Social History of Dying, sociologist Allan Kellehear presents the relationship between death and dying throughout history. He begins in the Stone Age, a time when death was common at all ages. Most rituals, taking place after a death, were intended to ensure that the soul traveled to the afterlife, a journey requiring assistance from the living.

Currently, however, dying starts before death— we create wills and living trusts, for example. We move the old or sick to hospitals and long-term care facilities. Kellehear quotes those in these facilities, and though they may be in fair health– they say they feel as if they were supposed to have begun the journey toward death. Death is viewed as something to get through, a stigma about which to be embarrassed. We set it aside where people do not have to view it.

The moment we call “death” is quite arbitrary.

I read the recently published Women in Late Life: Critical Perspectives on Gender and Aging by Martha Holstein. The author argues that traditional social roles of older females are ageist and sexist— viewed either as (1) young women trapped in old bodies or (2) frail and needing protection and coddling. According to Holstein, our society has made efforts to demonize the notion of “old.”

A new program on Showtime, Happyish, follows a 44-year-old who suddenly finds himself outdated when 20-something hipsters shake things up at his advertising agency. The hipsters want to retire long-held icons and choose clients by work they feel like doing, rather than work for which companies will pay. In Happyish, newer is better, younger is more innovative, and anyone older than 40 needs to get out of the way.

As a long-time improviser, I was recently surprised by a show in which request suggestions were for things from ancient history— the 1990s. Those on stage were young children during that decade. Though I was in graduate school and likely missed a great deal of pop culture, the bands, shows and nostalgic references were like a foreign language. Have I become “old”? I first felt that way at 35, when I presented students the classic deontology thought exercise, “The KGB is knocking on your door…” When I asked if there were any questions, a student asked, “Yeah, what’s the KGB?”

Even in the few years since Kellehear published his book, “dying” has come to resemble a period like our own late 30s- when cultural references become outdated, when advertisers no longer crave our business, when we realize that hip fashions now look terrible on us.

In a society so focused on youth, aging comes quickly– even when life is not yet half-done. What are we to do when we are no longer the apple of marketers’ eyes? We start dying. We notice that our bodies do not allow us to be active in the same ways. We eat less, move more and still gain weight. We hold on tightly to our jobs because some younger person is moving up the ranks fast. We complete advance directives, write a will, and spend Friday nights at home exhausted, rather than at the latest fashionable restaurant.

Watching my parents in their golden years, I see them as healthy- but they have decided certain things are no longer for them. Each trip overseas is the “last one.” They look for a smaller place to live and beg their children to unload them of their possessions. They purchase pre-paid funeral plans and live in a “forever condo.” Even when there is seemingly nothing wrong, they travel from doctor to doctor every week– just to be sure.

In an evolutionary sense, “dying” has moved from what the community once did for us after biological death, to what we individually spend half our lives doing– often forced by a society that values only the young.

I teach my students that we learn about death so that we know how to live. This week, they wrote their own obituaries. In their narratives, they could choose any age and reason for death. This exercise, they said, made them realize how they want to spend their time.

The creeping of dying to an earlier and earlier age is not productive, it simply ignores those of us still active, productive and wise. Studying death and dying helps us to embrace life. But living in a culture of dying means that those in middle age and older are viewed as irrelevant.

As Holstein suggests, the project we face is how to re-envision age: “The task is nothing short of reconstructing old age.” Being old means living a different kind of “good life,” not sitting around waiting for death.


Dementia To Test U.S. Health System, Experts Warn

Posted on Thursday, April 23rd, 2015 at 8:01 am by lifemediamatters

Seriously ill patients suffering from dementia will test the strength and resilience of the American health care system, experts warn.

It is estimated that every 67 seconds, someone in the U.S. becomes diagnosed with dementia. The population is expected to increase dramatically as millions of baby boomers age.

“This is an important population. In 2000, it was 4.5 million, by 2050, it’s estimated 16 million Americans will have dementia. Median survival from diagnosis is three to six years,” said Dr. Joan Teno, associate director of the Center for Gerontology and Health Care Research at Brown University Medical School, who addressed a crowd at the University of Chicago’s MacLean Center for Clinical Medical Ethics this month.

Dr. Joan M. Teno

Dr. Joan M. Teno

“A lot of what dementia involves is custodial care, it’s a taxing thing, we call it the 36-hour day, because of how much caregivers have to do in caring for this population,” Teno said.

Decline occurs rapidly among patients with severe symptoms, because they are often bed-bound, have difficulty swallowing and eating, and suffer other serious complications, like painful ulcers.

It is also common, Teno said, for patients suffering from severe dementia to transition to multiple  care settings in the last years of life and receive unwanted, often costly, medical interventions.

“I think that this pattern of health care, where we are always moving patients in-and-out of the hospital is potentially creating harm,” Teno said. “It leads to higher rates of getting feeding tubes and higher rates of late referral to hospice.”

Hospice care is designed to comfort dying patients in their last months of life.

Exploring costs of dementia

Comparison of a normal aged brain (left) and the brain of a person with Alzheimer's (right). Differential characteristics are pointed out. Courtesy WikiMedia Commons.

Comparison of a normal aged brain (left) and the brain of a person with Alzheimer’s (right). Differential characteristics are pointed out. Courtesy WikiMedia Commons.

One of the most comprehensive studies on the costs of dementia determined that the debilitating and progressive disease is more expensive than heart disease and cancer, costing society and families around $200 billion a year. The costs of dementia-related care and the number of people with it will more than double by 2040, according to a widely circulated 2013 study published in The New England Journal of Medicine.

Researchers, supported by the RAND Corporation, determined that dementia leads to total annual costs of $41,000 to $56,000 per case in the U.S., totaling up to $215 billion in 2010.

More troubling were calculations that estimate that the aging population will lead to an increase of almost 80 percent in total costs by 2040.

The National Institutes of Health (NIH) defines dementia as the loss of cognitive functioning— thinking, remembering and reasoning— and behavioral abilities to such an extent that it interferes with a person’s daily life and activities. Many conditions and diseases cause dementia, but the most common cause in older adults is Alzheimer’s disease.

Most dementia-related costs stem from long-term institutional and home-based care, not medical care, partly because there is no cure. Nursing home, formal and informal care account for up to 80 percent of the costs.


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

Scott Simon

Scott Simon

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.

unforgettable-coverHave you made your end of life care wishes known in the form of an advance health care directive?

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.

Barbara Sedoric. photo by Jodie Andruskevich

Barbara Sedoric. photo by Jodie Andruskevich

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.

lm_medium“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.

A 12th-century Byzantine manuscript of the Oath. Courtesy WikiMedia Commons

A 12th-century Byzantine manuscript of the Oath. Courtesy WikiMedia Commons

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.