The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
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
Six Chicago-area faith leaders addressed the importance of end of life decision-making and discussed how their respective beliefs, rituals and traditions impact the process during an event this week at Northwestern University.
Orthodox, Hindu, Islamic, Jewish, Protestant and Roman Catholic perspectives were represented during the panel, hosted by Life Matters Media in collaboration with the Council of Religious Leaders of Metropolitan Chicago. More than 100 attended.
“I can’t think of a time in life in which our own faith beliefs might be more critical than near life’s end,” said LMM President Randi Belisomo, who served as moderator. “Among those for whom faith matters, it is impossible to discuss true end of life preferences without considering the tenants of one’s own religion.”
Perry T. Hamalis, the Cecelia Schneller Mueller Professor of Religion at North Central College, spoke about Orthodox Church teachings on death, something he said is not natural nor intended by God. The Church’s ethical framework exemplifies moral realism, meaning that it centers on God as both creator and redeemer of humanity.
“Humanity has been created in the image and likeness of God, as persons with intrinsic dignity, and given freedom and called to a life of communion with God, neighbor and all of creation,” Hamalis said. “But the world is broken, as a result of primeval rebellion, or sin, which led to alienation from God, a spiritual death, and ushered in physical death, or mortality. So sin and death are not natural, because they were not intended by God to be part of the original, natural, normative human condition.”
Hamalis said the problem of decline and then death, both physical and spiritual, can be cured only by God. Orthodox Christians believe in the saving mercy and grace from the Holy Trinity.
For adherents, life is viewed as a sacred gift from God, and humans are only stewards of their body.
“We are pro-science, pro-medicine, we venerate many saints who were physicians and involved in health care,” Hamalis added. “We have tremendous respect for human freedom… We also acknowledge the uniqueness of every human person, so counsel and care must be personal.”
The end of life is a time for repentance, confession and communion in preparation for spiritual resurrection, he said. “We are against suicide in all forms, we regard euthanasia as suicide, and we affirm the distinction between killing and letting die,” Hamalis said. “We allow for the withdrawal of life-supporting technology in most circumstances. We support palliative care.” Organ donation may be viewed as a form of philanthropy.
It should be the goal of both family and designated caregivers, according to the Orthodox Church in America, to ensure that the final days of a terminally ill person are spent reasonably free of anxiety, tranquil and aware. Integral to maintaining this type of condition is the administration of proper pain medications.
John J. Hardt, a bioethicist and Vice President for Mission Integration at Loyola University Health System, offered a Roman Catholic perspective on end of life care.
“Our bodies are not our own, but we are to be stewards of that gift. Life is a precious gift, life is sacred. But at the same time, we are all destined to die,” Hardt said. “Life in the Roman Catholic tradition does not have infinite value, it has finite value… The only thing that has infinite value is God.”
When Catholics approach end of life decision-making, they must navigate the gray area of contention between those two poles.
“How do we at once value the sanctity of life and also acknowledge that life is something that will leave us as we know it here,” he added. “We are called to a different life, which makes this life of relative value, but sacred value.”
Concerning contemporary medicine and technology, Catholics should not “throw everything” at a patient to prolong life or seek to hasten death. Hardt said he believes Catholics facing the end of life can find comfort in Jesus Christ’s death and resurrection, as described in the Gospels.
The Church also teaches that effective pain management is a critical component of appropriate end of life care, and Pope Francis recently addressed the importance of palliative medicine– care designed to treat side-effects of both disease and aggressive treatments.
“I therefore welcome your scientific and culture efforts to ensure that palliative care can reach all those who need it,” Pope Francis told an assembly. “I encourage professionals and students to specialize in this type of assistance, which has no less value on account of the fact that it ‘does not save lives.’ Palliative care recognizes something equally important: recognizing the value of the person.”
The Church does not accept that human beings have a right to die and strongly opposes physician-assisted suicide, sometimes known as “Death with Dignity.”
The Rev. Myron McCoy, senior pastor of First United Methodist Church: The Chicago Temple, offered his experiences as both a Protestant minister and an African-American.
“When confronted with end of life considerations, it is ever so important to remember that this is a significant time in persons’ lives and in the lives of practitioners, as they do the hard and sacred work of preparing for death,” McCoy said. “Having just celebrated the life of a member earlier this week… with their decision not to prolong life, I’m readily attuned to the fact that we must do more in pondering questions surrounding end of life care.”
There are no final or clear-cut answers in Protestantism, he said, because every situation, family and patient is different. Protestantism comprises many different Christian denominations with a wide range of beliefs, tracing common origins to the Reformation. However, all mainline Protestant denominations oppose euthanasia, as Christians view life as a gift from God that should not be taken away.
“In my tradition, Protestant and United Methodist, we believe care for the dying is an aspect of our stewardship of the divine gift of life,” he said. “Human interventions and medical technologies are only justified by the help that they can give. Their use requires responsible judgement about life-sustaining treatments that truly support the goals of life and when they have reached their limits.” There is no moral or religious obligation to use them when they only extend the process of dying, and families should have the freedom to stop them.
McCoy highlighted the attitudes of some African-Americans towards end of life care, as African-Americans are far more likely to request aggressive and artificial life-sustaining treatments than other populations. He called for more discussion and education regarding these health care decisions, as patients should not default to aggressive, often futile treatments in the absence of previous discussion. There is a historic distrust between African-Americans and the medical community, due in part to their history of receiving inappropriate, and sometimes harmful, treatments.
Rabbi S. Joseph Ozarowski, rabbinic chaplain with the Jewish Healing Network of Chicago, said that although Judaism has evolved over thousands of years, its teachings remain squarely based on the Torah, also known as the five books of Moses, and oral traditions which have endured over time.
One cannot understand the Torah without oral traditions, he said. Today, the largest movements are Orthodox Judaism, Conservative Judaism and Reform Judaism, a more liberal strand in which some adherents accept physician-assisted suicide and voluntarily stopping eating and drinking (VSED).
“In Judaism, life is a gift from G-d, and we are custodians,” Ozarowski added. “Life has infinite value, but life is finite. Life really is cherished.”
Life should be sustained at all costs, according to traditional Jewish law, and almost any commandment in the Torah can be broken if it involves the saving of a life. Therefore, Jewish law forbids euthanasia and regards it as murder, because every moment of human life is considered equal in value.
However, there is also no commandment to extend death or prolong suffering, which is why proper pain medications or remedies aiming to alleviate suffering “are kosher.” Ozarowski said he often advocates palliative care for patients nearing death.
Dr. Aasim I. Padela, director of the Initiative on Islam and Medicine and an emergency physician at the University of Chicago Medical Center, offered a Sunni Muslim perspective on end of life care. Most Muslims are of two denominations: Sunni (75–90 percent) or Shia (10–20 percent), according to PEW Research Center.
Padela said Muslims seek guidance and moral reasoning from revelation revealed in the Qur’an, believed to the be literal word of Allah, and the Sunnah, recorded sayings of the Prophet Muhammed.
“Moral reasoning, because the Qur’an is considered our revelation, is the only axis we have to any understanding of what God’s will and desire is, particularly about the afterlife,” Padela said. “There is this idea in ethics called theistic subjectivism: that things are right and good because God says they’re right and good… and for Muslims, we must look towards the scriptural source texts to determine what is good and right. What can we tie from the scriptural source texts to sin?”
For example, most Muslims oppose euthanasia and maintain that all human life is sacred, because it is given by Allah. Only Allah chooses how long each person will live (Qurʼan 4:29).
Devout Muslims contend that do-not-resuscitate (DNR) orders represent a soft form of euthanasia– Muslims cannot kill or be complicit in the killing of another, except in the interests of justice. However, it is permissible for doctors to stop trying to prolong life in certain cases in which there is no hope of cure.
Death can have “goodness,” in it, Padela said, because it is essentially a transition of one form of life to another. Unlike other faith traditions, Muslims seek to trust in God’s will, whatever it may be. Suffering and disease should be accepted as part of God’s plan, because humans should not seek a sense of control over their body. “Affairs should be left to God, and be happy with any decree.”
Swami Sharanananda, resident acharya with Chinmaya Mission Chicago, began by offering a meditation and prayer.
He described death as a “rebirth,” because although it is inevitable, it is simply a change from one state of being to another.
“In the Hindu scriptures, life is different from living. The end of life is the end of living,” he said. “There is no death in life, life is continuous. Death is an event in life, not the end. Life is spirit.” Therefore, Americans should not fear death or focus their whole life on avoiding disease or “eating organic foods” just to live longer.
Family and community interconnectedness and karma are other major tenets of Hinduism. Karma creates a system of actions and reactions throughout the soul’s journey through reincarnated lives.
Reincarnation gives great comfort to the dying and to their families, because they trust they will be reborn and into new life. Enduring suffering may lead to spiritual growth and a more fortunate rebirth, but palliative and hospice care are compatible with Hindu values, according to a 2010 article published in the Journal of Hospice and Palliative Nursing. Typically, death should neither be sought nor prolonged.
“Everybody dies, but nobody dies,” he offered. “Death is as holy as birth… to have a good life, one must know what death is. Death is the key to life.”
As millions of baby boomers age and health costs continue to rise, Americans are ready and willing to have open and honest discussions about death and dying, Life Matters Media President Randi Belisomo told a crowd gathered at a Chicago conference exploring end of life care.
“Americans are not talking about end of life issues as much as we should be,” said Belisomo Saturday during “Dying to Know: Life Affirming Conversations About Living and Dying Well,” a day-long event hosted by the Replogle Center for Counseling and Well-Being at Fourth Presbyterian Church. “But through the proliferation of information, education, media and community building, we can begin telling real-life stories about death and dying.”
If Americans become more comfortable with talking about the inevitable, patients nearing death may be more likely to enroll in hospice care and share their end of life care wishes with close family and friends, she said. Just as breast cancer, colon cancer and same-sex marriage were once rarely discussed and considered taboo, a cultural change is now making discourse surrounding mortality more common.
“There is ample evidence of the public’s desire for information,” she said. “Look at The New York Times’ bestseller list;” Belisomo pointed to Being Mortal, by Dr. Atul Gawande, Smoke Gets in Your Eyes, by Caitlin Doughty, and Roz Chast’s Can’t We Talk About Something More Pleasant?
Belisomo opened her speech with her own experiences facing death and terminal cancer. In 2010, her husband, Carlos Hernandez Gomez, died of complications associated with colon cancer. She said the two did not discuss his end of life care preferences.
“Doctors told us his cancer was ‘treatable,’ even though it was incurable. We went full-steam ahead doing whatever we could to elongate whatever time we had left,” she said. “If metastatic cancer is a fight, it’s not fair. If it is a war, it’s not winnable. All of the militaristic language is misleading.”
He continued to receive chemotherapy and other treatments instead of enrolling in a hospice or palliative care program. Belisomo said she did not want to give up hope or take away his own.
“Ours was just one more example of failure to take all the steps we should have taken,” she said. “We didn’t think about how Carlos would do his own dying.”
Months after his death, Belisomo and his oncologist, Dr. Mary F. Mulcahy, were inspired to launch Life Matters Media. She hopes news and information provided by the nonprofit will inspire Americans of all ages to talk about death.
“Stories like mine are not outliers, they are the norm.”
Dying In America
Much of the latter half of her speech was devoted to the Institute of Medicine’s widely circulated report, Dying in America.
The 2014 report cited the present as the best time to normalize conversations about death and dying, as millions of aging baby boomers will soon face difficult end of life care decisions for themselves and for their family members.
“Many Americans don’t know how to bring up end of life conversations. It needs to become the norm to have these conversations with family and doctors,” Belisomo said. “Death is not how it used to be. The stakes are gigantic.”
The IOM’s report also emphasized the urgent need for increased palliative services– medical care that provides pain relief and centers on enhancing the quality of life among the chronically or seriously ill.
A shift towards comfort care could save Medicare billions of dollars over the next decade. Seventy percent of U.S. deaths are paid for by Medicare, and 30 percent of Medicare spending is used on patients in their last year of life.
“Much of that care is unwanted and wasteful and futile in scope,” Belisomo said. “There is an urgent need for health care overhaul. The IOM calls for more person-centered care that minds the needs of patients, families and their values.”
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.
An improv company welcomed an unlikely muse to their latest performance: Death.
The Experts, at Chicago’s iO Theater, allows leaders in a variety of professional fields to dictate each show’s comedic matter. On Thursday evening, performances revolved around terminal illness, artificial nutrition and even a killer monkey to help make end of life conversations more palatable.
“How many of you would choose to die in a hospital, in the intensive care unit maybe hooked up to a breathing machine with tubes and antibiotics? Well, 80 percent of people die in a hospital, many in similar situations,” said Dr. Julie Goldstein, a palliative care physician, clinical ethicist and the night’s featured expert. “Several decades ago, when you had a serious illness you were cured or died. Now, you are managed chronically over a long period of time and slowly deteriorate.”
The somber subject matter did not translate into subdued acting or quiet contemplation. Eight actors used chairs, cartoon voices and over-the-top characters to make death seem like a normal part of life, like a graduation or marriage.
In one outrageous moment, two friends used sign language to ask a monkey named Bubbles how he wished to die– he didn’t know, of course. Another scene involved a man and wife practicing how she would suffocate him with a pillow in case he became critically ill or incapacitated– he made it clear he wished to have sex before death, even if he were unconscious.
Cremains were fair game, too, as one sketch involved a Thanksgiving meal seasoned with grandmother’s ashes, not sage.
The situational humor, which occasionally flew off the rails and conflated the end of life with lack of pleasure, worked best when Goldstein steered the actors back to her prompt: the importance of frank conversation and advance health care planning.
The process of advance care planning– identifying end of life care wishes, communicating those wishes to key loved ones and putting them in the form of an advance directive– is associated with fewer hospitalizations, earlier hospice enrollment and fewer unnecessary and costly medical procedures in the last year of life.
At the end of the brisk 90-minute show, Goldstein handed out Power of Attorney for Health Care documents, as if they were goody bags.
“A good, solid plan is different for different people. What’s appropriate for a healthy adult is much different than what’s appropriate for an individual with a chronic condition and just starting to deteriorate.” Goldstein explained. “You can leave here with a completed form, and I can help you.”
At least a couple people took her up on that offer.
The Experts runs Thursdays at The Mission Theatre in iO. Learn more here
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- Scott Simon On His New Memoir And Tweeting His Mother’s Final Moments
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Daniel Gaitan serves as a content producer...More