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.
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
Medical students caring for the terminally ill must learn to be both sensitive and resilient to cope with workplace stress and provide comfort to patients and their families, said a bioethicist to a crowd this week at the University of Chicago’s MacLean Center for Clinical Medical Ethics.
“Being present to patients and families is a complex skill of being personally engaged, available and open to particular needs,” said Mark Kuczewski, director of the Neiswanger Institute for Bioethics and Health Policy at Loyola University Chicago. “There is a struggle to be desensitized enough to do one’s work, but sensitive enough to deal with the particular patient and family.”
Kuczewski, in collaboration with other end of life care experts, asked 68 students completing clinical clerkships to reflect and write about their experiences caring for dying patients. Researchers then mined answers for common themes.
Many students noted a lack of discussion about care options for patients approaching death, Kuczewski said, because clinicians were too immersed in details of immediate treatments.
Not once did my team mention or consider that Ms. W was in the process of dying. I did not hear any talk about end of life care, so I didn’t think it was necessary to talk about this with the family. I spent a lot of time with them (the family) answering questions…She (patient’s sister) was very suspicious and felt like she was not getting the whole story. I don’t think she did get the whole story either.
Other students said they were shocked by the suddenness of death and lack of acknowledgement by nurses and attending physicians.
I didn’t even get a chance to say goodbye to the family. Before I even realized what had happened, the family was gone, the patient removed from the list and my next patient waiting for me to take care of them. The team didn’t make any comments about her death that morning, and everything seemed to continue and move on as if nothing had happened…I initially did not know what I wish had happened, but the way the situation ended lacked any closure for me.
Kuczewski identified common “pledges” from students from which veteran clinicians could benefit. The most common commitment: to remain aware of and sensitive to the needs of families, and not allow needs to go unaddressed.
All I can do is take from this experience and move forward by being there for others when the time comes.
I will never let that be OK again.
The second most common pledge was to refer families to pastoral care.
If I am not available to be present with those grieving, I will make sure that other qualified people are, so these people are not alone.
On a couple of different occasions the family asked me if I would join them in a quick word of prayer when I came to check in on the patient. Through these moments I completely forgot that I was in the medical profession, and I became connected and a part of this family and the grieving and emotional process.
The study, published in the medical journal Academic Medicine, calls for teaching institutions to standardize team protocols to help students formally recognize and process patient deaths.
“Something akin to a spiritual ‘time out’ procedure after a patient dies might be an efficient yet effective way to acknowledge death,” researchers write.
It also calls on educators to find ways to support students in their wish to remain connected to dying patients and their families.
“Most immediately, students need support in developing habits of action conducive to their stated goals,” they write. “Encouraging students to follow dying patients who have rotated off their service, allowing students to offer their pager number and physical presence to dying patients and other like behaviors should be recognized as ’best practices’ among faculty.”
A new video and website explore Roman Catholic teachings on end of life decision-making.
The New York State Catholic Conference produced Now and at the Hour of Our Death and its companion website to serve as an online education resource for Catholics across the U.S. The eight-minute video focuses on seriously ill patients and their families as they learn to accept the inevitability of death and stop aggressive, often expensive, curative treatments that are often futile.
“Outside of moral evils like assisted suicide or euthanasia, Catholic Church teachings regarding the end of life are not black and white; rather they are shades of gray,” Kathleen M. Gallagher, director of Pro-Life Activities for the New York State Catholic Conference, said in a statement. “There is no one-size-fits-all response. Each case is different. What the video and website attempt to do is, not so much give answers, but help Catholics to ask the right questions.”
The video was created by Blackfriars Media, a New York City production company associated with the Dominican Fathers Province of St. Joseph. Much of it focuses on executive producer Father Gabriel Gillen and his advice for dying Catholics.
“When I go to hospitals and speak with patients, so often I have to reassure them that a time can come when they will discern that the medical interventions that are sustaining them in life will become morally optional and can therefore be withdrawn or refused,” he states. “A lot of people assume that certain treatments are always morally obligatory. It’s not easy to categorize medical treatments as always morally obligatory or always morally optional. Each case is unique.”
Increased medical costs, inconvenience and disease stage make it morally permissible, Gillen says, for some dying patients to stop curative therapies and enroll in a palliative or hospice care program.
Palliative medicine aims to help comfort terminally ill patients when there are no more “helpful” curative treatments available, said Sister Marie Edward Deutsch, a registered nurse. “We support (patients) physically as much as we possibly can. When they start receiving excellent care, they are comforted and some of their anxieties diminish.”
Robert Gilligan, executive director of the Catholic Conference of Illinois, said he applauds the New York Conference for focusing resources on such a difficult issue. “This is a very serious topic, and any serious attempt by the Church to tackle this issue should be welcomed.”
Gilligan said his conference is creating documents that highligh the importance of advance health care directives. An Illinois advance directive with a Catholic perspective is also in the works; it is planned for release later this year.
“We have been working on this initiative for a long time,” he told Life Matters Media. “It’s going through final comments and is being reviewed by the appropriate people. It’s coming from a team of ethicists, lawyers and hospital officials familiar with end of life issues.”
An advance health care directive may take the form of a living will, power of attorney or the Five Wishes collection. The overall purpose of such forms is to ensure one’s end of life wishes are carried through in case of illness or incapacity.
Kim Wadas, associate director of education and health care with the Wisconsin Catholic Conference, said it is not unusual for the Church to address such a taboo issue, partly because it has a long history of providing health care.
“Some of this nation’s first health care institutions were Catholic institutions. A lot of our religious orders have been traditionally active in health care institutions,” she told LMM. “Having experience has also given us an opportunity to think and reflect on things like pain management and artificial nutrition.”
- Advance Care Planning
- Hospice and Palliative Care
- Life Choices
- Politics and Law
- Society and Culture
- Treatments and Illness
- Health Care
- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- Snapshots Of Bobby
- LMM President Randi Belisomo: “America Is Ready To Talk About Death”
- Delightful Dysfunction in Death and Dying: Larry David’s Fish in the Dark
- Chicago Improv Group Laughs At Death
- Reflections Of Med Students Upon First Patient Deaths Prove Valuable To Experienced Clinicians
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Daniel Gaitan serves as a content producer...More