Poop, Death And Other Health Taboos From IDEO’s Paul Bennett

Poop, Death And Other Health Taboos From IDEO’s Paul Bennett

Posted on Sunday, May 31st, 2015 at 9:29 am by lifemediamatters

By Randi Belisomo

Poop. Hair removal. Amputation. Skin lesions. Erectile Dysfunction. Death.

Those are some of the few taboos remaining in health care, according to Paul Bennett, chief creative officer of the global design company IDEO.

Paul Bennett

Paul Bennett, IDEO

The San Francisco-based Brit has made a career by chipping away at some of the stigma surrounding several on such a list– encouraging colon cancer screenings through educational product design and removing visible signs of handicap from the homes of amputees. Now, Bennett is attempting to take away taboo from the condition he jokes as having “100 percent market penetration”: death.

The designer, now associated with the widely-praised and sensory-engaging Zen Hospice Project, recently addressed a group of health technology entrepreneurs at MATTER, a shared-office hub in Chicago’s Merchandise Mart.

“It’s one of the biggest taboos to stare down and design for,” Bennett said, sharing that the inspiration for his newest interest was his father’s end of life experience. He died 13 years ago from bone cancer.

“He was obsessed with maintaining his dignity, and he said ‘if I can’t wipe my own ass, turn me off please.’” Bennett’s father asked family members not to visit in his last days, as he did not want to be remembered in such ill health. “He was being a designer, trying to design the one thing he had left– his death,” Bennett said.

Bennett also recognized that this death could have been easier, and less traumatic for his mother. That experience is one from which he said she will recover. Bennett knew then that his father’s death should not have had to be that way.

Zen Hospice Project

Zen Hospice Project

In the years since, however, a remarkable shift has occurred. “Media is suddenly making death a very hot topic,” he said. “All of the sudden, we’re asking ‘who was I, who am I, and what will I be?” It’s the responsibility of our culture and social development to help others answer those questions.

Bennett urged those with the talent to do so have an obligation to help make this reality of death look something like each individual’s life. However, if dying remains so taboo, most will remain uncomfortable in both learning and sharing what an ideal end of life experience would mean to them.

Bennett offered the following advice to physicians and other care providers discussing end of life issues with patients, for businesspeople working in death-related fields and for family members facilitating important conversations about the topic.

Principles in Potentially Taboo Spaces:

1) Confront your own bias 

– One man’s taboo is another man’s normal

– What is taboo is context-specific and it changes with the times

2) Expose and normalize

Listen acutely to what is being said and not said

3) Be vulnerable 

Where am I?  

-Can I change my viewpoint?

4) Embrace the emotional

How do people feel here?

-How do they feel about their feelings?

5) Use humor

How do I lighten the heaviness?

-How do I create a safe space to laugh?

6) Meet people where they are

How do I engage people in ways they are ready to take in?

-How do I help them take small bites? 

Katy Butler: Patients Can Experience A “Good” Death

Posted on Friday, June 20th, 2014 at 6:24 pm by lifemediamatters

Award-winning journalist and bestselling memoirist Katy Butler wants more Americans to plan for and experience a “good” death.

Katy Butler fields questions from audience members

Katy Butler fields questions from audience members

Butler, author of Knocking on Heaven’s Door, spoke about the importance of open and honest communication between patients, families and doctors Thursday at Loyola University-Chicago.

“We live in a culture that doesn’t want to talk about death at all,” Butler told the crowd of patients, medical students and activists. “We need to start getting braver and more honest about it.”

After witnessing her father’s aggressive, and often unnecessary, end of life treatments, Butler vowed to help ensure that her mother would experience a more peaceful death. At 79, her father, Jeffrey, suffered a severe stroke. As his condition worsened, doctors outfitted him with a pacemaker, a procedure Butler said artificially prolonged his slide into dementia.

KnockingOnHeaven'sDoorShe devotes a portion of her memoir to her mother’s struggle.

“On the phone with my brothers and me that winter, she cried. She loved my father. She’d vowed to be with him in sickness and in health, she told us— and who was she to think they’d escape the sickness part? He’d taken care of her for 50 years, and now it was her turn. But in ways we were only beginning to fathom, my father was no longer her husband, and she was no longer his wife,” she writes. “At 77, she had become one of 29 million unpaid, politically powerless and culturally invisible family caregivers— 9 percent of the United States population— who help take care of someone over 74.”

Her mother, Valerie, would later die in a quiet hospital room in Connecticut. She was fully conscious until the end, and she was not “plugged into machines” in the intensive care unit.

“Both my parents lived really good lives, and they hoped to die really good deaths. One of them succeeded, one of them failed,” she said. “Think about what is a good death for you. How would you like to die? Whatever the good death means to you, we all share something in common: we live in a country that doesn’t want to talk about death.”

According to Butler, advances in modern medical technologies coupled with a medical system that rewards doctors for providing more treatments have helped make death and dying taboo.

“Can you imagine the title of the bestselling book from 1451? Translated into all the European languages, the Ars Moriendi, or The Art of Dying, was a script for the death bed,” she said. “It’s full of very understandable, human illustrations … the most important person in these illustrations is the person dying, and their state of mind. Death is depicted as a very spiritual and important event.”

Today, about 20 percent of seriously ill Americans die in the intensive care unit, and 30 percent cycle through it in the last month of life.

“The problem did not start three days before the family showed up in the intensive care unit. The problem started five to 10 years before,” she added. “We’ve got to start talking about this in a much more subtle, nuanced way much earlier.”

Sheryl Brown, a clinical coordinator for the intensive care unit with Northshore University HealthSystem in Evanston, Ill., said she was inspired by Butler’s presentation.

“I think that she brings that personal experience that has so much weight. When people talk academically about matters of death and dying, it doesn’t touch the human soul,” she said. “A sense of passion about this will move us forward.”

Alyssa Foll, a chaplain with Adventist Midwest Health, said she believes conversations about end of life-related issues are taboo. “Like the Victorians in England avoided sex, we avoid end of life conversations,” she said. “I think we live in a youth-obsessed culture, but we also rely on technology. People think technology will save them and prolong their lives, but it won’t.”

Is Death The Enemy?

Posted on Saturday, August 3rd, 2013 at 7:58 am by lifemediamatters

In the end, the marginal status our culture assigns to the end of life- with all its fear, anxiety, isolation and anger- is inevitably what each of us will inherit in our dying days if we don’t help change this unfortunate paradigm.

For many of my healing and helping professional colleagues, death is the enemy. That doesn’t come as much of a surprise, really. Most everything in our training, as well as most everything in our culture, underscores this mindset. However, that truism may actually be counterproductive more often than we realize. I am of the mind that if we encounter our mortality in an upfront way, we will likely be more compassionate toward our patients, clients, friends and family members as they face theirs.

Image: Jacques-Louis David's 'The Death of Socrates' via WikiMedia Commons and Metropolitan Museum of Art

Image: Jacques-Louis David’s ‘The Death of Socrates’ via WikiMedia Commons and Metropolitan Museum of Art

The following are some things we might want to consider if encountering our mortality is our goal.

First, death is not only a universal biological fact of life, part of the round of nature; it is also a necessary part of what it means to be human. Everything that we value about life and living — its novelties, challenges, opportunities for development — would be impossible without death as the defining boundary.

While it may be easier to accept death in the abstract, it is often more difficult to accept the specifics of our own death. Why must I die like this- with this disfigurement, with this pain? Why must I die so young? Why must I die before completing my life’s work or before providing adequately for the ones I love?

Living a good death begins the moment we accept our mortality as part of who we are. We have had to integrate other aspects of ourselves into our daily lives – our gender, racial background and cultural heritage, to name a few. Why not our mortality? Putting death in its proper perspective will help us appreciate life in a new way. Facing our mortality allows us to achieve a greater sense of balance and purpose in our lives as well.

Dying can be a time of extraordinary alertness, concentration and emotional intensity. It is possible to use the natural intensity and emotion of this final season to make it the culminating stage of our personal growth. Imagine if we could help those that are sick, elder, and dying around us to tap into this intensity. Imagine if we had this kind of confidence about our own mortality.

Healing and helping professionals can help pioneer new standards of a good death that patients and clients can emulate. We are in a unique position to help others desensitize death and dying. Most importantly, we would be able to support our patients and clients, as well as those they love, as they prepare for their deaths. We could even join them as they begin their anticipatory grieving process.

If we face our mortality head-on and project ourselves to the end of our own lives, we would better understand others as they negotiate pain management, choose the appropriate care for the final stages of their dying, put their affairs in order, prepare rituals of transition, as well as learn how to say goodbye and impart blessings.

Facing our mortality may even allow us to help others learn to heed the promptings of their minds and bodies, allowing them to move from a struggle against dying to acceptance and acquiescence.

In the end, the marginal status our culture assigns to the end of life- with all its fear, anxiety, isolation and anger- is inevitably what each of us will inherit in our dying days if we don’t help change this unfortunate paradigm.

‘The Quality of Life': End Of Life On stage

Posted on Tuesday, November 20th, 2012 at 5:34 pm by Life Matters Media

The Den Theatre’s adaptation of Jane Anderson’s play “The Quality of Life” addresses many complex and often unspoken concerns baby boomers face as they begin to consider the end of life. The play focuses on Dinah and Bill (Jennifer Joan Taylor, Stephen Spencer), a devout, evangelical and conservative married couple from Ohio. They visit their freethinking agnostic cousins, Jeannette and Neil, (Liz Zweifler, Ron Wells) after a forest fire destroys their California home.

Dinah and Bill recently lost a young-adult daughter, their only child, to an unspeakable crime, and their own relationship has been strained since. Neil is facing late-stage prostate cancer, and Jeannette is unable to imagine living her life without him.

Neil uses marijuana to dull his cancer pain, a practice Bill judges harshly. When Bill and Dinah learn of Neil’s plans to end his own life in the coming weeks, the couple’s visit to California is complicated even more.

The couples’ ideologies clash as they attempt to work through their different beliefs about religion, medical marijuana, assisted death, morality and mortality- all within feet of the audience. Audiences become so invested in the characters that tears flow, an experience the actors call cathartic.

Wells, Spencer, Zweifler and Taylor

Life Matters Media spoke with the cast about their experiences with the play.

Why is discussing the end of life taboo in America?

Spencer: I think it’s such a cultural thing. I have friends who are more like Neil and Jeannette who’ve had a death in their family. They read through the Tibetan Book of the Dead and chanted and their whole family was around. They made a beauty of death because they saw it as a passing. In America, death is taboo. A play like this opens up the discussion.

Wells: I think it has a lot to do with our Puritanical history, our religion. It seems to me that people elsewhere in the world, particularly in Europe, have a healthier view of life and death. A lot of it gets tied up in our beliefs and everyone wants to live. I think this play, at the heart of it all, is about “how do you say goodbye?”

Taylor: Because it hurts. We don’t like to talk about things that hurt us. I love being in a play that provokes. It’s been a dream come true to be part of a story that’s so important. I’ve met people who’ve lost their children and came to this play. But they left feeling relief, in a cathartic way.

Zweifler: I’ve been nervous about people coming to see it for that reason. But they seem to really like it.

How do you feel about laws such as Question 2, which was just voted down in Massachusetts? It would have allowed physicians to prescribe life-ending drugs to some willing terminally ill patients.

Zweifler: I’m open to it, but when someone gets to decide one’s fate, that’s worrisome. But I like the idea of when it’s your time, you get to decide. But the balancing act is when do you let people go? There are new medical technologies that can keep people alive.

Wells: I have no problems with the issue at all. But I understand how people could fear these types of laws.

Taylor: I was raised Catholic and was raised to believe that suicide is a sin, and that you go to hell if you do it. Some of that is stuck in me. I don’t like the idea of someone being able to end one’s life. I like the idea of comfort at the end of life. I would probably not vote for it, but you shouldn’t have to die in pain. Not when there are good drugs around.

Do you identify with your characters?

Taylor: I’m more like Dinah than I would have ever thought. I think of myself as this liberal person, but I have this little conservative side to myself. I never really thought of it until I played Dinah. I would say things that Dinah would say. I thought I was Jeannette.

Wells: Neil is the most personal role I’ve ever played. Neil is the man I want to be. I see a lot of myself in him.

Zweifler: I definitely have Jeannette characteristics but I’m not as hard on people as Jeannette is.

The Chicago Tribune’s Chris Jones recommends this adaption. “In a second-floor walk-up, you’ll find honest Chicago acting, deep thoughts, honest writing about societal change and compassion for the messiness of all our value systems, let alone the way we want to face our end,” he wrote in his three-star review.

The Chicago Theatre Review’s Rachel Parent has called the play “a strong note in a beautiful place.”

Tickets are available here