Death By Design

As a world-known musician, Michael Franti, has been spreading his message of love, peace and social justice for decades. As an Registered Nurse, Sara Agah Franti, has witnessed firsthand the toll that life-threatening medical conditions have on both patients and their loved ones. Michael and Sara created a project that bridges their passions and expertise - Do It For The Love.

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In April 2013, Steve and Hope Dezember reached out to Michael and asked that Steve’s wish to attend Michael Franti & Spearhead’s concert be granted. Steve is living with advanced stages of ALS (Lou Gehrig’s disease). During the show, Michael invited the couple to join him and the band onstage. Although Steve was barely able to move his body, he asked Hope to lift him out of his wheelchair. Wrapped in each other’s arms, they danced on stage in front of 20,000 fellow music fans. There was not a dry eye in the house.

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Michael and Sara had been looking for a project to work on together. That night, they decided they would continue to give the gift of live music to inspire joy, connectedness and a positive, potentially life-changing experience to as many people in need as possible. Michael came very close to dying when his appendix ruptured on tour. Sara works as an E.R. nurse. Their experiences, and the Dezembers’ story, led to the creation of Do It For The Love. Their hope is to bring thousands of people in need, to experience the healing power of music. 

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Dr. Katherine Arnup is a writer and speaker on issues related to loss, aging and dying and its impact on families and communities. Her book, “I don’t have time for this!”, provides a blueprint for the aging process, illness, and dying that we will experience. Through storytelling and her personal experiences, Dr. Arnup shows how to overcome the fear of aging and loss.  She provides resources in ways to begin essential conversations with our parents—before it’s too late!

Dr. Arnup has felt loss and its impact first-hand. Despite a profound fear of death, she became her sister’s caregiver, confidante, and advocate when she was dying of cancer at the age of 51. The experience was life-changing – Katherine recognized the importance of being present and showing up for the more challenging experiences of life. The loss of her sister led to hospice training and volunteering each week for more than a decade at a residential hospice.  She is a passionate advocate for providing dignified and caring support for dying people and their families.

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An exquisite memoir about how to live—and love—every day with “death in the room,” from poet Nina Riggs, mother of two young sons and the direct descendant of Ralph Waldo Emerson, in the tradition of When Breath Becomes Air.

“We are breathless, but we love the days. They are promises. They are the only way to walk from one night to the other.”

Nina Riggs was just thirty-seven years old when initially diagnosed with breast cancer—one small spot. Within a year, the mother of two sons, ages seven and nine, and married sixteen years to her best friend, received the devastating news that her cancer was terminal.

How does one live each day, “unattached to outcome”? How does one approach the moments, big and small, with both love and honesty?

Exploring motherhood, marriage, friendship, and memory, even as she wrestles with the legacy of her great-great-great grandfather, Ralph Waldo Emerson, Nina Riggs’s breathtaking memoir continues the urgent conversation that Paul Kalanithi began in his gorgeous When Breath Becomes Air. She asks, what makes a meaningful life when one has limited time?

Brilliantly written, disarmingly funny, and deeply moving, The Bright Hour is about how to love all the days, even the bad ones, and it’s about the way literature, especially Emerson, and Nina’s other muse, Montaigne, can be a balm and a form of prayer. It’s a book about looking death squarely in the face and saying “this is what will be.”

Especially poignant in these uncertain times, The Bright Hour urges us to live well and not lose sight of what makes us human: love, art, music, words.

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When Miss Norma was diagnosed with uterine cancer, she was advised to undergo surgery, radiation, and chemotherapy. But instead of confining herself to a hospital bed for what could be her last stay, Miss Norma—newly widowed after nearly seven decades of marriage—rose to her full height of five feet and told her doctor, “I’m ninety years old. I’m hitting the road.” 

And so Miss Norma took off on an unforgettable around-the-country journey in a thirty-six-foot motor home with her retired son Tim, his wife Ramie, and their dog Ringo. 

As this once timid woman says “yes” to living in the face of death, she tries regional foods for the first time, reaches for the clouds in a hot air balloon, and mounts up for a horseback ride. With each passing mile (and one educational visit to a cannabis dispensary), Miss Norma’s health improves and conversations that had once been taboo begin to unfold. Norma, Tim, and Ramie bond in ways they had never done before, and their definitions of home, family, and friendship expand. Stop by stop, state by state, they meet countless people from all walks of life—strangers who become fast friends and welcome them with kindness and open hearts.

Infused with this irrepressible nonagenarian’s wisdom, courage, and generous spirit, Driving Miss Norma is the charming, infectiously joyous chronicle of their experiences on the road. It portrays a transformative journey of living life on your own terms that shows us that it is never too late to begin an adventure, inspire hope, or become a trailblazer.

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Dr. Shoshana Ungerleider, a physician at California Pacific Medical Center in San Francisco, is passionate about improving how seriously ill patients are cared for within the medical culture.  Shoshanna thinks big and is an innovator who constantly thinks outside the box.  

As founder of the Ungerleider Palliative Care Education Fund, she is supporting big ideas that further palliative care education at every level.  In collaboration with the California Pacific Medical Center Foundation, the Ungerleider Fund created a well-rounded education program to enhance awareness and training around advanced illness and end of life care. The program also encourages physician communication and wellness for healthcare providers. 

Not stopping there, she funded Extremis, a short documentary about end of life decision-making in an intensive care unit featured on Netflix and directed by Academy Award nominee, Dan Krauss.  In addition, Dr. Ungerleider co-sponsored the OpenIDEO design challenge to re-image end of life and “Death Over Dinner:  Healthcare Edition.“ 

Dr. Ungerleider is the founding chair of the End Well Project, a conference that will address issues as a multidisciplinary community, bringing together design, technology, health, policy along with activists’ imaginations and expertise.  This conference will be held in San Francisco on December 7thwith an all- star-line-up of speakers and innovative thinkers collaborating to enhance the dying experience for the patient and the provider.

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How does a Stanford University graduate with a MD/PhD that includes specialized training in one of the most aggressive, cure-focused specialties in medicine―Hematology and Bone Marrow Transplants―find her way to palliative care?  By being still just long enough for her life to find her. 

Dr. Dawn Gross is uniquely qualified to lead a cultural revolution on end of life care. She holds combined degrees from Tufts University School of Medicine and the Sackler School of Biomedical Sciences, where she was trained rigorously as both a physician and scientist. 

Beginning her practice as a hospice team physician, Dawn was invited to attend on the palliative care team at the University of California, San Francisco (UCSF). She was subsequently recruited away to become the Arthur M. Coppola family chair for the Department of Supportive Care Medicine and clinical professor of hospice and palliative medicine at the City of Hope National Medical Center. Dawn wanted to be a scientist.  She loved the science behind medicine and thought she would never aspire to become a practicing clinician.  Yet, when her father was facing a serious illness, Dawn chose not continue on the scientific path she loved.  That’s when she sat still long enough and allowed life to find her―and began to bake.

Dawn didn’t just bake anything. She baked a batch of cookies from her grandmother’s old recipe books.  “Watching my dad eat the cookie from his childhood, he was transported to a place of pure happiness and joy,” she recalls. “This made me realize how important the small things in life truly are at the end of life.”  

Upon her father’s admittance to hospice, dying only four days later, her grief took over.  

Throughout her medical training, Dawn was taught to separate her emotion, putting boundaries between her own self and the patients she served.  As a hospice medical director, she knew one thing.  She did not want to be a physician that chose not to relate with her patients facing end of life.  She found that she simply could not take her heart out of her practice.

Dawn returned to UCSF to join the newly formed palliative care committee within the San Francisco Department of Aging and Adult Services.  In addition, she was invited to host a ground-breaking live, call-in radio program, Dying to Talk, broadcast on the oldest FM station west of the Mississippi, KALW 91.7 FM. 

Her experiences as a hospice and palliative care physician have given her an unequaled perspective on how to care for people in their own homes. Whether attending patients in trailer parks or penthouses, there is no ivory tower. Dawn’s personal encounters as a mother and as a witness to her father’s death and her mother’s simultaneous serious illness inspired her to write and speak extensively about the work she does today. 

Her writings have been published in a variety of medical journals, including:  Science, JAMA, Annals of Internal Medicineand San Francisco Medicine. A recent piece, "The Error in 'There's Nothing More To Do,'" was featured in the “Opinionator” blog of the New York Times. Her recent work to develop a curriculum offering a "death-ed" class at Head Royce School in Oakland, CA, was also published in the New York Times.

Dawn’s written words based upon her distinguished medical career have one mission: to show us how we can live fully until we die. She is determined, both through her writings and by example, to improve how the medical community and medical protocol communicate with people about their potential dire prognoses.

Her undertaking is to assist patients and their families in dealing with the inevitable outcome of a life-ending health crisis with honesty and dignity. In the end, public policy must acknowledge and question incentives that prolong life with no appreciation for the impact on how we die. The public is just beginning to accept this dialogue and there is much more to be said.

http://www.drasyouwish.com/

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Dr. Lucy Kalanithi, a Clinical Assistant Professor of Medicine at the Stanford School of Medicine, is the widow of neurosurgeon and author Dr. Paul Kalanithi who was diagnosed with stage IV lung cancer at age 36. Shortly after his diagnosis, Paul wrote the poignant memoir, When Death Becomes Air, about his transformation from doctor to patient. The book explores what makes life worth living in the face of death. It is a meditation on mortality and meaning that spent 12 weeks at #1 on the New York Times bestsellers list.

After Paul died in 2015, Lucy completed his memoir and wrote its powerful epilogue. As her husband’s caregiver during all phases of his illness and as a practicing physician, she has interests in the value of healthcare in relation to medicine, patient-centered care and end of life care. She is dedicated to helping others make personal choices that best align with their own values at end of life. 

Lucy has gained national media attention and has appeared on NPR, PBS Newshour, Yahoo News with Katie Couric, and Charlie Rose on CBS. She has also been featured in The New York Times and Elle magazine. She currently lives in the San Francisco Bay area with the couple’s daughter, Elizabeth Acadia (Cady). 

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Dr. Jessica Zitter, MD, MPH, is committed to changing the current paradigm of end-of-life medical decision-making. In today’s medical culture, the dying are often put on what she calls the “End-of-Life Conveyor Belt.” They are intubated, catheterized, and die attached to machines, frequently without even knowing they are dying.

In her work, Zitter builds bridges between patients and the healthcare team, striving to offer care aligned with each patient’s values and preferences. She has come to see that patients empowered with knowledge can die well, even beautifully.

Dr. Zitter practices the unusual combination of Critical and Palliative Care medicine at Highland Hospital, a public hospital in Oakland, Calif. She attended Stanford University and Case Western Reserve University Medical School and earned her masters in Public Health from the University of California, Berkeley. Her medical training includes an Internal Medicine residency at the Brigham and Women’s Hospital in Boston and a fellowship in Pulmonary/Critical Care at the University of California, San Francisco. She is also co-founder of Vital Decisions, a telephone-based counseling service for patients with life-limiting illness.

Dr. Zitter is the author of Extreme Measures – Finding a Better Path to the End of Life, due to publish this month. She is a regular contributor to The New York Timesand her writing has appeared in The Atlantic, The Huffington Post, Pacific Standard,JAMA, andThe Journal of the American Medical Association. She is featured in the short documentary Extremis, which won top honors at the Tribeca and San Francisco International Film Festivals now streaming on Netflix.

She lives in Oakland with her husband, three children, and two dogs.

http://jessicazitter.com/

https://www.youtube.com/watch?v=TJiY8duVgz0

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When an unexpected accident forces you to come face to face with your own mortality, you tend to relate to those that are suffering.  You tend to be a Sherpa; a guide to those that are facing suffering

In my opinion, BJ Miller is the epitome of a 21st century Sherpa.  When your personal experiences opens a doorway to relate to those facing end of life, your practice is not a practice, it is a calling.

As a Princeton student, BJ’s life dramatically changed when he endured a tragic accident. Climbing on top of a parked Dinky Line shuttle train in New Jersey, 11,000 volts of electricity violently came through a power line and connected with the watch he was wearing on his left wrist.

As the high voltage ran through BJ’s body, he was badly burned and nearly dead. The young BJ Miller died that night, but medics were able to resuscitate him.  As he recovered over the next several months, he was faced with accepting and coping with the loss of both legs below the knee and his left forearm.

Bravely undergoing multiple surgeries, BJ almost gave up on his medical career aspirations. But a fellowship in palliative care was introduced to him from the state of Wisconsin, and there was an immediate connection.

BJ knew he had found his calling. He was able to share a viewpoint rarely brought into the palliative care setting.  He had experienced personal pain and loss and had escaped his own death.  He knew what suffering meant. He knew he wanted to make a difference. He wanted to change how individuals thought about death and dying. And now he is doing just that.

As the executive director of the Zen Hospice Project, BJ Miller has established a compassionate and pioneering service that initially grew from the San Francisco AIDS crisis in 1987 that created one of the city’s first residential hospices. Zen Hospice Project continues to be recognized as an innovative leader providing care for those facing advanced illness and support to their loved ones, while also educating and supporting an ever-growing community of caregivers.

The Zen Hospice Project is not like other hospices.  They do not take any reimbursements for caring for the dying at end of life.  The majority of hospice organizations rely heavily on compensation through Medicare, but that is not the case with the Zen Hospice Project.  They choose to do things differently and rely totally on donations from the community to support their mission without limiting care based only upon Medicare reimbursements.

http://www.zenhospice.org/

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