Hope is defined as a feeling of expectation and desire for a certain thing to happen. So when we tell you that several TEDMED 2018 Speakers have taught us how to find hope in places such as serious illness and end of life, you might be surprised. Despite the initial discomfort of discussing such difficult topics, there is much to learn from conversations around end of life and cancer diagnoses. Whether it be through sound, support, or a little bit of humor, each of these Speakers has a unique approach to what it means to take on the challenges that life brings us with hope , and their insight can help us learn to become more comfortable and capable of having those difficult, yet critical, conversations about what it means to truly live.
With a focus on making every moment of our life, down to our last breath, comfortable and full, Steve Pantilat, Chief of the Division of Palliative Medicine at UCSF, works on transforming the healthcare system to improve the quality of life for people living with serious illness and their families. Steve has spent much of his career focusing on how to preserve dignity in some of life’s most vulnerable moments, such as finding better ways to care for people in hospice. As the founding director of the national Palliative Care Quality Network (PCQN), a learning collaborative focused on how to improve palliative care across health care, Steve is creating new ways for doctors and hospitals to collaborate around providing comfort and hope to those living with serious and terminal illnesses. Steve has published over 100 peer-reviewed scientific papers, including one documenting how to set up similar networks to PCQN. While the conversation about death is a critical one to have, Steve’s doing important work to ensure that each person’s wishes are honored during their most vulnerable and difficult times in health care.
While Steve is designing resources for physicians, Yoko K. Sen is designing new hospital experiences for patients. As an ambient electronic musician, Yoko is tuned into sounds in ways that most of us are not. This acute sense was overstimulated when she was admitted to a hospital in 2014 and bombarded with harsh noises from various hospital equipment. This pushed her to ask the question: How do these disturbing sounds impact a patient’s wellbeing and dignity? This question inspired her to found Sen Sound, which not only looks at the impact that alarms and monitors have on the patients in a hospital but also how they affect the hospital staff. Yoko investigated these questions further as the artist-in-residence at Johns Hopkins University’s Sibley Innovation Hub. Turns out, with alarms going off constantly, physicians and patients develop “alarm fatigue” where they stop noticing the alarms altogether. Her effort to redesign the soundscape in hospitals is not merely about eliminating sound but designing the right sound experience for each person. Projects such as My First Sound and My Last Sound think about how to use the hearing sense to provide the best and most positive holistic experience for our most vulnerable populations at the ends of the spectrum of life.
At 34, Kate Bowler was a historian at Duke Divinity School and published author of the “first history of the [American Prosperity Gospel] based on divine promises of health, wealth, and happiness.” A year later, she was diagnosed with Stage IV cancer and confronted with the irony that was being an expert in the idea that good things happen to good people while facing serious illness. Channeling the mixture of emotions that come with such a diagnosis, Kate launched a national conversation about the discomfort we experience while talking about suffering to help not only herself but all of us learn to find hope and comfort in difficult conversations. Often using tongue-in-cheek titles for her articles and books, Kate finds ways to infuse humor into the serious discussions around pain and suffering, helping the reader engage with the difficult content. Aiming to ask the tough but necessary questions such as “What does the suffering person really want?” and “How can you navigate the waters left churning in the wake of tragedy?”, Kate wrote another book, Everything Happens for a Reason (and other lies I’ve loved), and currently hosts a podcast “Everything Happens”. On her show, she interviews guests about topics such as communication, love, and loss when facing illness and death, showing us how to be more comfortable talking about pain.
Whether it be the beginning or end of life, we all wish for our loved ones, and ourselves, to find dignity in the process. Sometimes that means embracing difficult conversations to know what ones’ last wishes are, and other times that means providing support for physicians to provide more options for those suffering. It can include redesigning our sensory experience of a hospital or developing a hospice plan that includes support for all the family members impacted. These Speakers are teaching us how to find hope and beauty in difficult situations and paving the way through what often feels like a dark forest of uncertainty. Be sure to tune into TEDMED 2018 next week, whether in person or online through TEDMED Live, to hear more about their unique perspective on what care can look like in the rawest moments.