Tough Choices: End of Life Care in the Media (March)

In March 2019, the Rights Writers explore the role the media has played in covering their issues and what effects it has had — positive and negative.

For most Americans, end of life care does not typically become a topic of discussion until a loved one faces tough decisions about how they would like to spend their final days. As the US population ages and reporters and healthcare workers alike begin to understand the importance of starting end of life education as early as possible, end of life care has received increasing media attention. At last month’s Oscars ceremony, Rod Epstein and Jeffrey Friedman’s End Game, about five terminally-ill patients and their families navigating end of life care in San Francisco, was nominated for best documentary short. Two years prior, another documentary short about end of life care called Extremis (directed by Dan Krauss) was also nominated. The latter followed one Oakland, California palliative care physician in her hospital rounds, placing the thrust of the storytelling upon doctors’ struggle to counsel clients balancing survival odds with exhausting treatments and conflicting patient/family wishes. End Game and Extremis join a small but growing movement of media creations that shine a light on end of life concerns, illustrating powerful, realistic, and gut-wrenching moments of beauty and loss during the dying process while simultaneously demonstrating the need for more diverse end of life perspectives. It is the ethical imperative of journalists and filmmakers to show the complexity of how Americans from various cultures, religions, and regions experience the dying process so that all people may have the right to the end of life care they desire.

Until recently, the conversation surrounding end of life care in the media centered upon doctors debating medical ethics in journals and the popular press. Due to the demand for and prestige attached to prolific publishing in academia, physician-scientists have made their voices well heard in the national conversation surrounding the quality of life near death. In contrast, stigma surrounding discussing death in public has silenced all but a few non-specialists. Family members sharing their own experiences confronting financial, legal, and medical decisions upon the passing of a terminally ill parent or sibling highlight realistic and relatable concerns, relying more on experience than theory. Medical specialists who study end of life care may offer important theoretical critiques and policy recommendations to improve healthcare delivery to terminally ill, institutionalized patients; however, families’ emotional, distinctly human stories of heartbreak, confusion, grief, and acceptance when reflecting on end of life care after a loved one’s passing offer impactful testimonies of navigating challenges in life and healthcare. When doctors dominate the conversation on end of life care, patients and families’ concerns can fall through the cracks and those on the margins of society receive lower quality care. Extremis is a recent example of how the media tends to focus upon doctors’ struggle to provide helpful, balanced advice to their patients, while the media generally fails to center the voices of patients navigating an often confusing and overwhelming medical system.

Serving over 1.4 million Americans annually, hospice providers have become a significant voice in end of life dialogue. Their integrated compassionate care model has won many admirers since the movement developed out of England about half a century ago, yet the dominance of hospice in end of life concerns has led to conflation of both. It is important to distinguish hospice as a medical provision model for terminally ill adults that cannot and does not aspire to encompass the medical care of all dying patients. Hospice cannot singlehandedly address the human rights challenge of providing high-quality healthcare to dying patients. Not every dying patient is eligibile for hospice, not all who are eligibile live close enough to a hospice facility, and many marginalized dying patients do not desire hospice services for religious or cultural reasons. Media profiles of hospice providers, while important to recognize the work of dedicated medical professionals, do not address the end of life issues facing patients, families, and doctors who are concerned with unpredictable disease courses, or those for whom their culture, religion, or location precludes them from seeking hospice care.

A growing death-positive movement marked by the proliferation of “death cafes” and frank conversations about going through a dead parent’s belongings has welcomed more patient perspectives into the end of life national dialogue. Death cafes seek to address the ethical imperative of prioritizing patient rights and provide the general public a platform to discuss best practices for advocating for quality end of life care. By bringing intimate moments death and healing directly to audiences, documentaries are essential educational tools for the public to see how different Americans have died. While unsuccessful in its recent Oscar bid, End Game charged the media with renewed interest in how Americans die, revealing the end of life stories of five San Franciscans from diverse economic and racial backgrounds as they each processed their impending deaths through different medical choices that had profound consequences for their final days. Additionally, Duke Divinity Professor Kate Bowler’s reflection in the New York Times on her evolving end of life concerns throughout an adulthood spent studying the prosperity gospel, raising a young family, and being diagnosed with Stage IV cancer highlights how religion and life stages impact one’s perception of priorities that determine medical treatment and financial planning. If doctors do not understand how patients’ right to religious and cultural expression informs their end of life desires, then patients will not be able to design their healthcare plan to conform to deeply held beliefs and practices. In addition, if the general public does not understand how rural dying adults lack access to healthcare facilities, then attempts to bring equity to end of life care will remain inadequate. While the proliferation of end of life patient-centered narratives in the film and news has made conversations about financial, legal, and medical desires near dying harder for families to ignore, the media can do more to center the stories of diverse cultural, religious, and rural folks who have confronted dying to honor the many ways that Americans have handled the tricky questions that accompany the dying process.