Being Mortal: Medicine and What Matters in the End Atul Gawande. Metropolitan Books, 2014. In Being Mortal, bestselling author Atul Gawande tackles the hardest challenge of his profession: how medicine can not only improve life but also the process of its ending. Gawande, a practicing surgeon, addresses his profession’s ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of a freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person’s last weeks or months may be rich and dignified. Full of eye-opening research and riveting storytelling, Being Mortal asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end.
Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope Back, Anthony, Robert M. Arnold, and James A. Tulsky. Cambridge: Cambridge UP, 2009. Physicians who care for patients with life-threatening illnesses face daunting communication challenges. Patients and family members can react to the difficult news with sadness, distress, anger, or denial. This book defines the specific communication tasks involved in talking with patients with life-threatening illnesses and their families. Topics include delivering bad news, the transition to palliative care, discussing goals of advance-care planning and do-not-resuscitate orders, existential and spiritual issues, family conferences, medical futility, and other conflicts at the end of life.
Knocking on Heaven’s Door: The Path to a Better Way of Death Butler, Katy. New York: Scribner, 2013. In this visionary memoir, Katy Butler ponders her parents’ desires for “Good Deaths” and the forces within medicine that stood in the way. Katy Butler was living thousands of miles from her vigorous and self-reliant parents when the call came: a crippling stroke had left her proud seventy-nine-year-old father unable to fasten a belt or complete a sentence. Tragedy at first drew the family closer. Then doctors outfitted her father with a pacemaker, keeping his heart going but doing nothing to prevent his six-year slide into dementia, near-blindness, and misery. When he told his exhausted wife, “I’m living too long,” mother and daughter were forced to confront a series of wrenching moral questions. When does death stop being a curse and become a blessing? Where is the line between saving a life and prolonging a dying? When do you say to a doctor, “Let my loved one go?”
The Best Care Possible: A Physician’s Quest to Transform Care through the End of Life Byock, Ira. New York: Avery, 2012. Ira Byock, a doctor on the front lines of hospital care, illuminates one of the most important and controversial social issues of our time. It is harder to die in this country than ever before. Though the vast majority of Americans would prefer to die at home—which hospice care provides—many of us spend our last days fearful and in pain in a healthcare system ruled by high-tech procedures and a philosophy to “fight disease and illness at all cost.”
Dying Well: The Prospect for Growth at the End of Life Byock, Ira. New York: Riverhead, 1997. Nobody should have to die in pain. Nobody should have to die alone. Dying Well brings us to the homes and bedsides of families with whom Dr. Byock has worked, telling stories of love and reconciliation in the face of tragedy, pain, medical drama, and conflict. Through the true stories of patients, he shows us that a lot of important emotional work can be accomplished in the final months, weeks, and even days of life. It is a companion for families, showing them how to deal with doctors, how to talk to loved ones—and how to make the end of life as meaningful and enriching as the beginning.
Extreme Measures Jessica Zitter. Avery, 2017.
Extreme Measures charts Dr. Jessica Zitter’s journey from wanting to be one kind of hero to becoming another—a doctor who prioritizes the patient’s values and preferences in an environment where the default choice is the extreme use of technology. In our current medical culture, the old and the ill are put on what she terms the End-of-Life Conveyor belt. They are intubated, catheterized, and even shelved away in care facilities to suffer their final days alone, confused, and often in pain. In her work Zitter has learned what patients fear more than death itself: the prospect of dying badly. She builds bridges between patients and caregivers, formulates plans to allay patients’ pain and anxiety, and enlists the support of loved ones so that life can end well, even beautifully.
The Five Invitations Frank Ostaseski. Flatironbooks, 2017.
Life and death are a package deal. They cannot be pulled apart and we cannot truly live unless we are aware of death. The Five Invitations is an exhilarating meditation on the meaning of life and how maintaining an ever-present consciousness of death can bring us closer to our truest selves. As a renowned teacher of compassionate caregiving and the cofounder of the Zen Hospice Project, Frank Ostaseski has sat on the precipice of death with more than a thousand people. In The Five Invitations, he distills the lessons gleaned over the course of his career, offering an evocative and stirring guide that points to a radical path to transformation.
A Roadmap for Success: Transforming Advanced Illness Care in America Bill Novelli. Bookpatch, 2015.
Produced by C-TAC and co-sponsored by the American Hospital Association and AARP, is now available in print and online. The Roadmap serves as a field guide for transforming advanced illness care in the United States by outlining the current landscape of advanced illness care and identifying action steps for achieving high-quality advanced illness care.