When retired surgeon Dr Michael Miller was dying of pancreatic cancer, he knew he wanted to die in his own bed, at his home in Boulder, CO. His desire was to leave surrounded by family and under the care of a supportive hospice team. Dr Miller had done his homework on end-of-life (EOL) choices. He had researched the dying process and discovered that patients who stopped eating and drinking often had an easier exit. However, Dr Miller found few studies specifically addressing patient refusal of nutrition and hydration (PRNH). What little evidence he found proved largely anecdotal. He also discovered a lack of knowledge and information relating to dehydration and the dying process, not just among patients and their families but also among professional healthcare providers. The documentary Dying Wish is the gift of a compassionate physician who laments his own past lack of skill at the bedside of the dying.
Dr Miller decided that when his own body began to signal his closeness to death, he would allow nature to take its course by stopping intake of fluids and food. His existential pain around a prolonged dying process and his belief that dehydration would alleviate some of his more troublesome symptoms led to the decision to refuse food and fluids.
When Dr Miller called a Colorado community radio station to ask whether a reporter would be interested in documenting his final days, he never imagined that he would meet a journalist with EOL expertise. In his conversation with Karen van Vuuren, who became the director of Dying Wish, Dr Miller first focused on the possibility of a radio feature. When he learned of her previous experience as a television producer, he suggested a film. Within days, a camera crew was assembled and was standing by for daily visits to Dr Miller's house. When filming began, Dr Miller had not yet embarked upon his fast. For some time, he had been dealing with pain, nausea, and diarrhea, for which he was being treated by his hospice care team. Dying Wish follows Dr Miller over the course of his fast to his death on the 13th day of not eating and drinking. The film captures the physical changes in him, the dizziness associated with hypotension, the muscle loss, cachexia, and weakness. Dr Miller talks about the methods of comfort care that he uses to address the most common adverse symptom of dehydration in the dying: dry mouth. People who have seen the film often express their surprise at Dr Miller's still frequent trips to the bathroom, days into his fast, emphasizing the fact that abstaining from fluids does not preclude urination. The body still needs to eliminate waste.
Dr Miller wanted to highlight the common physical benefits of dehydration at the end of a terminal illness: the release of endorphins, which provide natural analgesia, reduced edema and pain from fluid-filled tumors, and fewer secretions, to name but a few. His goal was to dispel myths of protracted pain and anguish due to thirst. At no point does Dr Miller complain of either thirst or hunger. Indeed, it becomes clear that cancer took away his hunger months before he signed on to hospice. Reduced appetite then is seen as a natural part of the dying process, as the body begins to shut down.
Ultimately, Dying Wish provides a window on the dying process, demystifying it for many individuals whose only experience with death is as a chaotic, tragic event or a medical emergency. Perhaps the most profoundly touching scenes are those in which he takes leave of his family, reflecting on his life and the nature of his leaving, turning the period of his dying into a meaningful rite of passage. Dying Wish addresses far more than what it means to refuse food and fluids at the end of life. As an educational tool, it invites discussion about existential and psychospiritual questions, such as the nature of a "good death" and what it means to be "ready to die." Director Karen van Vuuren sought out bioethicists who could comment on these issues and share their own experiences with patients who had made similar choices.
Dying Wish makes it clear that patients have a right to stop eating and drinking at the end of their lives. Dr Miller's own advanced directives emphasized quality of life. He was determined to avoid the indignity that his 102-year-old mother faced at the end of her life, when nursing home staff cajoled her into eating against her will. Among the general public, Dying Wish has opened hearts and minds to a subject that, in our society, still does not bear thinking about. Audiences who have seen Dying Wish are often incredulous that patients can exercise such control over the circumstances surrounding their deaths.
It could be said that Dr Miller, as a medical man, had a need to control his death, but he also had a desire to approach it with a degree of consciousness that assumed acceptance of the inevitable course of nature. Physicians who have seen the film have commented that Dr Miller has made them feel more comfortable about their own deaths. EOL professionals have used it with patients to broach sensitive issues that may be more easily aired through the less personal medium of a documentary film. While some patients and families might pore through written educational literature about patient choice, many do not. Although watching a film requires a more passive role from the individual, an educational film such as Dying Wish can be used to actively engage in discussions about sensitive subjects such as death and dying.
Dying Wish has been screened at film festivals around the country and has been featured in workshops at the Colorado Center for Hospice and Palliative Care and at the clinical conference of the National Hospice and Palliative Care Organization. The filmmakers, Karen van Vuuren and Francesca Nicosia, both of whom have extensive experience working in the field of EOL care, hope to create a series of documentaries for use in EOL education and are currently seeking sponsors.
Dying Wish is a project of Wordwise Productions. For more information about the film, the filmmakers, screenings, and a Weblog, visit http://www.dyingwishmedia.com.
Karen van Vuuren, BS, Diploma in Broadcast Journalism, is the writer and director of Dying Wish. Please address correspondence to [email protected].