Physician B.J. Miller has recently garnered the admiration of the public for his innovative work in medicine. Unlike other recent newsworthy breakthroughs, however, Miller’s contribution to the field hasn’t involved cutting-edge technology, developing new medication, or naming unrecognized illnesses. Rather, Miller has redirected modern medicine’s fixation on longevity, and focused attention on one of the oldest problems of all: how to grapple with the end of life.
Dying may seem like a straightforward business, but there are almost as many ways to approach the end of life as there are to approach life itself. An examination of the End of Life Forum in 2009 noted, “each death is unique, as is each birth.” The forum, held in Ireland, drew a telling amount of attention, attended by hundreds of people.
This End of Life forum wrestled with thorny questions that revealed how much the current system fails patients by focusing only on keeping them alive. How, for example, do you comfort a patient with a chronic illness vs. a sudden and unexpected death? What provisions should be made for grieving families, before and after a patient’s passing? How involved should they be in decision making? How do you plan for patients who may not be able to advocate for themselves as their condition advances? How do you choose where their final days will be spent: in a hospital, in a hospice, or at home? How do you communicate such an abstract and difficult concept to those with intellectual disabilities or impaired cognition?
Another issue is that many practitioners are not adequately trained for working with people approaching the final stage of life. “There has been some debate as to whether these skills can be learned or are innate,” writes Bob Carrol, “While the ability to listen and empathise with the dying is considered an invaluable gift, some contributors emphasised professional competence and appropriate end of life training for clinicians, nurses, chaplains, pastoral care workers, allied health professionals and social care workers.”
He goes on to add that “while some contributors spoke positively of specific palliative and end-of-life care education and training initiatives and programmes currently available, a constant theme of many has been the skills deficit among those caring for and providing services to people at the end of their lives.”
The end of our lives is deeply discomfiting, but a reluctance to broach the subject does not influence its inevitability. As Miller’s approach shows, easing one of the most difficult of processes may not be as complex or impossible as we imagine, if we develop the courage to confront it.
Reporting on Dr. Miller’s hospice, Jon Mooallem writes, “One especially well-liked volunteer, Josh Kornbluth, told me that, after a year working at the Guest House, he understood that the value of Zen Hospice is actually ‘in the quotidian.’ The holding of someone’s hand, bringing them food that’s been beautifully arranged on the plate, all the small ways of showing respect to that person as a living person and not as ‘predeceased.'”