Last week the Dartmouth Atlas Project released startling information about how many Americans with end-stage cancer die in intensive care units and acute care hospitals, with all the attendant invasive procedures, family isolation and suffering that implies. About one third, as it turns out. Too many, considering almost everyone’s stated preference is to die at home.
The Project’s other revelation was astronomical variation by location . People dying of cancer in New York City are seven times more likely to end their days tethered to tubes, probes and machines than those dying of the same diseases in Iowa City. Seven times. The cancer patients in New York don’t live longer than those in Iowa City. It’s just that technology and agony are more likely to dominate their last days.
Tonight, the PBS show Frontline illuminates the Dartmouth data with a bedside view of the New York style of end-of-life care. Called “Facing Death: Families make end-of-life choices” it offers examples of physicians, patients and families who do face death honestly and others who studiously avoid facing it. I encourage those who want to understand how current medical practice fails patients at the end of life, and glimpse avenues toward hope, to watch the Frontline documentary with these questions in mind:
- Several doctors are highlighted, working with patients and talking to us about their experience and philosophy. Which doctors seem to center their work and perspectives on patients? Which focus on procedures and symptoms?
- Where does effective, clear communication among doctors, patients and families appear? Are some communication styles ineffective?
- Among all the patients, families and physicians portrayed, who acknowledge death is approaching?
- Who initiates discussion of the quality of the patient’s remaining days? Who stops the discussion by changing the subject?
- Who speaks with a clear and forthright voice about a patient’s situation, needs and desires? Who blurs their statements with phrases like “I’m not sure . . . .?”
- When do doctors present full information about options – potential harms and benefits – and allow patients to make explicit informed choices?
Will the medical profession – particularly those in New York – be affected by this Frontline documentary? Will it spur medical educators to develop classes on how to talk meaningfully with people nearing the end of life? Young doctors need to learn to ask more open-ended questions, take more time to find out what is on people’s minds and be more honest about what to expect from the treatments they offer. It should persuade acute care physicians to enlist chaplains, psychologists or others prepared to support patients and families through the grief of impending death, if they cannot do it themselves.
“Facing Death” should spur everyone to work hard to extract a candid assessment of any treatment’s chance for success. We should prepare our loved ones with knowledge of our beliefs, attitudes and preferences. Sadly, most of the physicians shown here do not work from a model with their patients at the center, and few communicate in a style that gives full and frank information and solicits patient input. Until they change, patients and families must themselves face an approaching death and drive the discussion of end-of-life choices.