If ever a cause cried out for legislative wisdom and courage, it is medical futility. Consider the story of Ruben Betancourt, still playing out in New Jersey courts a year and a half after his death.
Ruben Betancourt died on May 29, 2009, at age 73, following complications from cancer surgery. In short, doctors at Trinitas Regional Medical Center in Elizabeth, N.J., deemed him in a persistent vegetative state, with a severe brain damage, kidneys beyond function, skin in irreversible deterioration. Betancourt's family disagreed and asked that treatment continue (tube-feed, dialysis, and a ventilator). Trinitas unilaterally imposed a do-not-resuscitate order, which put the family and hospital in court. And then Betancourt died.
At the heart of the Betancourt case is this: Is it ever OK for doctors to decide that dying is in process, medical care is futile, and to stop treatment against the stated wishes of the patient's family or guardian? And if the doctor can’t decide when treatment is pointless, who can? The questions will be ask more frequently as gap grows between society’s begrudging acceptance of death’s inevitability and medical science’s gift for prolonging life. And a further complication is cost: the hospital’s estimated tab for Betancourt’s care was $1.6 million.
Trinitas said it consulted with Betancourt's family and made efforts to transfer him elsewhere but could not find another facility willing to continue caring for him. "Patients do have a right to choose among available and appropriate treatment, but not to decide what's medically appropriate," Trinitas' vice president and general counsel Sam Germana told American Medical News.
Replied Betancourt attorney Todd Drayton: “We're not saying patients have the right to demand extraordinary or experimental treatment a hospital feels is inappropriate. That's not the issue. The facts of our case are whether or not a hospital can unilaterally terminate life-sustaining support over the objections of the family."
Last week, the New Jersey Appellate Division avoided “whole-cloth legislation from the bench,” but recognized the question won’t go away and requires “thoughtful consideration by the legislature.” The court’s apparent dodge may prove wise.
“Although at first glance it may appear that the Appellate Division side-stepped on an important issue with possibly nationwide consequences, the suggestion that the issue is best left for proper legislation may be the best course of action,” wrote Thaddeus Pope, bioethicist, blogger and law professor at Widener University. “The hospital sought an open-ended exception to the right-to-die doctrine for whenever a health care provider deems treatment to be unnecessary. While an exception that would allow some ability for a health care provider to refuse to continue treatment that is deemed unethical may be appropriate in certain circumstances, accepting such an argument might have led to an overbroad exception. The legislature may in general be better to craft a medical futility statute that would set the requirements for when a health care provider can refuse to continue providing treatment that would be considered futile.” (http://www.medicalfutility.blogspot.com/)
Before I began to participate in the work of the Community Ethics Committee in late 2008, I was essentially oblivious to this end-of-life conflict, when doctors who’ve been counted on to “do something” confront the likelihood that there is nothing therapeutic to be done to reverse the dying process. The term for this is the coldly descriptive “medical futility,” as the CEC learned through a study regarding the ethics of withholding non-therapeutic CPR.
Quoting from the CEC’s report: “We struggled to define what medical treatments patients and families are entitled to expect, and we gravitated toward an approach which took into account the patient’s overall goals of care which should be agreed upon after discussions with an informed patient and family. The goals of care then establish the entire context of a patient’s encounter with the medical community, so that a decision about CPR can be made within that context. We were faced with the fact that sometimes patients are dying -- a sacred process which should be protected.”
In trying to locate clarity amid death’s shape-shifting reality, the CEC perceived a need for sensitive, non-clinical language, and not putting off discussion of death until the patient is imminently terminal. Goals of care, which seem to have been lost in the Betancourt story, are crucial if this conflict is to ever achieve resolution.
The circumstances of Ruben Betancourt’s death are unique to him, but the inherent dilemma is agonizingly common for doctors and nurses alike. In such cases, hospitals can seem cold-hearted or must back down and provide care they don’t believe in, which carries untold consequences for the next patient. The public and the medical professional would be well served by legislation of clarity and vision.