In a recent column in the Huffington Post, Jacob M. Appel argues for “rational rationing” of health care resources by withholding and withdrawing life-sustaining medical treatment from patients in a permanent vegetative state. He considers the case of Ruben Betancourt, which will soon be decided by the New Jersey Superior Court in Betancourt v. Trinitas Regional Medical Hospital.
Mr. Betancourt was a patient at Trinitas Regional Medical Hospital in Elizabeth, N.J., where he had successful surgery for a malignant thymoma in January 2008. But Mr. Betancourt suffered oxygen deprivation, resulting in severe brain damage, after accidental extubation of his breathing tube following the surgery. He lapsed into unconsciousness and was subsequently moved to various health care facilities, including a nursing home, where he was sustained on a feeding tube and dialysis.
When Mr. Betancourt was readmitted to Trinitas in July 2008 with renal failure, doctors balked at providing dialysis, artificial nutrition and hydration, and artificial ventilation, claiming that the patient was in an irreversible vegetative state, was actively dying, and that further treatment was medically and ethically inappropriate and inhumane. The hospital sought to remove him from life support. Mr. Betancourt’s daughter objected, saying that she thought her father was aware and reacted to his family, and that he was responding to treatment. Although he left no advance directive, his family believed that he would have wanted treatment continued. A legal battle ensued between the family and the hospital.
Mr. Betancourt died in May 2009, but his legal case remains on appeal. The court’s decision could have important implications for legal debates about medical futility, patient autonomy, and questions about when and under what circumstances doctors and hospitals can refuse to provide life-sustaining care to patients.
Appel argues that physicians and hospitals should withhold or withdraw care from permanently vegetative patients, because such care is costly and diverts money and medical resources from more worthwhile patients and endeavors:
Money spent on vegetative patients is money not spent on preventive care, such as flu shots and mammograms. Each night in an ICU bed for such patients is a night that another patient with a genuine prognosis for recovery is denied such high-end care. Every dollar exhausted on patients who will never wake up again is a dollar not devoted to finding a cure for cancer. While the visible victims may draw the headlines and attract indignant protests from so-called "pro-life" organizations, the invisible victims are people like you and me who will suffer from diseases that are never cured because funds are being poured down a healthcare sieve in order to maintain permanently-unconscious bodies on complex and costly forms of life support.
Appel does not mince words: “Let us make no mistake about what this would mean: It would mean declaring that the lives of PVS patients are worth less than those of others.”
Put in such terms, Appel’s case sounds simple. If we would just stop spending precious medical and financial resources prolonging the lives of permanently vegetative patients, we could use those resources where they can do more good, like for finding a cure for cancer. If only it were that simple.
Mr. Betancourt’s condition was indeed very grave, and his chances of recovering were slim. He suffered from chronic infections, sepsis, and hospital-acquired bedsores, in addition to his other maladies. Nonetheless, he lived for several months after doctors at Trinitas declared that he was “actively dying.” To generalize from one patient’s extremely poor prognosis to the condition of other vegetative patients, however, is unsupportable for several reasons.
First, and most importantly, there is a widely acknowledged problem of misdiagnosis in disorders of consciousness, which include the vegetative state. It is estimated that more than 40 percent of patients currently diagnosed in a permanent vegetative state are instead in a minimally conscious state – that is, they may be conscious, albeit to a limited degree. Clinicians and researchers are working to improve diagnosis, but at present it remains extraordinarily difficult, even for experienced neurologists, to distinguish between the vegetative and minimally conscious states.
Given the uncertainty, we should not be so quick to jump to conclusions about the irreversibility of a vegetative state. How quick would we be to terminate life support for patients with other conditions if there was a four in ten chance that they had been misdiagnosed? Regardless of the decision of the Betancourt court, any legal guidelines on withholding and withdrawing treatment from permanently vegetative patients will be meaningless – and potentially unjust – absent the ability to accurately and with medical and legal confidence diagnose patients.
Secondly, we do not know very much about the subjective lives of patients with disorders of consciousness. Vegetative and minimally conscious patients cannot, by definition, communicate meaningfully,and, therefore, effective measures of their quality of life are at present lacking.
There is evidence from neuroimaging studies that minimally conscious patients can experience pain, that their brains respond emotionally to the voices of loved ones, and that they may be capable of cognition at a level that is not evident from their behavior. The evidence is not dispositive, but it nonetheless provides reason for concern about the quality of life experienced by these patients. Their lives may be worth living, or these persons may be even worse off than vegetative patients. We need to know much more, however, before we can draw any conclusions about what their lives are worth to them, or to their families.
Many patients with disorders of consciousness suffered traumatic brain injuries as a result of accidents, and many of them were quite young at the time of their injuries. They did not have advance directives, and, as with Mr. Betancourt, it was left to their families to make life-or-death decisions for them. We should respect the expressed wishes of patients when they are applicable, but when patients can no longer decide for themselves, or when they have not left instructions for their future care, the best way to protect their interests is to allow those who know them best to make decisions for them. Such decisions cannot come from a court in a one-size-fits-all statement about the value of a class of patients.
Finally, Appel’s argument implies a straightforward financial benefit to taking resources away from vegetative patients, as if solving the problem of runaway health care costs is as simple as shifting money from column A to column B on some national medical spreadsheet. That’s an extremely simplistic view of the economics of health care, but even if it were credible, the picture Appel paints of vegetative patients taking resources from more worthwhile patients is not accurate.
It is unknown how many patients there are with chronic disorders of consciousness, in part because most of them are not in acute care facilities like Trinitas, but rather in long-term custodial care facilities. Many of these patients get very little care beyond artificial nutrition and hydration, although they can live for decades. Indeed, one of the tragedies for these patients is that they are neglected both clinically and socially.
Clinical neglect is one of the factors responsible for the misdiagnosis of these patients – once institutionalized, they do not receive follow-up diagnostic tests that might detect a change in their neurological status. Neither do they receive rehabilitative care that might enhance recovery. A diagnosis of permanent vegetative state requires being vegetative for 12 months in the case of patients who suffer traumatic brain injuries, and six months for patients who suffer anoxic/hypoxic brain insults, such as Mr. Betancourt. During that time, very few of these patients would be taking up intensive care beds or resources. Mr. Betancourt himself was in a nursing facility for several months before his readmission to Trinitas.
The bottom line – and we are talking about the bottom line here – is that patients with chronic disorders of consciousness do not typically receive the kind of expensive technological interventions and intensive care that Mr. Betancourt received in his last days of life. These patients are not taking intensive care beds away from other acutely ill patients.
While there may be some savings to be reaped from terminating the lives of patients with chronic disorders of consciousness, it will not be the substantial windfall that Appel imagines. Neither can it be assumed that “every dollar” will be diverted, as Appel suggests, to preventive care, or finding a cure for cancer. Public money saved could well be redirected to priorities outside health care.
There are substantial social costs to declaring an entire class of patients “worthless.” Allowing health care providers, including institutions like acute care hospitals, to unilaterally decide, against the wishes of patients or their legal guardians, to withhold life-sustaining medical treatment invites abuse and diminishes transparency and due process.
In a society that values patient autonomy and decisional authority, taking decisional power away from vulnerable patients or their surrogates would amount to abandoning them and leaving their fates to others who may or may not be motivated by patient welfare. It would change the culture of medicine – at least for these patients, if not for others – from one that is patient-centered to one that is beholden to the bottom line. In weighing the possible financial savings against the social costs of declaring these patients “worthless,” it is not at all obvious that ending treatment for all permanently vegetative patients will result in a net benefit.
L. Syd M Johnson is a research fellow in neuroethics at Novel Tech Ethics, Dalhousie University.