Incapacitated, Alone and Treated to Death

By JOSEPH SACCO, M.D
08 oct 2008--Mr. Green lay in the bed next to the window, 15 floors above the Cross-Bronx Expressway. Fifty-nine years old and suffering from AIDS-related dementia, he was bedbound, permanently tethered to a ventilator and, though conscious, unaware of his medical condition. In medico-legal parlance, he was incapacitated: unable to understand the consequences of his decisions and unable to direct the doctors caring for him.
The view from his bedside was impressive — a thousand acres of worn, low-slung apartment buildings set off by the massed arc of Manhattan, rising from the distance like the Emerald City.
That no friend or family member would ever share this view was another of his mounting misfortunes. Referred to the hospital from a nursing home for fever and weight loss — he was so thin that the skin of his chest would not even hold EKG leads — he had no identified relatives or friends. His personal history had vanished into the maze of health care facilities that had been his home for more than a year. Other than name, Social Security number and date of birth, his life story had disappeared.
Mr. Green was one of thousands of New Yorkers — physically devastated, mentally depleted, without hope of recovery and without surrogates — for whom the prolongation of life at all costs was the only legally sanctioned course of treatment. Even if friends or relatives were found, New York prohibits the withholding or withdrawing of life-sustaining treatment without a signed health care proxy or “clear and convincing” evidence of a patient’s wishes. A “do not resuscitate” order can be put in place by doctors, but only in the absence of identified surrogates and only if resuscitation is considered futile.
Other states, to varying extents, allow family members, friends or guardians to make the decision about life support, even without knowledge of a patient’s prior wishes. A few states grant it to the doctor in the absence of such surrogates. A treatment that preserves a heartbeat but offers no hope of recovery — long-term ventilator support in a vegetative state, say — may be withdrawn. New York permits no such possibility. Physicians not wanting to find themselves at the center of precedent-setting test cases on patients’ rights will treat, treat and treat, no matter the cost to the patient or their own souls.
Mention the idea of withholding or withdrawing medical care from patients who cannot express their wishes, and people get uncomfortable. Advocacy groups use the term “medical killing,” and despite the hyperbole, their concerns are merited. Doctors have no right to judge the value of a life. Many patients want their lives prolonged, regardless of prognosis, quality or need for invasive treatment.
Yet a 2007 study found that doctors in intensive-care units across the country commonly withheld or withdrew life support in critically or terminally ill patients who lacked surrogates, without knowledge of their wishes. Most such decisions were made by a single physician, without regard to hospital policy, professional society recommendations or state law. In other words, doctors are withholding treatment from this vulnerable population, a practice that is neither regulated nor publicly recognized.
Mr. Green’s monetary value cannot be underestimated as an influence on his care. He was a valuable commodity. A ventilator-dependent patient, especially one undergoing the surgical incision necessary for long-term vent support, is among the highest-paying under Medicare’s prospective hospital reimbursement system; his need for skilled care outside the hospital made him a lucrative nursing home patient.
Prognosis is not a factor in this equation. Forever on life support without hope of recovery, Mr. Green would develop pneumonias, urinary infections and other complications, each requiring transfer from the nursing home to the hospital, stabilization and transfer back again. The providers would be reimbursed for each of these procedures.
Extraordinary advances have been made in the treatment of H.I.V. Still, Mr. Green’s dementia worsened, as did his terrible wasting and bedsores. In July, despite a full volley of high-tech interventions, he died, without ever having done anything volitional, never mind eating, talking or making eye contact. His well-intentioned hospital and doctors, fully aware of his dismal prognosis, continued the excruciating process of inserting pencil-thick IV catheters and cleaning fist-size bed sores.
No one asked if Mr. Green wanted these interventions, assuming instead that to do otherwise was both unethical and illegal, and he was treated to death. Modern American medicine owed him a better way.
Joseph Sacco is director of the palliative medicine consultation service at Bronx Lebanon Hospital Center.