“Permanent Vegetative State” Misnamed?
The term “persistent vegetative state” has long been used to describe patients who are awake but show no sign of awareness. In 1994, a task force report endorsed by the American Academy of Neurology said the condition can be considered “permanent” if it lasts 12 months or more after traumatic injury. But recent evidence shows such predictions to be far from certain.
The January 4 Journal of the American Medical Association reports on an 18-year-old woman who went into a “vegetative” state after a car accident, began emerging from the state only 15 months later, and was ultimately sent home from a long-term care facility (though still with severe disabilities) five years after the injury.
The authors note that an earlier study by the Traumatic Coma Data Bank showed 6 of 25 such patients recovering awareness 1 to 3 years after their injury. They suggest “forgoing the use of the term ‘permanent vegetative state’ altogether” in medical practice. Noting that their patient, and others who have recovered after months in such states, have showed little distress at their ongoing disabilities, they comment: “Health care providers and the general public consider survival in a severely disabled state theoretically unacceptable, but it is much easier to conceptualize a ‘life not worth living’ when speaking in generalities and on broad matters of public policy than when making such a judgment for a particular patient” [Childs and Mercer, “Brief Report: Late Improvement in Consciousness After Post-Traumatic Vegetative State,” JAMA, 1/4/96, pp.24-5 at 25]. Life at Risk, January, 1996
Background: How Persistent is the “Vegetative State”?
Over two-and-a-half years ago, an elderly woman named Carrie Coons stunned the medical world. Though unconscious for five-and-half months and diagnosed as being in an irreversible “persistent vegetative state” (PVS), Ms. Coons unexpectedly woke up and began speaking — just a few days after a judge had issued a court order allowing her family to have her feeding tube removed so she could die.
Carrie Coons ultimately died in late November 1991, never having recovered sufficiently to leave the nursing home where she had been cared for while unconscious. But the issues raised by her case live on. Three recent events have newly dramatized the uncertainties of medical decision making for incompetent patients.
On December 17, Barbara Brashers of Missouri unexpectedly woke up from a “vegetative” state that began in October 1989 after surgery to correct a brain aneurysm. When she first became unconscious a CT scan indicated she had 70 percent brain damage. Reportedly she can now speak in full sentences, recognize and converse with friends and family, and even recall events that took place while she was supposedly unconscious. (J. Spivak, “He never gave up — and she came back,” Kansas City Star, 12/20/91).
Nathan Rasmussen, a 17-year-old student in Fairfax, Virginia who fell into a “vegetative state” after receiving head injuries in an auto accident in May, made what his doctor calls a “remarkable recovery” in December and was able to return home for Christmas. Reportedly he can “walk, run, ride a bicycle and carry on a normal conversation” and will soon be able to continue his education (R. Herman, “Fairfax Teen Goes Home in ‘Remarkable’ Recovery,” Washington Post 12/26/91)
Barbara Rozmester of New Jersey was in a coma for 19 days after a blood clot stopped her heart and starved her brain of oxygen on December 5. “The doctors did not offer the family much hope at all,” says a hospital official The 30-year-old woman revived on Christmas Eve and was able to speak, move and open Christmas gifts with her family (“Comatose woman regains consciousness,” Camden Courier-Post, 12/27/91).
These three anecdotes are placed in perspective by the most recent professional study of recovery rates from PVS. The study, published in the Archives of Neurology, followed up 84 patients with a firm diagnosis of PVS. Of these patients, “41% became conscious by 6 months, 52% regained consciousness by 1 year, and 58% recovered consciousness within the 3-year follow-up interval.” The researchers were unable to identify “predictors of recovery from the vegetative state” — that is, there is no established test by which we can tell in advance which PVS patients will ultimately wake up. The data “do not exclude the possibility of vegetative patients regaining consciousness after the second year,” though this “must be regarded as a rare event.” [Levin, Saydjari, Eisenberg et al., “Vegetative State After Closed-Head Injury: A Traumatic Coma Data Bank Report,” 48 Arch. Neurol. 580-585 (June 1991)] Life at Risk, December 1991
Background: “Assisted Suicide: A Disability Perspective”
The National Council on Disability, an independent federal agency whose 20 members are appointed by the President and confirmed by the Senate, issued a position paper March 24 titled “Assisted Suicide: A Disability Perspective.” Excerpts from the Executive Summary of the 51-page report follow:
The benefits of permitting physician-assisted suicide are substantial and should not be discounted. … The Council finds, however, that at the present time such considerations are outweighed by other weighty countervailing realities. The benefits of physician-assisted suicide only apply to the small number of people who actually have an imminently terminal condition, are in severe, untreatable pain, wish to commit suicide, and are unable to do so without a doctor’s involvement.
The dangers of permitting physician-assisted suicide are immense. The pressures upon people with disabilities to choose to end their lives, and the insidious appropriation by others of the right to make that choice for them are already prevalent and will continue to increase as managed care and limitations upon health care resources precipitate increased “rationing” of health care services and health care financing.
People with disabilities are among society’s most likely candidates for ending their lives, as society has frequently made it clear that it believes they would be better off dead, or better that they had not been born. The experience in the Netherlands demonstrates that legalizing assisted suicide generates strong pressures upon individuals and families to utilize that option, and leads very quickly to coercion and involuntary euthanasia. If assisted suicide were to become legal, the lives of people with any disability deemed too difficult to live with would be at risk, and persons with disabilities who are poor or members of racial minorities would likely be in the most jeopardy of all.
If assisted suicide were to be legalized, the only way to ward off the most dire ramifications for people with disabilities would be to create stringent procedural prerequisites. But, to be effective, such procedural safeguards would necessarily sacrifice individual autonomy to the supervision of medical and legal overlords to an unacceptable degree — the cure being as bad as the disease.
For many people with disabilities, it is more often the discrimination, prejudice, and barriers that they encounter, and the restrictions and lack of options that this society has imposed, rather than their disabilities or their physical pain, that cause people with disabilities’ lives to be unsatisfactory and painful….
For these reasons, the Council has decided that at this time in the history of American society it opposes the legalization of assisted suicide… On balance, the current illegality of physician-assisted suicide is preferable to the limited benefits to be gained by its legalization. At least until such time as our society provides a comprehensive, fully-funded, and operational system of assistive living services for people with disabilities, this is the only position that the National Council on Disability can, in good conscience, support. Life at Risk, April, 1997.
Assisted Suicide: Cure for Disabilities?
Supporters of physician-assisted suicide often claim to favor it only for cases of terminal illness. Yet some disability rights advocates, including the group “Not Dead Yet,” have warned that this agenda threatens the lives of people with mental or physical disabilities.
This debate has intensified in recent months, in part due to a December 1997 statement by Faye Girsh, executive director of Hemlock Society USA [see December 1997 Life at Risk]. In the context of a murder trial in Louisiana involving a man who had killed his father with Alzheimer’s disease, Girsh issued a statement on euthanasia and assisted suicide for people with disabilities generally: “Some provision should be made for a situation in which life is not being sustained by artificial means but, in the belief of the patient or his agent, is too burdensome to continue… A judicial determination should be made when it is necessary to hasten the death of an individual whether it be a demented parent, a suffering, severely disabled spouse or a child” [PR Newswire, 12/3/97].
Not Dead Yet vigorously objected to the statement and launched a protest at Hemlock’s Denver headquarters, prompting a “clarification” in the latest issue of Hemlock’s newsletter TimeLines. Hemlock says that the statement was “Girsh’s own opinion” as an individual, and that “press reports” had omitted references making it clear that she was only citing a model proposed by a Canadian expert as one approach among others. In fact the original Hemlock press release, issued through PR Newswire and listing Hemlock’s national public relations director as the contact for media inquiries, does not substantiate either point.
Clearly Hemlock sees this as a sensitive point, and has posted “An Answer to the Disabled” on its Web site. This “Answer” may itself raise new questions. It says that Hemlock “takes issue” with groups like Not Dead Yet regarding “the right of dying patients to seek help from their doctor in hastening their death.” But it proceeds to blur this line — “Indeed, having a chronic, terminal illness generally renders a person disabled” — and declares that “it is up to each individual to determine for themselves when their quality of life is unendurable.” The bottom line: “Disabled persons have every right to protect their interests — but not at the expense of the rest of us” [www2.privatei.com/hemlock/disabl.html].
Jack Kevorkian’s recent assistance in the suicides of two men who were not terminally ill but rendered quadriplegic by accidents –Roosevelt Dawson, 21, in February and Matt Johnson, 26, in May — has sharpened the debate further. Asked about the Johnson case, Ms. Girsh again provided a justification for assisted death in cases of disability: “Many people with severe, disabling chronic illnesses do suffer in many ways worse than people with terminal illnesses because there’s no end in sight,” she says [San Francisco Examiner, 5/10]. Another leading assisted suicide group, Compassion in Dying, has openly expanded its agenda to cover “incurable or terminal illness” [CID fundraising letter, 4/3;].
Hemlock’s “Answer” also claims that “we have no evidence” that “health care professionals are too quick to assume that disabled people are ‘better off dead’.” But at the recent annual meeting of the American Academy of Neurology in Minneapolis, researchers released survey results indicating the opposite. The poll of 1000 neurologists showed that in considering whether to offer a risky, expensive but possibly life-saving treatment, 46% would take the patient’s physical condition into account; 26% would be influenced by the patient’s age, 20% would withhold the treatment based on ability to pay, and almost half would be influenced by the amount of brain damage the patient already had. Among those commenting on the survey was Dr. Kathleen Foley of Memorial Sloan- Kettering Cancer Center, who said many studies show doctors assuming that patients with physical limitations have lives not worth living — even when the patients themselves enjoy life [UPI 4/28]. Life at Risk, May, 1998