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Euthanasia:  The Disability Perspective on the Right to Die Movement

The Challenge:

California's legislature has taken on an emotional debate over whether euthanasia statutes should be enacted that would allow physicians to professionally advise and technically assist terminally ill patients to end their lives. The U.S. Congress has also joined the reform chorus, passing 'The Pain Relief Promotion Act' last fall.

The focus of regulatory activity has been to discern the point at which pain and suffering become so severe that legal prohibitions on suicide are inappropriate. Any loosening of such prohibitions is terrifying for individuals who have fought for years to show that they are not 'better off dead' despite the very physical limitations which euthanasia statutes would consider life-ending.

Persons with disabilities have always struggled for control of their lives. Since the 1970's, people with severe disabilities have banned together in the Independent Living Movement, striving to live outside of institutions that might hasten their demise. People with mental illness have fought against exposure to unwanted lobotomies or forced treatments such as those depicted in Ken Kesey's 'One Flew Over the Cuckoo's Nest.' All have worked diligently to foster self-esteem and instill the vital will to live in a society that views disability as a fate worse than death.

Thus, legalization of euthanasia is an important referendum on the social status of the disabled in America today.

Background

Euthanasia, the intentional killing of a person for compassionate motives, includes both direct actions, such as lethal injection, and passive ones such as withholding necessary treatments.

For years California has had an active euthanasia debate. In 1992, Proposition 161 had provisions to allow either administration of lethal medications by a physician or self-administered lethal medication by the patient. In 1995, two identical measures AB 1080 and AB 1310 were introduced, modeled after Oregon's Death with Dignity Act. All failed.

In 1999, Assemblywoman Dion Aroner (D-Berkeley) authored AB 1592 designed to allow a person with less than 6 months to live, deemed competent by a qualified medical professional, to request 'end-of- life' treatment. Currently, it is a felony for any person to deliberately advise or encourage another person to commit suicide.

Although CFILC and many national disability organizations are unified in their opposition to any law which would make it easier for a disabled person's life to be ended, we believe it important that persons with disabilities are conversant with the principles in favor of euthanasia as well as the prevailing arguments against it.

Euthanasia In Focus: The Pros and Cons

Pros

The Libertarian Right to Suicide

The key argument for euthanasia is that all Americans have a constitutional right to life, and that control of life includes the authority to end it. Prohibitions on suicide are viewed by many as a violation of basic constitutional freedoms and governmental interference.

"Dignity": Avoiding the Disintegration of Bodily or Mental Functions

Many, when newly diagnosed with severe diseases or debilitating illnesses, recognize that they will eventually need end-of-life (palliative) care. They may seek to end their lives before they endure physical discomfort or lose control of their faculties. Often they wish to avoid being seen in a diminished capacity, regardless of their ability to cope with new physical obstacles. Euthanasia is a way to protect the memory of their able-bodied life.

Cost-Benefit: Death as the Alternative to Expensive Medical Treatment

Many with severe disabilities wish to avoid passing on the costs of expensive medical care to their family and loved ones. Not wanting to pose a financial burden, they choose death as a cost-effective alternative to medical care that may not improve their quality of life but can prolong it. Next to pain and suffering, this is the second major reason why people decide to end their lives.

Cons

Disabled Enough to Die: The Inherent Slippery Slope of Euthanasia

Although Euthanasia statutes currently in question are aimed at eliminating bureaucratic red-tape that keeps terminal patients from painlessly ending their lives, there is reason to believe that once the gate is opened, other lives will be at risk. Over time statutes may give rise to broader and less stringent laws that provide people with various non-terminal disabilities, excuses to end their lives. CFILC recognizes that as with other medical policy debates, once previously outlawed procedures are legalized, the tendency is for the affected group to expand. The risks are immediate.

In a 1993 interview with Time Magazine Jack Kevorkian, the patriarch of mercy-killing said that severe disability is an insufferable condition meriting death, stating he would debate his critics who would '. . . allow themselves to be strapped to a wheelchair for 72 hours so that they can't move, and they are cathetarized and placed on a toilet and fed and bathed.' Of course, this describes the condition of millions who are challenged by old age or disability, most of whom view their lives as worth living.

As "Not Dead Yet" member Dusty Hogue said, the elderly and disabled aren't queuing up to commit suicide, and social policies that make the choice easier are threatening. "I've been a quadriplegic a lot longer than 72 hours . . . People don't understand the social oppression. They assume they'd rather be dead than be quadriplegic like me. That's what I used to think before I experienced and understood the real issues. If Kevorkian were assisting the suicides of any other majority group, he'd have been in jail long ago."

In a society that still demeans disability, it is easy for those newly challenged by disability to believe their lives would be unbearable. Public disregard for the disability community is hard to ignore. Widespread discrimination, abysmal employment levels (25%), inaccessible transportation and public housing, neighborhood exclusion and frequently abusive family and nursing home care all serve as outward manifestations of society’s disregard for people with disabilities. But none of these challenges justify death.

Many disability advocates take the position that legalizing assisted suicide and active voluntary euthanasia today will lead to active involuntary euthanasia tomorrow.

Eliminating Burdens: The Need for Non-Euthanasia Reforms

The chronically and terminally ill often feel themselves to be a burden to others. Many, however, are not tired of life and do not want to die. But if assisted suicide and active voluntary euthanasia were readily available, they might feel obligated to opt for death. Relatives or other caregivers who feel burdened may consciously or unconsciously exert pressures.

If the burden of palliative care is an argument in favor of legalizing euthanasia, then that burden is the problem that must be fixed. Indeed, several problematic policy areas directly affecting disabled and elderly populations contribute to a public 'will to die.' The inadequate funding for palliative care and pain management and governments' intransigent reliance on nursing homes all contribute to the despair felt by many who reach old-age, endure frustrating physical limitations, or are afflicted with debilitating conditions.

The Duress Test: A Lie to Die

Euthanasia poses a perplexing problem with regard to the capacity of a patient to consent to suicide. Most notably: isn't a person who wants to kill himself always under duress?

We can never be absolutely sure that we have the patient’s voluntary and informed consent. A request made prior to an illness or injury in the form of a living will cannot be considered binding because it is insufficiently informed. On the other hand, if a request is made when an individual is suffering excruciating pain or delirium, it is arguable that the pain and drugs prevent him from making a fully rational decision.

Privacy Concerns and The Profit Motive

Finally, if killing is institutionalized as a medical procedure, there is no certainty we will be able to control how it is carried out. Regulatory measures to secure against abuses will require an open system, but privacy requirements make such a system implausible. The legally protected physician-patient relationship requires sealing of all records of treatment and patient condition. Furthermore, a climate in which managed care systems are driven by economic considerations increases the real risk that 'legal' killing will expand and the profit-motive will be introduced into the euthanasia equation.

While CFILC acknowledges the basic right of each individual to control his or her life, the conditions in America today tell us that euthanasia is not an individual choice at all. The choice to end life because of a disability threatens the social status, indeed the existence, of people with disabilities everywhere. We encourage the state and federal government to improve funding for palliative care so patients with access to passive means of euthanasia don't make decisions based on financial needs. Elected leaders must address the many environmental barriers to disability that might encourage despondent elderly and disabled populations to choose death for unsound reasons. Attention to such problems as the monopoly of low-quality nursing care, low pay of personal assistants, the current inadequacy of pain management and unavailability of hospice care could improve quality of life for the severely disabled and terminally ill eliminating the demand for euthanasia.