Kit Costello, RN
Imagine a forty two year old man in a severe car accident that renders him comatose for 16 months. A feeding tube is inserted for hydration and nutrition. The patient regains consciousness and some functional abilities though his deficits render him severely disabled. He can maneuver a motorized wheelchair on command, hand a ball to his therapist 80 to 100 percent of the time and show appropriate emotional responses such as kissing his mother's hand. His wife requests that the feeding tube be removed and he be transported to a nursing home where he will die from dehydration. The hospital ethics committee agrees. The patient's mother and sister intervene through the courts and an injunction is obtained to prohibit the dehydration.
It's a real case. The man is Robert Wendland and the hospital is Lodi Memorial in California's Central Valley. The California Supreme Court is now scheduled to hear the case and decide whether the lives of conscious disabled people who cannot make their own medical decisions can be intentionally ended.
This and other cases are discussed in a book by Wesley J. Smith titled Force Exit. An attorney and opponent of euthanasia and assisted suicide, Smith argues that these and other legal test cases and some ballot initiatives are creating a slippery slope that will eventually legitimize the killing of marginalized people-the poor, disabled, mentally ill and others- in the name of a "poor quality of life".
To bolster this view, Smith recounts the post World War I euthanasia and eugenics movement in Germany where between 1939 and 1945 more than 200,000 people were euthanized. This was done with the active participation of doctors and nurses who had accepted a new "quality of life ethic", a distinct departure from the equality of life ethic. Of these thousands whose lives did not represent a "quality" existence, they included the cognitively or physically disabled, people with mental disease, infants born with birth defects, the senile elderly and even severely wounded German soldiers. Smith presents a chilling side-by-side analysis of the 1920 book by two respected professors Alfred Hoche and Karl Binding (Permitting the Destruction of Life not Worthy of Life), and current arguments advanced by proponents of the euthanasia and assisted suicide. The German academics' pre-Third Reich work ignited and legitimized the early euthanasia/medicalized killing movement in Germany. Hoche eventually turned against the euthanasia movement after one of his relatives became a victim.
I wish I had read this book in 1992 when I served on CNA's Legislative-Regulatory committee. CNA was asked to consider supporting California Proposition 161, a euthanasia ballot initiative, that was ultimately rejected 54-46 percent by the voters. In discussion, I and others pointed out that a minimum standard to prevent abuse would be universal access to health care. Unless treatment was equally available to all for conditions like depression, mental illness and terminal illnesses (complete with effective pain control and hospice services), it would be dangerous to endorse any such measure.
Medically uninsured or underinsured people could conceivably choose assisted suicide to spare their families the expense of a long illness. Or, their families might persuade the patient to "do the right thing". We ended up not supporting the measure, but many questions remained that Forced Exit goes a long way in answering.
One question that is answered is defining the time frame, court cases and medical ethics panel pronouncements by the AMA and others that redefined tube feedings as "artificial nutrition". In this way, tube feedings went from being considered an element of humane care (like shelter, cleanliness and comfort) to a status of medical treatment. I remember going to an ethics seminar in 1982 where this was discussed. At the time I wondered how providing fluids and calories is any different than turning a patient or suctioning their airway. After all, wouldn't the patient reach for food, change position or cough and clear his or her throat if he or she was able? Wouldn't we consider not turning a patient to intentionally cause death by tissue necrosis and sepsis an appalling inattention to basic needs?
In the book, Smith details the "food and fluid" legal cases as well as case studies of real people where death by dehydration was advocated or permitted. Some of these patients were not comatose nor in a persistent vegetative state (PVS). When this shift in ethical rationalization occurred, the withdrawing of food and fluids was to be strictly applied to those with PVS.
The Wendland case shows how the boundaries are shifting. Smith maintains that this environment of redefining what is medical treatment and under what conditions it can be withdrawn, is contributing to the slippery slope of acceptability of both assisted suicide (physician and otherwise) and medicalized active euthanasia.
Smith details the evolution of the practice of euthanasia in the Netherlands case. In a country with universal healthcare, it could be assumed that there would be protections and safeguards. In reality, studies have revealed even then abuses occur. The Remmelink Report detailed Dutch euthanasia deaths in 1990 - 11,141. Of these, 5,981, or more than half, were involuntary! In other words, patients did not consent yet physicians and others actively euthanized people. Some of these patients were conscious and capable of objecting.
Smith maintains that current lack of access to healthcare and cost incentives that allow profit from undertreatment are a dangerous foundation for any further liberalization of euthanasia via case law and legislation in the United States. In Forced Exit, he outlines several other deficiencies in our healthcare system that push people toward assisted suicide such as insufficient knowledge of treatment and pain control therapy, lack of resources for the disabled to achieve quality lives/ independent living and poor recognition and treatment of depression.
As nurses it behooves us to question the euthanasia and assisted suicide movement in the context of our obligations as healers and helpers, the surrounding social policy issues regarding access to health care, and protection for disabled and other vulnerable people. For more on this provocative book, see page ____.