I've been teaching a course called "Ethics of Health Care" for eight years. My students grapple with scenarios and ethical dilemmas by applying principles, theories and concepts in bioethics to support or refute the motivations of the people involved and/or their own positions. We look at everything from past cases of notoriety, like Terri Schiavo, to the status of abortion and other controversial topics.
What is at the core of these ethical dilemmas is usually life versus death. Terri Schiavo remained in a persistent vegetative state for 15 years because her parents used the legal system to keep her alive. The fact she was in a persistent vegetative state was not horror enough. Death was the horror.
We have two driving forces in our dominant culture: the terror of facing our own death and our quest for immortality. The quest for immortality is, in a way, a solution to the mortality problem. We build things that will never disintegrate, that will never go away. We conduct ourselves as separate from nature and in so doing, we destroy nature. We have taken this one step further. We ourselves want to be immortal so we refuse to die when it is our time to die. All of our scientific ingenuity is being poured into this quest.
When I wonder why we feel such terror I am drawn to an old story that is at the heart of our Judeo-Christian culture, and that is the story of Genesis. Human beings were created, so the story goes, in the image of God to rule over the natural world. We started out as separate from the natural world. And, if that's not harsh enough, the God portrayed in the Bible is a punitive God and the very first punishment bestowed was taking away our immortality. And what was the crime? Disobeying God and eating from the tree of good and evil to obtain wisdom — to be like God, knower of all things.
What chutzpah! Mortality was our punishment yet we insist that it be otherwise. We rile against God. You can say that we have turned the tables on God and refuse our mortal fate. We have intelligence, after all, and the solution is technology. Our terror and our quest for immortality most assuredly plays out in our health care system and in end-of-life decision-making.
We find ourselves in a patient-driven health care system with autonomy leading the way and paternalism taking a back seat. The patient is in fact a consumer, the doctor a provider, and health care is driven by fear and profit. Once upon a time, doctors were assumed to know their business, which is to say, the disease process. Paternalism came from the notion that a doctor, any doctor, knows more than the patient when it comes to diagnosis, prognosis, morbidity and mortality.
Nowadays, it's the consumer who calls the shots and we call this autonomy; but, decisions are not based on medical knowledge or an understanding of one's physical condition.
The consumer bases his or her decisions on the will to live, the terror of dying and death, and the imperative to survive at all costs. The provider acquiesces to the demand for treatment as long as it is covered by health insurance. The provider steps in for God and guarantees life. Treatment decisions are made regardless of social constraints or the hierarchy of needs as a society. When we are dying, we demand to live longer, and when that is a merciless fate, we expect to be put out of our misery.
Can it be otherwise? Was there ever a garden of Eden?
Deborah Golden Alecson is a death, dying and bereavement educator and speaker who resides in Lenox. She is the author of three books that deal with her personal loss. Learn more at deborahgoldenalecson.com.