Deciding who lives and who dies – Part II
In a society that bases life and death decisions on cost, such as the QALY system in Great Britain, it’s easy to see how it’s possible to deny health care to people who have the potential for great accomplishments.
For example, Helen Keller, who was born blind and deaf, through the patience and perseverance of her nurse and companion, ultimately became a world renown figure for her accomplishments in helping the handicapped. However, my guess is that if she were born at a time when the health care industry was making cost-based decisions about who should live or die, she would not have been spared. She has been quoted as saying, “I dreamt of heaven the other night, and the pearly gates swung wide. An angel with halo bright, ushered me inside. And there to my astonishment, stood folks I’d judged and labeled as quite ‘unfit,’ of ‘little worth,’ and ‘spiritually disabled.’ Indignant words rose to my lips, but NEVER were set free, for EVERY face showed stunned surprise, not ONE expected Me!”
Another person who probably would not be with us today when the health care system restricts access on the basis of cost is one of world’s greatest physicists, Stephen Hawking (1942-). Hawking has suffered for approximately 40 years with ALS (amyotrophic lateral sclerosis), more commonly known as Lou Gehrig’s Disease. The list of his accomplishments is too long to detail here, but he has authored a number of important contributions to the fields of cosmology and quantum gravity, including “black holes.” Hawking developed ALS in his youth, while attending Cambridge, and has become increasingly paralyzed over the years, to the point that today he is almost completely immobile and can no longer speak. He has been quoted as saying, “It is a waste of time to be angry about my disability. One has to get on with life and I haven’t done badly. People won’t have time for you if you are always angry or complaining.”
If the British QALY system for evaluating the worth of individuals had existed at the time Stephen Hawking first became paralyzed, would he have received the care and support that has kept him alive for the past 40 or 50 years, or would the cost of his care resulted in the conclusion that it was simply too expensive?
There is a long list of people who have made significant contributions to society and who might well have been denied health care on the basis of cost under the British QALY system or a similar policy that could potentially become the method for health care decision-making in America under the type of health care reform that the Obama administration has been pushing. Following are just some examples:
Christopher Reeve (1952-2004), actor: Was crippled as a result of a horse-riding injury and dedicated the remaining years of his life attempting to harness the power of medical research to enable people with spinal cord injuries to recover and walk again.
Ray Charles (1930-2004), musician: Became blind at age seven, learned to play the piano and went on to be one of America’s greatest entertainers.
Jose Feliciano (1950-), Stevie Wonder (1950-) and Ronnie Milsap (1945-), composers and musicians: Were all born blind and overcame their handicaps to become leading song writers and entertainers.
Franklin Delano Roosevelt (1882-1945), U.S. President 1933-1945: suffered with Polio, which he contracted in 1921.
Louis Braille (1809-1852), inventor of the Braille System of reading and writing. Became blind at age 3 as a result of an accident.
Anne McDonald (1961-), Australian author and activist for the rights of people with communication disability. She developed cerebral palsy as a result of a birth injury. Diagnosed as having severe intellectual disability at the age of three she was placed in an Australian government institution for people with severe disabilities and lived there without education or therapy for eleven years. Anne wrote her story in Annie’s Coming Out, a book she co-authored with Rosemary Crossley in 1980 (the film Annie’s Coming Out based on the book won several Australian Film Institute awards and was released in the U.S. under the title Test of Love).
Hubert H. Humphrey (1911-1978), two-term Vice President of the U.S. and U.S. Senator, is credited with saying: “The moral test of government is how it treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadow of life . . . the sick . . . the needy . . . and the disabled.”
Important words everyone should keep in mind during the current debate about reforming America’s health care system. If the changes lead to health care rationing and decision making about who lives and who dies based on monetary considerations, we will not have moved forward but backward in our quest for fairness and equity.