Deciding who lives and who dies

QALY (Quality Adjusted Life Score) is the methodology used by the United Kingdom (UK) to determine whether or not an individual is eligible to receive treatment for an illness.  The formula reduces the decision making to a dollars and cents evaluation.  In short, if it costs too much, the patient is denied care.

Fortunately, we have not yet reached the point where our own health care is decided purely on the basis of cost.  Or have we?

As legislators and the public have debated health care reform, claims and counterclaims by each side that the other is trying to scare the public into supporting their position have only served to confuse the issue.  However, comments made by Robert Reich, former Labor Secretary in the Clinton administration, now an Obama economics advisor, are worth noting. While campaigning for the Democratic presidential nomination at the UC Berkeley campus in 2007, he said:

I’m so glad to see you, and I would like to be president. Let me tell you a few things on healthcare. Look, we are we have the only healthcare system in the world that is designed to avoid sick people. That’s true. And what I’m going to do is I am going to try to reorganize it to be more amenable to treating sick people, but that means you, particularly you young people, particularly you young healthy people, you are going to have to pay more.

And by the way, we are going to have to, if you are very old, we’re not going to give you all that technology and all those drugs for the last couple of years of your life to keep you maybe going for another couple of months. It’s too expensive. So we’re going to let you die.

Also I’m going to use the bargaining leverage of the federal government in terms of Medicare, Medicaid—we already have a lot of bargaining leverage—to force drug companies and insurance companies and medical suppliers to reduce their costs. What that means, less innovation and that means less new products and less new drugs on the market which means you are probably not going to live much longer than your parents. Thank you.

Secretary Reich’s honesty is refreshing.  However, since honesty and transparency are hardly hallmarks of the Obama administration and Congress, we are forced to read between the lines in an effort to determine their true intent for reforming America’s health care system. Is it now the prevailing attitude that the government intends to let old people die because caring for them is too costly? The Brits’ QALY system is used to make life and death decisions about which patients will receive care or medicines.  The decision-making process is reduced to a formula for rationing health care based on age and the estimated costs of providing medical treatment and/or services, including prescription drugs.  (see http://www.york.ac.uk/inst/che/pdf/mathprog.pdf).

David Lee, a GE health economist, explained QALY as “…Quality adjusted life year, a year of life adjusted for its quality or its value.  A year in perfect health is considered equal to 1.0 QALY.  The value of a year in ill health would be discounted.  For example, a year bedridden might have a value equal to 0.5 QALY…We try and evaluate benefits and costs.  The way we measure that is a QALY, quality adjusted life year…We try to figure out what the QALY for certain technologies are. Is the gain in QALYs to the gain in costs worth it? The UK has something like £30,000 per QALY.  If the technology can deliver at less than that they’ll pay for it, it it’s more than that they won’t…What it’s telling technology developers is that if you’ve got a high cost with low medical benefit product your chances of getting into market are lower.  If you’re a cancer patient that stands to benefit from an additional three months of life that will cost the NHS (National Health Service) $70k is it worth it or not?”

This places a monetary value on human life. Decisions are made based on life expectancy.  If a particular treatment isn’t determined to be worth the cost, care is denied.  The rationale is that, while these may be difficult decisions to make, they are necessary. The thinking is that there has to be some way to measure costs in order to keep them from getting completely out of control. On the surface, that may make sense, unless, of course, you’re the one who needs the treatment.

Once again, the admonition, “be careful what you wish for,” applies.

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.

Comments and observations about disabilities that provide us with revealing insights:

  • Death is no more than passing from one room into another. But there’s a difference for me, you know. Because in that other room I shall be able to see…No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit…”I also dislike people who try to talk down to my understanding. They are like people who when walking with you try to shorten their steps to suit yours; the hypocrisy in both cases is equally exasperating.” – Helen Keller (1880-1968), born blind and deaf.
  • “The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus–the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.” – Helen Keller
  • “Science may have found a cure for most evils; but it has found no remedy for the worst of them all — the apathy of human beings.” – Helen Keller
  • “Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too.” – Lawrence Bixby, author of over 40 books.
  • “We all have a disability of some kind; all are lacking in one way or another. Saul has an injury to his leg. What if his personality was deformed? How much worse if his soul was lame? Preachers or teachers look for the good in all of us. (Bless them for doing so.) I don’t see a cripple. I haven’t met anyone yet who isn’t handicapped in some way. So what’s the big deal? Don’t hide your deformity. Wear it like a Purple Heart.” – Georgiann Baldino, author, co-founder of cancer support group.
  • “I discovered early that the hardest thing to overcome is not a physical disability but the mental condition which it induces. The world, I found, has a way of taking a man pretty much at his own rating. If he permits his loss to make him embarrassed and apologetic, he will draw embarrassment from others. But if he gains his own respect, the respect of those around him comes easily.” – Alexander de Seversky (1894-1974), aviation pioneer.
  • “But pain… seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?” – Lois McMaster Bujold (1949-), science fiction writer.
    “The healthy and strong individual is the one who asks for help when he needs it. Whether he’s got an abscess on his knee or in his soul.” – Rona Barrett (1936-), Hollywood columnist, author, TV
  • “Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” – Neil Marcus (1954-), poet, playwright, disabled from age eight.
  • “Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.” – Susan Wendell, Ph.D., feminist author, suffers with chronic fatigue syndrome.
  • “For me, the wheelchair symbolizes disability in a way a cane does not.” – Annette Funicello (1942-), actress, suffers with multiple sclerosis.
  • “A true friend knows your weaknesses but shows you your strengths; feels your fears but fortifies your faith; sees your anxieties but frees your spirit; recognizes your disabilities but emphasizes your possibilities.” – William Arthur Ward (1921-1994), author, poet, columnist.
  • “It (hepatitis C) will kill four times as many Americans as AIDS will over the next decade. I feel that whatever kind of disability God has given me, as an entertainer and as a public figure, it is so I can be a representative for others.” – Naomi Judd (1946-), singer, entertainer, mother of actress Ashley Judd and singer Wynonna, suffered with hepatitis C.
  • “Americans believe that people should work hard and get ahead on their own, but when disaster strikes and they need help with retirement or disability, Americans as a whole should come to their aid.” – Jacob Hacker, Ph.D. (1971-), professor of Political Science, UC Berkeley.
  • “Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” – Martina Navratilova (1956-), world champion tennis player.
  • “Congress acknowledged that society’s accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” – William J. Brennan, Jr. (1906-1997), Associate Justice of U.S. Supreme Court.
  • “The only disability in life is a bad attitude.” – Scott Hamilton (1958-), American figure skater, four time Olympic champion.
  • “I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness – I want to turn my disability into ability.” – Susan Boyle (1961-), Scottish singer.
  • “It is a lonely existence to be a child with a disability which no-one can see or understand, you exasperate your teachers, you disappoint your parents, and worst of all you know that you are not just stupid.” – Susan Hampshire (1937-), English actress, TV star. “It was ability that mattered, not disability, which is a word I’m not crazy about using.” – Marlee Matlin (1965-), American actress, deaf (from 18 months of age)

© 2009 Harris R. Sherline, All Rights Reserved

Read more of Harris Sherline’s commentaries on his blog at “www.opinionfest.com

The Examiner

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