When we love someone, we want for them the best. We fight for and with them. We push them to attack disease. Is it possible that our very love can cause suffering? Can we mistake our eternal love for each other with a futile fight for immortality? Does our caring crush the ones for whom we care?
In a fascinating article last week, The Wall Street Journal followed the terminal case of 41-year-old Scott Crawford who suffered through a year of hospital care. Crawford received a heart transplant, which might have been successful. However, a long complex course including amputation of a leg, removal of a gangrenous gallbladder, prolonged artificial support and months of pain, ended in death. The Journal reviewed this case from the standpoint of his doctors, nurses and family. They also added up the butcher’s bill, which approached 3 million dollars. This put Mr. Crawford fifth on the list of the most expensive Medicare patients for 2010.
The WSJ article points out the tremendous dollar cost of cases like Mr. Crawford’s and its burden on America. Medicare expenditures totaled $486 billion last year or 13.5% of the total Federal budget. While only 6.6% of the people who received hospital care died, they consumed 22.3% of Medicare costs. Of the ten costliest people on Medicare in 2009, eight of them were not senior citizens, but patients on disability under 65 years old.
Cases such as Mr. Crawford are common. At any moment almost every intensive care unit in the Country has several patients for whom complex expensive care is being administered which will fail. This massive national financial weight threatens to drag all of us down. The tragic waste cannot continue. Still, for me, money is not really the problem. The issue is rather one of horrible human suffering.
We have developed highly sophisticated health care, which is out of balance with an immature social system. There is no limit to the medical torture that we can do to ourselves, and loved ones. However, we have not yet developed the educational, emotional and cultural maturity to know when to stop. It is like giving a 10 year old the keys to a Ferrari. He probably can reach the pedals, but on the open road, he is likely to wreak havoc. With all our wealth and scientific innovation, we often lack the ability to put potential disaster in perspective.
This immaturity is both societal and personal. First, the science of medicine continues to change so fast that we cannot assimilate it into our worldview. Do you really understand the affects of $1000 whole gene sequencing, Proton Beam Radiation, or $70,000 automatic defibrillators? How about universal electronic medical records mixed with social media? Chemotherapy which extends life for $45,000 a month? I do not and my head spins as I try to find solid ground.
Second, and central to the problem, is that as a society we lack experience with disease and death. For the past 50 years, sick patients have been isolated in hospitals and nursing homes. Little cultural experience with illness remains. For thousands of years we taught our children about this difficult part of life by taking care of the sick in our homes. Now, grandma is shuffled off to an institution and we teach five year olds about death by buying them a goldfish. What happens when you die? They flush you down the toilet.
The imbalance of rapidly evolving technology with lagging cultural health experience results in false hope and needless suffering. Because we have not personally seen the horror that is possible, we push ourselves and our loved ones beyond compassion’s line. We demand that science torture those we cherish, because we have not been there before.
A remarkable contrast occurs when a physician encounters a family who has developed the kind of medical maturity to provide balance. The family listens and discusses what the doctors recommend. They allow reasonable interventions. Nonetheless, they are prone to statements such as, “I do not want her to suffer and end up on a machine like my father did.” Experience teaching and talking.
If we are going to protect ourselves and the ones we love, we must accept that life is finite, but that the possibilities for torture are not. Patients and families need to have direct and honest conversations with their doctors about what can truly be achieved. We must differentiate the false “hope” that we will live forever, from the real “Hope” that we can live our lives better, however long that life may last. A mature health care system will provide the best in technology held gently in the hands of mercy.