The Crushing Cost of Caring

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.


  • Eileen Burns McNally, RN
    This is one of the best posts I have ever read on this subject which is one that I feel passionately about. It is so sad to me to see families prolonging dying and not taking advantage of saying all they have to say because they are too busy "making believe" that things will get better. My 97 year old mom died in Feb with very little intervention but with all her children, grandchildren and great-grandchildren being able to fill her room and her last days with lots of love and laughter, too. I know in my heart that we did the right thing for her. Americans are afraid of death and have some bizarre idea that they just didn't get the memo....we all die...some die better than others. We owe it to those we love to make it as painless and beautiful as we can
    • James Salwitz, MD
      Thank you very much for your comment. My mother too died at home, overlooking the waterway she loved so much. It was a powerful lesson for me and for our family. jcs
  • Debra Dunn
    Dr. Salwitz: Your blog is new to me, I found you on WebMD (and glad I did). Your comments on futile end-of-life care and suffering are very insightful and accurate. I am a proponent of living wills and family discussions while pts are healthy to avoid these horrific scenarios. It is inevitable (death) --so we need to prepare; physicians and nurse practitioners (of which I am one) should encourage these discussions-- to promote autonomy even in the face of death. DD
    • James Salwitz, MD
      Thanks for your comment. I too believe that the earlier patients and families take control the more likely they are to achieve quality in their healthcare and in their lives. jcs
  • Thank you for this terrific posting and your blog in general. I plan to read you regularly! I was particularly struck my your observation that "as a society we lack experience with disease and death." Our present cultural immaturity leads to many unintended consequences, as you so eloquently describe. As a fellow oncologist--and a family member of a relative whose immature understanding of illness and fears of death led to many less than optimal decisions and more suffering--I couldn't agree more. Thanks again.
    • James Salwitz, MD
      Thank you for the feedback from this side of the bed rails. The support is appreciated. If you have other thoughts or observations in the future please do not hesitate to chip in. Take care and keep up the good fight, jcs

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