End of life care is a core part of medicine

Recently, I continued my crusade to make end-of-life care a basic skill, as I gave the “Introduction to Dying” lecture to third year medical students, for the twentieth time.  For me it is not just about pain control, family meetings and hospice care, but rather convincing physicians that they must change the medicine practiced for the last 100 years.  That medicine says that a doctor can fight all disease, give any treatment, spend every dollar, but, by the way, “I don’t do death.”

It is peculiar to me that doctors so often fail in this critical area of health. After all, people have been dying successfully for millions of years; one would think we would be good at it.  None-the-less patients often die in institutions, while receiving their fifth or sixth failed chemotherapy regimen, in pain and rarely do they hear the words, “you know you do not have to do this, it would be okay to be at home, with your family, and cherish the life you have.”  Why?

The first reason is the culture of cure, which has dominated medicine for almost a century.  Ever since ether, penicillin and the vanquishing of small pox, the default assumption is we can heal anything.  Polio, pneumonia, most heart disease and many cancers have fallen. Doctors get the clear message from medical schools that they do not have permission to “give up.”  Even textbook chapters on diseases that kill 95% of victims end without comment on how to treat all those people, as they die.  It is as if they simply vanish from this earth and as such must vanish from every doctor’s mind.   Neglected in teaching, death is a humiliating failure, and doctors learn none of the skills and attitudes to help patients in the last days of life.

Paradoxically, the fact that the average physician is a passionate and compassionate human being who went into medicine because he really cares, adds to the problem.   It causes doctors pain, to cause their patients pain, emotional or physical. Therefore, in a misdirected attempt to spare suffering, they offer false hope, which may be in the form of incomplete information or a therapy that has the smallest likelihood of benefit.  Many physicians believe that if they give bad news, their patients will give up, melt down, fall apart.  Lacking the training and experience of how to communicate tough news, not understanding that most people are wonderfully strong and can cope with even the most terrible information, physicians provide useless medical intervention and in doing so deprive their patients of the opportunity to live a vital part of life.  They care so much, they give bad care.

Docs contend that the complex issues raised in end of life discussions take too much time, especially with the increased volume and documentation of modern practice.   This is a paper tiger.   The problem of poor terminal planning is decades old, not a product of recent time-volume pressures.  More important, early introduction of palliative planning saves time by preventing the chaos, confusion and anxiety, which occurs when patients and families are suddenly, at the “last minute,” confronted with these emotionally challenging issues.

Physician failures in this area may originate from patient and family blowback.  Patients may attack the disease with inches of Internet printouts, third, fourth and fifth opinion consults and a refusal to consider even the remotest suggestion of “failure.”  Because of our society’s global phobia and lack of intimate experience with death, families may have little personal understanding of end of life events and therefore unrealistic expectations for cure.  This is often combined with a distrust of the medical community, suspecting profit at the core of every recommendation or fearing abandonment.  Can you say “death panels?”  Faced with this onslaught of combative energy and suspicion, physicians default to aggressive complex medical care, substituting another dose of “chemo-fix-a-mycin” for the truth.

Finally, it seems to me that doctors give end of life compassion and care wide birth, because they believe that to practice this type of medicine, you must be a spiritual person.  Physicians confuse the role of the clergy with that of the doctor, feeling that in order to counsel and support their patients a doctor must have a special understanding about mortality and the human condition.  How can a doctor work with the dying if they do not have “all the big answers?”

Physicians fail to understand that end of life care is a core part of medicine and that all their patients really want is honesty, symptom control, and the reassurance that the doctor will not desert them. The physician does not need to understand the purpose of man, God or the Universe; he just needs to understand his role at the bedside.  That is more than enough.

The exciting news, as I gave my lecture today, is that medical schools are now teaching end of life care, and that young doctors today, unlike previous generations, “get it.”   Not only are they perhaps more realistic about the broad issues of life and death, they seem more committed to a holistic view of medicine and their own relationship to patients.   This deeper understanding of their role not only in maintaining health and fighting illness, but also in helping patients find quality at the end of their lives, promises hope for tomorrow.

James C. Salwitz is an oncologist who blogs at Sunrise Rounds.

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  • John

    “This is often combined with a distrust of the medical community,
    suspecting profit at the core of every recommendation or fearing
    abandonment. Can you say ‘death panels?’ ”

    That’s not actually distrust of the medical community. That’s distrust of the government. The concomitant distrust of the medical community only came in when they, in their hasty glee to get into bed with Obama, shoved the best interests of their patients under the bus.

    • Shirie Leng, MD

      The blogosphere (sp?) is alive with posts on this extremely important issue, and the more the better. Let’s make it a responsible national dialogue by taking the politics and shock language out of it.

  • Tiredoc

    It is not the physician’s responsibility to offer guidance about the morality of accepting death. The reason we assign this task to clergy is that our role is one of fighting, not surrender. It is one thing to not offer futile care and false hope, it is another thing entirely to train doctors in the art of “I got nothing, sorry.”

    For those who complain about the overwhelming incompetence of doctors at dealing with mortality, get over it. It’s not our job.

    If you need dealing with mortality, get your clergy or your counselor, or whatever person whose calling and training is dealing with it.

    • meyati

      The PCPs seem to deal with mortality by running you off. I had an acute strep throat for almost 3 months. I finished the antibiotic 2 weeks ago. I went to my PCP-and he told me that “I don’t do cancer.” I sent him a message on the EHR that the oncology radiologist said it wasn’t cancer or radiation related, maybe a virus. He wrote me back that I was inappropriate in stating the reasons that I was again begging for a test to see if I had a bacteria. He also said that he talked to me about chronic conditions-and get over it. I finally found an Urgent Care that did medicine 101-run a strep test. MY GOAL—TO TRY TO GET MY ENERGY LEVELS BACK UP TO WHERE THEY WERE WHEN I FINISHED RADIATION THE SECOND WEEK OF FEB, 2013.

      • Tiredoc

        The lack of energy and the strep throat are symptoms of the same thing, suppression of your immune system by treatment. In can take up to 18 months for the energy level to come back without intervention.

        The strep has colonized your tonsils. As you have been through cancer treatment (regular visits to bacterial nirvana), the chances that the strep that you have is NOT resistant to practically everything is near zero. You need to have it cultured for sensitivity and medicate accordingly.

        As for the energy level, as long as your cancer isn’t prostate or penile cancer, testosterone does an excellent job of improving post-radiation mental fog and energy level. This applies to both men and women. The limited evaluation to date shows a possible survival benefit as well. Levels are easy to check.

        As for PCPs and cancer patients, all I can say is what I do. It’s not my job to treat the cancer, but it’s not like being the doctor for everything else is a vacation. Chemotherapy and radiation play havoc with every organ system. Its purpose is to kill 90% of the cancer and 50% of you with each treatment. If the 50% doesn’t bounce back, then everything else is moot.

  • bill10526

    Excellent post.

    My ex had a patient (She was a home health aide, and a very good one.) who could sit in a chair and react to “Joe, you owe me money.” But during the couple of months my ex worked with him, he forgot how to chew and swallow food. My ex would prepare a milkshake like concoction that she put into him through a feeding tube. Some time later she would change his diaper. Yet Joe’s wife insisted on continuing this absurd condition.

    • Jane Galt

      So you reckon she should have just killed him?

      I think Hitler had a term for people like that, “useless eaters”. Is it really a medical provider’s role to decide who the “useless eaters” are and then make sure they’re killed?

      • bill10526

        Yes, by stopping the feeding as in The Terri Schiavo case. Sadly, some people decide to throw in the towel of life by just refusing to eat. That process takes longer and is more uncomfortable than such people think.

        Since you brought in Hitler, there were people who starved to death after camps were liberated because they were damaged to the extent of being unable to eat. I remember reading that they were joyful for the liberation even though it was too late for them. Watching them die must have been hard on our soldiers.

  • katerinahurd

    Do you suggest that medicalization of the process of dying has to be incorporated into the practice of medicine during living phase of life? How do you accommodate the young age of your audience who are 3rd year medical students, anxious to practice their medical skills? Do you realize that when talking about the end of life you might be referring to the parents of some of these students? Do you have any data that indicate the number of future physicians that will become involved in geriatrics?

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