Does your doctor get it?

Posted by on Apr 18, 2016 in Cancer Care, End of Life, Featured | 5 comments

Does your doctor get it?

Among hospice staff, it is called “getting it.” One says, “He doesn’t get it,” “I think she gets it,” or “they definitely get it.” It is a little hard to define, but as with pornography, you know it when you see it.   Nonetheless, given the importance of “getting” good end-of-life care, let us take a moment to try and explain.

The 92-year-old patient is bleeding into her head, but has blood clots in her lungs. She suffers from advanced heart disease and has been on both a respirator and dialysis for three weeks. She is failing as, like flimsy rowed dominos, vital systems collapse. Her chance of surviving the hospitalization is less than one in a hundred.

Despite death lurking, just another complication away, this nonagenarian is treated with maximal, aggressive, unrestrained care. She is not only full code (when her body stops they will pound on her chest and pour joules of electricity into her broken heart), but she is receiving over 30 different medications, a list which grows as medical complications breed new catastrophes, everyday.

The doctor running this case does not “get it.” He acts as if he does not realize that everyone dies. He has completely failed to provide merciful, honest care and instead has set up a plan to maximize suffering, compound confusion, amplify futile intervention and guarantee out-of-control costs that will bankrupt the family. While, the patient and family bear the responsibility for key life decisions, the “healer” has set up a ridiculous, unethical and incredibly common system of care.

Other doctors are just beginning to “get it.” This rapidly expanding group is the basis for the increasing use of expert end-of-life consults. They are halfway there; they understand that everyone dies, but are not sure what to do about it.

Ellen has metastatic lung cancer and came to see me to prescribe medical marijuana. The cancer has spread and between the disease and chemo-neuropathy, she is having a great deal of pain. Her doctor does not know how to keep her comfortable and therefore has not set up a long-term plan.

To his credit, the doc has referred Ellen not only to me, but also to hospice for consult regarding an end-of-life plan. She is still “full code,” meaning no absolute hard line in the sand has been drawn to prevent excessive care, but he has started her in the right direction. He “gets” that mercy at the end-of-life is important and is using the specialty of Palliative Medicine to compensate for his own limits.

The other night I got a page from a patient of one of my partners. When I brought up the file in our electronic medical record, I found that the patient is a 68-years-old ex-cop with kidney cancer, a small amount of which has spread to one lung. While this cancer is a chronic and eventually fatal disease, his short-term (months, even years) prognosis is quite good.

What interested me, was the notation in his file that said, “Patient is DNR (do not resuscitate) and does not want extraordinary measures of life support.” This is a notable order because this patient feels completely well; in fact he was calling from California, while traveling.

This is a doctor who “gets it.” When it was discovered that this patient has a lethal disease, the oncologist led a serious and frank discussion.

“You have a cancer for which there is no known cure. You only have a very small amount of cancer, but it is now chronic. We have exciting new therapies, which should help. However, you will eventually die from this cancer. You and your family need to consider what you want done when the disease gets worse. Is there a line you would not cross? Is there therapy you do not want? For example, would you want to be put on a breathing machine or have CPR? This is your decision, and we will support whatever path you follow, but it is important that you consider your choices.”

“Getting it,” means that patients receive the honesty, confidence and respect to control their own lives. Not false hope, but the chance to cope with one of the hardest realities of life.

“It is your life. As your doctor, my job is to guide, not order or command. It is about you, not me. You are the patient. I am the teacher and healer.”

With the increasingly complex, confusing, and expensive nature of medical care, it is more important than ever that doctors “get it.”  They must accept that the enemy is not death; the enemy is needless suffering. They must understand the limits of their role. They must appreciate and respect the strength of their fellow man and the rights of every patient to choose their destiny.

The final part of life is about being alive, not about death. Only by seizing those precious moments, deciding our own fate, can we hope for quality, comfort and dignity.

 

 

5 Comments

  1. You are always so on target…You are the doctor I would want if I were facing these decisions..
    There are worse things than death…pain and suffering…but most people don’t get it…

  2. Perhaps you don’t realize that you just represented your medical colleagues as either too ignorant or too stupid to know that people die and as incapable of knowing what to do about it (when they are). You did this to favor an industry (hospice) that uses emotional manipulation and linguistic misdirection in almost the identical way that the funeral industry did as uncovered by Jessica Mitford in her 1963 book ‘The American Way of Death.’

    So to be more accurate and to recap your comments in summation, the last line of this piece should read:

    Only by seizing those precious moments, deciding our own fate (as long as it includes hospice because if it doesn’t your doctor will likely torture you with untold suffering because he can’t accept that you’re dying), can we hope for quality, comfort and dignity.

    It’s one thing to be a follower and quite another to be a blind disciple. It’s inappropriate to bash your own industry for one which you know has many of the same failings yet covers them under the pretext of a (falsely) universal, altruistic mission.

    • After reading this essay, it is evident that that our perceptions are on opposite extremes. Having worked as an RN in various settings over the past 25 years (predominantly in emergency medicine), and have been involved in countless deaths both in hospital and at home, I can honestly say that there is an incredible difference in how patients die.

      To be present at someone’s death (family or patient) is a sacred event, much like birth. Of course it is unrealistic to assume we can all have the “perfect” death since trauma and sudden deaths happen every day, but given a choice, why not have the conversations with patients and find out what they want? Often, a patient or family blindly believes that doctor knows best and succumbs to every medical procedure or drug there is. They may not know they have choices. Our American culture prepares endlessly for pregnancy and birth with pre-natal classes, reading, and ritual. As we come to the end of our life there should be similar offerings. Patients and their loved ones are vulnerable and scared. It is our responsibility to guide them and provide options so they have the opportunity to cross the threshold in their own way and with as much support and peace as possible.

      I stumbled upon this blog through Kevin MD and have now bookmarked it because Dr. Salwitz clearly does “get it.” Your strong personal bias against hospice and palliative care is interesting and I can’t help wondering if you have a wound in need of healing.

  3. I was married for 36 years to the most wonderful man and he died of Cancer at home. I had him kept at home so he could decide when he wanted to let go. He was kept from severe pain with Codiene for a long time and then it stopped working. He began unbearable pain so the MD and the Nurse Practioner said that Morphine would keep the excessive pain away but hasten his death. They asked for what I wanted to do. I told them that he had a gun in the night table and the decision about the morphine was his. He decided on the morphine and I was grateful. He died a few weeks later with a small amount of pain. That was back in 1987.

  4. I was the only one in my family who understood my mom’s prognosis when she was diagnosed with late-stage CML. I had hospice round to visit but no one else would talk to the consultant. I was able to ask the doctors about the progression of her condition and recognize what they were saying, though they tended to be indirect. I think they wanted to avoid saying “no hope-prepare to die” when that’s all I really wanted to know. Even the support staff would suggest that things could turn around, don’t give up, etc.

    I found this so frustrating. Until her last few days, mom never realized that this was the end for her which meant she missed the chance to reconnect with long lost loved ones before she died. I don’t blame anyone.

    Denial: it is a thing for everyone, sometimes.

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