The Price of Caring

Today would have been easier if I did not give a damn.  Easier if patients were clients.  Easier if medical advice was causal suggestion.  Easier if I believed that patients were solely responsible for their health.  Easier if suffering was not real.  Much easier, if I did not care.

However, despite the popular movement from “the doctor knows best” towards shared decision-making, I feel responsible for my patients.  What happens to them is very important to me.  I mean this not as an objective definition of a doctors  “job.”  I am talking about the personal love of a caregiver for his community.  Therefore, while I respect the freedom of each patient to control their own future, sometimes when they exercise that right it hurts.

First, there was my patient who received multi-agent complex chemotherapy and then vanished for three weeks.  Despite severe mouth sores, fevers, rapid weight loss, numbness of his feet and daily vomiting, he did not call.  He had attended chemo class, had received written instructions, and had at least six emergency phone numbers (and my email). Nonetheless, he did not reach out. On one occasion, one of my staff even spoke to him by phone and he did not mention the disaster.  He just suffered and deteriorated.  Now, I need to stop his treatment and can only try to salvage what remains of his frail health.

Then there was the crazy second opinion.   Anyone that follows my blog knows my enthusiastic endorsement of seeking multiple ideas. However, that really should include experts who make sense or at least have attended medical school.  Therefore, I was not thrilled when a patient canceled the first treatment for rapidly growing ovarian cancer based on the concept that hair testing was needed and perhaps another biopsy was in order.

I had to call a wonderful gentleman I have known for years, in order to tell him the result of his chest CT scan.  We saw a dime size nodule on a scan in December 2010.  I have been begging him to get a repeat CT for over a year.  Now I had to give the horrid news that not only has the dime grown into a golf ball, it has spread to his lymph nodes.

Finally, this day included the high-risk breast cancer patient who is refusing to take an anti-estrogen medication to prevent the cancer from returning.   I understand that side effects are possible, but the return of breast cancer has massive complications all its own.  Still, she has spoken to friends and relatives who have raised the overblown possibility that she might feel miserable.  Even though I pointed out that if necessary the medicine can be stopped, she declines my recommendation.  I dread her future.

This kind of day makes doctors miserable.  We feel reasonable for the unneeded suffering that follows, despite our attempts to help.   Few physicians let themselves off the hook by saying, “well, it is not my fault, the patient made his decision.”  I have yet to hear the words on medical rounds, “it is her bed, let her lie in it.”  Doctors usually feel the opposite.  “What could I have done differently to help this patient accept desperately needed therapy?”

When I worked at the National Cancer Institute, I took care of a 19-year-old son of a VIP. He had Stage 2 Hodgkin Disease, which has a 90% cure rate.  Nonetheless, he refused standard therapy.  He went to an alternative practitioner in New York City to receive an unproven concoction to “build up his immune system.”  He was dead in three months.  I have never forgiven myself.   Perhaps if I had explained things differently, listened better or had been more compassionate, he might be alive today.  I, like most doctors, often feel such a loss as deeply as medical error.

Doctors cherish and love their patients, often like family.  We understand all we can do is offer our service, our best guidance and ourselves. The textbooks say it is every patient’s right to command their health. I understand it is the patient’s responsibility to decide.  However, when you care it is not quite enough.

 


 

16 Comments

  • Cindy cedrone
    From your patients perspective you could not possiblyn explain, listen or care any more than you do.unfortunately sometimes people put there trust in the wrong places and listen to the wrong advice.I always feel better about my treatment and my future when I talk to you.I wish that for everyone.thanks for being you
  • Kathy Stevens
    I have found so much comfort and care within the lines of each word you carefully select as you write your profound blog. If you ever come to Salt Lake City, I would come to a lecture, a lunch or any presentation you were speaking at. You are a man of integrity at it's finest. Keep up the no nonsense, blessed path you are on.
    • James Salwitz, MD
      Thank you very much. I am honored. Will keep your kind invitation in mind. jcs
  • Kathy Stevens
    One more thing.... Correction: Within each line AND in each word you ... inmyleafyteapot.blogspot.com (if you are interested)
  • barbara arnott
    My God what an emotionalblog. I've been through a cancer tragedy loosin a husband at a young age. It was your care and advice that that kept my sons and myself on track.It would have been easy to be influenced by friends,etc. who thought they knew other options to try. I was always very quick to remind them that they didn't have a medical oncology diploma hanging in their house. As my doctor for a long time, I appreciate your caring, and I do listen to you.By the way HAPPY FATHER'S DAY!!!!!!
    • James Salwitz, MD
      The other side of the picture is the real pleasure in working with patients who communicate very well, such as yourself. That is not only an honor, but is real joy. jcs
  • Lyn Hobart
    So true, this is what makes a well rounded physician. Thank god for those who CARE. Lyn
  • Bill Wickart
    Caring hurts. This is how you self-selected fro the profession. The ones who don't hurt are licensed technicians (cue deForest Kelly, "I'm a doctor, Jim, not a ). This is the self-check, the consistent need to become, not perfect, but better than yesterday. Selling the entire package, start to finish, is not always possible. Serious problems require little cat feet to tiptoe through the initial steps of the grieving process. Often, the first person to address the problem has *no* way to resolve the matter, because it will take two, three, or the advertising maxim of 20 impressions to change the patient's paradigm. Sometimes, the most you can be is the town crier, knowing that it will definitely take another person, time, or random inspiration to infuse the patient with the mind set to accept the information required for an informed decision. Once in a while, you don't have the time; nobody has the time. I won't tell you to keep accepting the pain; you will anyway, because you know how necessary it is to remain open. Just know that others out here understand. You may face five apparently identical cases in a year; four of them will accept your educated guidance in time; we will share your grief over the fifth, knowing that there is no way we can alleviate your memory of his eyes, the touch of his skin as you examine him, the sound of his uncertainty as you treat him every bit as competently as the other four. Parents know this; doctors, teachers, and other skilled professionals have opted to be, in one deep sense, parents to us all. Shared joy is multiplied; shared sorrow is divided. I hope that this posting and our acknowledgement helps you get through next week with just a little more energy in your soul. hugs, Wic
    • James Salwitz, MD
      Fascinating thoughts and wisdom. Thank you. Your idea on the nature of joy and sorrow is most intriguing. jcs
  • I have gained much from reading your blog posts. This one gave me pause. I recently was advocate for my 95 year old mother who was active and alert until 4 months before her recent death. It is difficult to be in the decision-making role, wondering if you have enough information, wondering if you have not thought of the correct question to ask, wondering if you can trust what the Dr. is saying...is it complete? is it driven by liability etc? I was fortunate to interact with some physicians who were patient, willing to spend the time, to seem to connect on a human level so that trust did develop and I valued their advice and help.
    • James Salwitz, MD
      Your quandary, how can you be certain if you are making the correct decision, is a major challenge for health care. Even though we have many sources of information (too many?) and try to educate ourselves, it is very hard to be certain. The stakes are so high. I suspect the key, as you imply, is research and working with professionals who communicate well. From a doctor's standpoint, this is the prime role of "the art of medicine." jcs
  • Cathleen Pearl
    Dr. Salwitz, As difficult as it is to watch our own children make mistakes, it is obviously as difficult and heart-wrenching to you to watch patients chose an incorrect path toward dealing positively and proactively with their disease. On a smaller scale, my husband always tells me this is not MY cancer, it is OUR cancer. And so it must feel between yourself and your patients. As a parent, when a child strays in inadvisable, unhealthy ways, we ask ourselves where we went wrong. So it is with you and your patients. We then, must remind ourselves that we can never completely control someone else's lives, decisions, etc. That would be a world wherein everyone, with the exclusion of ourselves, would be walking robots. It's just never going to happen that way. If we were, in fact, able to lay hands on everyone that comes our way and say, "come, do this as I advise, and all will be well," then we would be of a divine nature, not human. I don't think this world has enough room for all that divinity. Nor was it ever meant to. So please go on Doctor, doing and advising what you believe to be the best treatment for your patient. But beware of saying "what could I have done/said differently." In some cases, life just does not allow do-overs. We all need to learn and accept that. Better to tell yourself, I did my very best. Because I feel quite certain that is what you always do.
    • James Salwitz, MD
      Thank you very much for your incite. I had not really considered the comparison of the doctor's role to nurturing as a parent or a spouse. I appreciate the need to, at times, lay down the burden. But, what "parent" really can? Thanks again, jcs
      • Cathleen Pearl
        ...and therein lies the perplexity. *smile*
  • RMcMahan
    Dr. Salwitz, I have spent a good deal of time thinking about what you wrote this week. I am a behavioral health provider working in a primary care setting and this blog entry helped me understand more the differences in our professional cultures. Behavioral/psychiatric/mental health care has a shameful history of providing what we believed to be appropriate treatment that turned out to be pretty horrific, and patient consent was not often considered (ECT, sterilizations, long term restraints and commitments.) Today, we are charged not only to be care providers but also advocates for patient rights. To many behavioral health care providers, the patient IS solely responsible for their health (with the exceptions of being at imminent risk of hurting themselves or others and a medical and psychological care provider can convince a judge to temporarily suspend a person's rights and they get treatment without their consent.) We can only provide care to the extent to which a patient consents. We are responsible for providing to the patient, in a manner in which they understand, the risks and benefits of the treatment offered. It is not that we do not care, we do. Part of what we care about is patient autonomy, even if I believe that the choice the patient is making is not the patient's best interest. We are responsible to honor the patient's choice. I am not advocating one professional culture over the other, but it helps me understand some of the miscommunications. I have also had an opportunity to receive training in Balint and have co-facilitated some groups. I cannot say enough positive about the process and dream of the day that it is offered and often used, in every medical setting. http://americanbalintsociety.org/learn/balintgroups/balintgroups.html Rebecca McMahan
    • James Salwitz, MD
      Thank you for your fascinating comment. I was not aware of the work of the American Balint Society. The website has a list of their events, and I would love to attend. There is much to be gained by balance in our relationship with patients. The emotional commitment of caregivers is indeed a razor sharp two-edged sword. It takes a deep love of your fellowman to enter the toughest trenches, again and again, but when things go wrong there is a price to pay. Even when all goes as planned it is hard. Think of the surgeon who in order to help others is tasked with attacking them with a knife. Is it any wonder that the emotional gymnastics required by that Solomon's choice occasionally produce physician's whose bedside manner is lacking? Thanks again for your thoughts of wisdom. jcs

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