When patients make the decisions to harm themselves

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.

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

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  • NewMexicoRam

    Sure, you care about your patients. It’s obvious. But there’s no need to beat yourself up. You aren’t the one who gave them their diseases and you didn’t have anything to do with their life experiences that led them to make the decisions they make/made. I do my best everyday and realize that my patients’ lives are just that–it’s their lives and they make the choices they think best.

  • karen3

    If doctors were more aggressive in policing their own for competence. People have the history that it is, at best, a 50-50 proposition that the doctor has half a clue as to what he/she is talking about are not going to pay attention to what you say until you have a long and successful history proving your chops. It is your poorly education, rushed, and incompetent colleagues that are your greatest impediment to your success. Patient empowerment is a direct response to low standards for doctors. Nobody tries to re-engineer their buildings because we trust architects and engineers — we have the tangible evidence of lots of buildings that are not falling down as proof that those folks are generally competent. Don’t blame the patients who are doing the best they can with information they have to sift through to figure out if you are making any sense.

    • http://twitter.com/IVLINE Aaron Sparshott

      I would disagree, it’s got very little to do with the medical profession’s standards of care. It’s about people wanting to make a choice about how they are going to live their lives.

      A person is not designed from the ground-up, and we aren’t designed perfectly to begin with, otherwise we wouldn’t get sick. The whole point of the various health professionals that exist now, is to give us advice on how to re-engineer ourselves so a) we get better or b) we don’t get worse.

      I wouldn’t go build a house without seeing an architect. In the same token, if I’m sick I would go see a Doctor.

  • houriganterry

    Hi Dr Salwitz,

    I feel supported by many of your writings: “Families suffer together”, “Why you’re a doctor”
    I function and experience better with my patients and my family because you have helped me
    to see in some new ways through your eyes.

    I have a 50 yr friend. 20 yrs retired from the FD. Everyone has tried to get him to quit.

    No dummy, an ex paramedic. I have tried everything I can imagine: “Don’t you want those
    extra 5 or 10 years?” “If not for you, what about your friends and your kids? And now those 2 grandchildren.” He replies “Sure T, I’m thinking about
    it.” I know it can look like it’s impossible to live without cigarettes. I
    know it may be the most difficult commitment to make. But look at
    what’s at stake! That cough of his sounds like a signature on a coroners’
    report. I can see him in a year or two or five with a full blown stage
    4. And I believe he can begin to reverse the damage the minute he stops.

    A somewhat religious friend says “all we can do is love him and support him.” No one seems
    interested in a group intervention. I’m wanting to say “I’ll do anything it takes to support you quitting, but if you won’t commit to it, I won’t be wanting a ringside seat for your slow suicide.” I feel so ineffective.

    Finally, I pulled out my last & best. “This may take everything you have Rob. But look at the stakes.
    Remember RFK: ‘If not now, when?’ There isn’t another time you can do this. All you have is now.
    Those tomorrows are all used up. Either you choose now or you go down promising to handle it.”
    “I’m taking the scariest and most poisoned action I can to save my life. (hemicolectomy & 6 mos chemo) If I can live through this, can’t you do whatever it will take to live?” “OK T, if you promise to start writing again, I’ll quit.” When? “My birthday”. That was April. His birthday was in May.

    Give up? Love and support? What do you advise?

    If you don’t mind answering, you could email direct
    if you like, houriganterry@hotmail. I’d like to be able
    to email something to you.

    Thank you for reading this.

    Terry

    • JannyPi

      @
      houriganterry

      Give up? Love and support? What do you advise? ”

      How about GROW UP and realize that your friend is intelligent enough to make his own choices. BACK OFF and consider why this has become a sticking point to you.

      • houriganterry

        Thank you.

        I have been thinking of your points: the grow up as well as
        the back off. Back off is not as hard. But grow up is taking some time:
        (“you don’t know what you don’t know”)

        You must have a lot of experience to know your way through this.
        This is a first – time event for me. I have been in several
        similar situations with patients, but I am failing here.
        Could you describe what your choices were in similar circumstances?
        If your friend were a heroin addict or an alcoholic, would you also
        back off? If you care to go beyond “grow up” and “back off”, I’d like to
        know what actions you took or would take, or abandon, with someone who
        mattered a great deal to you.

        Thank you,

        Terry

    • David Huss

      He was to want to quit and to that end, there isn’t a whole lot you can do. However, you could recommend some harm reduction. There was an article on this website outlining some of the less harmful tobacco/nicotine products posted in the past month (http://www.kevinmd.com/blog/2012/06/truth-reduced-risk-smokeless-tobacco.html). As the article points out switching to a e-cig or snus, while not guaranteed to be 100% “safe” is definitely safer than continuing to smoke. It’s worth a try.

  • Amy Staples

    Wow its great to hear a doctor who really cares for his patients, unlike a nephrologist I had for 8 years while doing nocturnal home hemodialysis, the “cadillac” of the dialysis community. He’s considered one of the best in his field because of his “caring manner”. He has been voted “doctor of the year” at a vary large hospital so many times he now refuses the honor. All this and yet he refused to listen to my complaints of bone pain, calcium deposits in fatty tissue etc. Despite having completely normal phosphorus and calcium levels my parathyroid levels rose to 300, then 600, 700, 800 and stayed there. Sometimes they would jump to 1100. He treated me with two different meds and my pth levels remained basically the same. The bone pain was unrelenting. After five years of treatment and refusing to send me to a surgeon to have the parathyroids removed he finally sent me to an orthopedic surgeon saying “I think there must be something else going on”. She did a quick x-ray of my back and asked when I’d been in an accident. I hadn’t, but there it was a compression fracture in my spine in the upper middle of my back. The reason why? Bone loss due to long-term high levels of parathyroid hormones. Still my nephrologist did nothing but refer me to a pain management doc, who checked my Vit D level and said it was the lowest he’d ever seen at 5. When I reported this to my nephrologist showing him the lab result he still did nothing. Two years later my back shows compression fractures from T9 through L1 and bulging discs from L1 through S1. I used to be 5’7″ now I am 5’3″ due to bone loss. I changed physicians (that’s another story) and by this time my levels were 3000. She immediately ordered that I have my parathyroids removed. Pre-testing was done. After the surgery I spent five days in hospital as I had “hungry bone syndrome” and needed multiple doses of IV calcium. I was also put on massive doses of Vitamin D and now after 2 years they are just beginning to be in the normal limits. Did he listen to me? Nope. Did he appropriately treat me? Nope. Was he really concerned about my bone health and thus my overall health? Nope. Could this have been avoided? Yes. How? By listening to the concerns and complaints of his patient and x-rays, lab values instead of worrying about his precious statistics and status. He’s virtually crippled me and shortened my lifespan (congestive heart failure also due to longterm high levels of pth) considerably. Doctors like this are the common thing. Doctors who believe they know all and refuse to even consider that “perhaps” the patient may have a valid complaint and concern. OY!!! Blessings

  • http://twitter.com/PortiaChalifoux portia chalifoux

    Your post conveys the sincerity, genuineness and compassion you bring to your care for your patients. You also convey so many important unresolved questions you have about why patients chose what they did. Thank you so much for presenting this post for us to ponder.

    If not, could you elaborate a little about why those decision frames, so to speak, weren’t addressed? No time? Reimbursement issues? Patient refusal to answer? Not a part of your regular patient relationship? Etc.

  • http://twitter.com/Laura_PH Laura Curtis

    Consider that we’re living in a time when people take medical advice from Jenny McCarthy.
    Modern medicine has yet to offer a cure for stupid; all you can do for people is present the facts to them and hope for the best. Oh, and lobby your local school board for stricter science requirements. If people had any concept of the scientific method, they wouldn’t be turning to some of these insane “alternative” treatments. It’s the Darwin Awards, every single day.

  • houriganterry

    Thank you David, I will look it up.
    Terry

  • JannyPi

    @houriganterry:disqus

    Often wisdom comes with age, or perhaps greater tolerance for human imperfection. That’s where I was headed with the “grow up” comment. Even though your heart is in the right place, your concern for your friend seems as if you’re trying to control him. That was my immediate impression. Also that your friend probably avoids your nagging. No doubt you’ve made your point and expressed your wishes and opinion. Accept your friend for his GOOD and fine qualities and make the most out of your relationship. His addiction, weakness, whatever you want to classify it, is destructive only to him, for the most part. It’s also legal and he’s not stealing or prostituting himself to USE. I know you’ll poke holes in all of this, for it’s possible to knit pick just about anything.
    The only thing worse then a reformed smoker (don’t know if YOU are, but you’re behaving like the very WORST of them) is someone who became instantly religious and wants to save my soul. I don’t need others to point out my flaws, and resent it very much when they “talk down”.

    I am a former smoker. I quit after 30+ years and know I’m done this time. I used nicotine inhalers, btw, and despise the smell and taste of real cigarettes now. Anyone who smokes knows they shouldn’t. They know they should quit, and likely will at some point for it’s increasingly unacceptable in today’s society. Your support will be helpful to your friend when he does quit and I’m sure you’ll be the first one he tells.

    • houriganterry

      Thanks. If you would like to followup any more, my direct email is in the first response.
      I’d like to know what work you do, family wisdom. Are you involved with life & death stuff
      every day? , Terry