What if the patient’s choice is frustratingly ill advised?

My mother is stubborn. She occasionally approaches me for medical advice and, since I owe her more than words can adequately describe, I am happy to do what I can. Unfortunately, she is a stoic. She is also no fan of pharmaceuticals. She believes in baptism by fire, that pain purifies the soul, and what doesn’t kill you makes you stronger. So while she sometimes wants my medical advice, she rarely heeds it.

For example, my mother called to ask my advice about a “cough.” She described a productive cough with chest pain on inspiration, fever, chills, malaise, and decreased appetite that had lasted a few days. Fearing pneumonia, I told her to call her physician, and, if he could not see her that day, to go to the emergency department. She verbally agreed.

I repeatedly called and emailed to hear about the outcome, garnering no response for nearly two days. When I got her on the phone, she told me that she decided to just “ride it out” at home. Her symptoms had worsened. I immediately spun a horrifying tale about the lethality of pneumonia. I told her that the only reason that people do not die as often from pneumonia today is that we have antibiotics. If you refuse to take antibiotics, you set yourself back 100 years. I found myself screaming into the phone: “You could die!”

When she finally did go to the hospital, she had pneumonia with a loculated pleural effusion requiring thoracentesis. There was a discussion about decortication. In other words, she was very, very sick.

Let’s put aside my hurt feelings, my frustration, my fear, and my incredulousness at her response (if only it were that easy). The larger issue is that she avoids seeking treatments that have extremely high probabilities of success for illnesses that she is extremely likely to have. I now find myself melodramatizing the simplest of issues, like discussing the horrors of rheumatic fever in great detail when she may have Strep throat. Over time I think I’ve lost some credibility—crying wolf, so to speak—which doesn’t make my efforts any easier.

Is it right to discuss the worst case scenario, even if it is highly unlikely to occur, just to get my mother (or any patient) to adhere to a treatment? I could coldly recite probabilities of particular outcomes, the number needed to treat, or the percent reduction in symptoms with one management strategy over another. While that may work in some cases, how many patients do you see who make decisions based on statistics?

I think all patients should have the right to informed consent, but what if the patient’s choice is frustratingly ill-advised? I argue, in some cases, we are allowed to be a little overly dramatic. I want to be my patient’s partner in health care decisions, but I also want them to have a very clear picture of consequences of inaction. I want to provide choices, but I want to make my preference for their choice very clear. I respect a person’s right to decide their own health care, even if the patient is my mother, even if it is not the course I would choose; but I reserve the right to champion the option that I think is clearly best.

Michael Todd Sapko is a medical writer and consultant. He writes for Healthline.com.

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  • aek2013

    Where (physically) were you when these events occurred? There is a lot of missing info: is your mother frightened? Does she have support – real, physical presence of others who can be counted on to be with her, advocate for her and help her? Have you asked her about why she chose to continue to care for herself after (you thought) she had agreed to seek medical attention?

    If you use the fear tactic to coerce compliance, that trick only works once, if at all. After that, trust is destroyed, and sometimes that’s irreparable.

    I wish you and your mother well.

    • Michael Sapko

      Fortunately she has a great support system. Husband, daughters, close friends. (Me) She does this with every illness, not just the scary ones (e.g. strep throat).

  • http://www.facebook.com/sea.spray.3 Sea Spray

    I feel for you. It was extremely difficult in my mom’s latter years because she was fiercely independent. I also think it is more complicated when you are the child (the emotional component with all the relationship dynamics that are mixed in), and it is a lose -lose situation for the adult child in these situations. if they are noncompliant – they could become seriously ill ..or worse AND you will feel guilt ..thinking there should’ve been some way to get them to comply. I had difficulty in person …never mind over the phone. But toward the very end when she was still living independently, I MISSED the signs that she had some dementia setting in because she was so lucid in most things. maybe I will blog about it sometime. The last year of her life was the most difficult time and I was stressed beyond measure ,,,because of the worry and frustrations when she wouldn’t tell me things about her health and fear/hurt seeing her decline.

    But, since your mom approaches you, then doesn’t follow through or respond to your follow up …I wonder if she is seeking attention from you? Or …maybe she is concerned, hopes you will tell her it’s nothing to be overly concerned about and do x,y and z at home …but then becomes afraid to follow thorough and *hopes* it will all pass.

    It sounds like you need to have a sit down talk and develop a plan for her health care in these situations. Ask her why she calls or what it is that she wants you to do ..or that she wants to do. Is there anyone else who can check in on her? remind her that you love her and that it is also hard on you when you know she needs to be seen and is not. I would not want to worry my children needlessly. Tell her you would only tell her to be seen if you believed it was necessary and if she didn’t do it for herself, could she please do it for your peace of mind?

    I learned so much through the process with my mom, but I couldn’t see the forest for the trees when in the midst of it. If I could have a do over …I NOW know how I could’ve done things better because I’d know what to look for and how to respond, etc.

    Using fear too much could desensitize her to it. But …every situation is unique. Bottom line if you believe it warrants it ..then you have to say what you would tell any patient.

    • Michael Sapko

      Well said. Fear only works to a point and is not optimal. I have tried to recruit siblings to apply pressure, but this is more cajoling. Perhaps I need to change my approach?

  • buzzkillersmith

    I won’t comment on how you should talk to your mom, but as regards non-compliant patients, I leave 3 messages over 9 work days with the patient, by phone and/or email. If the patient calls back, I give a frank discussion of the risks and document the conversation. Done. If the patient does not call back, I send a 2 copies of the letter discussing the risks of noncompliance, by regular mail and by certified mail. Done. I don’t get angry, and I invite the patient to come back and see me or a doctor of their choice, but I do move on because I have other things to do.
    A lot of times people are going to do what they want to do, and I’m totally fine with that. Give folks the information and let them decide. It’s their body.

    • Michael Sapko

      That is very sound advice and legally very shrewd. For me it is still difficult to watch patients make bad choices. In many cases I do move on, like you, due to time and other pressures. Truth be told, I probably only feel this angst with certain patients and with certain situations.

  • Michael Sapko

    I think this is useful to a point, but as buzzkillersmith writes, it is ultimately the patient’s decision. I think the right answer is somewhere in between cajoling and pragmatism. Obviously my mother as patient is a unique situation.

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