Dilemma about a boy with cystic fibrosis

My ethical dilemma is about a young boy (7years old) who has been born with cystic fibrosis. In Switzerland this is an illness which is well known and those children have at least once a week physical therapy. My problem is the following. I work in a general physiotherapy clinic which treats all kind of people but rather those with orthopedic, chirurgical or rheumatically problems. This kid comes to therapy to clear his lungs and make it easier for him to breath. But since we are not specialized with those type of patients, I don’t have the knowledge or the practice how to do this. But my chief and colleagues think that he I can do that and don’t want me to send him elsewhere, since he has been treated in this praxis for 2 years so far. Further his mother is also very happy with the therapy in this praxis and for her it’s great since they live next door. So my dilemma is there, that I know that another therapy would be more efficient for him but I don’t want my colleagues and chief to be placed in a bad light, neither to make the mom feel bad to have let him be treated here so far. What should I do?

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6 Replies to “Dilemma about a boy with cystic fibrosis”

  1. Hi there
    I think that’s a real dilemma! As a children’s PT and also having the special education to treat these patients, I think that it really is important to have a specialized PT in this case. I wonder in which Centre this boy is treated, because in our clinic the lung specialists always keep an eye on where the children go to PT and they cooperate with them on a regular base. I understand the conflict with your boss, but probably you could ask for a supervisor or mention that some students in your class were astonished to hear that you should treat this child without any deeper knowledge about CF… I wouldn’t feel comfortable at all. What about the inhalation? Do you feel comfortable there? Do you think that it could also be a relief for your boss to hear that there exist reasons not to treat him anymore in his practice? Now, with your knowledge he could explain to the mother why it is important that her son sees a specialized PT…?
    I’m curious about your steps…

    Kind regards
    Denise

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  2. Well I think, there are actually two problems you have to deal with and therefore it is a real dilemma. There is a patient rights existing where it is written, that a patient has the right to get best treatment as possible (something like that) and we as physiotherapists have the obligations to treat the patient as best as possible. What I don’t understand is if the patient and his parents know about your missing knowledge on the CF-topic? I think they have the right to know. But I don’t know how to deal with your chief at this point.
    If the patient and his parents know, it is still their decision to stay or to leave. In my experience sometimes you get more compliance of the patient, when it is not too far to go to physiotherapy on a regularly bases and also very important is the relationship between patient and therapist. Working in a CF-Center, I can tell you, what we do in cases like yours- assuming the parents are informed and agree- I see the child twice a year, when problems more after his/her visit by the pneumolog. I check physiotherapy implementation and after I talk to the external physiotherapist. We also offer those therapists come for hospitation one or two days so they learn more about the topic. And thats what I would expect from you- to learn more about CF.
    I hope that my post will help you a little bit…

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  3. I wonder if it would be possible for you to connect with a specialist in another clinic in another part of the country? You could set up weekly Skype conversations – with the permission of the parent and child, if necessary – and discuss the management of the patient. I’m not suggesting that this would replace the expertise that comes with years of practice in a specialised area, but it would almost certainly help with your management planning.

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    1. Thanks a lot for your answers. It’s a little bit what I expected and thought, that I really have to do something. I haven’t thought about doing something like a weekly Skype or so. It’s a good idea to have a look from an expert and maybe be able to know if I can continue like this or if I should recommend him an other better formed therapist. But so I think to answer to Denise and also the other to maybe do something like what Mike said and so this person could directly speak with me, the parents and maybe the chief and tell us all together the solution.. So I don’t know since they want to stay at my practice they could go like every second week to the other one and every second to mine. With your knowledge do you think something like this is good enough for the patient or should he be seen every week by your center. I have to check more carefully with the parents who the doctor is and who is responsible on checking his health etc..
      To answer to mrssonne, they don’t exactly know that I don’t have the knowledge since I only told them that I have done a 6week internship in a hospital with this tip of children (but it’s been 6 years ago). But they know that there are special center for children like him that are more specific than our!

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  4. I don’t think that patients and their families expect every clinician to be an expert in every area of practice. I do think that you can be honest with them about your level of expertise and confidence with treating a specialised condition in this patient. I’ve found that patients tend to value your manner and rapport with them over your level of technical skill, so it’s unlikely that they will want to move away from you if they’re happy with your relationship. This is especially true if you can show that you’re working to develop your skills in the area and that you’re actively consulting with a more experienced colleague.

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  5. I think that’s true what you say Michael, but I’m also concerned about the fact that the boss of the present therapist didn’t react at first place, what means before start to treat the boy. (Or did he disclose his possibilities?) Now after 2 years it’s kind of a consolidated situation and therefore difficult to solve without bringing the boss in a bad situation , I think. “I’m the best, I can treat anyone…” I really find this uncool. I just treated a 3-year old girl with CF at this weekend in my hospital which is sick like a 16 year old!! She is thin, needs oxygen and has very very bad lungs. I have never seen such a young child with CF being so ill like this girl. Our head of lung-department (MD) had to hospitalize her immediately. He said that the parents didn’t accept this chronic disease (specially the father) and that the family was not compliant until now. When I see where this can lead to if there is no good treatment it makes me thinking…. I don’t say that your boy will end like this. Anyway there a different manifestations of CF and some of the patients are really only a little bit sick. But I think it is important that there is a specialist who has the lead and if the child is stable it’s ok. But I also think that the specialization is not just for “fun”…and that the boy has the right to get a adequate treatment.
    For sure it’s easy for the family to go to PT next door. But I think that it is not necessary to anticipate this problem…if they understand why they have to take the longer way, they might do it, or after the instruction of a trained PT it might be that the boy only has to go there every other week and when he gets older only once a month depending on the current lung and compliance situation… also a combination of specialized PT and you might be a good solution…
    …anyway I think this is a situation to handle with care – and I wish you good luck with your decision 🙂
    Take care
    Denise

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