Tell me before you decide

 Let me share an experience which helped me to revise the way I practice Medicine.

This 7 year old chid, used to come for consultations with her parents. After she has been through a long spell of using muscle relaxants and undergoing the prescribed exercises, she was still struggling to walk due to stiffness in the muscles. They returned during her summer holidays, for the next phase of her treatment, which was,  applying a cast of plaster of paris on her legs and keep changing it to new ones every three days till her muscles had relaxed well. She would then be on further muscle relaxing exercises and regular use of some stabilizing ankle support to keep the muscle in normal tone after the cast was removed.  

That was what happened and the family returned for a consultation after the cast was put. The girl looked unsettled, non-communicative and did not establish any social contact  with me unlike her usual pattern. She even refused to answer any question. As I persisted trying to reach out to her,  she shouted at me with these words, 'Tell me before you do anything to  me'. 

I was lost for words. It was true that I had not explained to her about the plan to put her legs in plaster cast or any of our thoughts or rationale behind doing this. Her parents did not explain to her anything either. So she protested, while the cast was put on her and the resident doctor told her to comply with the 'order' of the senior doctor. So there were several slips from the medical team by failing to solicit the willingness of the child or taking time to explain the process and procedure. 

It took a while for me to recover from this terribly embarrassing situation. The parents too were in a state of shock on account of what and how she communicated her anger and distress. Later I realized that she was looking forward to her holidays to spend time with her friends. We took away that opportunity from her, with no effort made to prepare her to cope with her  disappointment. Everything was imposed on her without seeking her consent.

In hindsight, I realized that I often left most of the explanations about therapeutic procedures to parents. It was only when I observed her distress, I realized the need to take responsibility for some of the preparatory conversations with a child, before any procedure is planned. 

We as clinicians, violate the autonomy of an individual, by not making joint decisions for therapeutic procedures. It is important to let even a child be given an opportunity to express his or her feelings, which I feel would be crucial before any final decisions is taken for the treatment plan. I remember this child mentioning to me later that, she missed being with three of her friends on their birthdays because parents decided to come away for her treatment, without consulting her.

I feel, that clinicians  have a long way to go, to involve a patient while making decisions for treatment. I am glad, that it is now mandatory to have informed consent from patients including from children, when therapeutic procedures are considered.

We have no rights over our patients; they have right of information about the plans we make for them. Let us move towards participatory decision making in clinical practice!

M.C.Mathew (text and photo)