‘No decision about me, without me?’

19 April 2012

I was seeing an older patient with early Alzheimer’s dementia in outpatients and, as is my usual practice, gave the patient feedback on the diagnosis, answered their questions and talked about treatment options. Their partner was also present and contributed substantially to the discussions around diagnosis and treatment.

At the end of the consultation, I wrote the patient’s care plan in a letter to the GP, summarising in my own words what was discussed in the appointment, and sent a copy to the patient. It was agreed that, due to various clinical reasons, no medications for the Alzheimer’s disease would be prescribed at that appointment but a further discussion would take place at the next appointment in a few months’ time.

A few days later, I was informed by a colleague, who later saw the patient, that the partner felt dissatisfied that the content of my letter didn’t accurately reflect what transpired at the clinic appointment. I then spoke to the partner to find out what happened and realised that they left the clinic feeling that I’d discouraged them from opting for the treatment rather than them deciding that treatment wasn’t a good idea for various reasons, as stated in my letter. The central issue was – who’d made the decision?

That made me reflect on how I’d handled the whole situation in terms of communication and structure of the consultation. I felt I’d given information about the risks and benefits of the treatment as objectively as I could, in as much detail as the time allowed, and had involved the patient and their partner as much as I could’ve done under the circumstances. Yet, something went wrong.

We can consider decision making in a clinical context as a continuum – one end being a paternalistic approach where the doctor knows all and makes the decision for the patient and the other, where patient alone makes the decision, based on relevant information. Neither extreme bodes well for good patient care. Between these extremes, the doctor needs to act as an expert, guide, influencer, advocate or facilitator, depending on the complex factors that make every consultation unique. So, where does the happy medium lie?

Some patients would quite like their doctor to make decisions for them as they feel they themselves lack the relevant specialist knowledge or experience and they implicitly trust the professional to make the best decisions for them. Some others would like more control of, or say in, the decision-making process, so their views and preferences are taken into account. It can sometimes be hard to judge where an individual patient lies on this spectrum. I now realise the best solution is to ask the patient!

Some professionals understandably feel that letting patients make decisions may be perceived as lack of confidence or of decisiveness on the part of the professional or that the decisions may not be consistent with the best available evidence. I’d argue the opposite, as I believe it indicates a quiet confidence and signals a more ethical and collaborative approach to patient care.

I can now see why things didn’t go as planned in my consultation. My communication was probably not clear or structured. I needed to clarify whether the patient wanted to make an informed decision themselves, whether it’d be a ‘shared’ decision or whether they’d be happy for me to make the decision for them.

There was a need to separate the ‘options-appraisal’ part of the discussion of treatment from the ‘decision-making’ part. I needed to clearly state that we’d not be making decisions until we’d fully looked at all available options and considered the risks and benefits of each. I then needed to document what the decision was, who contributed to it and the reasons why the decision was arrived at. Such clarity and structure to the consultation would have helped avoid any misunderstandings later.

Kallur is a OnlyWan GenerationQ Fellow and a Consultant Psychiatrist for Older People at the North Essex Partnership NHS Foundation Trust.

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