An anonymous patient explains how her GP used shared decision-making to help her manage her distress. Quiet listening can empower patients to lead conversations about their own care, she says, but is threatened by the effects of COVID-19, including more triage, remote care, and burnout among GPs
This is an edited version of an article that originally appeared on The BMJ
How are the kids doing? Did they go to school today? These were among the first things she asked me. This was the beginning of sustained, personalised care from a general practitioner whose talents were asking the right questions and quiet listening.
My husband was in an operating theatre, my head was spinning, and I hadn’t slept in days. He needed a biopsy of lymph nodes close to his aorta. We knew that he was really sick. We didn’t know what kind of cancer he had. I was terrified that he was dying (he was) and that there would be no cure (there wasn’t).
Asking if the kids had gone to school was the right question. In the context of a late diagnosis of incurable cancer, it’s a litmus test of how bad things are at home. In the following months, I became what can only be described as a walking waterfall. I was frightened of losing my husband. I was also frightened of losing the roof over our heads; the financial impact of cancer is something that too few people talk about.
The stress became unbearable. My husband exhausted NHS treatment and was negotiating access to clinical trials. He was in hospital for months at a time. My life was at an all time low. Navigating this patch of my life was like walking on quicksand.
Hanging on to my mental health
I didn’t have flattened affect, I could still see joy and laugh, but I cried at night, as my husband groaned, sweating, startling, and waking with the pain that followed him everywhere. For months, I was hanging on to my mental health by a thread.
Discussing this with my GP was difficult. Her quiet listening was crucial. What followed was not a prescription for antidepressant drugs, or an inpatient admission to a psychiatric ward, though both were very possible outcomes.
Instead, with my GP, I made a plan. You could call it a care plan, but it was instigated by the patient, not the health professional. A key feature was the joint decision to demedicalise my experience of distress. Together we agreed that I wouldn’t start taking antidepressants; I chose to live with the distress and to find resilience. These discussions were very personal and practical and included where to get advice on managing financial pressures, balancing the demands of work and being a carer, and psychological support.
If things got really bad, I’d avoid going to the emergency department; she suggested other options for an acute mental health crisis that, in her experience, tended to work out better for patients, such as attending the charity Mind’s sanctuary service. Avoiding unnecessary treatment saved the NHS money. My GP probably also helped me to avoid a psychiatric admission to hospital. None of this would have been possible without a GP who knew, and practised, the art of quiet listening.
No algorithmically programmed chatbot could do what she did in conveying humanity and allowing me to lead a clinical conversation. Entering ‘thoughts of suicide and self-harm’ into an online triage tool, or virtual symptom checker, could not have produced the same outcome as I experienced through face-to-face care, or the same efficiency and value for the NHS.
Truly personalised and demedicalised care
Our conversation was about tailoring care to the individual; finding the right solution for me. This was personalised care in action. It speaks to the sharp end of conversations about the limits of the biomedical and clinical sciences to medical practice.
The BMJ’s Too Much Medicine campaign has focused on changing clinicians’ behaviour by identifying diagnostic practice and treatments that are unlikely to benefit most patients. What may be missing is a concurrent emphasis on empowering patients. How can clinical practice develop to enable patients, jointly with clinicians, to hold risk and manage uncertainty? How can practice develop to allow patients to lead conversations in which they can demedicalise their experiences of living with poor health, or of dying?
I saw my GP a couple of times each month. The care I received was a masterclass in the highly skilled work of managing uncertainty and holding clinical risk in the community rather than referring to others. This helps create positive patient outcomes that avoid the harms of over-investigation and over-treatment, and it manages demand for health services. This is primary care’s hugely valuable, but often under-recognised, contribution to the efficiency of the whole system.
How to practise quiet listening
My GP’s willingness to play a supporting role was key. She elected that we jointly manage risk. By listening, rather than leading, the conversation, she allowed me to make choices that were empowering, while enabling me to demedicalise my experience of distress. She took her lead from me. I opened the conversation about whether I was depressed. I gave her my view of the evidence and I asked for her view; after a careful pause, she said, “I think you are not depressed.”
We took it together from there. We talked about treatment options. Cognitive behavioural therapy works best when reframing can help adjust a patient’s perspective on a problem. My GP and I agreed that this was not the right approach for my situation, where the problem itself was causing distress. Instead, we brainstormed together about who might locally offer psychological support based around acceptance and commitment therapy – the cancer charity Maggie’s, as it turns out.
My GP’s approach fits with newer thinking, exemplified in the SHERPA (sharing evidence routine for a person-centred plan for action) framework, for example, which values practical conversations that start by co-constructing with patients the nature of the problem. The focus is on simpler, more natural, conversations about care that are appropriate for, and agreed with, individual patients.