Sam Finnikin is an academic GP in Sutton Coldfield and the University of Birmingham with an interest in shared decision making. He is on Twitter: @sfinnikin
Without clinical guidelines we’d be lost. We’d have no map to navigate the extraordinary quantity of clinical research, or mechanism for judging its quality and value. Evidence based medicine is beholden to those who collate, appraise and distil new information into clear recommendations. However, simply following guideline recommendations is not sufficient to be able to claim one is practicing evidence-based medicine.1 Careful, caring and person-centred application of guidance is required to ensure patients benefit from, and are not harmed by, healthcare.
I’d like to talk about Joan, an 86-year-old lady who had rarely visited the surgery.* She’d spent the last five years caring for her husband who had recently died. Joan was understandably bereft, but, apart from some bother from her hiatus hernia, she was independent and well. One day, she drove down to the surgery for an urgent appointment. She was short of breath and had a heaviness on her chest. She was assessed and admitted directly to hospital.
On admission Joan was found to have ECG changes and raised troponins. She was treated for acute coronary syndrome and an echocardiogram showed severely impaired left ventricular systolic function. She was started on six new medications (see table below) and, soon after, she started feeling terrible. She felt nauseous all the time and developed a cough. However, her observations and blood results improved and she was discharged home after six days.
Joan contacted us at the surgery a few days later. She was still coughing and feeling nauseous and had started vomiting.
Joan contacted us at the surgery a few days later. She was still coughing and feeling nauseous and had started vomiting. She was treated for a chest infection but a week later she hadn’t improved. She’d taken to her bed and had become uncharacteristically reliant on her supportive family. When I saw her, she was convinced her medication was making her feel unwell. She dreaded taking them; an activity that took most of her day. She wanted to talk about whether she could stop her tablets.
We had a long discussion. It was apparent that Joan, and her family, did not know what the medications were for or the potential risks and benefits they offered. Whether this was because this wasn’t explained, or not retained, we’ll never know. I went over each medication with Joan to help her understand why they had been started and their potential effects. We also discussed what was important to Joan. She was clear that a long life was not her priority. In losing her husband, she’d lost her main reason for living. She wanted to join him. She was not depressed, just content with a life well lived.
Following our discussion, we agreed to stop any medication that did not give her symptomatic benefit. I also organised support at home and input from the palliative care team. The next week Joan was feeling much better. She was still short of breath at times, but the nausea had resolved and she was able to enjoy food again. She was more content and felt more in control. Just a few weeks later, Joan died peacefully, at home with her family; a good death.
However, omitting shared decision making can be just as harmful to patients as being ignorant of clinical recommendations.
I have no doubt that the hospital team intended on doing the best for their patient by starting evidence-based treatments and stabilising Joan’s clinical condition. I wonder how Joan’s story could have been different if clinicians considered the NICE shared decision-making guidelines2 with the same regard they gave to the heart failure guidelines?3 I am certain that incorporating Joan’s preferences and values into decision making could have resulted in a different path, if not a different outcome.
We clinicians worry that if we do not implement recommendations in clinical guidance we may invite criticism or litigation. But this ignores what David Haslam, past chair of NICE, referred to as the guideline’s ‘terms and conditions’: “It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual”.3 It takes time and skill to navigate these decisions, especially at times when patients are acutely unwell. However, omitting shared decision making can be just as harmful to patients as being ignorant of clinical recommendations. We can no longer afford to consider it as an optional extra.
Joan bore no discontent towards the cardiology team. She knew they were trying to look after her heart. Joan, and her family, understood the immense pressure we’re all under, and that careful, patient-centred care takes time. They wanted me to tell her story to encourage us all to think beyond guidelines and consider the person on the receiving end of the recommendations and, critically, what matters to them, not simply what’s the matter with them.
Medication prior to admission
|Medication on discharge
|Lansoprazole 15mg OD
|Lansoprazole 30mg OD
|Clopidogrel 75mg OD
|Furosemide 40mg OD
|Bisoprolol 2.5mg OD
|Ramipril 2.5mg OD
|Atorvastatin 80mg OD
|Dapagliflozin 10mg OD
- Sackett DL, Rosenberg WMC, Gray JAM, Haynes RB, Richardson WS. Evidence based medicine: what it is and what it isn’t. BMJ. 1996;312(7023):71-2.
- National Institute for Health and Care Excellence. NICE guideline [NG197]: Shared decision making 2021 [Available from: https://www.nice.org.uk/guidance/ng197.
- National Institute for Health and Care Excellence. Clinical guideline [CG187]: Acute heart failure: diagnosis and management. 2021 Available from: https://www.nice.org.uk/guidance/cg187
*Editor’s note: Appropriate consent has been obtained to use this case history.