Shared decision-making:
Lost in Translation before it’s begun?


Mrs Patricia Khan


Communication and culture top the list of barriers to be overcome by patients and the professionals treating them before shared decision-making (SDM) can work in practice, according to flash polls conducted by the Patients Association during its event ‘Shared decision-making: a reality for everyone?’

Our BHVS annual conference dedicated a case study to the psychological drivers that may make SDM difficult. Council’s lay representative Patricia Khan attended both virtual events and offers her own perspective on some of the discussions.


It would seem that the ideology of shared decision- making is sound in principle but far from being embedded into the infrastructure of the NHS in a way that supports both patients and clinicians. Perplexing aspects of the process came sharply into focus at con- ference.

SDM implies that the patient is engaged, informed, confident and ready to talk. In reality many patients are confused, distracted, over-anxious and ready to run.

Some may bring pre-conceived ideas acquired during the course of a long-term condition. Others may gen- uinely believe that decisions are not theirs to make, and look to physicians and nurses to be their sword and shield, for in them they trust. Or leave it all to Fate.

The Patients Association tackled stumbling blocks to SDM in discussions with NHS England and Improvement, the Winton Centre for Risk and Evidence and NICE in November.

Patient and carer representatives feel strongly that people, especially those with multiple illnesses, should be at the centre of a closed circle of consistent smoothly functioning care and shared professional recommendations, rather than “pillar to post.”

There will be less wastage of pharmaceuticals if patients have a better grasp of why a prescription is needed, they say. Responsibility for taking medication properly could even reduce doseage, with benefits for all stakeholders.

Clearer, simpler non-medical narrative (face-to-face and in letters) between clinician and patient is challenged by lack of an agreed lexicon or shared ver- nacular – quite apart from translation into a mother tongue if necessary. Terminology that seems innocu-

ous to a clinician can put a patient off and up their anxiety.

Health literacy must work – and probably be co- roduced – at the lowest level of comprehension. It must penetrate the ‘blanking out’ caused by white coat syndrome and counteract the seemingly contra- dictory nature of some medical discussions.

Mutual understanding is essential when it comes to personal preferences, such as timing of intervention, surgical options, choice of device, even the choice to do nothing. For the patient, there’s so much to take in, process and remember. Readability techniques (chunk- and-check, teach-back) may help, but reading is only part of the problem.

Research undertaken by the Winton Centre for Risk and Evidence Communication, Cambridge, shows that when numbers and data are included in consultations, both clinician and patient tend to over-estimate benefits and under-estimate harms. A very good rea- son to hope that the Cochrane Collaboration is not a sinking ship.

To overcome these tendencies, Winton has developed simple graphics to illustrate risks and benefits, and tools which patient and clinician can fill in together and the patient then carries to their important person. It also offers training courses in SDM (moodle.winton-

The evolution of the resistant patient

For medical teams, one of the more complex and con- founding barriers to the decision-making process is the patient who may be determined to challenge – even refuse – life-saving treatment; who may reject the professional recommendations of one medical team yet accept the guidance of another at a different hospital.







Every individual’s history is different. Such occurrences probably require an examination of the “baggage” a patient brings with them into the clinic. A congenital or particularly unusual condition may prompt some patients to acquire information from diverse sources over as much as a lifetime.

Google provides easy access to information formerly in the domain of experts (though not all authoritative, sound or current). Then there is social media, which enables anyone so inclined to latch onto the non-med- ical opinions and advice of others, apply this random counsel to themselves and regard it as empirical.

Coming from a generation that revered physicians and respected professional recommendations, it seems unthinkable to me that any patient might find it acceptable to challenge their doctor in much the same way that they might challenge the mechanic who ser- vices their motor. But this was before devices implant- ed into the human heart were “branded,” almost like parts for a car, or any other consumer commodity.

Our GP combined the gravitas of a scientific healer with the charisma of a fighter pilot and brought the warmth of his character as well as knowledge and authority to the consulting room. Thankfully charis- matic physicians still exist. And even more hopefully, recalcitrant patients are rare.

Professor Raymond Tallis, philosopher, cultural critic and until recently physician and clinical scientist believes there are tensions between the consumerist values of society and the values that have hitherto informed medicine at its best. In his essay on medical ethics (Reflections of a Metaphysical Flaneur, Routledge Press) he writes: “Once there were patients, then there were clients, now there are users and ulti- mately there are litigants: that is roughly the evolu- tion of a patient.”

I hope I never encounter a medical situation which compels me to resort to litigation. It would have to be the most abject negligence resulting in the death or extreme incapacitation of a loved one; doctors are only human after all – although artificial intelligence may soon aid consultations and robots perform oper- ations.

Until then we need to nourish our shared humanity, which is really what shared decision-making is all about.

It seems to me that SDM is a good idea in principle, that barriers to its development are well-perceived and not insurmountable. But it may never achieve gold standard until it becomes less a process and more a philosophy.

The philosopher’s perspective, after a lifetime as a physician

“Illness is potentially a mirror, albeit a dark one, in which we may see something of what we are, at the deepest level.” Professor Raymond Tallis, philosopher, poet, novelist and cultural critic.

Prior to his retirement from medicine to devote him- self to writing, Professor Tallis had responsibility for acute and rehabilitation patients and took part in the on-call rota for medical emergencies.

He was Professor of Geriatric Medicine at the University of Manchester and a consultant physician when I had the good fortune to attend his lectures, the shining highlights of a communications project for Hope Hospital.

Professor Tallis’s national roles have included: Consultant Advisor in Health Care of the Elderly to the Chief Medical Officer; a key part in developing National Service Framework for Older People, particu- lar for people with strokes; membership of the National Institute for Clinical Excellence Appraisal Committee; chairmanship of the Royal College of Physicians Committee on Ethics in Medicine and of the committee reviewing ethics support for front-line clin- icians.

The seminal report, Doctors in Society: Medical Professionals In A Changing World was produced by the working party of which he was a member.

In another of his books, Hippocractic Oaths (Atlantic), he writes: “All patients are different and it is some- times necessary to depart from conventional practice. The emphasis on narrative-based medicine, taking account of individual characteristics of patients, is a healthy corrective to the notion that medical practice can be reduced to a series of algorithms.”

Over to NHS England, NICE, Winton, the Patients Association et al to think “out of the box” and deliver some really innovative solutions to shared decision- making.







Educate, detect, treat early:

prepare for the next pandemic

Daily exposure to clinical and scientific experts tells us all we need to know about COVID-19 and its variants. The UK population is as aware of COVID as of cancer.

We know its red flag symptoms, who is most vulnera- ble, its destructive and sometimes fatal effects. By click, sound-bite or screen grab, messages and slogans follow us everywhere: how many people have it and have died of it, what havoc it wreaks in hospitals and on hospital staff, the need to protect our NHS.

At Global Heart Hub’s Unite summit, Professor Philippe Pibarot, director of the research group in valvular heart diseases at Quebec Heart and Lung Institute, warned that HVD is “the next pandemic in cardiovascular disease in Europe.”

Yet HVD remains under the radar for the general pub- lic and not well enough understood by many health- care professionals. Significant disease is going unde- tected, life-saving treatment delivered too late. He calls on policymakers and healthcare professionals to develop an optimal care journey with clear time- frames including systematic auscultation and annual stethoscope checks by 2025.

BHVS has issued its Blueprint. Can it find a fast-track route to policy-makers and leap-frog HVD higher up the NHS agenda and deeper into the medical curricu- lum? Norman Briffa, BHVS Past President, believes it’s a goal worth pursuing.





“The management of coronary heart disease was transformed by the National Service Framework for Coronary Disease twenty years ago. We and patient organisations should really be pushing for the same for HVD.

“After increased awareness and education for medics as well as the public, the measures that will really make a difference and save lives, more dedicated valve clinics, valve specialists and access to echo ser- vices, are not subject to scientific study and hence overall there is far less evidence for HVD management than CAD. It’s something that needs addressing.”

The COVID pandemic has brought about changes in networking that many regard as improvements. Webinars can be accessed from almost anywhere by tablet, mobile phone and laptop. Potential for engag- ing with a wider audience is great.

The BHVS annual conference in November attracted an unprecedented number of virtual attendees includ- ing, for the first time, representatives of the cardiac patient outreach charity, the Ticker Club. Ticker is keen for its volunteer network to know more about HVD and for BHVS to present to members in 2022. The Society is beginning to forge meaningful links with patient organizations. As Sarah Murray, SCTS lay representative and chair of NICOR’s patient represen- tative group says in her introduction to the Blue Book, “We are all potentially patients. It is our future and we are not sitting in the sidelines.”