“MANY spotlights currently illuminate the challenges associated with medical diagnosis,” writes Gordon Schiff. One of the brightest of these spotlights must be shone on the crucial role of the patient and family in the diagnostic process.

Diagnostic error is now recognised as a public health issue. Perhaps the most under-recognised method of preventing it is greater engagement with patients and families in the diagnostic process.

On being a patient

Patients and families are a great source of wisdom when it comes to diagnosis – they know their body, they know their relative. Within our often fragmented, poorly coordinated health care systems, the patient is the constant presence in their own journey. Furthermore, patients and families observe things that clinicians may not notice. Yet, this wisdom can be overlooked or dismissed.

It is interesting that when a doctor becomes a patient, the dysfunctional aspects of the medical universe become starkly apparent, as our universe is suddenly inverted, our senses assaulted.

Don Berwick, former Administrator of the United States’ Centers for Medicare and Medicaid Services, says “I fear being a patient”, with his greatest fear being the loss of influence on what happens to him. “It is the image of myself in a hospital gown, homogenised, anonymous, powerless, no longer myself.”

The “patient” role, by definition, is one of vulnerability, in which we can feel powerless, invisible and not heard. Such feelings were echoed in a recent New York Times article chronicling an inpatient stay of Dr Bernard Lown — the 96-year-old author of The lost art of healing and Emeritus Professor of Cardiology at Harvard — when he found himself a patient on the hospital conveyor belt. “My opinion hardly mattered,” he tells the young resident caring for him. He calls for a revolution to return to healing in medicine, “listening to know the patient behind the symptoms; carefully touching the patient during the physical exam to communicate caring; using words that affirm the patient’s vitality.”

On the importance of listening to the patient’s story

Dr Lisa Sanders, in her book Every patient tells a story, describes listening to the patient’s story as “our most important diagnostic tool” and one strangely underappreciated by patients and doctors alike. Getting a good history, she says, is a collaborative process, not unlike “two writers collaborating on a manuscript, passing drafts of the story back and forth until both are satisfied”.

In What patients say, what doctors hear, Danielle Ofri also describes the unfolding of the patient story as a delicate play between clinician and patient. The doctor (listener) is a co-narrator of the patient story and can facilitate or block that story. “The listener is in fact a key element of the speaker’s ability to tell an effective story,” she writes. The doctor draws out the story, helps illustrate and shape it into its best possible form.

Co-creation of the patient story requires a clinician to have self-awareness, to practice deep listening, to make a connection with the patient, to be curious and to have a “beginner’s mind”, all features associated with the practice of mindfulness and self-inquiry.

Kelly Skeff, from Stanford University, speaking at the Diagnostic Error in Medicine Conference in New Orleans in December 2018, emphasised not only the importance of accuracy of the history but of a careful inquiry into the chronology of the present illness. “If we do not know the history of your history, we will not be able to make a diagnosis.”

Using patient feedback to learn from diagnostic errors

Despite appreciable rates of diagnostic error in medicine, we do not systematically or routinely collect patient feedback on diagnosis. Feedback is essential to calibrate diagnostic accuracy. Ideally, each medical specialty should develop a repository of recurrent diagnostic error traps within their specialty. Patients affected by conditions could assist with this process.

A recent article by Giardina and colleagues explores patient perspectives on diagnostic errors, analysing 184 unique patient narratives of diagnostic error. Themes included patients and families feeling that clinicians ignored or dismissed their concerns and they described helplessness, fear and guilt associated with feeling unable to make themselves heard. Stereotyping and labelling of patients were reported as contributing to misdiagnosis. Patients were wrongly judged as “drug-seeking”, for example, or as having mental health issues causing their symptoms. Age-related bias was also reported. It is perhaps not surprising that the lack of listening by clinicians described by patients in this article contributed to diagnostic errors.

The patient perspective can lead to a more complete picture as to why diagnostic errors occur and how they can be prevented. Developing and normalising the use of systems for patients to routinely monitor and give feedback on their diagnostic outcomes is essential.

Conclusion

Striving for accuracy, high reliability, quality and safety in the diagnostic process is now high on the patient safety agenda. We need to create opportunities for patients to learn about the diagnostic process. Each consultation is an opportunity to share our uncertainty, to co-create the patient story, to ensure patients and families are engaged and comfortable enough to question and to give feedback on the diagnosis.

“At its most fundamental level, medicine is a conversation and a relationship between patient and clinician,” writes Trowbridge.

Like any relationship, there may be an ideal way, but in reality the ways are infinite. This space between doctor and patient is filled with thoughts, words and feelings, many unacknowledged. It is a sacred space where patients express their fears, hopes and wishes, sometimes with words, sometimes without. Our duty is to share this space, to fill it with words that help heal and uplift, to acknowledge, share and transform the suffering. To tell a patient “you are being heard”.

Dr Carmel Crock is director of the emergency department at the Royal Victorian Eye and Ear Hospital. She chairs the Australasian College of Emergency Medicine’s Quality subcommittee, is a Fellow of the Melbourne Medical School Academy of Clinical Teachers and a founding member of the Society to Improve Diagnosis in Medicine in the United States. She studied the violoncello in France and Italian literature in Italy, and has a Bachelor of Letters in Italian language and linguistics from Monash University. Her passions in medicine include preventing diagnostic error, improving health care culture and the relationship between physician wellbeing and patient safety.

 

“Communicating for safer diagnosis” is the theme of the 2nd Australasian Diagnostic Error in Medicine Conference. This will be held in Melbourne, from 28–30 April 2019 by the Society to Improve Diagnosis in Medicine. International keynote speakers include David Newman-Toker, Gordon Schiff and Lisa Sanders. Local keynote speakers include Maria Dahm, Rita Horvath, Jeffrey Braithwaite, Greg Collette, Jill Klein, Michelle Leech, Art Nahill and Nic Szecket.

Pre-conference workshops on Sunday 28 April include:

  • “From bedside to boardroom,” by patients and consumers who are passionate about diagnostic excellence, and elevating the role of patients and consumers in reducing the instance and impact of diagnostic error;
  • “The joy of looking,” at the National Gallery of Victoria, using visual arts to explore cognitive biases and diagnosis; and
  • “Introduction to diagnostic error,” with Gordon Schiff, for an overview of the significant milestones in the field of diagnostic error over the past decade.

The conference will explore language and diagnosis, complexity in health care, communicating critical test results, the link between physician wellbeing, resilience and diagnostic safety and error and much more. Latest research on innovations to improve diagnosis will be presented. 

For the full program, please click here.

 

 

The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless that is so stated.

7 thoughts on “Am I being heard? The patient voice in diagnosis

  1. Jenny Bradford says:

    It is true that the patient’s story is the most important resource we have in order to make an accurate diagnosis. Unfortunately with the specialistion model of medicine, many doctors will miss important patient information because it is outside their diagnostic paradigm. Patients also may not volunteer information because they assume that it will not be relevant for the particular specialist they are seeing. It has been shown that allowing a patient to speak uninterrupted (within limits of course!) does not add significant time to the consultation. I have picked up vital information by heeding this advise. This is how the doctor begins to learn from her/his patients.

  2. John Quintner says:

    I am reminded of these words penned long ago by Sir Thomas Lewis*, a great pioneer in pain research:

    “Diagnosis is a system of more or less accurate guessing in which the end-point achieved is a name. These names applied to disease come to assume the importance of specific entities, whereas they are for the most part no more than insecure and therefore temporary conceptions.”

    *Lewis T. Reflections upon medical education. Lancet 1944; i: 619-621.

  3. Anonymous says:

    Agree with the ‘the space between doctor and patient is filled with thoughts, words and feelings, many unacknowledged’ …. the doctor has less chance of discovery of the story when eyes are on the computer screen rather than the patient: patients are less likely to engage when no eye contact with the asker of questions. Too often the patient says the doctor ‘did not listen to me’ when my junior staff have back to the patient as they type on iEmr while asking questions…. have we forgotten to teach them that >50% of communication is non verbal, knowing from the body language to re ask a question from a different aspect is the “art of medicine”… this is not translatable to a tick box.

  4. alan murray says:

    I FOUND THE ARTICLE VERY INTERESTING

  5. Anonymous says:

    Finally it’s good to see that this is being acknowledged from a higher pay grade. It’s been going on for far too long, hopefully this acknowledgement has a ripple effect and is recognised and implemented as a priority during consultation. As I’m sure this will strengthen client, physcican and clinicians relations.

  6. Maureen Williams says:

    A great article! I am reminded of something once said by Hugh McKay – a well known Social Researcher. He said that after many decades of working with people, he no longer believes that man’s greatest need is sex, food or shelter. He believes that our greatest need is acknowledgment. That is what we are talking about in the communication between medical professional and patient.

  7. Anonymous says:

    Essential ability of Health Professional is Effective Communication to ensure a satisfactory outcome all round.

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