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What I know I owe to patients

BMJ 2014; 349 doi: https://doi.org/10.1136/bmj.g6734 (Published 01 December 2014) Cite this as: BMJ 2014;349:g6734
  1. James Munro, chief executive officer, Patient Opinion, Sheffield S3 8EN
  1. James.Munro{at}patientopinion.org.uk

For James Munro, listening to and understanding patients has provided far more medical insight than formal training

When I was young I trained in medicine. I studied hard and learned many things. I was anxious, but because I knew that I knew a lot, I wasn’t afraid to make decisions. I thought I was a pretty good doctor. But I didn’t know quite how much I didn’t know.

Over the past decade, as one of the team running Patient Opinion (www.patientopinion.org.uk), a non-profit online public feedback service for UK healthcare, I have read thousands of stories of care—good and bad—contributed by patients and their relatives. Many are written with remarkable insight and thoughtfulness. And so I have come to know some of what I didn’t know then.

Arrogance of medicine

I didn’t know how much patients see. Many times as a young doctor I was tired, irritable, scared, or even angry with my patients. There were times when I didn’t get on with other staff or they didn’t get on with me. In many of the stories I have read it is painfully clear that patients and relatives often see all of this. My obliviousness wasn’t simply the arrogance of medicine but also the arrogance of youth. I thought my elderly patients understood far less about life than me. In fact, they understood far more.

Nor did I know about trust. It was easy to assume that patients would trust me from the outset. Why shouldn’t they? I had so many qualifications. But one of the strongest themes to emerge on Patient Opinion is that people build, or lose, their trust in you from the tiny fragments of evidence available: the way you listen (or don’t), whether you’ve read the notes, whether there’s a blood soaked dressing from the last patient still under the bed. “If they can’t get the small things right,” patients reason, “What about the big things?”

So the seemingly clinically unimportant small things matter, not just because they make care more human but also because when the small things aren’t right, trusting the clinician, team, or organisation becomes much harder. After a litany of failures in simple communication, one relative wrote of her mother’s hospital care, “How I wish I had scooped her up and taken her home, because I feel like she would have died clean, comfortable, loved and cared for.”1

Conversely, when the small things are right they support a trusting relationship between patient and professionals. If events turn out badly—as they sometimes do—that relationship provides a bedrock for making sense of what has happened. One relative wrote, after her grandmother died in hospital: “This should have been a horrible experience—but their care made it hugely special for us.”2

I didn’t know that the care I provided was only a small part of the care experienced, and that everyone my patients met could make, or break, that experience. One patient wrote of a hospital porter who was “an absolute star on what was a very stressful night.”3 Another, after a poor maternity experience, noted, “I was very frightened and it took a student midwife to put me at ease.”4

Complex, nuanced, mutual

I would have been even more surprised to learn how often patients and relatives provide care to one another, even in hospital, and yet this is not rare in the accounts we hear. For example, one visitor to a hospital ward said, “I was so horrified that I took the lady to the toilet myself. She had started to soil herself and I had to help her clean up.”5 Although patients may not care for staff, they do care about them, and sometimes deeply so. One patient wrote of the impact of the death of a fellow patient after bowel transplant on his surgical team: “Right in front of my eyes I was seeing the pain and upset felt by the transplant team and my surgeon. Our surgeon.”6 Here is an account which lays bare the complex, nuanced, and inevitably mutual nature of the relationship between care professionals and patients.

As a young doctor, I thought that what mattered most in medicine was knowledge, technical skill, effective decision making. Yet after the death of her daughter, a mother takes the greatest comfort not from the excellence of the interventions but from the tears shed by the consultant and chemotherapy team who cared for her.7

There was so much I didn’t know, as a young doctor, about how my patients felt, what they saw, what they wanted from me, and for me. How could I have known? But today, a new world is coming into being. Patients and carers are sharing their experiences online, creating new opportunities for health professionals to see the world through their eyes.

Social media is connecting people in ways which will have profound and unpredictable impacts on the culture of those providing, or receiving, healthcare. Higher education institutions are beginning to use patient stories, like those in this piece, within the healthcare curriculum. And so, as the next generation of health professionals qualifies, my hope is that they will know at least something of what I didn’t.

New series coming soon: What Your Patient Is Really Thinking

The BMJ is soon to launch a series of articles created by patients that aim to help doctors understand what it’s like on the other side of the consulting room desk. In these articles patients offer their perspective on their healthcare experiences and identify practical learning points that doctors can reflect on and put into practice. CPD/CME hours available.

For more information email Rosamund Snow, The BMJ’s patient editor, at rsnow{at}bmj.com.

Notes

Cite this as: BMJ 2014;349:g6734

Footnotes

  • Competing interests: I have read and understood the BMJ policy on declaration of interests and have no relevant interests to declare.

  • Provenance and peer review: Commissioned; not externally peer reviewed.

References

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