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Every medical student needs to hear patient and caregiver stories

Grace Cordovano, PhD
Patient
July 3, 2017
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At the 8th Annual Patient Experience Summit, Adrienne Boissy, MD, MA, Chief Experience Officer at Cleveland Clinic Health System, encouraged conference attendees to “dream bigger.” So here goes.  It’s time for you to invite patients to speak to promising young doctors during their time at your respective schools. You need to invite patients for regularly scheduled story sharing.  Don’t roll your eyes at me just yet.  It’s time to invest in patients and their stories to enrich your curated curriculums.  To clarify, by invest I mean not only to welcome patients to your exceptional facilities but to compensate them for their time as well.

Your students are only learning half of the story from the cadavers and medical experts at your prestigious facilities.  For medical students to truly learn and understand the other half of the story, you will need to take a risk and depart from the way things have always been done and revamp the medical school experience.  My dearest medical schools, you need to change the lens your students are looking through to learn. They need to understand the human repercussions of the diseases they so astutely diagnose.  They need to share and revel in the joys and tribulations of a parent whose child was miraculously saved.  Your young doctors need to experience the recollections of a spouse who tragically lost their loved one to a difficult battle with cancer.  Your knowledge hungry students need to hear first-hand the accounts of those living with painful, chronic diseases. Your students need to see the effects of avoiding difficult end-of-life conversations and the unnecessarily prolonged deaths adult children see their aging parents endure.  Students need to hear about successes of truly delivering consistent, quality care and the difference simple eye contact and active listening to a patient truly makes.  Young doctors-to-be need to hear first hand about near death or true back-from-the-dead experiences. It’s one thing to learn about death from a textbook or to see a patient code in the hospital. It’s another thing to be in a pin-drop silent room and hear the riveting account of those who have experienced their own death and have shockingly fought all odds to come back to tell their story.  These young, curious, motivated minds need to hear the accounts of everyday patients and the challenges they routinely face.

There are two sides to every story.  Your students need to hear from those “non-compliant” patients that show poor medication adherence to understand their financial struggles, their difficulties getting to appointments and to the pharmacy, their challenges with suffering from debilitating side effects.  We can’t continue to ignore the impact of social determinants of health on patients.  Your young doctors also need to hear stories about wonderful care that’s being delivered across the nation, care that nurtures, supports, and empowers patients because there are incredible things happening every day.  We need to inspire them because not all is lost and forsaken.  Your students also need to hear about terrible, undermining, exploitive care that left patients hurting, feeling lost, abandoned, taken advantage of, and hopeless.  They need to hear about poor care and communication that brought patients back to the ER or ended up in medical errors and death.  Don’t forget about including doctors and nurses who have reversed roles and become patients themselves.  Their experiences will be uniquely different yet completely eye-opening and pertinent.

Seek out the activated patients in your local communities, amplify their voices, and listen.  It’s in their messages that we will find solutions to heal our broken health care system.  I ask you to be the early adopters our health care system so desperately needs.  Give your students a medically cutting-edge education that is bathed in the human experience. Dispel the myth that there isn’t time for such initiatives.  Time is always there.  It’s priorities that need to be adjusted. Be the disrupters in health care that reintroduce empathy into the sanctity of the doctor-patient relationship at it’s earliest kindling.

Do not forget to include patient caregivers as they are the boots-on-the-ground at home when there isn’t a doctor or nurse in sight. They dedicate more time to the patient than any doctor or nurse and sometimes know the patient better than the patient knows themselves.  Invite them to share their stories, their trials, their heartaches, their happiness, and their grief.  The results will be lasting and profound. Again, there is a sea of caregivers waiting to share their stories.  I urge you, don’t wait a second longer to start reaching out to them.

We need to start a movement, incorporating patients’ and caregivers’ stories and experiences into medical education and health care design. It’s a blatantly missing piece. This can’t start and stop at medical schools.  We need to extend this to nursing students and medical technicians.  Anyone that plans on working in health care, from the chief of the department to the nurses, to the phlebotomy technician, to the custodial or food and beverage staff, every individual needs to hear patient and caregiver stories.  I’m asking you to be the drop of water that disrupts the surface of health care, the ripple of which will reach far and wide, outside of medical and nursing schools, outside of hospitals. If many medical schools participate, that ripple can become a tsunami. As far as I know, tsunamis are unstoppable.

Empathic design and patient-centered care are buzzwords of all the rage. Empathic design isn’t about the soothing shade of white paint selected for a new hospital building.  It isn’t about incorporation of more natural light and miniature indoor gardens into hospital foyers. Patient-centered care isn’t just about improving Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores. Dearest medical schools, do you want an innovative, esteemed educational program that truly embraces empathic design and patient-centered care?  Invest in patients and their caregivers and let me know how it goes.  I bet you a dollar it’s going to be simply amazing.  Looking forward to witnessing the tsunami.

Grace Cordovano is a patient advocate who blogs at EnlighteningResults. She can be reached on Twitter @GraceCordovano.

Image credit: Shutterstock.com

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