Stories can move us to tears, change our attitudes, opinions and behaviors. They even inspire us and change our brains, often for the better. Patient stories go beyond the statistics, quality measures, outcomes and cost to what makes us human: love, fear, anxiety, joy, sadness, dignity, pride, frustration and hope. Patient feelings, such as fear and hope, trigger psychological and physiological responses that over time can impact health, recovery and behavior.
Jess Jacobs, a smart young women worked to improve the healthcare system while suffering from two rare diseases postural orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos Syndrome (EDS). It is hard not to feel many different emotions while reading her personal healthcare experiences and frustrations that she generously shared with the public. The 29-year-old healthcare professional, had many accomplishments at Aetna and the US Department of Health and Human Services before dying early this month.
Patient stories offer insight into our healthcare system (which determine only 10-20% of health outcomes) as well as the other 80-90% of patient determinants that drive health outcomes. The stories illuminate our human emotions, behavior, social and environmental determinants. Physicians and healthcare professionals experience these stories every day, while most others become quick learners during the most vulnerable times of their lives. The stories help to relate to patients, caregivers, physicians and other healthcare professionals during their journey. They begin to explain how the non-healthcare determinants impact human behavior and treatments.
Here are some powerful examples that have been shared:
Ruby is a 39-year-old woman that is nearly blind and unable to walk more than a step or two. She struggles to raise three sons while dealing with a daunting array of health conditions from diabetes to pain from bulging spinal disks. Without the help of her health coach Nhaomie Douyon, odds are she’ll end up back in a hospital.
A tall, lanky 88-year-old man with an air of quiet dignity. His past year had endless cycles of medication adjustments carried out by dueling specialists, emergency-room visits and hospitalizations. His doctor discovered an important question that patients should be asked. “What are your goals?”
A vibrant 68-year-old woman from Haiti was always impeccably dressed, loved to talk, and had an incredibly infectious laugh. While her surgery successfully removed her cancer mass, she would not agree it was a success.
32-year-old Jamie Hancock, mother of children ages 1 and 3 had to adjust to a new life after a stroke. Six years later, no one would know she is a stroke survivor. The effects lie within, as Jamie struggles with forgetfulness, mood swings and loss of cognitive ability to do things such as handle the family finances
A man, sober for one year, struggles with his life and love for alcohol. Rather than being proud of his accomplishment and making his kids happy, he was sad. He grew up in a family of heavy drinkers with alcohol being a big part of all his memories. He misses alcohol every day.
Rebecca Bryson has 10 different medical conditions and depends on 13 health care providers. Her life improved when a program funded a Clinical Care Specialist and the creation of a Shared Care Plan. Rebecca attributes her being alive today because of Nancy, her Clinical Car Specialist.
A man suffering from an infected artificial shoulder couldn’t afford intravenous antibiotics three times a day for six weeks in home. As a small business owner, he couldn’t afford to be away from home. Rather than helping the patient with the cost of home care, Medicare spent an unnecessary $30,000 on hospitalization and care.
Six short videos, each just 3 minutes or less, gives us a chance to meet caregivers like Donna & Nicki, the brother and sister team of Jeff & Patti and 92 year-old Roberta’s daughter and grandson.