“Then, tell me what happened to your mother,” she said.Since losing my mother, I have often been asked this question Clostridium difficile Infection in April 2010 (CDI). In the past 11 years, I have told her story to thousands of people in various environments and recorded it in multiple articles, columns, podcasts, news reports, and videos. eds, podcasts and videos.
Sometimes telling her story will strengthen our deep love for each other, which makes me feel good. At other times, I want to stick my head into the well and scream until my voice is hoarse. Sometimes, it makes me feel flat and isolated. Sometimes, it reminds me immediately of the white-hot anger I felt in the months after her first death. But I still think it is a sacred duty to tell the story of who my mother is and what happened to her. When my mother died of a preventable health care-related infection (HAI) at the age of 56, my family experienced unparalleled and unreconcilable losses. I sought to commemorate her memory and her life as an educator Work and make sure that her death will not be in vain.
What follows is the guidance that I developed when telling my mother’s story for more than a decade because we launched a campaign to end preventable injuries from CDI and other HAIs. We provide it to medical workers, hospital administrators, journalists, non-profit organization leaders, government officials, industry leaders, and others who want to invite patient safety advocates to share their stories at events, or collaborate on research or publicity projects People. People who are often hurt want to share their experiences, either as a catharsis or as a way to help prevent others from being hurt.
But this comes at a price. Relive the cruel 36 hours from when I arrived at the hospital to when the ICU doctor told us that she was dead. It was exhausting mentally and emotionally. Therefore, while we welcome invitations, the following “dos and don’ts” will help ensure the best experience for people like me.
Do your homework. Survivors of medical injuries and their loved ones often tell our stories to raise awareness and advocate for change. If our popularity is enough to get your attention, then our story is likely to be published online. Read it before you contact us. And don’t ask us to “tell you what happened” in the initial conversation. Revisit the injury or loss we have suffered, every time we do this will cause emotional loss. Respect that we have the right and obligation to share our story only when it can have a real impact.
Don’t ask intrusive questions (or ask your audience to do so). Telling our story requires us to be very vulnerable. In order to connect with our audience and have the desired impact, we choose to share extremely personal aspects of our lives. This may include graphic details of the medical injuries we experienced, our emotional state during and after the injury, and our efforts to heal ourselves, such as treatment, psychiatric treatment, or legal remedies. Unless specially invited, we should avoid issues related to these aspects of our lives, as well as issues about our family, marriage, and children. The trauma of medical injuries affects our family and friends, so please respect our privacy.
Don’t expect tears. When telling the story of my mother’s death, I rarely cry. I suspect this is because she is not a big weeper, but I am an experienced public speaker. I occasionally shed tears and there are lumps in my throat. But usually that’s it. I have cried many times in private.
Be prepared for tears. Of course, I know many patient advocates who cry every time they tell their story. Some people do it very frankly, very calmly. Some people do this with almost uncontrollable anger. Some sobbed, some just let the tears fall. Some people even surprise themselves. No matter what happens, you should be prepared to provide tissues, water, and let us calm down before proceeding.
Don’t ask us to arrange transportation or accommodation money. More than one-third of American households do not have $1,000 to save for emergencies. People with chronic diseases, serious injuries, or medical-related injuries are unlikely to have any savings. Many people lost part or all of their income. Part of it will depend on disability and social security payments. Most of us cannot afford air tickets, hotel rooms and other travel-related expenses.
Pay us. Before asking for compensation, I spoke at professional associations and quality improvement conferences for five years. At the time, I was working full-time while also running the Peggy Lilith Foundation in memory of my mother, so I didn’t “need” the money. However, every hour I spend preparing, traveling, or giving a speech is a far cry from raising funds for PLF or implementing our plan. These incomes must be made up. Even if your speakers do not have an organization to operate, the time spent making and delivering speeches is worth compensation.
Other reasons to compensate patient advocates include:
- DiversityMedical injuries affect all demographic Americans, but the structural barriers of racism, sexism, and classism mean that patient advocacy is mainly from professionally educated whites. Compensating speakers will greatly help ensure that people from marginalized communities — who have difficulty accessing medical services and are more likely to be harmed — can share their experiences and shape the discourse around patient safety.
- Different benefitsThe patient’s rights protector will not benefit from continuing medical education credits or restoring buildings. These credits are used as compensation for many speakers. Those intangible benefits-free participation in meetings, etc.-can be used as material compensation for medical staff, but not as our material compensation.
- Economic justiceAmericans spend 3.6 trillion US dollars on health care, but compared to other Western post-industrialized countries, we get less and worse health care. In addition, if we suffer medical injuries, our most likely remedy is civil litigation. Most of the lawsuits against doctors and hospitals were found in favor of the defendant. The average legal settlement amount for medical-related negligent deaths is slightly less than $350,000. To make matters worse, the so-called “infringement reform” makes it even difficult to file a lawsuit in many states, because the compensation ceiling means that fewer lawyers will handle cases in emergencies.
Don’t reduce us to our story. Patient advocates can provide more than just our stories. We come from all walks of life and bring different perspectives, skills and knowledge. As a patient advocate, I met HVAC experts, nurses, chemists, data infrastructure experts, X-ray technicians, pharmacists, teachers, law professors, hair stylists, and people from countless other industries. In addition to the knowledge we have at the time of loss, injury or diagnosis, patient advocates are usually self-taught experts who understand their disease, medical policies, regulatory issues, peer support, and healthcare systems. We have brought a wide range of policies, technologies and life experience, which can provide information for all aspects of health care. Not every patient advocate can or want to be more involved than sharing their stories, but we should never be limited to this.
Albert Einstein said: “We cannot solve our problems with the level of problem-creation thinking.” Patients and their families play a key role in clarifying the dangerous gaps and blind spots in our healthcare system and developing solutions. To be effective, we need healthcare leaders to interact with us, not our stories.
Photo: Mathisworks, Getty Images
