I lost my first husband to bladder cancer in 2014 after a grueling 11-month quest to save his life. My stepfather died nine months later from congestive heart failure. Years earlier, I lost my father to liver failure after a punishing ICU stay that resulted in my mother and I having to decide whether to take him off a ventilator. (We did and he died within 15 minutes.)
I have spent hours in crowded emergency rooms, napped in gray vinyl chairs in surgery waiting rooms, and longed for more comfortable shoes in intensive care units where there was no place to sit. I’ve indulged in the snacks during transfusions and chemotherapy infusions.
It is with confidence I say that I have seen the American hospital system up close. Aside from the infusion center snacks and valet parking that some offer, hospitals have not historically been designed with the patient or caregiver’s comfort in mind. And it is hard to articulate how much more challenging these less than ideal experiences are when you are feeling sick or stressed because of a family member’s sickness.
It is in this context that I am thrilled to be a 2017 MedX ePatient on the Design Track. I will spend tomorrow at IDEO, the globally recognized design firm in Palo Alto. I will participate as a patient/caregiver member of a design team. This will include the privilege of working with a cross-disciplinary team, led by an IDEO designer, to address a health care problem that I identified.
Design Track ePatients have been working on their “homework” the last few weeks. One assignment was to identify 10 health care problems that we have encountered as patients or caregivers. I expected this to be challenging but after jogging my memory on the details of those hospital visits, I soon had a hard time limiting my list to 10. I will present three of my identified problems to my design team and then we will collectively select one to address.
Some of my 10? Would it be possible to have more privacy in emergency room conversations? More than once, I or a family member has signed the form acknowledging the hospital’s data privacy practices. And then moments later we overheard too much information (through a flimsy curtain) about a neighboring patient’s medical condition.
Another problem is when you spend many days in the hospital you find yourself constantly telling and re-telling your story to each new shift of doctors, nurses, aides, and support staff. This can be exhausting. It also seems unnecessarily repetitive.
It can be overwhelming to a patient to get settled into a hospital room after many hours in the emergency room. Fatigued, maybe in pain and on painkillers, and hungry, a patient arrives in a hospital room and is introduced to the floor nurse and the aide and is bombarded with lots of practical information on call buttons, blood draws, and IVs.
It is also common for the floor nurse to ask a long list of important but seemingly random questions. (Have you fallen in the last week? Have you had contact with certain indigenous plants from Southeast Asia in the last 30 days? Do you feel safe at home? Do you have a current tetanus shot?). It is tedious to answer these questions when feeling exhausted, drugged, or in pain.
I am encouraged about the topics the MedX conference will address. And I am inspired at the critical mass of talented people and creative energy it will harness. Patients and caregivers every day are navigating a system in which they long to have a public voice but often don’t know how to claim it.
Renata Khoshroo Louwers is a writer and a bladder cancer patient advocate with the Bladder Cancer Advocacy Network (BCAN). She lives with her husband, Tim Louwers, in Virginia and San Francisco. They co-founded the new literary journal Months To Years.
Photo by Theen Moy