Karen Smith insisted on being a part of the health care team treating her son and father. Because of her close relationship with both, she was able to notice and prevent errors made by medical staff. This dedication ultimately saving her son’s life. As a result, Karen founded the nonprofit, Excitant Health, to share her experiences and let others know the importance of being involved in your loved ones care.
My son, Michael, was a 22 year old busy, athletic college student when a huge mass was discovered in his chest. Emergency thoracic surgery revealed an infection against his heart, lungs, diaphragm, esophagus and trachea. It had eaten through the faces of his vertebrae from his neck to mid-back. One day later and sepsis would have taken him.
I didn’t leave the hospital the whole time he was there. I was surprised to discover that there was still a mixed approach regarding how to engage patients and their families. One physician welcomed my involvement, while another made clear that he thought I should just go home. But had I not been there, knowing my son, and being the expert on his behaviors and signals, I wouldn’t have been able to prevent a morphine overdose. I stopped a nurse, as she was preparing to give him additional morphine, because I knew that he was having apnea spells. It turned out that hadn’t been conveyed to the doctor. It wasn’t an intentional oversight, but could have been catastrophic. What if I wasn’t there? What if I was, but didn’t speak up? Even if I hadn’t been sure of the danger, but just suspected, speaking up and respectfully insisting that the safety be verified would make the difference. Michael had three chest tubes and was in intense pain. He was vulnerable and terrified, with no capacity to advocate for himself. He says he can’t imagine having gone through that without me there, that my presence made all the difference.
I recently spent several days and nights in the hospital with my 93 year old father when he had shingles of the face and eye. I inserted myself as part of the care team, right along with all of the docs and nurses. He was a fall risk, so I got up with him at night, worked with the nursing staff to create a schedule that would allow for him to rest and administered his four eye medications, with the permission of the ophthalmologist, which freed up the nurses, as it was a difficult schedule to keep up with. While each of the staff only seemed to have a partial picture of my dad’s situation, I was able to bridge the gaps so that nothing was overlooked. This kind of teamwork benefits everyone! But how can it become the norm?
Thankfully, the patient-centered care movement has opened the door. Patients are involved in many aspects of hospital development and policy setting and care providers are learning to communicate better and bringing patients into the decision making process. But there is still a missing piece of the puzzle. Patients and families don’t know HOW to engage and are often too fearful to do so effectively. I believe we need to go beyond inviting patients into the conversation and show them HOW and WHY to take an active role. At the same time, we need to help care providers understand that facilitating this partnership will actually make their jobs easier, more rewarding and will contribute to safer and more effective delivery of care. I realize that not all patients and families are able or willing to become involved in this way, but so many DO want to. They just don’t know how.
And so I founded Excitant Health. Excitant means to activate, to enthuse, to elicit a physiological or behavioral response. Our goal is to develop a program that can be embedded into hospital and clinic admissions, bedside communications, community classes, and medical, nursing and allied health school curriculums. At the same time, creating a parallel program that reaches patients and communities at large to improve healthcare literacy and instill the courage required for people to effectively speak up and be heard. We need to touch all participants along the healthcare continuum from communities and patients to care providers and leadership if we want to change the culture. I want to collaborate with any and everyone who wants to make this a reality: hospital systems, medical, nursing and allied health schools, community health programs. It’s a huge, audacious undertaking and we need a massive chorus!! It can’t be done by a single voice shouting into the void.