In about 2015, I began to search for more meaningful work.
As a venture capitalist for the last 20 years, my firm had invested in medical device, diagnostic tools, and services companies. I had found it very satisfying to see innovative concepts that could help improve patient care make it from idea to the marketplace. Over time however, I became acutely aware of the challenges that patients and families face when making complex decisions and interacting with the healthcare system, particularly with serious illness and end-of-life issues.
As my interest and knowledge grew, I talked to everyone to find anyone that would make a place for me—large medical systems, small groups, concierge practices—and allow me to share my knowledge and expertise. But I did not fit; no one knew what to do with me. Finally, after years of searching, a friend suggested I contact the National Hospice and Palliative Care Organization (NHPCO).
Goal Setting with NHPCO
Founded in 1978, NHPCO is the nation’s largest membership organization for providers and professionals who care for people affected by serious and life-limiting illness. Its broad community of members includes local hospice and palliative care providers, networks serving large regions of the United States, and individual professionals. Since 2006, NHPCO had hosted a CaringInfo website that focused on providing, free of charge, state specific, curated Advance Directives and other hospice service focused resources.
As NHPCO and I talked, a larger goal for CaringInfo emerged— we could help educate and empower patients and those caring for them throughout the experience of serious illness. We wanted to be a guide that would facilitate people identifying information they needed, then finding the information they seek, and uncovering information they didn’t realize they needed to know. The end result of our efforts would be a resource, CaringInfo.org, that serves the public good and richly links to numerous sites providing valuable information.
Personal and Professional Experience Led Me Here
The goals of the website sprang, in part, from my personal and professional experiences. My sister and I navigated our parents through 10 years of serious illness and facilitated their end-of-life choices. That was my first experience with what it took to bend even the most well-meaning system to the specific wishes of a patient and their family. I discovered that it was incredibly useful to be prepared with medical knowledge, vocabulary, and experience of how the system works. I could make myself heard and advocate for my parents’ wishes effectively. Now, I advocate for my husband, who has advanced Alzheimer’s Disease and I continue to find myself discovering things I wish I had known sooner. I know from experience how lonely, how isolating, how exhausting, and how scary the experience of navigating the caregiving journey, much less the healthcare system, can be.
My career has not always been in venture capital. It has been intertwined with human healthcare from its earliest days, when as a resident in veterinary surgery I spent 3 months in a rotation in pediatric thoracic surgery at Children’s Hospital in Columbus, Ohio through spending 12 years on faculty in the Department of Orthopedics, School of Medicine, Case Western University all the while still practicing veterinary surgery. In many ways, medical science and surgical techniques are the same between veterinary medicine and human medicine – what has been different is the system within which each are practiced. Until fairly recently, most veterinary practices were small and relatively unfettered by third party payers (insurance), marked specialization, and heavy regulation. This facilitated a ‘personal touch’—a real connection—between providers (veterinarians) and patients (owners and pets). Because of this, I learned to see the patient (pet) within a context of relationships, not uniquely as a individual with a medical problem to be diagnosed and treated. This is not to say that many physicians do not have the same point of view, it is just more difficult to live it when embedded in the complex systems that are healthcare in the U.S.
Our healthcare system is wonderful in many ways—providers are very well-trained, we have cutting-edge technology and the latest facilities—but it is also very fragmented, as well as very complex. We (patients and caregivers) are often called upon to make decisions for which we feel ill-prepared, lacking information, perspective, and often, time to reflect.
CaringInfo Fills a Gap in Today’s Complex Healthcare System
CaringInfo was designed to provide accurate, objective information and links to resources so that people could be better prepared for the decisions they will face. In my opinion, medical decisions are only partly about the science, about the specifics of treatment or not; they are about the whole person and their unique universe of experience, community and internal life. We are not machines to be adjusted, we are humans living our one and only lives. Good treatment decisions are fully informed decisions, where the decision-maker understands what the likely outcomes of the choices are—both potential benefits as well as harms. The optimal decision for one patient with a given condition may be quite different from another patient with the same condition, because each has different values, preferences, and beliefs. And, it is one thing to know what you want—it may be quite another to get it from the healthcare system. CaringInfo strives to empower you, so that you know your rights, that you are equipped to have difficult conversations, and that the sometimes relentless nature of serious illness and caregiving doesn’t completely overwhelm you.
Ideally, everyone would have their own patient advocate, but that is not possible. What is possible is to provide good, easy to understand information so that individuals, families, friends, and communities can advocate for themselves. CaringInfo is here to help fill that need for you, those you may care for, or those in your inner circle that are trying to make many decisions.
Explore our guides, resources, and information on types of care to help fill the gaps in your knowledge and feel more empowered to make decisions that fit the needs you have.
