Equity in Serious Illness Care

By Robin Stawasz

Chronic and serious illness may be the best lens through which to view health equity issues. Addressing access to and quality of care issues for underserved populations coping with serious illness can be the best testing ground for creating care and payment models that work for all. Such work will also address the greatest unmet needs while having the potential to create the largest savings and reform advancements. With our current healthcare system being set up to meet acute needs and offering just some primary care, rather than addressing chronic conditions and offering proactive, holistic care, many Americans are left unable to afford healthcare and clinical outcomes are some of the worst of all developed countries. 

A likely contributing dynamic in our current healthcare crisis is that we treat the average. By focusing on the average needs of the average American, we miss the real problems that are bound to occur, as well as miss the opportunity to find impactful solutions. When we broaden our focus to bring in minority populations, whether that is based on ethnicity, gender, age, race, socioeconomic class, sexual identity, geography, or insurance status, and take into account that the majority of us will face chronic, debilitating conditions at some point in our lifetime, we set the stage to create a healthcare system that provides for us all through out our lives. Not only is such a system more equitable and effective, but it is also more financially sound as it is prepared for the eventuality of decline, not taxed by it as if it is an unexpected outlier. 

So how do we create such a system? There are concrete steps we can take. First, support new payment models that include interdisciplinary care that is whole-person and family centered and is available 24/7. Hospice providers are ahead in this model of care and need to be willing to apply that model outside of the end-of-life realm. Also, make sure that any efforts to address health inequities are developed with input, involvement, and investment of those who are most severely affected. Next, utilize real world data. Only by knowing the specifics on each individual’s clinical story can we move away from treating everyone as if they are the “average” and start tailoring care to their unique needs. I know that this is the way I want to be treated, especially when seriously ill – as an individual, not as an assumption. 

Source Material: Improving Access to and Equity of Care for People with Serious Illness: Proceedings of a Workshop. National Academies of Sciences, Engineering, and Medicine. 2019. Available for free download at https://doi.org/10.17226/25530.