“Nothing About Me Without Me” A Person (Not Patient) Centric Approach To Healthcare Delivery

Patient and family-centered care (PFCC) has evolved over the last 30 years as more individuals have wanted a greater say in decision-making about their health care. Thus, patient-centered care evolved as a philosophy and model for healthcare systems, providers and practices to approach the care of an individual. PFCC is about improving health care delivery and effectiveness by partnering with patients and their family members to provide better quality care and safer care. PFCC has been recognized as an essential mechanism for valued based healthcare and changing reimbursement models as well as patient and family satisfaction. The Institute for Patient and Family-Centered Care (IPFCC) defines the principles of PFCC as: dignity and respect, information sharing, participation, collaboration.[1]

While there may seem to be nuances in patient versus person-centered care, I believe there is something intrinsically different about the approach to the care when using one term versus the other. If you are approaching care from the “person” view there is a level of humanity that is recognized. Approaching care through the lens of patient-centered care more closely aligns with the idea of treating an ailment because one is sick. In patient-centered care there are clinical pathways and standardized ways of approaching the care of an ill patient. When we take a disease-centric approach, we may focus too narrowly on the pathology that brought the patient to the door step seeking care.

Putting humanity back into healthcare

With person-centered care, immediately the term makes me think differently…When I hear person, I think human. I think about that person’s interactions with others and with their surroundings. When we begin to think about treating the person behind the illness there are many factors that should be considered. What other things are occurring in their life that might be barriers to their care? How is this diagnosis emotionally impacting them or their loved ones? Person-centered care allows us to think outside of the “standardized care” box. People don’t arrive to receive care packaged like a perfectly wrapped William Sonoma box, they come with wear and tear from experiences that they have lived through up until that moment when they walk into a doctor’s office, and those experiences to date matter…they matter a lot.

While healthcare tries to speak to some of these experiences through patient and family-centered care, I believe we miss the mark a bit. From the start when we use the word patient, we are down a path of describing someone who is typically being treated for something: illness, disease, etc. Using person-centric language provides the opportunity for a more preventative view of healthcare as well. Person-centered care, in my perspective, allows a more equal playing field when it comes to things like shared decision making and feeling truly like a partner in care planning. We as humans, patients, parents, siblings, partners want an equal seat at the healthcare decision-making table and I think the best way to do that is by being conscientious about our word choice and how it frames the conversation about our health. Tweaking language is not about a practice change: pathways and standardizing of care will always exist, it is how we have made great advances in medicine, BUT the shift in language helps allow for a shift in the approach to healthcare. Person-centered care allows the personal component to be at the forefront of healthcare. While the principles for either patient or person-centered care may stay the same: dignity and respect, information sharing, participation and collaboration (1), the approach may be different in person-centered care.

It’s not just about the interactions between the provider and the person, it is a bit more systemic than that in healthcare. Donald Berwick, the former President of the Institute for Healthcare Improvement and former Administrator of the Centers for Medicare and Medicaid Services, drives this systematic healthcare issue home in a 2009 interview.

“We have built a technocratic castle, and when people come into it, they are intimidated. Patients keep having to repeat their name because the system has no memory. We dress them in silly-looking gowns. We give them the food we make instead of the food they want. We don’t let them look into their medical records unless they have permission. Health care keeps telling patients the rules instead of asking patients about their individual needs. What is said is, “This is how we do things here,” not “How would you like things done?””[2]

What does person-centric care look like?

Before joining the Health Union LLC team, I ran a weight management clinic at a pediatric hospital. We saw patients whose BMI (Body Mass Index) met the criteria for the categories of overweight or obese. We built a beautiful clinic with an onsite gym and teaching kitchen that were used with the patients and their family members during appointments. The team was staffed with doctors specializing in Endocrinology and Obesity medicine, we had registered dietitians, a clinical psychologist and physical activity specialists to care for “the whole patient.” While the clinic was set up for success physically, we realized quickly that on a day to day basis we had children and families coming to us for care who had no access to a grocery store in their neighborhoods, we had families who couldn’t get outside for that 30 minutes of recommended exercise because their neighborhood wasn’t safe after a certain time. We had to change our practice’s model. What we would “prescribe” for one family was not going to work for another. Each child and parent (or grandparent ) that came to an appointment had unique challenges, personalized goals, and “success” could not be measured the same way for each person.

Working at Health Union LLC, I have the pleasure to read stories and comments from individuals living with chronic health conditions or their loved ones who help in their care planning about their experiences both in and out of the healthcare system. We often see comments about frustrations with not being heard by a provider, comments about prescriptions that are costly and unaffordable for the individual, comments from folks desperately seeking help and advice. While Health Union’s online communities provide the space to share those thoughts and feelings and our model helps validate that each individual’s voice and experience is valued, it still greatly troubles me that each of those individuals aren’t getting what they really need from the healthcare space and their care team.

I genuinely value the therapeutic relationship between a healthcare professional and an individual seeking care and it feels like it’s about time to for us to remember that behind every medical record number there is a person who has lived a life, who has experienced difficulties and successes, who is an expert in their world, who knows themselves well and should be actively engaged in their care planning. Most importantly, they are more than their disease or illness and deserve care that is personalized and supports that whole person’s needs and choices.

[1] Johnson, B. H. & Abraham, M. R. (2012). Partnering with Patients, Residents, and Families: A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities. Bethesda, MD: Institute for Patient- and Family-Centered Care

[2] Chen, P MD. (June 4, 2009) “Letting the Patient Call the Shots” Retrieved from: http://www.nytimes.com/2009/06/04/health/04chen.html?mcubz=3