When I tell people that I’m a board certified patient advocate, I usually get a blank stare, a distracted smile, or occasionally, a “what’s that, exactly?” After a few more minutes of explanation I usually see understanding dawn, “aah, I didn’t realize that was a formalized job.” Exactly. Many professionals perform the job of “patient advocate” as an intuitive part of their work behavior, but the truth is that our fragmentized healthcare system is too fragile to leave these crucial skills up to chance. I certainly wouldn’t want my appendix removed by a surgeon whose only experience was that he’d had his own appendix removed, and had a ‘feel’ for abdominal surgery. I’d like to know that she was trained in the operation, in addition to having experience and an intuitive sense.
So why include patient advocacy into your clinic/ward/hospital system?
- Your patients are lost. You think that your patient understands your medical explanation of their diagnosis, their treatment plan, their discharge options? They don’t. In a recent review of 28 studies, overall patient understanding of their hospitalization was poor, especially in the areas of medications, diagnoses, and care plans (1). You need someone designated to make sure that your patient understands the process, how they fit in to that process.
- No one, not even doctors, understands system bureaucracy anymore. I don’t think I have ever seen ‘Referrals 101’ on a medical school syllabus. Neither physicians nor nurses are taught about the health system’s requirements for reimbursement, criteria for referral or even what specialist will perform a specific procedure. I waited for over a month for an appointment with a surgeon for my daughter, on my family doctor’s recommendation, only to discover that the surgeon never performed that type of procedure and I was back at square one. For better or for worse, bureaucratic navigation is its own specialty and requires someone with the know-how to navigate it.
- Your patient is overwhelmed. No matter how organized, intelligent, or “on the ball” your mother of the pediatric oncology patient is, she’s cracking under the strain of life with a child with life-threatening illness. Even the spouse of a chronically ill patient, no matter how long she’s dealt with the issues, is tired. There are many rights and benefits not being actualized because it is really too much for one person to manage, especially when they are dealing with the emotional package of illness in the family.
- Social workers and nurses are not trained in health advocacy. I completely agree that many of these professionals have these skills, and that, in their essence, these professions do contain health advocacy, but being a nurse does not mean that you are inherently a patient advocate.
- Your staff is overworked; don’t give them one more duty to perform. In his book Outliers, Malcolm Gladwell coined the term ”10,000 hours” as a suggested rule for how long it takes to truly master a skill set. Obviously, you don’t need ten years to understand how to help someone communicate with their physician, but I don’t think it is fair to expect a medical professional to have developed expertise in a field that s/he has not had routine exposure. Including a professional whose specific job it is to assist the patient in navigation, treatment comprehension and access to rights and benefits, means removing that burden from the medical team so they can practice medicine.
Just as we would not ask our family doctor to file our taxes, I think we need to realize that ensuring that a patient’s medical needs and rights are met within the larger healthcare system is a job unto itself and guarantees a truly holistic and complete healthcare unit.
1. Sommer AE, Golden BP, Peterson J, Knoten CA, Hara LO, Leary KJO. Hospitalized Patients ’ Knowledge of Care : a Systematic Review. J Gen Intern Med [Internet]. :2210–29. Available from: http://dx.doi.org/10.1007/s11606-018-4658-5