Expert Insights
The Art of Patient Advocacy: Learning Through Experience
The Art of Patient Advocacy: Learning Through Experience
Two years ago, I set out to learn what Patient Advocacy was all about. I was excited to pivot my career and start a business. I started with the following question: What is the difference between a nurse case manager and a Patient Advocate. The only reference point I had was as a nurse and nurse case manager because I had been a nurse for over 44 years and a nurse case manager for over 20 years. Patient Advocacy seemed like the same role, already incorporated into my previous roles. So, I started by looking at the role as a case manager as defined by The Case Management Society of America (CMSA).
The 2016 CMSA definition of Case Management states that it is “a collaborative process of assessment, planning, care coordination, evaluation and advocacy for options and services to meet an individual’s and family’s comprehensive health needs through communication and available resources to promote patient safety, quality of care and cost- effective outcomes.”
If you look closely at the definition, you will notice the word “advocacy”. OK, so now I needed to look at the definition of the role of a Patient Advocate. According to the Alliance of Professional Health Advocates (APHA), “advocates focus on two aspects of healthcare: Care and Cost. They offer a wide range of non-medical services ranging from accompanying patients to their doctor’s appointments, to sitting by the bedside in the hospital, to reviewing and negotiating medical bills. Some advocates focus on one particular disease or approach to care. Another advocate might focus on complementary and alternative treatment, or on end-of-life decision-making. Still others have nothing to do with care itself, instead focusing on billing and claims aspects of a patients’ medical care of legal filings for disability. The overall goal of advocates is to provide patients and care givers with the support and education they need so they can make their own decisions about their next steps.”
It started to become clearer to me. I could do this.
“Doctors, nurses and other providers find constraints on their work and abilities for many reasons, including time limits based on the patient’s insurer. Providers work with hundreds of patients, some seeing dozens every day. Their paychecks are derived by a practice, a hospital or another provider facility, which in turn is paid only the agree-upon reimbursement from insurance. They are therefore beholden to the payer organization first-and their patients second.”
So, then my next question was, “how then, will I get paid for my services to place the needs of my patients first?” The answer was that as an independent, private professional advocate I would be paid directly by the patient or the caregiver of that patient. That made sense. I soon began to hear about The Allegiance Factor”, which simply stated, is “based on who compensates the advocate and whether that creates a conflict of interest. An advocate cannot afford to challenge the source of his or her paycheck. If the paycheck comes from the patient, or the patient’s benefactor*, then that’s where the allegiance will lie, and that’s the only way a patient can know that there is no conflict of interest; that he or she is being helped by someone focused on his or her best interests first.”
I felt ready to learn the business side! I started to check off all the boxes for starting my business. I had done my research. I started to look at how I would attract business. I knew as a case manager, my cases were referred to me by the insurance company, and my services were paid by the insurance company. I began to understand how important it was to be paid directly by the patient, in order to be beholden to the patient first. I needed to understand why patients and families were referring to me.
The word FUDGE Factor kept coming up in my research. What it meant was that there were several identified factors that push a patient or family to seek out a Patient Advocate. Those factors were Fear, Uncertainty, Doubt, Guilt and Exhaustion. I decided I would pay attention to this, when I began getting Clients.
Six months went by, and it was time to “turn the lights on” for my business. The calls started to come in but they were not converting to Clients. What was I missing? I had plenty of clinical and professional experiences. I surrounded myself with a good network of resources. I knew that I could help Clients. Then one day I got another call. It was from a daughter. She said she felt exhausted. She lived out of town and was traveling often to now help her elderly parents and things were spiraling out of control with their medical care. She could see that something needed to be done, but she did not know what. She felt bad that she did not live closer to help. That was a moment that I will always remember. Instead of focusing on the “tasks” that I could do, similar to how I would think as a case manager, I remembered the FUDGE Factor. I began to focus on her emotional state. How could I help her alleviate this stress, as a Patient Advocate. How could I alleviate the FUDGE Factor? Putting that first, I discovered, was the ART of PATIENT ADVOCACY. We began there. We began to work together and focus on how to relieve HER stress. Everything else fell into place. We became a team, advocating together for her parents.
With time and experience I began to understand what makes us different, as Patient Advocates. Not only do we put the patient first, with our allegiance to the patient first, but we focus on alleviating the emotional pain, that patients and family members feel, when they are faced with a serious medical condition and navigating the health care system. Utilizing my professional experiences and expertise is very important, when advocating for patients. But the ART of PATIENT ADVOCACY will always be about alleviating the emotional pain associated with dealing with a serious medical condition and navigating the health care system.
