The Emerging Role of Patient Health Advocates

Although I worked for 38 years as a nurse, it wasn’t until my father-in-law fell critically ill on a cruise ship off the coast of Belize that I came face-to-face with the terror and frustration that people experience when a family member has an acute medical crisis. In my case, I was able to successfully intervene when a hospital in Belize was set to release my father-in-law despite what I knew was a life-threatening blood clot. While helping navigate the complicated health system on my father-in-law’s behalf, I realized how difficult it must be for families without my professional background and training. That event is what prompted me to create my company, North Shore Patient Advocates in the fall of 2011.

Because of my father-in-law’s health crisis, I had a chance to view the “hospital experience” from the inside out, as a family member. This completely foreign vantage point was a valuable learning experience: an epiphany of sorts. Over six weeks, in various hospitals in both Belize and Illinois, I saw some of the best and worst of modern healthcare. Communication problems between practitioners, multiple crises requiring emergent surgical procedures, allergic reactions to medicines, an instance of almost bleeding to death, dangerous new clotting episodes, and several ICU admissions convinced me of the great need for professional advocacy.

Fighters in Patients’ Corners
What would have happened if I had not been there when disaster struck? The family agreed that he would have died. I was thinking of little else but standing guard, watching and observing, asking all the right questions and asserting myself when necessary. I knew my father-in-law better than any of the care providers did, plus I had the advantage of advanced clinical expertise. I was a seasoned ICU nurse who also had worked as a cardiovascular nurse clinician for a busy interventional cardiologist. I was comfortable handling complex medical and surgical patients with multi-system pathology. Not many families have the luxury of having someone like that in their corner. Fortunately, my father-in-law had a positive outcome. He is healthier today than he was six years ago. Not everyone is so fortunate.

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When I returned to work after our family’s six-week ordeal, I had a new empathy for families, and I began to advocate even more strongly for patient safety. Many years previously, I came close to being fired over strongly advocating for a patient who suffered multiple complications from a major surgery. When I asked the doctor why my patient was not being sent for scans and exploratory surgery for multiple episodes of bleeding, I soon found myself on a ten-day suspension from work for a “charting omission.” I was satisfied in my heart that I had taken the right stand, but I heard the message loud and clear: Don’t make waves.

Nurses have a bill of rights just as patients do, and one of our rights states that we should not be persecuted for advocating for patients. But medicine is big business, and advocacy can come with a price. Nurses who go up against big money-making surgeons and threaten the image of the hospital by drawing attention to errors can quickly find themselves “expendable.” Many nurses are playing it safe these days, keeping their heads down and not making waves unless they have to. Nurses are ambassadors for the hospitals, expected to provide quality care, avoid errors and make the hospital look good.

This shift has opened the door for private patient advocates, independent professionals who work on behalf of families. These professionals not only help families navigate the complicated healthcare system, but also provide a trained set of eyes that can reduce hospital errors and improve patient outcomes.

Dangerous Errors
Since 1999, when the landmark study “To Err Is Human” rocked the medical establishment to its core, patient safety and medical errors have been top concerns in hospitals throughout the country. The first and largest study of its kind, “To Err is Human” found that an alarming 20 to 30% of patients who entered hospitals experienced some kind of “adverse medical outcome,” as medical errors are called within the system. In 2013, another large study published in the Journal of Patient Safety revealed that the original estimates were low, and that what the hospital industry had been doing over the past 14 years had been largely ineffective in resolving the problem. Surprising? Not to those of us who worked in hospitals. Medical error is now the third leading cause of death, behind cancer and heart disease.

The move in the past 15 years to electronic charting and hospitals’ insistence on documenting everything have taken nurses away from the bedside, increasing the chance of errors. Nurses must have keen powers of observation and are expected to quickly and critically analyze tests and clinical findings, yet excessive charting requirements designed to protect the hospitals’ liability has impacted nurses’ ability to do what they were trained to do. The new mantra has become, “If it did not get charted, it did not happen.” Nurses now are taught to cover their behinds above all else and the focus has shifted from the patient to the computer. It is no wonder that the potential for medical errors continues to grow. A looming shortage of nurses and primary care physicians is predicted to peak in 2018. It will be interesting to watch how the hospital industry endeavors to fill the gaps as well as how the shortages will affect patient care.

The future, however, is not all grim. Private professional health advocates are now beginning to come out of the woodwork to give patients and families a personal option to improve their odds of avoiding the pitfalls of modern healthcare. I am a strong believer that people are in need of some extra guidance when their family members are either in the hospital or going through a chronic, problematic healthcare challenge. Why should people hire their own advocate instead of relying upon the hospital’s patient advocate?

One word: allegiance. Hospital advocates work for the risk management department of that particular hospital. Their job is to smooth out complaints and keep the hospital from being sued. Risk managers show up when doctors leave sponges in patients during surgery, or patients’ families complain about quality of care issues. They get their paychecks from the hospital. Though they are great at handling small complaints and negotiating bills when obvious errors have been made, risk managers and hospital-based advocates are there for one reason: to save the hospital millions of dollars per year in legal fees and protect the hospital’s public image. The same is true for insurance company employees who call themselves patient advocates. Their job is to promote positive relations with customers while saving their company millions of dollars every year by limiting payment of claims. So it’s a matter of money. Whoever is paying the advocate’s salary is going to reap the greatest benefit.

Personal Advocates
That’s where private advocates come in. Private professional advocates are paid consultancy fees by the client to work the system to achieve better outcomes. Nurse advocates with strong clinical backgrounds are street-smart and savvy about whom to go to in hospitals to get what they want for their clients. They review medical records and see red flags in charts that the average non-medical client would never notice. They know how to stand up for their clients and how to interact with medical professionals in a non-threatening way to get what their client needs, keeping him or her at the center of the healthcare model. A professional patient advocate is focused on three main priorities: quality care, preventing medical error and protection of patient rights. They also can save their clients thousands of dollars when negotiating with insurance companies, not to mention saving lives and bringing peace of mind to families in crisis.

Besides helping patients, professional advocates benefit hospitals by reducing hospital readmissions, preventing medical error and providing improved communication and education to families in crisis. Nurses have long been at the top of the Barna research group’s poll in the “most trusted profession,” and I believe it is for good reason. We see it all, we know the danger spots, we understand patient rights and we protect our own families when they are going through healthcare crises. We know who to talk to in hospitals to get the most appropriate attention and understand the hierarchy of healthcare in a way that the general public cannot. That’s why nurses are poised to play a major role in the burgeoning field of patient advocacy. While some may see hiring an outside advocate as adversarial, many doctors actually welcome the relationship. Busy doctors would rather spend five minutes updating a medical professional than 20 minutes with an overwhelmed patient. They know the advocate will educate the patient.

Oversight of Patient Advocates
The new field of private professional patient advocacy has great potential for helping people navigate the complex world of healthcare, but there are things the general public needs to know right from the start. First, there is no national accreditation process in place yet. The National Association of Healthcare Advocacy Consultants has recently developed a set of recommendations called Best Practices and Standards, including Ethical Guidelines that will be a first step in the national accreditation process. These guidelines were presented at the NAHAC national conference in Chicago in October of 2014.The three main advocacy associations, NAHAC, the Association of Professional Health Advocates and the PPAI, (Private Professional Advocate Institute) are presently collaborating to decide what qualifications shall be required of professional patient advocates as well as what the testing and national accreditation process will look like. This process is predicted to take another 2-3 years.

Right now there are several large and well-qualified educational training programs throughout the country for those wishing to enter the field. Unfortunately, there are also people who call themselves private professional health advocates with questionable qualifications and very slick marketing campaigns. Some are strictly business/marketing people who will charge large monthly maintenance fees to cover “all of your healthcare needs,” though they lack personal mentoring or physicians or nurses working alongside them who even know what good healthcare looks like. Because professional advocates vary in their educational background and training, people should ask about their credentials and experience when they interview them.

It’s important for people to know what their needs are before hiring an advocate. Perhaps they need someone to simply negotiate with their insurance company to pay their medical bills. Perhaps they need a physician or nurse who has sharp clinical skills to oversee the entire medical crisis. People shouldn’t go looking for an advocate without a clear sense of what their family needs, and they should pay attention to their instincts when they meet the company representative. They should ask about their experience with successfully advocating in situations similar to their own challenge. Finally, they should read the contract carefully before signing on the dotted line. Services rendered (not covered by health insurance) typically run between $125 and $500 per hour. People should get a quote for services that they feel may be bundled together. The key is for people to ask any questions that they can think of beforehand. Some private advocates will work alongside their clients and teach them how to be a more effective advocate for themselves, thus saving their clients time and money in the long run.

With today’s complicated healthcare system and its often over-burdened employees, everyone needs a healthcare advocate these days. Nurses’ professional training and natural role as patient advocates makes them prime candidates to play a major role in this growing field.

Teri Dreher, RN, CCRN, iRNPA is founder of the Chicago area’s North Shore Patient Advocates, LLC, a member of the Board of Directors of the National Association of Healthcare Advocacy Consultants and a member of the Association of Professional Health Advocates.

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