‘Do I Need a Patient Advocate?’

By Roseanne Geisel, guest article for Being Patient, Patient Advocacy series, May 18th, 2020

You may have heard of them, but what is a patient advocate? Roseanne Geisel discusses the advocate’s most important mission: to reduce the stress and fear of patients and their loved ones during a very challenging and emotional time. 

When I was pregnant with my daughter 21 years ago, family and friends suggested that I hire a baby nurse to help for the first few weeks, especially because my husband and I did not have family nearby. That way, they said, I could get a few hours of sleep when the nurse was on duty, and an experienced nurse would reduce my stress by teaching me what I did not already know about infant care. With more sleep and less stress, I could enjoy the wonder of my newborn so much more, I was told.

I ignored the advice, thinking that I wanted to be the one to take care of my newborn. I learned too late that the advice was sound. I wish I could have focused on my baby without worrying about everything.

I think of that story often because it reminds me of the most important role of patient advocates: to reduce the stress on the patient and the patient’s loved ones. 

When my dad and, five years later, my mom, experienced serious, sometimes painful and ultimately terminal illnesses, I wanted to be focused when I was with them. I wanted to have the energy to be supportive and savor special moments, even just sitting quietly and holding their hand. Stress diminishes the ability to do that. I couldn’t be focused when I was worried about reaching a doctor to ask questions or whether any sibling felt that they had a disproportionate share of the tasks required to manage the care. There were times when I thought it would be wise to seek a second opinion, but I was concerned that the current physician would be annoyed. (They won’t. They may even be glad.) Plus, how do you find someone to render a second opinion?

Those feelings resonate with colleague Trish Laub, author of the Comfort in their Journey book series and consultant on caregiving and end of life. She recalled, “When I was first responsible for overseeing the daily care and managing the medical care for my dad who was living with Alzheimer’s, I often felt overwhelmed by the numerous aspects of daily care and medical care that I needed to track. I feared that I wouldn’t know how to deliver the best care. I later learned that a patient advocate is a person who acts as the quarterback of a care team, coordinating the care and protecting the rights of a person in need of care. They are truly invaluable.” 

How Patient Advocates Help

A board certified patient advocate can help reduce the overwhelmed feeling that family caregivers often feel and the very human resentment that can emerge when we are exhausted. An advocate has chosen to enter this field and has taken courses or participated in other forms of professional development, read articles, and gleaned valuable information and insights from colleagues to know how to ensure the patient’s best interests are the basis for every treatment decision.  

Therefore, you have a person who can keep an eye out for situations that are not going as planned, pose questions when they arise or monitor your loved one in the hospital when you can’t be there. They also can coordinate care so that every member of the health care team has the latest information about the patient’s treatment.

Patient advocates provide a spectrum of services related to medical care. Some offer medical guidance in one area, such as Alzheimer’s; others act as navigators through multiple medical specialties. Patient advocates may also mediate family disagreements over a loved one’s treatment; offer a safety evaluation of a person’s home; or help with the “business end,” including insurance benefits, claims and appeals, and reviewing bills from providers and hospitals. There are a few different titles that independent patient advocates may use, including case manager or navigator. The title is not as important as whether the services meet your needs.   

The Code of Conduct and Professional Standards prohibits an advocate from making decisions for the patient or the patient’s loved ones. Instead, an advocate’s job is to present all the options so the client can make an informed choice.

How to Find a Patient Advocate

Three professional associations represent patient advocates:  the Alliance for Professional Health Advocates, Greater National Advocates and the National Assn. of Healthcare Advocacy.  All three of these associations have advocate directories that let you search by location or services and expertise required.  An independent patient advocate is not employed by a hospital or insurance company, and therefore is beholden only to the patient and the patient’s family. For that reason, a patient advocate’s services are not covered by insurance.

Another method of finding an independent patient advocate is to google “patient advocate specializing in (services you need) in (location you need).”  If you are not looking for an advocate to physically be with a patient, for example attending medical appointments or monitoring at the hospital, you can hire an advocate based in any location.

How to Choose A Patient Advocate 

The Patient Advocate Certification Board offered the first national certification exam in 2018. Those who pass the exam earn the board-certified patient advocate (BCPA) designation. That is one criterion that can be used to select an advocate.  

More importantly, the directory listings and their websites should give the advocates’ academic credentials and professional experience. Hopefully, the directory listing or website will include a short narrative that explains why the person was drawn to patient advocacy. Many former nurses and advanced practice nurses, physicians and physician assistants have become patient advocates. In their role as advocates, however, they are not allowed to provide medical care.

Usually the process of selecting an advocate involves an initial short telephone consultation. If both advocate and client think that there may be a mutually beneficial working relationship, then a longer meeting will be scheduled so the client can ask more questions about the advocate’s expertise in handling similar cases and how the advocate does business.  

While it is not essential to hire a professional patient advocate, the navigation, coordination and oversight of medical care, insurance and other aspects of overall care will fall to the family or primary caregiver. Including a patient advocate on your care team may be the difference between being comfortable with the outcome of a loved one’s illness and worrying that more could have been done.

This article is part of the Patient Advocacy series, in which Trish Laub (author of The Comfort in their Journey book series, speaker and consultant on caregiving and end of life) and Roseanne Geisel (founder of Geisel Advocacy for Patients) discuss the role of an independent patient advocate.