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Bringing Patient Advocacy to the Forefront

The main intent of this blog is to be bring some of the common health care challenges to the forefront and create positive change. One of the certainties I recognize is that one person alone cannot do or change much. When you go for a checkup or to see a provider for a particular health problem, you rely on a collaborative community of health care professionals that all work together to be able to assist you with a thorough evaluation, an accurate diagnosis, and a comprehensive treatment plan that is holistic and individualized for your particular condition and is in line with your beliefs as a person. As a Jehovah's Witness, it would be understood by the provider that blood transfusions are not an option, so other treatments would need to be presented that might offer a reasonable alternative. This understanding stems from the idea of patient rights, a series of liberties that should be upheld when providing care and that are at the core of patient advocacy.

There is much in the way of fully understanding what patient advocacy encompasses and, if you would like to learn more, I invite you to take a look at my Program List and sign up for the Patient Advocacy course on this site. But here, I will talk more about what led me to start a patient advocacy company. Thinking back to some of the patients I have cared for, specific cases come to mind. One particular example is of a patient who was experiencing gastrointestinal discomfort for many years. In completing my assessment, I discovered he had been a long-distance runner and recalled a time when he was running in the wilderness and used a newly purchased water filter bottle to collect some water from a nearby river to hydrate. Not long after, he began experiencing heartburn, bloating, and abdominal discomfort that nothing seemed to cure.

He made an appointment and went in to see a gastrointestinal (GI) specialist, recalling to him the events that led to his current symptoms. As he described what occurred, he was soon cut off and told that he has what is known as GERD (gastro-esophageal reflux disorder) and was prescribed medication to help control the acidity in the stomach to minimize any associated discomfort. He left feeling unsatisfied as his questions on what caused this issue in the first place were left unanswered. With my help as his patient advocate, we started researching potential effects from drinking unfiltered or poorly filtered water as might be the case of his water filter bottle being inadequate or defective. We read about Helicobacter Pylori or H. Pylori and how that bacteria can cause an infection resulting in bloating, abdominal discomfort, and many of the other symptoms associated with GERD. We read about related labs to test for the bacterial infection and medications that could help treat his condition.

Upon my urging and now empowered with the knowledge of what questions to ask, he went back for round two with the specialist. The doctor ordered a series of comprehensive blood work, but this time my patient knew to ask specifically for H. Pylori testing, which the physician agreed to. After the results came back, it was discovered that he did indeed have an H. Pylori infection and was prescribed three medications that would help treat the infection and a fourth that was contraindicated with the remaining medications and after clarifying with the doctor, the fourth medication was confirmed as a standard in practice for this particular infection. All of this took nearly a year because what I forgot to mention is that it took 2-3 months to secure each appointment with the GI specialist.

Going to see the doctor may seem like an easy and as simple a task as simply making the appointment and showing up. However, that is not the case. These days, a meeting with a physician and especially a specialized doctor is much like going in for a job interview. You have to come prepared. The patient advocate is essential in guiding the patient in understanding his or her symptoms and the general assessment questions they might be asked, knowing what questions they may want to ask the doctor, and presenting any personal beliefs or issues of importance that may impact possible treatment options, such as preference to stay away from unnecessary medications if there are more non-invasive measures available. As a patient advocate for my own family members, I can attest to the countless times I accompanied my now elderly parents to the doctor for a wide range of health problems, some of which do require medications, such as active infections, to orthopedic injuries that usually always come with a prescription for medications, but can be treated first with physical therapy. Being there for their appointments allowed me to ask the provider for alternatives and as the advocate, I explained these options in laymen terms to my patients. The gold standard that stems from the patient right of nonmaleficence, or doing no harm, comes from the Hippocratic Oath that doctors are meant to uphold and it guides treatments to start with the least invasive option.

Another example stems from my experience in worker’s compensation. My patient needed an advocate as he kept being denied surgery for a back injury when crushed at work with a fork lift. I was asked to attend his appointments to understand what the physician was recommending and why the insurance company was denying the request. I completed a thorough assessment and accompanied the patient to his appointments at his request, discovering that the physician was requesting surgery for his back that was more expensive, but less invasive, than a spine fusion, which is what the insurance company stated they would cover, even though that would be much riskier and severely limit the patient’s future mobility and lead to chronic pain. Over the next several weeks, I worked with surgeon and asked that he re-submit the claim after rewording his request to explain how and why this surgery was necessary rather than a complete fusion. He did so and at the following appointment, we received the approval allowing us to schedule the patient for surgery. After being told the wait for surgery would be a couple of months due to scheduling delays, I pleaded with the scheduling manager as the patient was now waiting for his surgery for nearly a year after his initial injury. Before we left that day, I was able to get the patient scheduled for the following Monday morning with the help of their team.  

Sometimes, it may also take patients having the courage to ask for a second opinion, something lots of patients fear as if they are doing something wrong when it is in reality their body and their right to have the care that they believe they deserve. In one case, a patient called me after experiencing post-surgery knee pain. He explained that he injured his knee in July and discovered that he had a meniscus tear, which he had repaired in November. Following the surgery, he participated in physical therapy, but during one session in February, he recalled hearing a “pop” when performing an exercise with the therapist. After that, he describes constant knee pain much like he felt after his initial injury and any progress he had made was undone. He explained how he had gone back to the surgeon to request a second MRI, but was told it was unnecessary and he left quite frustrated. He asked me to accompany him the next time as he did not want to go alone and had no idea what to do next. I obliged and at the next appointment, I explained to the doctor what the patient told me he was experiencing and the fact that he was now hobbling again, when prior to the event described in February, he was improving. The doctor showed us the MRI done immediately after the surgery and stated that the meniscus tear was successfully repaired, so the patient should not be having any symptoms. Again, I explained that he indeed was having symptoms and might benefit from a repeat MRI, to which the doctor finally agree. During that appointment, I also requested a clarification of what exercises the patient should be doing as he was still attending physical therapy sessions. Per his request, the patient showed him some squats and other exercises he was asked to do, to which the doctor responded that he should by no means be performing after this type of surgery. He demonstrated the proper exercise that patient could do at home that was both safe and would build up his strength. We left that meeting with the patient feeling heard and grateful. I helped him schedule his MRI and asked if he would like to get a second opinion by another physician, as I could feel the tension and frustration in the room, between patient and physician. The relationship is much like a friendship and when personalities clash, the openness of both sides closes and patient outcomes tend to worsen due to feelings of being misheard and loss of trust. Patient was very open to the second opinion and I coordinated his care by sending the medical records to another physician I had worked with in the past that I thought would be a better fit for the patient. I was able to get the patient scheduled for an appointment within a month and also arranged his transportation as the sooner appointment happened to be farther away and inconvenient for him to get to on his own. With the repeat MRI results in hand, we met with the second doctor. After a lengthy hourlong conversation, a thorough examination, and a review of the two MRIs, the surgeon explained his assessment findings indicating that the repeat MRI did show another meniscus tear and that another surgery would be necessary for the patient to be able to regain his previous mobility. After discussing all of his options with myself and the physician, the patient happily obliged to a second surgery and I, again, helped coordinate his medical clearance and scheduling. He left that appointment with a smile on his face, thankful that he was listened to, believed, and treated with respect and compassion. His outcome was positive and after his surgery, I was pleased to hear his mobility had improved and he was now walking without constant pain and limping. These are the moments I live for as I know his faith in the healthcare system has been repaired.

So if you or a family member or friend you care about is going through health issues without successful resolution, are elderly, have a chronic illness or pain, poor vision, hearing, or memory, it is imperative to have a patient advocate with you to know what questions to ask, seek alternative treatment options, and assist with the follow-up scheduling of any future appointments. Not one size fits all and, unfortunately, not all cases end in a resolution or a good outcome. In fact, some of my own health issues are still a concern and the lengthy and exhausting process of convincing doctors that I know my body best until they finally believe me is only one aspect of getting proper care, the rest is trying to work with the insurance companies to facilitate payment for recommended treatment, which is also a daunting obstacle, but one to which I do not relent. One day we will transform the system to be easy to access, efficient, and cost-effective. With more advocates, I believe we will change it one patient at a time.

Feel free to leave a comment or sign up to become a regular member on this site. And let me know if you or someone you know could benefit from a patient advocate. Click on the Contact link to submit your information. Thank you for visiting!