The Patient Advocacy Revolution: Cost of Care and Options for the Future

I predict that patient advocacy will be the smartphone or Uber of the next aging generation. Despite most people currently not knowing what a patient advocate is or what one does, they will soon find out. Little do they know they will not be able to live without one, given just a session or two, and after that there is no going back.

So, what do they do? How do patient advocates help? And when do you need one? Most clients that come to me describe not being able to see the depth of their despair, nor realize that there is any room for negotiation and flexibility when it comes to their healthcare. Most feel like a child, helpless, told that they must come in to see the doctor just for a lab test or a medication order; or that the next appointment is four months away and there are no other options. Add hopeless to the list.

Without a patient advocate, people will do their best to bear the pain or discomfort until it becomes unbearable, and they must go to urgent care, the emergency room, or eventually the hospital. Some may last the wait until appointment day, but alas, they realize after being called after waiting 30 minutes in the lobby and seeing the doctor for 15 minutes or less that they are referred to another department for additional labs, tests, and/or specialists that come with another month-or-longer wait. How much longer before they get an answer or resolution?

Patient advocates, who like me may be registered nurses with years of clinical and case management experience, will see these setbacks as a series of opportunities to help a patient in this example above. For one, three months for any type of pain or discomfort is an unreasonable amount of time to wait to see a provider. A patient advocate will first speak to the client and understand the level of urgency of the problem – if it is troublesome enough for them to want to see someone sooner, the advocate will research, call, and find and book an earlier appointment time with an alternative provider that has been vetted. Thereafter, patient advocates will usually speak to the current or alternative provider to have any lab orders or tests ordered over the phone so that at least by the time of the appointment, results will be ready for the provider, making it a more comprehensive assessment and easier process for diagnosing timely and accurately.  

Patient advocates don’t stop there – depending on the patient’s mobility, they will arrange for mobile lab or test services, transportation to and from the lab and testing center as well as appointment scheduling, and finally calling to and receiving a copy of the lab and test results to be forwarded to the provider seeing the patient next. Many times at this point, I will receive a call from the doctor indicating that the need is urgent and they request a sooner time for patients to come in so that they may receive necessary treatment. If patients request, I often will accompany them to the doctor’s appointment to be their voice, be their ears, and convey any important notes to the doctor and ensure patients understand their medication orders, are able to get their prescriptions filled, and take the tablets safely and as ordered. Should they have any unfortunate side effects, my patients call me to take care of it – I communicate with the doctor for alternate medications, get them ordered and delivered and explain the new orders to the patient. In four months, patient advocates can usually get so much done for patients that they would have forgotten their initial complaint. Copays and time saved, people can have more precious time to spend with family and friends and quality of life improves.

Nurse advocates often have an idea after doing a comprehensive assessment what may be troubling patients – based on symptoms and consultation with a physician, they can receive orders for recommended tests to rule out certain conditions. This gives them and the patients a great advantage and time is often valuable when it comes to initiating treatment; a urinary tract infection can start as something small and inconvenient, but can quickly turn into a life-threatening kidney infection and sepsis; depending on what other comorbidities patients have, one more infection could be the final straw for some. So time is more valuable than anything when it comes to care.

 Studies have shown that the absence of patient advocacy has negative consequences, which is probably why registered nurses describe it as essential to promoting patient safety and quality care – patient advocates protect patients, act as their voice, ensure quality and standards of care are upheld, collaborate with all involved in patient’s treatment and educate patients and/or family (2).

The challenges, which when overcome will lead to transformation of our healthcare system for the positive making having a patient advocate the norm, are several. One is that most people haven’t heard of patient advocacy or don’t really know what it means. They don’t understand that they have rights as patients to concepts such as autonomy, justice, and beneficence. They also often lack the medical knowledge to argue or ask pertinent questions and, with the system as it currently stands, asking questions is often seen as being argumentative. Thinking back to a Seinfeld episode where the female character Elaine, having questioned her regular physician about having to put on a gown for a rash that is plainly visible on her neck, is left having to go down the alphabet all the way to letter Z, Dr. Zimmerman, as each subsequent doctor was declining helping her due to being “difficult” based off her medical chart. I laugh but only halfheartedly because I know there is a shade of truth to the joke.

Having a nurse advocate is a benefit to the patient and changes the outcome of the entire experience. One article describes nurse patient advocates as “using his or her professional knowledge effectively to advocate for their patients, as well as challenging the traditional healthcare power structures” (2). Nurse advocates in clinical settings are often criticized and risk losing their jobs as the article writes, which speaks to the power structure and the need for independent nurse patient advocates, ones not associated with the hospital; patient advocacy is further described as being an act of “ ‘whistle blowing,’ meaning the act of exposing institutions or practices deemed unethical or negligent” (2). Nurses typically spend the most time with the patient, aside from their family, which puts them in the best position to advocate for patients.

Studies done have shown that nurses advocate by educating patients, which enlightens them on their health conditions, promotes understanding of their care and treatment, and enhances cooperation and a speedy recovery (2). As another research article explains, “in Western culture, empowering patient-customers to make decisions independently or with their pre-established trust network of family or friends generally results in equal or improved patient-customer outcomes and satisfaction compared to treating patient-customers with paternalism and limiting their options” (1). By supporting patients and enhancing their knowledge to make informed decisions, it “increases the likelihood that patients choose treatments that are consistent with their value,” thereby making them more involved and committed to adhering to the plan (1).  

I think that power structure and “paternalism” in our healthcare system is slowly changing and thankfully disappearing. The most important thing we can do as a community is to increase awareness and understanding among patients, providers, and together we can tackle the challenge of revolutionizing the nature of our healthcare system. The more people who support this cause, the greater chance we stand at making a difference!

If you have a personal story to share with patient advocacy or are interested in finding out how Alexsol Health can help be your patient advocate, contact us or book a 30 minute session for an initial consultation. During this call we will discuss your individual needs and how Alexsol Health can support you. We offer concierge nursing services, physician consultations, telehealth, access to 24/7 nurse advice line, counseling, case management services, & much more! Try us for a month just to see how much time, money, and stress you will save!

References

1.      Young M, Smith MA. Standards and Evaluation of Healthcare Quality, Safety, and Person-Centered Care. [Updated 2022 Dec 13]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK576432/

2.      Nsiah C, Siakwa M, Ninnoni JPK. Registered Nurses' description of patient advocacy in the clinical setting. Nurs Open. 2019 May 29;6(3):1124-1132. doi: 10.1002/nop2.307. PMID: 31367438; PMCID: PMC6650676.