Being a Patient Advocate: The Balance of Helping without Hurting

Nurse practitioner in the Department of Lymphoma/Myeloma at the University of Texas MD Anderson Cancer Center in Houston, Texas

Engaging in patient advocacy is a rewarding activity and allows health-care providers to assist patients in asserting their rights and maintaining control over their lives, but it also means walking a fine line between assisting versus taking control away from the patient. Patients don’t have control over their cancer or over how they feel on a daily basis, but they can assert control over their treatment. As advanced practice practitioners (APPs), we can help patients maintain control over what they choose to be in control of and helping them navigate the health-care environment.

For APPs, patient advocacy can take many forms – from educating patients about their disease, to facilitating communication between physicians and patients, to speaking at events organized by patient advocacy groups. While patients’ needs differ, the principles of patient advocacy and empowerment, go hand-in-hand with what APPs do on a daily basis, regardless of the patient.

Advocating for Advocacy

Volunteering to work with patient advocacy groups may not appear to have anything to do with my job but, in reality, my work with these groups has been extremely helpful to my work as an APP.

I have been involved with patient advocacy groups, such as the International Myeloma Foundation, the Leukemia and Lymphoma Society, and the Multiple Myeloma Research Foundation for years. The work I do varies based on the organization; I could be asked to speak at a workshop for patients and caregivers, facilitating a support group, attend a scientific meeting and write down my observations to be shared with patients who want a clinician’s take on newly presented data.

Partnering with patient advocacy groups is a two-way street: helping these organizations helps me do my job better. By maintaining close ties with patient advocacy groups, I am able to inform my patients about new tools and resources that may help them manage their disease. For example, many organizations have co-payment assistance programs, patient education materials, support helplines, and information about clinical trials.

Patient advocacy groups are also dedicated to promoting the patients they represent. Fortunately, we are able to take advantage of their efforts on behalf of our patients. When changes occur in state and federal laws, it is to our advantage to know how these new laws could affect our patients so that we – or our patients – can contact insurance companies to ensure that patients are getting the appropriate coverage.

For example, in 2015, when oral chemotherapy parity became a law in Texas, the patient advocacy groups I work with alerted me to this development. Thanks to their work, I saw a patient in clinic informed me that she had an extremely high co-pay for an oral therapy, but had no co-pay for infusional chemotherapy. I immediately obtained information on the oral parity law from the International Myeloma Foundation and contacted the insurance company, informing them that it was illegal to charge a higher price for oral drugs. Subsequently, the patient was reimbursed $4,000.

With the implementation of the Affordable Care Act (ACA), there have also been more opportunities to advocate for patients who are enrolled in clinical trials. Under the ACA, insurance companies must cover standard-of-care treatments for patients participating in clinical trials. Several of my patients who we consented to participate in a clinical trial, however, were being denied coverage by their insurance companies. Because of my work with the advocacy groups, I was made aware of these statutes and was able to pass that information along to patients – pinpointing the exact statute numbers so that they could contact their insurance company and deny their denial of coverage.

As patient advocates, our work doesn’t stop at learning about these developments from the organizations; it falls on us, as clinicians, to use our knowledge to help our patients.

Talking with Patients

We have to be mindful of the effect of what we tell patients and how we tell them. As hematology/oncology APPs, we see cancer day in, day out; for our patients, though, this is often the first time they are being told they have cancer. We can’t lose sight of whom we’re talking with and what the word “cancer” means to that person.

When patients see me, they want to know, in plain and simple terms, what their cancer is. Then, they want to know what they can expect from their treatment – how it’s going to make them feel, how long they are going to have to be on treatment, the results they can expect, etc. Patients want to know everything, but having all of that information delivered at one time can be overwhelming to them. It’s a balancing act.

Last year, a friend of mine was diagnosed with cancer and I was able to see, on a personal level, the impact of hearing the words “You have cancer.” At the time of her diagnosis, the whole treatment plan was laid out in front of her and it was very overwhelming to her and her family. But, at the same time, seeing it all at once helped her wrap her head around her diagnosis and treatment.

As health-care professionals, we need to take our cues from the patient and their caregivers, so that we don’t overwhelm them with too much information. Once patients have an overall idea of what their diagnosis means, then we can walk through it together, taking smaller steps.

The most difficult thing in talking to patients is walking the fine line between offering too much information and too little information. We don’t have to lay out the next 10 years, but our patients certainly need to know what to expect depending on where they are in their disease trajectory – what to expect from induction therapy, what to expect from maintenance therapy, and what might happen if they relapse.  We have to do our best to avoid surprising the patient.

This has become even more important as treatment of incurable cancers has advanced to the point where patients are able to live longer and remain on chronic therapy. Chronic therapy is an overwhelming concept regardless if it is a pill or an infusion therapy. As APPs, we need to understand the impact chronic therapy will have on a patient’s life, including the emotional burden it may create.

Patient (and Caregiver) Empowerment

Caregivers are indispensable, particularly at the time a patient is first diagnosed and likely overwhelmed by the changes in their lives. However, it can be difficult to balance our interactions with patients and their caregivers. While it is important to involve caregivers in discussions about the patient’s treatment plan, we need to ensure the caregiver is not dominating the conversation. If a patient defers to the caregiver though, we need to respect his or her choice. As the patient begins to feel better, he or she may be able to take on more ownership of the care, so it is important to assess the patient/caregiver dynamics at the initial visit and then periodically during the disease trajectory.

Balancing our interactions between patients and caregivers may be difficult at times because patients may not share all the side effects or difficulties they are experiencing with treatment. The caregiver, however, is able to share information regarding side effects as an observer. For example, if a patient is on steroids, a caregiver may notice irritability or changes in attitude that the patient may not realize are occurring. So, as clinicians, we are left trying to respect the autonomy of the patient, but also manage the side effects that may be occurring. In these situations, I try to gather my data from both the patient and the caregiver and then have an open discussion about what has actually been occurring.

Ultimately, though, the patient is the patient, and we have to respect their autonomy.

How to Help Without Hurting

To help our patients navigate the health-care system, we have to know who they are and how proactive they are. It is our responsibility to understand our patients and how much of our help they need. Our natural tendency as health-care providers is to step up to the plate on our patients’ behalf and simply get things done, rather than allow them to take ownership. We have to suppress that urge and learn more about our patients and their preferences.

Ideally, we want patients to be able to take control and take ownership of their disease but, because the health-care environment is so complex, they often have difficulty navigating the system. As more therapies are developed and more policies are enacted that change the way we practice, the system grows even more complex, creating more twists and turns patients must negotiate.

That’s where APPs and patient navigators can step in to assist patients when needed.

For a patient with cancer and diabetes, for instance, we may have the patient contact his or her endocrinologist because we have to start steroids and the patient’s diabetes medication may require adjustment. Depending on the patient, he or she may or may not be able to do that alone, or he or she may not understand all the ramifications of not speaking with the endocrinologist. And, the truth is that a patient may not receive a call back the same day; a clinician, on the other hand, will often receive a faster response.

We also need to listen to what our patients are saying and not saying. In my experience, patients don’t volunteer information about their financial difficulties or the extremely high co-pays they are being forced to pay. We have to be cognizant of the financial implications of having cancer – particularly for our patients who have Medicare Part D and who have oral chemotherapy medications. Inquire about their payments and ask if their treatment is affordable. If it’s not, then try to find resources to help offset some of those expenses, such as contacting co-pay assistance organizations or getting the drug through the pharmaceutical company.

As providers, we must be cognizant of ways we can help alleviate the financial burden of having cancer. Our patients have enough things to worry about in their daily lives; anything we can do as a provider to help minimize that worry is part of being an APP.

There also will be inevitable clashes in planning the patient’s treatment. While patients may choose to handle certain situations differently than how we, as their care providers, would handle them, we have to respect their choices. As APPs, we have a unique relationship with patients that gives us a great advantage in making sure our patients are heard and supported. We can’t be the ones who take that last piece of control away from them.

SHARE