Patient Empowerment: A Process, Not a Destination

In the field of oncology, or any field with chronic conditions, nurses strive to help patients through their unexpected diagnosis and treatment journey. The concept that care coordination/navigation of patients in the care continuum would improve quality care was just the start of what would become key initiatives in cancer care. The value of nurse navigation was fully recognized early in the 21st century, as evidenced by the Commission on Cancer (CoC) adding patient navigation as a standard in 2015.¹ As navigators continually define their roles, one standard practice is to assist in identifying and removing patients’ barriers to care. At a roundtable navigation workshop of oncology professionals in Washington, DC, several speakers identified lack of or ineffective communication between clinicians and patients as a common barrier to cancer care that patient and nurse navigators can address.² In my experience, the patients’ communication barrier stems from a lack of confidence in one’s own power. At diagnosis, uncertainty presents itself; patients recognize they are lacking information or knowledge on the subject matter and naturally feel powerless. This feeling keeps patients from expressing their needs, concerns, or desires in their conversations with their physicians and how they approach treatment, which is a barrier to their care. Empowerment is key to addressing this specific barrier. Nurse navigators are in a prime position to empower patients to have meaningful communication and involvement in their own care.

A Cancer Diagnosis

Patients often present stunned after a biopsy and appear lost after hearing the disappointing news of a cancer diagnosis. They scramble searching for some control of the situation amid the uncertainty. The dictionary defines empower as “To give someone more control over their life or more power to do something.”³ Although a patient cannot “control” cancer, the cancer also cannot “control” the patient. It is important for patients to recognize cancer as a circumstance; it does not define their individual value or power within. When patients feel they have no control, it is helpful to focus on things within their control, empowering them in their own circumstance.

The Process of Empowerment

In my navigation role, I have found the first step is identifying where patients find or place their hope, and then connect the hope to the patient’s strengths. For example, a newly diagnosed patient preparing to start treatment voiced feeling overwhelmed by the news of the diagnosis and the treatments she would endure to treat the cancer. I took our discussion back a step, outside of cancer, and asked where she finds hope. She quickly responded her hope is in her granddaughter, watching her grow and learn. She continued to share about her recent life experiences, how her “I am not a quitter” personality has pulled her through difficult situations. When we discussed her hope in the context of her granddaughter continuing to grow and her strength in her personal drive that she does not quit, she quickly applied her own strength to the current circumstance and started down the path to empowerment. She spoke with the physician about starting treatment and planned a trip to see her granddaughter, which was her end goal.

Empowerment is a process patients may cycle through repeatedly; patients set goals, carry out action, make decisions, and then reflect and learn. As patients go through their cancer journey, uncertainties will present at different times, perhaps with a change in regimen or anxiety before scans. However, through the empowerment process, with each uncertainty the patient works through, they gain knowledge and self-efficacy to approach the next unknown variable. This results in a personally meaningful increase in power through his or her own efforts.⁴ This patient no longer felt overwhelmed by the new diagnosis, she felt a sense of control through her own strength and hope, and this use of power gives her knowledge of empowerment to use in future uncertainties.

Empowerment is a powerful process in relation to patient participation in their cancer treatment journey. I am reminded of a conversation with a patient and their spouse recently. They felt the oral chemotherapy was contributing to the patient’s mental decline and led to activities of daily living being more difficult. Although one had been a medical professional prior to retirement, they were hesitant to voice their concern and present their request to stop the treatment for a short period. We discussed their goal for treatment and their goal for quality of life. We also discussed the importance of communication with the physician regarding these goals instead of stopping treatment on their own. With knowledge that patient participation and shared decision-making have a key role in the empowerment process,⁵ I provided reassurance that they are active participants in the decision-making of their care, and that their goals are both important and reasonable. The patient entered the empowerment process and reached out to their physician with their defined goals and confidently participated in the shared decision-making with their care team.

The Navigator’s Role

Navigators support patients, we do not make treatment decisions or life decisions for patients; we offer open communication and support the patients to make those decisions. The utilization of oncology knowledge and the use of patient empowerment support patients in defining their desires/goals to effectively participate in care. Navigators truly do have great opportunity to assist patients in entering the empowerment process and removing the barrier of the feeling of powerlessness. When patients are empowered and practice active participation in their care, the literature states that “Patients will become more compliant to therapies and have more opportunities to bear the uncertainties.”⁵ Although as navigators we are focused on the disease and the necessary resources to overcome the circumstance, by empowering patients we are giving them their own internal resource to tap into, no matter the uncertainty that may present.

Removing Barriers

In conclusion, nurse navigators have great opportunity to remove the barrier of the feeling of powerlessness through patient empowerment. Identifying the patients’ source of hope, strengths, and goals, in combination with education on the subject matter can provide patients a solid foundation to start the empowerment process. These empowered patients will participate in shared decision-making and achieve that sense of control they seek. This concept helps define 1 aspect of my role as an oncology nurse navigator: “To meet my patients where they are in their cancer journey; to be present, compassionate, an advocate, and empower them to reach their goals.”

References

1. Commission on Cancer. Cancer Program Standards 2012: Ensuring Patient-Centered Care. Commission on Cancer Standard 3.1. www.facs.org/~media/files/quality%20programs/cancer/coc/programstandards2012.ashx. 2012.
2. The National Academies of Sciences, Engineering, Medicine. Establishing Effective Patient Navigation Programs in Oncology: Proceedings of a Workshop. Washington, DC: National Academies Press; 2018.
3. Macmillan Dictionary. Empower. macmillandictionary.com.
4. Cattaneo LB, Chapman AR. The process of empowerment. Am Psychol. 2010;65:646-659.
5. Cutica I, Mc Vie G, Pravettoni G. Personalised medicine: the cognitive side of patients. Eur J Intern Med. 2014;25:685-688.