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The Empowered Patient

Patient Empowerment and Shared Decision-Making Participating Confidently in Your Care

Cancer care is not a one-size-fits-all approach. Part of a successful, personalized treatment plan includes an engaged and empowered you!
February 2020 Part 1 of 4 - Breast Cancer Special Issue Series
Jordan Henderson, BSN, RN, OCN, ONN-CG
Survivorship Nurse Navigator, Sarah Cannon Cancer Institute at Medical City Healthcare in North Texas
Brandy Meierhofer, BSN, RN
Nurse Navigator, Breast, GYN Cancer
Sarah Cannon Cancer Institute at Medical City Healthcare

Imagine your boss at work telling you to change a daily routine, but with no explanation as to why the change should take place. You would likely wonder why the change was necessary, or what was wrong with the usual routine. Perhaps you would even think of your own ideas that might be better than the one your boss dictated. Now, imagine your boss taking the time to meet with you and explaining the reason for the change, why the usual routine wasn’t working, how the new solution will benefit you, and asking for your perspective and input. Would you be more likely to incorporate the change successfully and stick to it? This is the same effect of patient empowerment and shared decision-making in healthcare.

Research by Jørgensen and colleagues1 defines patient empowerment as “the process by which patients develop knowledge, skills, and motivation to take control of their own situation, and the state in which they have a sense of being in control, of having mastery.” Patient empowerment can help lead to shared decision-making with physicians. Niranjan and colleagues2 report that the Institute of Medicine is “calling for patients to be the locus of control for medical decisions.”

The more knowledge patients have about their disease and what to expect, the better equipped they are to help make decisions that best fit their individual needs. With cancer care becoming more personalized, including the patient in their care and increasing their engagement overall is needed more than ever. By making decisions jointly with their cancer team, patients can feel more peace of mind throughout their cancer journey. “Empowered patients make health decisions that better reflect personal preferences, often experiencing more favorable health outcomes such as decreased anxiety, quicker recovery, and increased compliance with treatment regimens.3

Patients who actively participate in their treatment plan feel a sense of trust with their team and are more informed about their disease and what to expect. Understanding why a certain treatment is more effective, or the importance of the treatment itself, can put the patient at ease and increase treatment compliance. Being well informed about treatment options and prognosis is key to a sense of empowerment.1 Looking at the disease and the treatment plan from all angles allows the patient to process the information and equips them with the knowledge to ask better questions. Learning about a disease and all the medical terms that go with it can be overwhelming for most. Including the patient in the conversation can help decrease anxiety and increase understanding.

There are benefits for patients who take an informed and active role in their healthcare. Many studies suggest that patients experience more depression and mood disturbance when they have little contribution to their plan of care.4 Conversely, patients who take an active role in their care tend to adhere to the treatment plan and are, overall, more satisfied with their outcome.1

Patients should select a physician who communicates clearly what to expect from their healthcare and who allows them to actively participate in their care to the extent that they choose. It is important to keep in mind that each patient should participate in shared decision-making to the degree that brings them comfort and confidence.4 Healthcare professionals should take the time to provide the information needed to make an informed decision and should respect and support the patient’s decision.

Examples of Shared Decision-Making

  • A patient deciding to have a bilateral mastectomy due to positive genetic testing results and the physician supporting that decision allows the patient to have peace of mind
  • A patient choosing an accredited radiation facility near their home for easier access, while still adhering to the physician’s clinical recommendation of an accredited facility
  • A patient decides against recommended chemotherapy due to fear of side effects and decreased quality of life despite a decreasing survival rate. The care team respects the decision and provides support and management of pain and side effects.

Tips for Patients

  • Increase Your Knowledge: Gather as much information about your disease as you can from reputable and accurate resources so you are able to make an informed decision. Ask questions of your healthcare team to learn more about treatment options and what to expect
  • Bring Support: Surround yourself with people who will support and care for you during your journey. Inform them of your desires before starting treatment so they are able to support you through your decisions
  • Choose the Right Physician for You: Select a doctor who provides options, listens to your concerns, individualizes care to your needs and values, and who encourages your involvement in decision- making
  • Determine Your Desires: Decide what you want out of your treatment plan. List what is important to you and express it openly to your care team. Discussing your values and what means the most to you can help your doctor better tailor your treatment plan to fit your needs. For example, if you want to continue working while undergoing chemotherapy, your physician can schedule treatments so that the worst side effects occur over your days off rather than during your workdays.

Cancer care is not a one-size-fits-all approach. A personalized treatment plan cannot be successful without patient engagement and shared decision-making. Arming patients with the tools they need, such as examining values, desires, and preferences, can help in making the right decision. Clear communication, a trusting rapport with the medical team, and teaching patients to become their own advocate can positively impact patient satisfaction and lead to improved outcomes.

References

  1. Jørgensen CR, Thomsen TG, Ross L, et al. What facilitates “patient empowerment” in cancer patients during follow-up: a qualitative systematic review of the literature. Qual Health Res. 2017;28:292-304.
  2. Niranjan SJ, Wallace A, Williams BR, et al. Trust but verify: exploring the role of treatment-related information and patient-physician trust in shared decision making among patients with metastatic breast cancer [published online May 6, 2019]. J Cancer Educ.
  3. Agency for Healthcare Research and Quality. Strategy 6I: Shared Decisionmaking. www.ahrq.gov/cahps/quality-improvement/improvement-guide/6-strategies-for-improving/communication/strategy6i-shared-decisionmaking.html. Reviewed October 2017.
  4. Colley A, Halpern J, Paul S, et al. Factors associated with oncology patients’ involvement in shared decision making during chemotherapy. Psychooncology. 2017;26:1972-1979.
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Last modified: June 22, 2020

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