Talk to Your Doctor: Shared Decision Making in Cancer Therapy

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Sara Musetti Jenkins, PhD

Being diagnosed with cancer is one of the scariest things to ever happen to many people. Regardless of whether it comes suddenly and without warning or after waiting, agonizingly, for test results, it is nearly impossible to prepare for the way it impacts you. Many patients find themselves suddenly adrift, needing to make rapid arrangements for treatment but also confused about what is happening to them and what their diagnosis means. For some, all they want is to trust a doctor to do what they need to keep them alive; for others, the feeling of having lost control over their health and body means they need to become experts in their care.

What is shared decision making and why does it matter?

In an effort to improve patient satisfaction with care and patient outcomes, many healthcare systems around the world have begun engaging patients more deeply in decisions made for their care and treatment, a process called “shared decision making.” In shared decision making, patients are empowered to take a greater role in weighing the pros and cons of care decisions and evaluate what their goals are for their outcomes. Shared decision making can increase the patient’s knowledge and understanding of their condition, treatment options, and possible outcomes. This can help the patient feel more confident and prepared for their treatment, and reduce their anxiety and uncertainty. Shared decision making can also enhance the patient’s autonomy and empowerment, as they can express their preferences and values, and participate in the decision making process. This is particularly important in diseases like cancer, where treatment options include surgeries or may result in significant side effects, and many patients may be facing terminal illness. While many cancer clinical trials are primarily focused on improving patient survival, some patients may be more concerned about maintaining a certain quality of life. Some patients may have closely held personal or religious beliefs that impact the kind of treatments they are comfortable with.  In shared decision making, patients are encouraged to share their priorities and concerns with their doctors and have a frank conversation about what treatment options work best for them. This can improve the patient’s satisfaction and trust in their provider, and strengthen the patient-provider relationship.

Shared decision making can also benefit patients by helping them find treatment options that work with their lives. By working with patients to find treatment regimens that fit their lifestyles, clinicians can improve adherence rates and help patients receive necessary care. Studies on patient preferences over the years have found that patients’ priorities for care are nuanced. For example, a huge number of studies are performed on how patients prefer to take their medication, and what risk of side effects may make them want to take a drug via a slightly-less-desirable method, like shots or IVs. Patients may have the choice between taking a pill with lots of risky side effects or taking an injection or infusion with fewer side effects, and the choice will vary widely across people. By having open and honest discussions with patients, healthcare professionals can help them find what works for them.

How do we improve shared decision making?

Implementing shared decision making may seem obvious—of course patients should have a choice over their care! And many of the healthcare systems that have encouraged shared decision making have reported positive results, including The Patient’s Cancer Hospital in Vejle, Denmark. For example, shared decision making can help reduce racial disparities in healthcare outcomes. Clinical trials have been conducted to see how patient input impact outcomes. In one trial of advanced breast cancer that has spread to other areas of the body (metastatic breast cancer), healthcare providers changed their treatment plans 45% of the time in response to patient data and feedback. However, shared decision making works best when patients are well informed on their illness, and that can be difficult. As we know, the internet is full of misinformation, particularly about health issues. And healthcare providers are struggling to find time to connect with patients about their care. Even when providers do have deeper conversations with patients, there is often an information barrier or, in many cases, a language barrier.

There are many avenues to improving patient engagement in their healthcare decisions. The internet has made it possible for even patients with extremely rare conditions to find each other and form support and advocacy groups. Many of these sites include forums in which patients can share information or participate in trials and surveys and may even include summaries of recent research. Blogs like this one were founded in an effort to make clear information more accessible to patients. Many clinical trials are now required or strongly encouraged to provide “plain language summaries” of their findings, which explain why studies were conducted and what they found in a way that is easier to understand than the typical scientific article. Websites like plainlanguagesummaries.com collect and publish many of these articles, and many pharmaceutical companies have their own websites to share plain language summaries, including Pfizer, GlaxoSmithKline, and AbbVie. There is also a growing movement to include patients as authors on healthcare studies, so the patient perspective is included and articles can become more accessible.

Conclusion

Healthcare works better when patients have a voice and can make informed decisions about their health. Healthcare professionals should make an effort to share reliable information with patients in a way they can understand and engage patients in decision making. This requires work from the entire biomedical sciences community to make their work easier to understand and easier to access by patients that have questions. Patients should be encouraged to ask questions and network with each other to better understand the treatment landscape.

Edited by Garima Khanna

Image credit: Pexels.com

References

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Kehl KL, Landrum MB, Arora NK, et al. Association of Actual and Preferred Decision Roles With Patient-Reported Quality of Care: Shared Decision Making in Cancer Care. JAMA Oncol. 2015;1(1):50–58. doi:10.1001/jamaoncol.2014.112

Mead, E. L., Doorenbos, A. Z., Javid, S. H., Haozous, E. A., Alvord, L. A., Flum, D. R., & Morris, A. M. (2013). Shared decision-making for cancer care among racial and ethnic minorities: a systematic review. American journal of public health, 103(12), e15-e29.

Oshima Lee, E., & Emanuel, E. J. (2013). Shared decision making to improve care and reduce costs. New England Journal of Medicine, 368(1), 6-8.

Stacey, D., Légaré, F., Lewis, K., Barry, M. J., Bennett, C. L., Eden, K. B., … & Trevena, L. (2017). Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews, (4).Steffensen, K. D., Vinter, M., Crüger, D., Dankl, K., Coulter, A., Stuart, B., & Berry, L. L. (2018). Lessons in integrating shared decision-making into cancer care. Journal of oncology practice, 14(4), 229-235.