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Survivorship Care Must Include Quality of Life for Patients

December 11, 2017 | Lillie's Corner | Survivorship
Featuring:
Lillie D. Shockney, RN, BS, MAS, ONN-CG
Lillie D. Shockney, RN, BS, MAS, ONN-CG
Program Director and Co-Founder, AONN+; University Distinguished Service Professor of Breast Cancer, Departments of Surgery and Oncology; Administrative Director, The Johns Hopkins Breast Center; Director, Cancer Survivorship Programs at the Sidney Kimmel Cancer Center at Johns Hopkins; Professor, JHU School of Medicine, Departments of Surgery, Oncology, Gynecology & Obstetrics - Baltimore, MD

For more than a century, cancer care had a singular goal―to have the patient survive the disease and its treatment. With that achieved, the treatment team smiled, considering the treatment a success. Times have changed, and thankfully, treatments have changed, too. Patients now have much higher expectations of what constitutes a success story. The goals have expanded beyond just surviving, and include preservation or restoration of the person’s quality of life, too.

We still, however, have oncology specialists who are not recognizing the importance of this element of survivorship, and tell patients to expect certain side effects―even those that may be treatable and reversible. This is where navigators must step in as patient advocates and work with the treatment team to reduce side effects and restore quality of life. In other words, they must provide patient-centered care―treating the patient as a person and not just treating the cancer with which they have been diagnosed.

The way patients define and measure their quality of life can differ from the way their oncology specialists view it. This is why it is important to talk with patients who have cancer, starting at that first consultation soon after they have been diagnosed. It is important to note that quality of life is not solely focused on physical abilities; cognitive functioning is also a significant element.

For some patients, the only expectation of their treatment outcome is to remain alive. This is likely due to their prior experiences, personally or as a family member of someone who was diagnosed and treated a long time ago. We must speak up on behalf of these patients rather than allowing them to accept their fate of simply remaining alive. This is why we must know their current activities, what brings them joy, and the milestones to which they are looking forward. These things must be preserved.

Cancer prehabilitation can be very helpful in maintaining physical function, and can even help with cognitive functioning issues, too. Promoting exercise rather than allowing the patient to become a couch potato is important to discuss with the patient as treatments get underway. The cancer treatment experience should be a bump in the road, not a derailment.

I challenge you to think about how you would measure your own quality of life. By doing so, you will gain a perspective that may be new and helpful to you as you navigate your patients to go beyond the goal of just surviving, and help them to once again be thriving.

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