Fifth Issue, Series Two

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The Importance of Survivorship Care Plans

Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG

In this issue of Conquering the Cancer Care Continuum you will learn about a hot topic that most cancer centers and oncologists are struggling to make a reality: survivorship care plans for all cancer survivors at the end of (acute) treatment, coupled with a comprehensive treatment summary. There is good news and bad news to share with you about the need for this document. The good news is that there are more people than ever being diagnosed and surviving their cancer and its treatment. This is due to a swell in the population’s denominator caused by aging baby boomers, the largest age group in the United States today. Second, early detection, more awareness of symptoms, better technology, and compliance with cancer screening have resulted in more people being able to survive their disease. The bad news is that there is a growing shortage of oncology specialists due to reimbursement issues and other factors. This shortage will grow to a deficit of between 41% and 48% by the year 2020. It will therefore be virtually impossible for an oncologist to follow a cancer survivor long-term in the clinic. Those patients, also nicknamed the worried well, will need to get off the exam table to allow newly diagnosed cancer patients to come in and begin treatment.

When I think about it, I reflect back to the 1970s when we held disaster drills in the ER that impacted the inpatient nursing units. The faux disaster meant that we needed to find a certain number of inpatient beds for patients who were injured in some way, so as nurse manager I would quickly make rounds on my unit to identify patients who would be good candidates for potentially going home a day or so sooner than originally planned. And after the drill was over, it wasn’t unusual to speak with the treating doctor and ask if the patient really could go home today, drill or no drill. Though the days are long gone of having patients linger in a hospital bed for any length of time beyond what is truly needed from a medical necessity perspective, we now need to turn our attention to the outpatient clinic arena. If a physician normally sees 5 newly diagnosed patients and 20 long-term follow-up patients in the Wednesday medical oncology clinic but is now being told to see 9 newly diagnosed, what will he/she do? Well, no one can put 10 pounds of salt into a 5-pound bag. This capacity issue will require the discontinuation of following cancer survivors long-term. And doesn’t it kind of make sense anyway? What message are we sending to our patients who are several years to decades out from completing their treatment? That we think their cancer will come back?

We cannot simply tell patients that we are “done” taking care of them and instruct them to return to their primary care physician (PCP), who was not afforded the opportunity in medical school to learn about cancer survivorship care. And the patients have bonded with us, and us with them for that matter. They are our warm fuzzies in a clinic filled with stressful decision making, anxieties running high among our newly diagnosed patients and their families, and the need to repeat over and over the treatment options. Who wants to give up the warm fuzzies for long and more stressful consultations with newly diagnosed patients? But we must. There is no other option.

Preparation for such a transition is best established at the very first consultation when patients are newly diagnosed with cancer. Informing patients of how the phases of treatment will be carried out and at what point they will transition back to their PCP is impor­tant because it establishes expectations. A road map for their ongoing care, however, is also needed. The PCP needs to know what his/her responsibilities are relative to cancer survivorship care. And equally important, the survivors need to know what their responsibilities are in self-management. A survivorship care plan provides that road map, outlines what tests are to be done, who orders them, when, and why. It also includes what other surveillance tests or exams should take place going forward. There is also a section associated with adopting healthier lifestyle behaviors, with the goal of reducing the risk of recurrence of their cancers as well as reducing the risk of getting a new primary cancer of a different kind. The management of side effects also is included so that measures taken to diminish them are done in a way that doesn’t negatively impact their cancer risk in the future. (For example, a breast cancer survivor should never be prescribed hormone replacement therapy for control of hot flashes and night sweats as it could increase her risk of recurrence. And if she is receiving hormonal therapy, it will undo the benefits of taking the medication designed to prevent recurrence.) There should also be a summary of potential late effects that a survivor may develop years or even decades down the road that actually result from the cancer treatment they just completed with you. PCPs need to understand this as well to prevent the assumption that what they are seeing is an early onset of cardiac disease when it could very well be a late effect of cardiotoxicity associated with a chemotherapy drug.

In this issue you will find 2 different perspectives regarding survivorship care plans: one from a nurse and the other from a pharmacist. Their input and understanding is enlightening and valuable to read.

So, as you see your next newly diagnosed cancer patients, begin establishing expectations early on. The goal after all is for the patients to never need you again once their cancer treatment is completed. Help them embrace survivorship, take charge of their health and their life again, and follow the road map you have built for them. And remember, your ultimate goal for the patients is that they will never need you again.

Uncategorized - September 4, 2013

The Importance of Cancer Survivorship Care Plans: A Physician’s Perspective

In 2005, the Institute of Medicine released a report with a title that became a wake-up call for many in the field of oncology, From Cancer Patient to Cancer Survivor: Lost in Transition. A committee of 17 experts in the field set out to raise awareness of the consequences of [ Read More ]

Uncategorized - September 4, 2013

The Importance of Cancer Survivorship Care Plans: A Pharmacist’s Perspective

LM is a 35-year-old female who was diagnosed with Hodg­kin lymphoma and treated with ABVD (doxorubicin, bleomycin, vinblastine, and dacarbazine) in 2009. Radiographic scans completed at the conclusion of therapy demonstrated that LM had achieved a complete response. Two years later, LM presented to our clinic complaining of generalized fatigue [ Read More ]