An Interview with Lillie D. Shockney, RN, BS, MAS, ONN-CG
Ms Shockney is Editor-in-Chief of the Journal of Oncology Navigation & Survivorship; Program Director of the Academy of Oncology Nurse & Patient Navigators; University Distinguished Professor of Breast Cancer, Adm Director of the Johns Hopkins Breast Center; Director of the Johns Hopkins Cancer Survivorship Programs; Professor of Surgery and Oncology at the JHU School of Medicine; and Co-Creator of Work Stride- Managing Cancer at Work.
In 2005 the Institute of Medicine (IOM) issued a report recommending that every cancer patient receive an individualized survivorship care plan that includes guidelines for monitoring and maintaining their health. These plans are an invaluable document for patients and their caregivers; however, much debate has ensued since the issuance of the IOM report as to the best way to provide these plans. As a result, many groups have developed various types of “care plans” to help improve the quality of care of survivors as they move beyond their cancer treatment. We discussed this topic with our Editor-in-Chief, Lillie D. Shockney, RN, BS, MAS, ONN-CG, to understand their purpose and contents, and the role of oncology professionals in their creation and dissemination.
JONS Good morning. To begin, please provide us with the definition and description of a survivorship care plan, or an SCP for short.
Ms Shockney The National Cancer Institute (NCI) defined it well: “A detailed plan given to a patient after treatment ends, that contains a summary of the patient’s treatment, along with recommendations for follow-up care. In cancer, the plan is based on the type of cancer and the treatment the patient received. A survivorship care plan may include schedules for physical exams and medical tests to see if the cancer has come back or spread to other parts of the body. Getting follow-up care also helps check for health problems that may occur months or years after treatment ends, including other types of cancer. A survivorship care plan may also include information to help meet the emotional, social, legal, and financial needs of the patient. It may include referrals to specialists and recommendations for a healthy lifestyle, such as changes in diet and exercise and quitting smoking. Also called follow-up care plan.”
JONS Can you provide a brief history of the evolution of SCPs?
Ms Shockney The Institute of Medicine’s report, From Cancer Patient to Cancer Survivor: Lost in Transition, recommends that each cancer patient receive an SCP—a plan for wellness to help you continue to receive the best healthcare.
Various long-term problems, which included unmet needs and gaps in care facing cancer survivors, were highlighted in this landmark report. Issues for survivors include late effects of cancer treatment, lifelong emotional effects, and local or distant recurrence. The report also cites issues such as poor coordination of care, lack of communication between health practitioners, and patient uncertainty about who is responsible for providing long-term care. Of course, we know now that oncology navigation is key to overcoming these types of issues. The SCP, an individualized treatment summary and plan for ongoing care, was proposed as a solution to many of these issues, especially regarding what should be happening in the form of short- and long-term surveillance after acute cancer treatment is completed. Also, in the context of looming shortages in the oncology professional workforce, it has become clear that it is not realistic to expect oncology specialists to be able to follow their patients long-term after treatment is completed. The shortfall is projected to be between 41% and 48% by 2020. The cause of the shortage is due to poor reimbursement of medical oncology services, resulting in medical students not choosing oncology as their desired field of specialty. Additionally, there is a steady increase in the number of people diagnosed with cancer today. This is primarily due to baby boomers now being in midlife, which has swelled the size of the denominator of people in the United States, which in turn increases the numerator for the number of people being diagnosed with cancers today. I believe that this shortage will grow even further, because the percentages that were projected were based on the assumption that those oncologists in the workforce today would continue working at least until age 70 years when in reality they are burning out sooner than that. It also makes sense when you look at the fact that most of their follow-up cancer survivors are being transitioned back to their community providers to make room for more newly diagnosed patients to be seen by the oncologist.
Consider a doctor in the past seeing 4 newly diagnosed cancer patients and 30 follow-up patients. Appointments by each of the 4 newly diagnosed patients are time intensive and take 1 or even 2 hours. Serious decisions are being made at a time the patient is very upset and fearful. The other 30 patients, however, have completed or nearly completed their treatment and are doing well. These visits are as much social as they are medical, and the doctor can see and enjoy time with them knowing that he played an instrumental role in getting them cancer free. If these 30 patients are removed from his clinical schedule and replaced with 3 more newly diagnosed patients, then his entire clinic day is intense, with no downtime or happy moments to celebrate with the patients who are so appreciative of what he has been able to do for them.
We held focus groups here at Hopkins several years ago to explore this issue. One of the oncologists said, “My follow-up patients are my greatest joy to see. We reminisce about what it was like on their first visit to me and how scared they were. The ups and downs of their treatment. They tell me they pray for me every night. They show me photos of family milestone events that they have recently attended and credit me with having made that happen for them. They even bring me homemade chocolate chip cookies. So who will be eating those cookies in the future since I won’t be seeing these patients anymore?” The answer I gave was “No one will, because your patients won’t be baking them anymore. They were for you because of the personal relationship you have had with your patients. Those patients will not likely be establishing this type of relationship again with someone else.” So it is easy to see how we can burn out our current oncology workforce.
JONS Do all cancer patients receive a treatment summary and SCP?
Ms Shockney No, patients with advanced/metastatic cancers do not because they will always be in treatment until decisions are made to stop treatment and enroll them in hospice care until they die. Originally patients with stage 0 breast cancer were also excluded, but this was changed in 2017 by the Commission on Cancer (CoC) recognizing that they too should have such documents.
I believe, however, that those patients living with a chronic controlled stage of advanced cancer also should be receiving such documents. There are many women with stage IV breast cancer limited to their bones who have favorable prognostic factors that enable them to take hormonal therapy for many years. These women, it would seem, would also benefit from these documents. And for those with advanced disease who will succumb to their cancer in the future months or a few years, they really need a different type of plan—an end-of-life plan. However, physicians for the most part are not comfortable communicating with patients about this vitally profound topic. The result is that there isn’t good planning, and the patients do not receive all of the resources they need (such as palliative care and hospice) or have their affairs in order, or even having discovered their purpose for having lived. These are a few elements that make up a good death experience and, I believe, should be part of such a document, which ironically in their case also describes what will be happening with the rest of their life.
JONS What components make up an SCP?
Ms Shockney The SCP is a complete record of your medical history. In addition to providing specific information about your cancer diagnosis and treatment, it also lists information about possible late effects and signs of a recurrence or new cancer, a schedule for follow-up healthcare including screening tests, tips on cancer prevention, suggestions for maintaining a healthy lifestyle, and explains how to find quality healthcare and other support services.
JONS Who should be involved in the creation of an SCP?
Ms Shockney The treatment summary and SCP are to be delivered in a dedicated appointment with a trained and competent health professional. ASCO and the CoC originally hoped that it would be done by the medical oncologist, but this has proved not to be practical because of the resource-intensive time required to document and review with the patient. Therefore, at most cancer centers, these documents are created and reviewed with the patient by an advanced practice nurse. It is worthy of note, however, that the CoC Standard 3.3 regarding SCPs can also be created and presented to the patient by an oncology nurse navigator.
JONS How frequently should that plan be revisited and updated?
Ms Shockney This remains unclear, but ideally every 6 months. However, this requires the patient to assume more responsibility for self-care and self-management. They will not be seeing any provider frequently unless something else arises.
JONS How is the SCP delivered to the patient?
Ms Shockney It is to be literally handed to the patient during a one-on-one consultative visit. However, patients may live far away, cannot take off from work, or are simply not interested in taking the time to return to the cancer center to receive it. This would perhaps be different if the actual oncologist was conducting this consultation, but I have outlined earlier why that isn’t possible. Hopkins is currently conducting a study looking at several different ways of delivering these documents and comparing their outcomes—one-on-one consultation, via telephone with the documents mailed to the patient, and the documents being mailed with no conversation from a healthcare provider about their contents. The CoC is loosening its standards regarding the delivery method knowing that if a patient living in Montana has to drive 400 miles to attend a one-on-one consultation to receive these documents, that it is a hardship that should be avoided. Such a patient would need to take off from work for several days, have travel expenses, including hotel expenses, and it just isn’t logical to create such a burden.
JONS At what point should a patient resume seeing their primary care provider (PCP)?
Ms Shockney Actually, the ideal model is that the patient should never discontinue seeing their PCP. It should be a shared care model. The patient should still have their comorbidities managed by their PCP and have their preventive illnesses managed by them also. For example, the patient should be getting his flu shot from his PCP and having his diabetes managed by this same doctor, recognizing that while the patient is receiving chemotherapy he will likely be on steroids that will impact his blood sugar levels. Although historically the medical oncologist became the sole provider of a cancer patient, resulting in the oncologist also trying their best to manage the patient’s comorbid conditions, this really should never have happened. Each specialist needs to oversee what he or she is best at providing when it comes to special medical and oncology care.
JONS When is the best time to review the SCP with the patient?
Ms Shockney It needs to happen within 6 months of the patients completing their acute treatment (surgery, chemoradiation, biological targeted therapy, immunotherapy). What causes considerable confusion is that many patients will still need to see their oncology provider(s) after this visit because they are receiving some type of ongoing chronic maintenance therapy designed to prevent cancer from recurring. So a patient may not pay a lot of attention to the contents of the SCP knowing that they are still going to be seeing their oncology provider(s) until sometime in the future. A good example are breast cancer survivors, of whom 70% will be on long-term hormonal therapy for 5 to 10 years. That means they will still be seen by an oncology provider every 6 months for that long a period.
JONS Who else receives a copy?
Ms Shockney There isn’t a specific requirement in the form of a standard that dictates who should have a copy other than the patient herself. However, it only makes sense that the community providers also receive it, and, most importantly, know what to do with it.
JONS Is the plan typically stored electronically?
Ms Shockney If the patient received their care at an institution that has an electronic patient record, then the answer is yes. However, what is really needed is a more sophisticated system that schedules the patient for specific follow-up visits and specific tests and exams in the future as described in the SCP so that the patient doesn’t fall through the cracks and does not receive the follow-up care as intended.
JONS What do you consider to be the ideal SCP program?
Ms Shockney First, I don’t like the name “survivorship care plan.” A care plan is a nursing term and implies this is a medical document. Granted, in the technical sense it is a medical document, but we need the patient to see it as something bigger than that. I think it should be called a survivorship LIFE plan. After all, it is about the rest of their life. And we need to treat the patient as a survivor from the moment of diagnosis. Instead, this is viewed as something that is to happen at the end of their acute treatment. Although we tell a newly diagnosed patient they can consider themselves a survivor right now, as soon as a confirmed diagnosis is made, we are not necessarily treating them as a survivor, and we should. Here is what I mean by this: The goal of treatment is no longer limited to surviving the disease and its treatment. The goal is surviving and maintaining or restoring the quality of life to the patient. We must be delivering patient-centered care, and to accomplish that we need to ask the patient what her life goals are. Where does she see herself in 1 year, 5 years, 10 years, even 20 years from now? When asked this question, a young patient who was working as a bank teller shared with her oncology nurse navigator that she was studying to become a concert pianist, but only her parents, boyfriend, and best friend knew this. The navigator knew this patient was scheduled to received neoadjuvant chemotherapy that included a drug destined to cause peripheral neuropathy. That would mean that this patient would likely not become a concert pianist as a result of the side effects of this drug to treat her breast cancer. The oncology nurse navigator was able to intervene and request that the oncologist select a different treatment regimen so that the patient’s life goal—her passion—would be preserved. This means that the life goals of the patient need to be known before any treatment planning can be done and need to be documented and known to all of the members of the treatment team so they can be dovetailed into the treatment planning process. The same applies to knowing what milestone events the patient has coming up while receiving her acute treatment. A breast cancer patient saw the breast surgeon, and the decision was made to do a mastectomy with tissue expander insertion. The doctor said that she would get a call confirming her OR date. The following day she did and was told that her surgery was in 2 weeks. No one knew her daughter was getting married in 3 weeks. Without knowing this information, this patient would have gone to her daughter’s wedding feeling ill, in pain, and having JP drains underneath her mother-of-the-bride gown. The patient assumed that she couldn’t change the OR date. She thought the surgeon needed to get the cancer out quickly, when the real reason was a 2-hour opening on the OR schedule.
As the first part of the SCP, we should see if the patient remains on track for their life goals and have enjoyed their milestone events. Then the contents are as previously described until we get to lifestyle behaviors to consider adopting as ways to reduce the risk of getting cancer again. These can be considered new life goals to be added to the ones that already exist, because lifestyle behavior changes cannot happen in a day or a week, or even a month; most take a long time to accomplish, such as exercising regularly, changing to a low-fat diet, and stopping her smoking habit.
There are other life goals she may want to consider adding given that getting cancer has been a life-altering experience. I have seen patients decide to go back to school to get their college degree; change their career path to what they had hoped they would be doing but never got around to doing; downsizing their life so they have more time with family; and yes, I have even seen a few decide that in their new life goals, they want a husband-ectomy.
We also need to ensure that the patient’s PCP and other community providers know what do to with this information. The document may say that they are to get a mammogram in 6 months but doesn’t say whom to call to get the order written and subsequently scheduled. Is it the PCP or the gynecologist? If this isn’t clear, a patient may get nothing done, or just as bad, 2 mammograms done. So there is a need for explicitness as well as promotion of self-management. The patient needs to be taught how to help herself differentiate a side effect from treatment versus the onset of distant recurrence. Also, the PCP needs to be able to easily reach the patient’s oncology providers if a question arises. What we don’t want to see is a patient without confidence in their PCP managing the survivorship care issues, so she demands a full staging workup every 6 months—tumor markers, scans, x-rays, other tests, which average $11,000. Such workups should not happen unless there is an oncologic reason for them to be done.
The patient needs to have resources that enable her to stay abreast of the latest information in her cancer world. New research results. New information about how to reduce risk. This will further empower her and give her a better sense of control. We provide survivor retreats for patients (2 days/1 overnight stay) and also webinars throughout the year along with an annual breast cancer symposium—all opportunities for learning new information and feeling more confident about their health and well-being going forward.
I am a 25-year survivor, soon to be 26 years out from my first diagnosis of breast cancer. Even I can still get my foundation rocked when a friend or patient gets diagnosed with metastatic disease 2 decades after her original, what was believed to be early, diagnosis. I tell patients this, and I think it provides them a sense of comfort that they are not alone in their own thoughts and worries. However, if we only worry about recurrence each day, then we are not enjoying the life that was saved for us all. So the patient needs to be told what her actual risk of distant recurrence really is so it can be put into perspective.
JONS This is all wonderful information for navigators. Thank you for taking the time to talk with us.
Ms Shockney My pleasure.