Page 39 Complete Your CE Test Online - Click Here still there. However, at this time they will be losing the frequent careful follow-up of their oncology care team. Patients who are ending their cancer treatment need very specific types of information, which can help them be healthier in their post treatment lives [31,247]: ● ● The cancer type and stage; pathology reports from biopsy results, copies of imaging test results such as CT and MRIs (usually in DVD or other digital form) and any genetic testing results. ● ● Treatments prescribed, including any surgical reports, medication names, doses, and length of treatment; radiation site and dose; and any ill effects observed, as well as potential late effects of those treatments. ● ● If the patient was in the hospital, a copy of the discharge summary. ● ● Specific instructions about when and where to have follow-up care (oncologist vs. primary care provider, for example). ● ● Preventive health recommendations including screening for other cancers and health maintenance. ● ● Practical legal/financial protections regarding future employment and health insurance. ● ● Community resources for psychosocial support. Getting copies of medical records right away is extremely important for patients, who probably do not know that their medical records might not be there in perpetuity. Many records are destroyed after only a few years. Patients need to understand that these records must be kept for their reference and sometimes for their children as well (for purposes of maintaining their family histories). Patients should also understand that these records can be copied by their future doctors, but that they should always keep the originals for themselves. For those who want to use digital record storage, there are tools for that. The U.S. Department of Health and Human Services (DHHS) created the Blue Button Connector to help with this (see “Resources for Patients”) [31]. Nursing consideration: Advise patients about the need to keep copies of their own cancer treatment records (and offer specifics on how to get those records from treatment facilities). Having records can help them with follow-up and prevention. Requirements for retention of medical records varies by state and type of practice, but can be as short as five to ten years after the patient is last seen at that office or facility [71]. At the end of treatment, an assessment of persistent symptoms and other problems should be undertaken in order to plan for unmet needs. Many patients still have fatigue, pain, emotional distress, cognitive dysfunction, and specific toxicities related to their cancer treatment. The NCCN has a guideline specifically addressing the post-treatment needs, including a focused assessment that can be used as a jumping-off point for evaluating patients after treatment. Patients should be routinely screened at intervals during follow-up visits for emotional distress, such as anxiety, depression, and panic as well as for sleep disorders and sexual dysfunction. The NCCN Survivorship guideline contains short sexual symptom checklists for both men and women that can be used to start the conversation (see “Resources for Nurses”). There are also special considerations for patients with lymphedema, ostomy, and post- stem-cell transplant, among others. This can inform additional planning and specific referrals tailored to the patient’s continued needs [209]. Patients whose family histories indicate the possibility of genetic mutations should be referred for genetic risk assessment and possible genetic testing. Patients who are known to have genetic mutations that increase cancer risk should be informed of any changes in screening conferred by the new risk awareness [209]. Patients should know about typical symptoms of recurrence, which are based on the type of cancer treated as well as other symptoms or problems for which they are to call the oncologist or the primary care provider. They should know the general follow-up schedule for rechecks with the oncologist as well as when they might need to see their primary care provider. In addition to follow-up testing that looks for recurrence, cancer screening for other types of cancer should be discussed. Most patients should follow the average risk screening guidelines except for cancer sites for which they may need extra screening in light of the type(s) of cancer they have had. For instance, a woman who was treated for colon cancer is probably going to be on an every-five-year colonoscopy schedule for as long as she is healthy enough to tolerate treatment. But she would not likely need MRI in addition to mammography unless she has a high risk for breast cancer due to family history or genetics. The cancer rate is higher in people who have survived cancer than in the general population. A history of a certain cancer type usually indicates a higher than average future risk of that cancer, such as with breast cancer (if the woman still has any breast tissue after treatment). A number of cancer treatments, including certain chemotherapy drugs and radiotherapy, can confer a higher risk of specific types of second cancer cancers in the future. This means that some cancer patients will not receive “average-risk” recommendations for every cancer screening type after their treatment [209]. Other wellness planning includes future vaccine considerations as well as exercise and dietary plans tailored to the patient’s current status and needs. As an additional resource in its Survivorship guideline, NCCN also has a listing of websites and organizations for the health professional and the patient, that cover many topics and needs, such as legal and work-related issues, nutrition and weight management, heart health, and smoking cessation as well as other survivorship guidelines [209]. End of life Despite all of the progress that has been made in cancer care, many people who have cancer still die due to cancer. For some people the cancer recurs; for others, especially those whose cancers were found in late stages, the cancer went into remission. Some people do not want to accept that there is little that can be done for them, and prefer to keep receiving aggressive treatment. Others do not want the additional side effects and activity limitations, and are ready to move on. For a lot of people, it is a difficult transition from treatment (or diagnosis) to looking toward the end of life. Clear communication can help It is important to communicate clearly with the patient about what is happening. Some doctors are reluctant to speak directly about death with a patient, and often use ambiguous or optimistic terms when talking about prognosis and care plans. But patients who are aware of their terminal status have a higher quality of life and are more likely to receive care that is consistent with their preferences. According to the NCI, nearly 90% of patients want to be informed about their life expectancy, and more than half want to know about end of life decisions [185]. It is possible to simply ask the patient how much they want to know about the likely course of their illness; some people want details while others like key points. Some would rather it be discussed with family members instead, but that should happen only if the patient states that as a preference. And a corollary question is how much say patients want themselves or family members to have in making decisions about care [45]. It is also important to emphasize that it is okay to ask any questions, even those that might not have a clear answer. For the vast majority of patients who want to know, nurses can open a conversation with open-ended questions such as: ● ● “How are you feeling about ending treatment?” ● ● “What do you see yourself doing next?” ● ● “What concerns do you have about your cancer at this point?” Most patients are aware that they are not going to live as long as they hoped or expected, and some want to talk about it even though it is an emotional topic. The nurse can validate the sadness and other emotions without false reassurance by listening to the patient and pointing out that it is normal to grieve and go through a lot of different emotions in this situation. These emotions can include anger, fear, anxiety, sadness, and depression, among others [35]. Guilt, regret, and despair may emerge as the patient reflects on their life. Concerns about pain, being a burden to others, loss of dignity and control, and feeling alone are also common themes when patients think of impending death [35]. The nurse can reflect back the patients’ concerns with some reframing on what the patient might be able to do and what the oncology team or palliative care/ hospice team can do to address these concerns, depending on what has already been planned or discussed. The nurse will need to share with the