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March 2017 VOL 8, NO 3
Cheryl Bellomo, MSN, RN, OCN, ONN-CG
The continuum of care for cancer patients following active treatment includes the transition to survivorship and end-of-life care. Care transition refers to the movement that patients make between healthcare practitioners and settings as their condition and care needs change during the course of their disease, including survivorship care, palliative care, and hospice care. Poor coordination of care during these periods of transition can lead to poor patient quality of life, increased utilization of emergency department services and increased hospital readmission rates, duplication of tests, and medication errors, which lead to increased healthcare costs and suboptimal overall patient outcomes.
Navigators play pivotal roles in recognizing the stages of care transition, identifying patients at highest risk for gaps in care, providing logistical support, and empowering patients by educating them about anticipated events throughout the trajectory of care, as well as facilitating communication between providers and between patients and providers to result in better coordination of care overall. Navigators must be knowledgeable to prepare patients for transitions in care.
There are over 14 million cancer survivors in the United States, a number that is expected to grow exponentially due to an aging population and improved methods for early detection and cancer treatment. The number of cancer survivors is projected to reach 18 million by 2020. The National Coalition for Cancer Survivorship defines a cancer survivor as an individual affected with cancer from the time of diagnosis through the remainder of his or her life.1
In the Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition, the importance of addressing the ongoing physical and psychosocial challenges of cancer survivors was emphasized to encourage the multidisciplinary approach to survivorship as a distinct phase of the cancer continuum. The IOM report noted 4 major components of cancer survivorship care: 1) prevention of new and recurrent cancers and other late effects; 2) surveillance for cancer spread, recurrence, or second cancers; assessment of late psychosocial and physical effects; 3) intervention for consequences of cancer and treatment; and 4) coordination of care between primary care providers and specialists to ensure that all the survivor’s health needs are met.2
Navigators have an essential role in ensuring that quality survivorship care begins at diagnosis and continues throughout the balance of a patient’s life. To be able to address the needs of cancer survivors and to provide patient-centered survivorship care, it is imperative for navigators to understand the issues that cancer survivors face. In the article titled Seasons of Survival: Reflections of a Physician with Cancer, Dr Mullen described a model for cancer survivorship in which survivorship begins at diagnosis and requires early identification and intervention to positively impact quality of life and patient outcomes.3 He identified the seasons of survival as acute, extended, and permanent, and expanded additional seasons to transition, chronic survivorship, and end of life. The acute or early phase of survival encompasses the period from diagnosis through the end of active/initial treatment. During this period, patients often focus on 2 main concerns—cancer recurrence and the ongoing effects of treatment. Throughout this season, patients commonly experience anxiety and fear related to the impact of the cancer diagnosis on their life and future. Extended survival is the period during which the acute phase of care is completed and the patient enters surveillance with watchful waiting and possible intermittent therapy. This season is also often associated with fear of recurrence and dealing with long-term effects from treatments.
Permanent survival is the period during which the activity of the disease or the likelihood of recurrence is sufficiently small that the cancer can now be considered permanently arrested. This is the season in which patients are considered cancer-free but suffer from late or long-term effects of treatment. During this period, survivors can also be faced with psychosocial problems such as finding or keeping employment, health insurance coverage, financial issues, and social isolation. The season of transition recognizes that a survivor evolves from a cancer patient to a survivor and must create a “new normal” or transition back into a precancer lifestyle. Several factors can affect a cancer survivor’s ability to adjust to the new situation. These factors can be disease-related, treatment/rehabilitation-related, and survivor-related, such as the individual’s personality, coping skills, belief and culture system, and available support system. Chronic survivorship includes those who, as a result of the advances in cancer treatments, are living with chronic or metastatic disease. End of life distinguishes the time during which cancer therapy is no longer effective and the disease progresses. The coordination of care is transitioned to hospice care. Throughout the seasons of survival, it is imperative for healthcare providers to continually offer the components of survivorship care in the forms of prevention through health and wellness promotion, surveillance for recurrence and screening for new cancers, intervention for management of lasting physical and psychosocial effects, and coordination of care to cancer survivors.
There is increasing evidence that cancer survivors experience a reduced health-related quality of life attributable to physical impairment and psychologic issues. Many cancer survivors experience persistent physical symptoms and late effects of treatment. Commonly reported persistent symptoms of cancer survivors of all types of cancer include fatigue, sleep-wake disturbance, pain, peripheral neuropathy, difficulty concentrating and remembering, and decreased physical functioning. Cancer survivors may also experience persistent physical symptoms and late effects related to the type of cancer and treatment, such as menopausal symptoms, bowel dysfunction, changes in sexuality and sexual function, and cardiac toxicity.
Maintaining the quality of life of a cancer survivor is a key component of survivorship care. The quality of life for a cancer survivor includes their physical well-being by control or relief of acute symptoms and late effects and the maintenance of function, psychologic well-being with the ability to cope with illness, social well-being with the ability to deal with the impact of cancer on their roles and relationships, and spiritual well-being with the ability to maintain hope and derive meaning from the cancer experience. Navigators through their contact with cancer patients and survivors are instrumental in assessing quality of life. Navigators have a crucial role to play in education, assessment, referral for diagnosis, and treatment management as part of the effort to improve survivor’s function and quality of life.
Referral to rehabilitation and survivorship care plans are 2 components of survivorship care in which navigators play a key role in improving cancer survivors’ function and quality of life. The goals of cancer treatment include preventing as much deconditioning and maintaining as much function as possible in activities of daily living during acute cancer treatments, thereby requiring less reconditioning after treatment is completed. With their understanding and assessment of late and long-term side effects, navigators can be proactive in identifying impairments and referring patients to the appropriate services for treatment, such as exercise therapy, pain management, physical and occupational therapy, and lymphedema and speech/swallowing therapy. Navigation through a complex oncology care continuum, including cancer rehabilitation, is of the utmost importance for the best possible outcomes for patients with regard to both length and quality of life.
Planning for survivorship care through the use of end-of-treatment summaries and survivorship care plans has been recognized by the IOM as an important part of the continuum of cancer care. In 2012, the American College of Surgeons Commission on Cancer (CoC) added Standard 3.3 Survivorship Care Plan as part of the requirements for accreditation. The treatment summary and survivorship care plan provide guidance for primary care physicians, the oncology team, and other healthcare providers in the coordination and continuity of care for cancer survivors. The essential items in the survivorship care plan, as recommended by the IOM, include a follow-up care and management schedule, the providers responsible for follow-up, a list of symptoms of recurrence, and tests warranted for surveillance. In congruence with the IOM’s 4 goals of survivorship care (prevention, surveillance, intervention, and coordination), survivorship care plans should provide the following:
- A summary of an individual’s cancer diagnosis and treatment information (the treatment summary)
- An overview of both physical and psychosocial effects of diagnosis and treatment
- A detailed follow-up plan that outlines surveillance for recurrence and potential late effects as well as recommendations for health promotion strategies
- Referrals and resources for physical, psychosocial, and practical needs
Navigators also play an integral role in the transition to hospice care, which is a specialized branch of palliative care provided to patients who have a life expectancy of 6 months or less and who are no longer receiving cancer-specific treatment because their disease is deemed incurable. In the United States, the average time a patient receives hospice care is only 5 days, and approximately 21% of metastatic patients will succumb to their disease while hospitalized in an intensive care unit. These numbers can be correlated to poor or inadequate communication regarding advanced disease and end of life between the patient and the treating oncologists.
Navigators should advocate the use of hospice services by recognizing seasons of survival, changes in a patient’s quality of life, and understanding that patients may have end-of-life tasks to complete. Statistics show that patients who enroll in hospice care at home sooner actually live longer with better quality of life than those who continue treatment until too ill to tolerate it. Serving as the patient’s advocate, navigators can help support the patient and family by providing resources for end-of-life legal and financial planning and by making sure that the patient’s voice is heard concerning their goals for treatment and quality of life.
The Academy of Oncology Nurse & Patient Navigators Competencies for the Domain of Survivorship/End of Life
- Establishing goal-setting, life goals
- Integrating survivor’s goals/preferences into plan of care
- Providing survivorship education on late and long-term effects
- Coordinating plans of care
- Understanding of palliative and hospice care
- Understanding of CoC Standard 3.3 Survivorship Care Plan
- Understanding of IOM report, From Cancer Patient to Cancer Survivor: Lost in Transition
- National Coalition for Cancer Survivorship. Our mission. www.cancer advocacy.org/about-us/our-mission/. Accessed September 24, 2016.
- Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2006.
- Mullen F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985:313:270-273.
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