Key points

Introduction

As cancer evolves from a terminal illness to a chronic medical condition, so too does the need for clinical services beyond medical, surgical, and radiation oncology that principally focus on disease modification. The concept of survivorship for individuals with cancer is broad in scope. Although a cancer survivor is anyone who lives with cancer, from the time of diagnosis throughout the balance of life, the context can vary from living cancer free for the remainder of life to living with cancer continuously without a disease-free period. With more than 15 million individuals living who have a history of cancer, and a projection of almost 19 million by 2024, comprehensive approaches to care will be necessary to address the ongoing clinical needs of survivors. Two areas that warrant specific emphasis include impairment-driven cancer rehabilitation and palliative care.

According to the Institute of Medicine, barriers to the delivery of high-quality cancer care exist secondary to rapidly increasing incidence, disease and treatment complexity, and costs, as well as a shrinking workforce. Given that aging is considered one of the greatest risk factors for cancer, several characteristics of the aging population may affect prognoses and care plans, such as altered physiology, premorbid functional and cognitive impairments, multimorbidity, increased side effects of treatment, distinct goals of care, and an increased need for social support. Understanding the importance of function and symptomatology, and their integration into the continuum of cancer care is critical for successful care delivery in the future.

Introduction

As cancer evolves from a terminal illness to a chronic medical condition, so too does the need for clinical services beyond medical, surgical, and radiation oncology that principally focus on disease modification. The concept of survivorship for individuals with cancer is broad in scope. Although a cancer survivor is anyone who lives with cancer, from the time of diagnosis throughout the balance of life, the context can vary from living cancer free for the remainder of life to living with cancer continuously without a disease-free period. With more than 15 million individuals living who have a history of cancer, and a projection of almost 19 million by 2024, comprehensive approaches to care will be necessary to address the ongoing clinical needs of survivors. Two areas that warrant specific emphasis include impairment-driven cancer rehabilitation and palliative care.

According to the Institute of Medicine, barriers to the delivery of high-quality cancer care exist secondary to rapidly increasing incidence, disease and treatment complexity, and costs, as well as a shrinking workforce. Given that aging is considered one of the greatest risk factors for cancer, several characteristics of the aging population may affect prognoses and care plans, such as altered physiology, premorbid functional and cognitive impairments, multimorbidity, increased side effects of treatment, distinct goals of care, and an increased need for social support. Understanding the importance of function and symptomatology, and their integration into the continuum of cancer care is critical for successful care delivery in the future.

The importance of cancer rehabilitation and palliative care

According to The Surveillance, Epidemiology, and End Results Program, the total estimated new cancer cases in the United States for 2015 is approximately 1.6 million, occurring at a rate of 457.2 per 100,000, for both males and females. The long-term mortality trend analysis, however, shows that the overall cancer death rate in the United States has declined by an average of 1.5% per year (between 2003 and 2012). Although the number of cancer survivors continues to increase, deficits exist in addressing their long-term clinical needs. For example, according to a recent survey, physical problems were the most frequently unmet need among cancer survivors ( Table 1 ), in addition to provision of information regarding their future care, and mental health. Understanding that both physical and psychological impairments can contribute to decreased health-related quality of life (QOL), and that treatment of physical, psychosocial, and spiritual needs can improve quality of care, both rehabilitation and palliative care can play critical roles in the oncology care continuum. Realizing the importance of these services, the Commission on Cancer has incorporated standards regarding rehabilitation and palliative care as core components for program accreditation ( Table 2 ).

Barriers to the integration of palliative care and rehabilitation into comprehensive cancer care relate to limited understanding of the definitions of both specialties and how they may be applied throughout the continuum. The World Health Organization defines palliative care as:

[A]n approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Aspects of clinical palliative care may include alleviation of pain and other distressing symptoms, attention to psychological and spiritual aspects of care, and enhancement of QOL to positively influence the course of illness. A team approach is used to address the needs of patients and their families. If appropriate, palliative care should be integrated early in the course of illness, in association with other therapies meant to prolong life, to comprehensively detect and address clinical complications.

Similarly, oncology rehabilitation incorporates both a comprehensive and interdisciplinary approach that addresses the scope of clinical care. Specifically, cancer rehabilitation is defined as

[M]edical care that should be integrated throughout the oncology care continuum and delivered by trained rehabilitation professionals who have it within their scope of practice to diagnose and treat patients’ physical, psychological, and cognitive impairments in an effort to maintain or restore function, reduce symptom burden, maximize independence and improve quality of life in this medically complex population.

The application of rehabilitation principles may benefit patients across all phases of cancer care, including the preventative, restorative, supportive, or palliative aspects of care. However, the ability to provide these services throughout the spectrum of oncology care is critical to ensure patients maintain appropriate access to care.

As cancer care continues to advance, the role for comprehensive oncological care has become a priority for the survivor. However, recent trends have shifted the care of cancer patients from tertiary centers to community-based models, potentially limiting their access to specialty services such as rehabilitation. Access to care must remain a critical issue as it relates to palliative and rehabilitation services. With improved efficacy of treatment and decreased comorbidities, survival rates will continue to improve regardless of the setting, and survivors’ needs will undoubtedly include symptom control and functional optimization before, during, and after acute oncological measures. Given that palliative care and rehabilitation can both exert major potential positive impacts on overall QOL, and diverse health outcomes, and that patients are becoming more engaged and involved in their care, the roles of these specialties are likely to increase in acceptance and prominence.

Gaps in delivering high-quality cancer care

Cancer rehabilitation and palliative care are both critical components of high-quality oncology services. A recent report by Silver and colleagues highlighted the important similarities and differences and focused on how these services could be better integrated in cancer care. This report emphasized that rehabilitation and palliative care practitioners are important referral sources for each other. Working collaboratively they can enhance survivors’ ability to function and improve QOL.

Indeed, gaps in cancer rehabilitation training and care delivery have been well-documented in the literature. Although cancer rehabilitation has been highlighted as an important area for targeted education across stakeholder groups, the quality and quantity of patient experiences remains a target for improvement. For example, in a cohort of women with advanced stage breast cancer, Cheville and colleagues found that approximately 92% had impairments and less than 2% of those were addressed proactively in an ambulatory setting. It was noted that systematic disability screening may be required to reliably detect functional decline and address a decades-long pattern of underuse of rehabilitation services among people with advanced cancer. Pergolotti and colleagues studied 529 older adults with cancer and found that 341 (65%) had potentially modifiable functional deficits with the potential to benefit from physical and/or occupational therapy, but only 9% received these services.

Similarly, gaps exist in the delivery of palliative care. Students and residents feel unprepared to provide, and faculty and residents feel unprepared to teach, end-of-life care. Despite empirical evidence for spiritual care as part of palliative care, religion and spirituality remain insufficiently addressed by the medical system. Access to palliative care services remains limited, with an acute shortage of hospice and palliative medicine physicians (potentially 6000–18,000 practitioners). Furthermore, evidence suggests decreased use of palliative care with increasing regional Medicare expenditure ($1387 difference per beneficiary between the first and fourth quartiles of palliative care use), and attention is still needed to address access barriers in underserved regions. Some access-related issues may stem from patients’ and clinicians’ perceptions of palliative services. After completion of semistructured interviews with providers in Pennsylvania, palliative care was perceived as end-of-life or hospice, and often underrecognized as a resource for managing symptoms and addressing the psychosocial needs of patients with chronic illnesses.