Cancer survivorship—a framework for quality cancer care

Abstract

When diagnosed with cancer or any other life-threatening condition, people must negotiate 2 once-separate but now integrated realms—a medical care industrial complex and an everyday life now lived in conscious awareness of mortality—a state of being subject to death. Life becomes a series of challenges and disruptions to relationships, body image and integrity, autonomy and independence, life goals, hopes, and dreams for the future. Whether one physically, emotionally, or spiritually survives, thrives, or succumbs to cancer is dependent on a treatment plan that accounts for the multiple and varied ways in which people experience dual citizenship in the realms of the well and the sick. A theory of cancer survivorship that integrates both medical and patient perspectives into a cogent and coherent framework has the potential to enhance the quality of cancer care and the patient experience.

“Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick.… Although we prefer to use the good passport, sooner or later each of us is obliged … to identify ourselves as citizens of that other place” (1).

When diagnosed with cancer or any other life-threatening condition, people must negotiate 2 once-separate but now integrated realms—a medical care industrial complex and an everyday life now lived in conscious awareness of mortality—a state of being subject to death. Life becomes a series of challenges and disruptions to relationships, body image and integrity, autonomy and independence, life goals, hopes, and dreams for the future.

Cancer certainly is a disease requiring skilled medical providers, medicines, and advanced technology to achieve remission and perhaps even cure. Yet, cancer is not just a disease process with an associated medical treatment but also a succession of social interactions and psychological conditions that accompany and sometimes affect the cause, timing, and course of the disease (2). The extent to which cancer centers and cancer care providers across the United States account for the medical as well as the psychological, social, and spiritual experiences of patients and families is varied, disparate, and inconsistent. We can do better. If cancer is both a medical condition requiring treatment and a life experience necessitating care and support, then the best treatment plan is one that recognizes that medical care is inextricably linked to and interacts with a patient’s ongoing and developing personal life story, a story that is altered at the time of diagnosis and evolves over months and years.

As a social scientist, former oncology social worker, and long-term cancer survivor (Hodgkin lymphoma diagnosed in 1985 at the age of 25 years), my life has provided me with a unique perspective to observe the juncture where clinical medicine meets the patient at the point of service. Over more than 30 years I have learned from and collaborated with clinical colleagues to better understand the impact of cancer on patients and families, all while embodying a sense of the suffering and fear they experience at the other end of an infusion drip or patient-reported outcome measure. From this vantage point, I urge patients, providers, insurers, and policy makers to work together to enhance a system of cancer care that addresses the medical and experiential aspects of cancer. A theory of cancer survivorship that integrates medical and patient perspectives into a cogent and coherent framework has the potential to enhance the quality of cancer care and the patient experience.

Who and what are cancer survivors?

When I first heard the term cancer survivor, I knew I wanted to be one. Yet, the dissonance and uncertainty that others may feel around the term and its associated identity call into question its value and validity. Many ask how they could be considered a survivor while still undergoing treatment. Others who have completed therapy and achieved a posttreatment disease-free phase also express that they do not feel like survivors. For them, the metaphor of the Sword of Damocles hanging over their heads by a single horsehair and ready to drop at any moment applies (3), suggesting that many cancer patients who have completed treatment still experience uncertainty about their future or fear a recurrence of their cancer (4). Some believe that their cancer or treatment was not as severe as others and thus disqualifies them from being called a survivor.

Decades ago, cancer survivors were the family members, friends, and loved ones left behind after someone died of cancer. The term has evolved in literature and culture primarily as a way of bringing attention to the needs of individuals who have completed cancer therapy. Indeed, the patient advocates who pioneered a survivorship movement in the 1980s originally intended to instill hope that one could achieve a vibrant and productive life after cancer (5). Yet, the term is ambiguous as it is also applied to people throughout a continuum of care that initiates at the time of diagnosis and continues through phases of treatment and transitions to a life after treatment or the end of life. For example, the National Cancer Institute (NCI) contends that an individual is considered a cancer survivor from the time of diagnosis through the balance of life (6).

The term survivor may be useful or meaningful as a way to distinguish the needs of individuals who have completed cancer treatment from those still in treatment (7). Yet, the term has been imposed on a population that has indicated a rejection, or at least a discomfort, with it (4). Its utility, in terms of distinguishing individuals who have achieved a posttreatment phase from those currently receiving therapy (aka, patients), is confounded by the observations that many persons in either of those categories do not think of themselves as survivors. Thus, clinicians, researchers, patient advocates, and cancer-treating institutions have set forth a definition of survivor that is inherently contradictory, or confusing at best: Is a cancer patient a survivor? Is a survivor no longer a patient? Those affected by cancer will benefit from further analysis and conceptual development around what survivorship is and how the concept may be reconstructed and useful for informing cancer care and research.

What is cancer survivorship?

The concept of cancer survivorship is grounded in Fitzhugh Mullan’s seminal work (8) in which he identified “seasons” of survivorship and emphasized the importance of acknowledging and attending to the needs of cancer survivors, specifically those who completed therapy and achieved a curative, or permanent, phase of long-term survival. As a physician diagnosed and treated for cancer, Dr Mullan embodied and articulated medical and patient-oriented perspectives on cancer and survivorship. He acknowledged 3 distinct phases of survivorship: an acute phase involving diagnostics, staging, and treatment; a posttreatment survival phase; and a permanent phase of disease-free survival. Mullan (5) also suggested that living with cancer is a process—a dynamic concept with no artificial boundaries.

As cancer survivors and pioneers of a survivorship movement intent on elevating the needs and experiences of persons affected by cancer, Susan Leigh and Catherine Logan (9) were the first to define cancer survivors as anyone with a history of cancer, from the time of its discovery and for the balance of life. Their conception of survivorship included family members, significant others, and care providers, as all are affected in some way by being or knowing someone with cancer. They also considered survivorship as an experience of living with, through, and beyond cancer, thus reinforcing the notion of survivorship as a process and best articulated by cancer survivors themselves (9,10).

If the NCI considers an individual a cancer survivor from the time of diagnosis, then cancer survivorship logically must be defined as a life experience beginning at diagnosis and continuing throughout the balance of life, and survivorship care must be a process that addresses the needs, conditions, and outcomes of individuals affected by cancer throughout an entire continuum of care. However, this is not the case in cancer care today. For example, leaders in the field have identified survivorship care planning as an important clinical process for supporting people affected by cancer but only at the time of transition from active cancer treatment to a posttreatment phase and primarily for purposes of medical surveillance and follow-up (11). In an extensive review of provider and policy perspectives on survivorship, Nekhlyudov and colleagues (12) derived a Quality of Cancer Survivorship Care Framework (Box 1) that can and should guide the development, implementation, and testing of clinical interventions to achieve desired outcomes in a posttreatment phase. Assessing and addressing the framework’s 5 domains are critical for the health and wellness of off-treatment survivors; however, they arguably are of relevance to all persons affected by cancer throughout an entire continuum of care.

As a self-identified long-term cancer survivor, I am grateful for this attention to my well-being and that of others who have passed through the kingdom of the sick. Yet, cancer care today differentiates patient care from survivor care. The efforts to establish survivorship clinics and survivorship care plans, for example, are predicated on a body of research that has focused on the posttreatment needs and outcomes of those who have completed cancer treatment. Addressing posttreatment needs is increasingly viewed as a key component of survivorship care planning (11). Viewed by whom? Where is the patient viewpoint? In their current configurations, survivorship clinics, survivorship care plans, and even the NCI Office of Cancer Survivorship Quality of Care Framework (12) target a posttreatment phase resulting in a concentrated investment of effort and resources on the transition from active treatment to posttreatment survival. And that’s a good thing. However, there is a lack of an equivalent investment in organizational, clinical, and institutional resources for those cancer patients and survivors traversing the medical industrial complex while still undergoing diagnostics and treatment. Where is the How Do I Live My Life While Dealing with Cancer Survivorship Care Plan?

Survivorship care is cancer care

Survivorship care planning—why is it taking so long?

Perhaps the answer to Birken and Mayer’s (11) question in 2017 is that we have neglected the patient perspective and experience in the conceptualization and development of the care plan itself. This neglect may explain why the uptake, utilization, and subsequent benefit of survivorship care plans are inconsistent across the country. I appreciate that my oncologist provided me with a summary of my chemotherapy regimen and recommendations for getting annual check-ups, but I recall that my greatest concern at the end of therapy was whether I was going to remain a sickly person for the rest of my life and if I ever was going to be able to return to an active lifestyle. I had been out of work for a year and was unsure about my future. Every cough or cold I had made me worry that cancer was coming back again. As much as I appreciated my oncologist for his expertise, support, and recommendations for monitoring my health into the future, he had little to offer when it came to how I might get my life back on track.

People affected by cancer see value in the idea of survivorship care plans (13-15); however, their focus on a posttreatment phase and the scant evidence for their efficacy in terms of improving health outcomes or health-care delivery (15-17) call into question their usefulness. In a recent commentary published in the American Cancer Society journal Cancer, Cho (18) acknowledged a lack of evidence demonstrating efficacy of survivorship care plans and suggested that achieving the benefits of surveillance is theoretically speaking a function of not just histology and organs but also patients. Some have suggested that the exclusion of survivors’ own interests, preferences, and needs explains the lackluster performance of survivorship care plans (17). It is notable that researchers and policy makers have indicated that when accompanied by a human touch (counseling) to prepare survivors for life after the cessation of cancer treatment, survivorship care plans demonstrated a more positive effect on patient outcomes (15).

What next?

I once asked some friends, family members, and colleagues what the term cancer survivorship means to them (19). Here’s what some of them said:

“Not getting the care you need because you cannot afford to pay for it.”

“Remaining silent when you should speak up because you feel no one really understands you.”

“Riding the bus to and from medical appointments.”

“Facing cancer treatments alone because family members are too worried about losing their job if they spend any time away from work.”

“Doing whatever it takes to stay alive and be on this earth for my children.”

“Gratitude and relief, but also fear and disappointment.”

“More time with my friend Brad ([that’s me!].”

These comments have little to do with a disease process, medicine, or curative intent, and everything to do with the effects of that disease on one’s life, including the ability to seek and obtain medical care. They also reflect a sense of hope tempered by everyday realities and fears, which are often depicted in personal narratives like that of Suleika Jaouad. Diagnosed with cancer as a young adult while working as a journalist for the New York Times, Suleika shared with the world her own efforts to manage the treacherous effects of cancer treatment and the concurrent life disruptions on her body, her family, her career, and her hopes and dreams for the future (20,21). Her narrative is illustrative of how one’s cancer experience involves a multitude of medical procedures, invasive treatments, communications of good news and bad, and eventually transitions to a life after cancer and often the end of life.

Whether one physically, emotionally, or spiritually survives, thrives, or succumbs to cancer is dependent on a treatment plan that accounts for the multiple and varied ways in which people experience dual citizenship in the realms of the well and the sick. A theory of cancer survivorship that lacks ambiguity and accounts for medical- and patient-driven concerns is needed to advance comprehensive cancer care (14). Achieving important health outcomes that matter to patients as well as to society at large will require collaboration between and among survivors, communities, organizations, and policy makers (22). Patient engagement and co-design of survivorship care plans that are initiated at the time of diagnosis and reevaluated over time hold promise for advancing the quality of cancer care.

Data availability

No new data were generated or analyzed for this manuscript.

Author contributions

Bradley Zebrack, PhD, MSW, MPH (Conceptualization; Writing—original draft; Writing—review & editing).

Funding

Not applicable. No funding was used for this manuscript.

Conflicts of interest

I have no disclosures or conflicts.

Box 1.

Quality of cancer survivorship care framework (12)

1. Prevention and surveillance for recurrences and new cancers

2. Surveillance and management of physical effects

3. Surveillance and management of psychosocial effects

4. Surveillance and management of chronic medical conditions

5. Health promotion and disease prevention