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DEPARTMENTS: Guest Editorial

So I Have Cancer, How Long Do I Have to Live?

Acker, Kristi DNP, PhD, FNP-BC, AOCNP, ACHPN; Carter, Patricia A. PhD

Author Information
doi: 10.1097/NCC.0000000000000835
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For many, having cancer feels more akin to a death sentence than a medical diagnosis, regardless of the origin and stage of their cancer. Fortunately, advances in screening, detection, and treatment have yielded significant improvements resulting in better patient outcomes. Similarly, innovations in treatment response appraisals and treatment benefit projections guide clinicians and patients in making informed and personalized treatment plans. In truth, while a diagnosis of cancer and the expected prognosis had remained relatively unchanged for many years, novel therapeutics have resulted in a rapidly changing oncology paradigm. But with change comes challenges, especially as it concerns prognosis discussions.

Patients desire open and honest communications with their providers. However, the depth of information patients want varies by individual. After a diagnosis of cancer, patients will ask, “How long do I have to live?” and some patients want information about their specific treatment regimen and survival statistics, although others are overwhelmed with this level of detail. As a default, providers often engage in prognosis discussions that are vague and obscure, fully avoiding survival estimates.1 Recent advancements in innovative treatment regimens, and agents, may contribute to providers being more guarded when discussing prognosis with their patients.

For an example of how prognosis discussions have evolved, consider a former US president’s cancer journey. In 2015, President Jimmy Carter announced that he had stage IV melanoma, which included brain metastasis. Traditionally, it is a rapidly fatal disease with a very poor and well-known prognosis. President Carter received immunotherapy and, at the time of this writing, remains in complete remission an astonishing 5 years later. Seemingly terminal conditions, as exemplified by Jimmy Carter’s metastatic melanoma, give us pause and provide the opportunity to reflect on how the prognosis discussion is evolving. For many “seasoned” providers, gone are the days of looking at a specific disease and silently mapping out the anticipated illness trajectory based on years of relatively little change in prognosis. However, now, providers must work hard to keep up with the constant updates on genetic profiles, molecular structures, immunotherapies, and targeted therapies. Even though the field of oncology is advancing at an unprecedented pace, the human element remains. To patients, cancer is cancer, and they still want to know—what does this mean for me and how long do I have to live?

Challenges in developing treatment plans, symptom management, and patient discussions exist. In the past, explaining how chemotherapy impacted cell division to patients could be rehearsed and delivered in an eloquent fashion. However, in the evolving and technologic-rich oncology setting, trying to explain programmed cell death pathways, as an example, becomes a bit convoluted to elucidate for patients and providers alike. Accepting the challenges for engaging in prognosis discussions allows providers to identify strategies for effectively communicating with patients concerning the uncertainty of foretelling outcomes. Providers remain the key to leading prognostic communications; however, excitement concerning the rapid emergence of novel therapeutics can alter the traditional dialogue. As a result of such novel treatments and screening enhancements (coupled with an aging society), the projected percentage of patients living 5 years beyond diagnosis is expected to increase by 31% by 2026.2,3 This projection, in conjunction with a near 30% decline in cancer death rates, since the 1991 peak,3 highlights the importance of equipping clinicians with cogent communication skills.

Prognosis discussions are central to many aspects of patient care and have gained a renewed focus with the adoption of the Oncology Care Model (OCM). The OCM, introduced in 2015, seeks to ensure that oncology patients participate in frank and truthful dialogue with providers to better understand their prognosis and be an active participant in care plan formation.4 Utilization of the OCM aims to improve care coordination and results in financially responsible treatment regimens and improved outcomes. The shared decision-making model of care delivery is comprised of strategies for facilitating active patient engagement in forming oncology treatment plans.5 The shared decision-making model is central to the palliative care approach, where the provider collaborates with an interdisciplinary team to support rich and meaningful discussions regarding treatment, survivorship, and end-of-life wishes. Like ideal models of healthcare, collaboration continues to be our most beneficial skill for guiding patient prognostic discussions. Benefits for championing prognosis discussions and promoting patient-centered care not only foster informed consent but also allow patients and their caregivers opportunities to prepare for end of life.6

Through the provision of open and honest discussions, patients can be aware that uncertainties in treatment outcomes continue, and at times are more common, with novel approaches. The ultimate goal should be that all members of the oncology team, including the patient, be responsible for engaging in candid discussions, to make the best decisions with the information available. More often than not, patients are able to understand and interpret far more than providers believe to be true. Patients who take active roles in their care can add to the oncology transformation by becoming advocates for mandating that difficult, yet necessary, discussions, including prognosis-driven dialogue, occur. Despite advances in therapies, death is an inevitable part of living and can occur at any point along the disease trajectory, and prognosis discussions are critical to support patients to plan for this inevitability. As oncology clinicians, we need to be available and present with the patient and family throughout their cancer journey. Prognosis discussions will continue to be an important part of this relationship, and with ever-evolving therapies, the nature of these discussions will continue change over time.

– Kristi Acker, DNP, PhD, FNP-BC, AOCNP, ACHPN
– Patricia A. Carter, PhD
Capstone College of Nursing University of Alabama
Tuscaloosa, Alabama

References

1. Chou WS, Hamel LM, Thai CL, et al. Discussing prognosis and treatment goals with patients with advanced cancer: a qualitative analysis of oncologists’ language. Health Expect. 2017;20(5):1073–1080.
2. Bluethmann SM, Mariotto AB, Rowland JH. Anticipating the silver tsunami: prevalence trajectories and comorbidity burden among older cancer survivors in the United States. Cancer Epidemiol Biomarkers Prev. 2016;25(7):1029–1036.
3. Pal SK, Miller MJ, Agarwal N, et al. Clinical cancer advances 2019: Annual report on progress against cancer from the American Society of Clinical Oncology. J Clin Oncol. 2019;37(10):834–849.
4. Colligan EM, Ewald E, Ruiz S, Spafford M, Cross-Barnet C, Parashuram S. Innovative oncology care models improve end-of-life quality, reduce utilization and spending. Health Aff (Millwood). 2017;36(3):433–440.
5. Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361–1367.
6. Thai JN, Walter LC, Eng C, Smith AK. Every patient is an individual: clinicians balance individual factors when discussing prognosis with diverse frail elderly adults. J Am Geriatr Soc. 2013;61(2):264–269.
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