he term “cancer survivor” includes all people living with cancer. Whether cured, in remission, or living with known active cancer, patients who see themselves as survivors play a proactive positive role rather than a passive victim role. Measures of quality of life are high for patients who have an excellent prognosis, although some vestiges of the cancer experience can persist. Coping mechanisms used in the survival process for patients facing persistent disease are identified in this article, together with opportunities and communication approaches for the healthcare provider to facilitate positive coping. The effect of caring for patients with cancer on health professionals and caregivers is also important, but will be the topic of a subsequent article.
Practical interventions are offered to enable the healthcare provider to assist patients and caregivers find what they need to sustain a survivor attitude, rather than become a victim, in this highly charged and challenging environment. From diagnosis through cure or end-of-life support, many healthcare professional behaviors and attitudes can maximize patient comfort, enhance respect for the patient and family, and encourage the patient and family to discover meaning throughout the trajectory of their experience.
RJ is a 55-year-old man who underwent a radical prostatectomy 2 years ago for prostate cancer. He continues to have routine follow-up visits with his healthcare team. He has been experiencing difficulty regaining his pre-cancer quality of life, and mentions his distress to the nurse as he is escorted to the examining room. The nurse conveys the patient’s concerns to the physician before he enters the patient’s room.
Who Is a Cancer Survivor?
The National Coalition for Cancer Survivorship (NCCS) defines a cancer survivor as “any person living with cancer at any time.” Inherent in this definition is the important shift of a cancer patient from victim to survivor. Although this definition serves to create a sense of belonging in the cancer patient community, the requirements of cancer patients are quite heterogeneous and incredibly sensitive to the disease process and its increasingly complex medical management. The healthcare professional is confronted with the need to sustain hopefulness and optimism when there is uncertainty. It is a genuine skill to avoid offering false hope in interactions with the patient and family who want certainty to have some sense of control in planning for the future.
From the moment of a confirmed cancer diagnosis, the patient and family will be confronted with levels of complexity and distress that will change them forever. From this traumatic event onward, the person becomes a patient, and enters an uncertain world where he or she will encounter multiple transitions and be challenged in ways that may be profoundly threatening and foreign. The ability to face challenges with courage is deeply ingrained in the human spirit, and enables the cancer patient to focus fear into meaningful activity.[3-5] These reluctant warriors are now cancer survivors. The term “survive” has traditionally been used to refer to bereaved family as well, as in “Mr. Jones is survived by his sister and two nieces.” Because family and caregivers also survive the cancer experience, both before and after the patient’s death, the term is not restricted to patients. Interventions and support must be extended to include family members and caregivers.
The Institute of Medicine, in its report “From Cancer Patient to Cancer Survivor: Lost in Transition” outlines 4 essential components to the provision of quality cancer survivorship care: (1) prevention of recurrent and new cancers, and of other late effects; (2) surveillance for cancer spread, recurrence, or second cancers and assessment of medical and psychosocial late effects; (3) intervention for consequences of cancer and its treatment; and (4) coordination between specialists and primary care providers to ensure that all of the survivor’s health needs are met.
Survivorship for curable and noncurable cancers.
Overall, cancer patients are living longer than in previous decades (the 5-year relative survival rate for cancers diagnosed between 1999 and 2005 is 68%) and are assuming a much more active role in their medical care. Approximately 11.4 million cancer survivors live in the United States and that figure is expected to increase as curative and life-prolonging advances continue and the population ages. Progress in early detection and diagnosis, and a dramatic increase in the variety of clinical interventions have significantly changed the landscape of cancer management. Cancer is increasingly perceived to be a chronic illness, in stark contrast to the “death sentence” and stigma long associated with a diagnosis of cancer.
Along with this progress has come added responsibility, and for many healthcare providers, added burdens. The general public is much better informed about the realities of cancer and is increasingly willing to openly discuss concerns related to diagnosis, treatment, and the possible outcomes of cure, remission, or even death. This maturing of the population and enhanced ability to discuss end-of-life concerns allows the healthcare provider to explore goals of care, long-term planning, advance directives, and palliative/hospice care from the beginning of the relationship with the patient and family. This sets the stage for ongoing honest discussion of the issues, and lets the patient know that something can always be done to ease suffering, even if cure is not possible.
The public’s expectations are not always realistic, and this can place a burden on the healthcare provider. The significant consumer movement, particularly in the United States, has demanded that patients and their family caregivers be actively involved in the decision-making process. Federal and state regulatory bodies have responded to the demands of advocacy groups and have recognized the rights of cancer survivors.
Specific concerns of cancer survivors.
Many issues faced by cancer survivors, if managed poorly, have great power to undermine the ability of cancer patients to maximize the benefit of medical treatments:
- Lack of or inadequate health insurance is a major problem for cancer patients, especially if they lose their jobs. Family members, who participate in the care, risk losing their jobs as well.
- Job loss is particularly stressful for cancer patients and their family members given the costs related to care. Although 80% of people with cancer return to work after a cancer diagnosis, the ongoing demands of prolonged treatments can put employment at significant risk.
- Emotional concerns include the need to control fear, maintain optimism, and focus on the future. Specific manifestations of these concerns might include managing fear of cancer recurrence and death, buffering the impact of the disease on the family, and protection from the loss of input into medical decision making should the patient become incapable of speaking for him/herself.
- Fear of being a burden and/or abandonment is a part of the human experience. Cancer is perceived by the patient as a personal assault that leaves the patient emotionally vulnerable and potentially dependent. The experience can profoundly affect the cancer survivor. Prolonged surveillance and medical care stresses the patient, family, and social resources. The ability to attain dreams and aspirations is compromised, exacerbating fear, vulnerability and isolation. Abandonment fears are experienced by both patients and family caregivers.
- Noxious physical symptoms create unnecessary suffering that significantly undermines the ability to cope and to trust in the healthcare team.
These issues should be raised as a part of the healthcare team’s comprehensive assessment — if not in the first interview, then as part of the continuous revision and updating of the assessment that is part of optimal cancer care.
Linda Emanuel, MD, PhD; Frank D. Ferris, MD, FAAPHM; Charles F. von Gunten, MD, PhD; Jaime H. Von Roenn, MD
Authors and Disclosures