Psychologically, older survivors appear to be less affected by their cancer experience, both positively and negatively, than younger ones. Because of developmental shifts “from midlife activity and a long future time perspective to a shorter time perspective; from active, expansive goals toward ones of emotional regulation; toward decreasing need for control; and toward more passive coping all would lead to a moderated or muted effect of having cancer.” Older survivors often are more accustomed to handling negative events in their lives, and, in contrast with younger adults, often do not experience the pressures of fulfilling multiple, competing roles. The flip side is that this perspective also “mitigates the likelihood of making major changes in a positive direction,” including health behavior changes that might lead to a healthier lifestyle. Health Care Professional Response When the health care team transitions persons with cancer and their caregivers to follow-up, post-treatment care, it is now recognized that they should be provided with an explicit written care plan. Ideally, this plan should spell out the follow-up care they should receive to “monitor for recurrences or second malignancies, identify and address late effects of treatment, obtain referrals for needed psychosocial or supportive services, or obtain new information about their disease, treatment effects, and maintaining a healthy lifestyle (eg, smoking, sun exposure, diet, exercise).”
The assessment that serves as the basis of this plan should therefore include an assessment of social needs. Numerous screening tools exist, but the starting point can be the simple acknowledgement that interpersonal relationships, finances, employment, and insurance all can have an impact on cancer survivors’ ability to access and optimize follow-up biomedical care. Addressing social issues, and the distress they may be causing the survivor and family members, will help them to regain a more generalized sense of well-being. For some patients, the end of active treatment can be experienced as a crisis: after months, sometimes years, of benefiting from support and close monitoring by a team of doctors and nurses, the shift to less frequent contact can be unsettling. It has been estimated that 89% of all ambulatory cancer care visits take place in a physician’s office, as opposed to a hospital outpatient department. In these settings, there may not be enough time or expertise to work on, let alone solve, all psychosocial problems; indeed, a large number of these problems stem from institutional and/or societal barriers that are beyond our scope to address. Nevertheless, basic information and education about general survivorship issues can be provided either through educational workshops in medical offices, or through written handouts, which already exist in the form of publications that have been produced by the major national cancer advocacy organizations.
People who work in institutions that provide psychosocial services, or who work in collaboration with providers in their communities or local area, have easier access to professionals such as social workers who help to create survivorship programs, or they can guide survivors and their caregivers to the numerous resources that provide education, counseling, emotional support, financial assistance, and legal advice and assistance. If psychosocial care is not provided for in the same site at which the biomedical health care is provided (usually only in academic medical centers), the next option is referral to local community providers, or to “remote providers,” whose services are accessible by phone or through the Internet, such as the National Cancer Institute’s Cancer Information Service, the American Cancer Society, CancerCare, the Lance Armstrong Foundation, and the Wellness Community.
Organizations such as these are able to provide resource lists with descriptions and contact information for the numerous organizations that assist with employment and insurance issues, financial and legal matters, and fertility and relationship issues, all free of charge. A number of these organizations also host or facilitate support groups, another important means for survivors to obtain needed information and support. There are also educational materials and resources that are developmentally tailored for younger and older adults. (See sidebar, “Guide to Selected Resources for Survivors,” which lists major national organizations that offer services for survivors, as these are related to specific needs and survivor populations.)
Although the scope of change necessary to implement a national standard of psychosocial care for all survivors is beyond any one health care provider, there is now at least a body of information that each of us can provide to meet their basic educational needs. And although resources of time and money are in short supply, we should continue to advocate for our patients and their families and to utilize the broad array of cancer-related community support services that already exist. As the Institute of Medicine urged in their report on cancer care for the whole patient: “Do not allow the perfect to be the enemy of the good. The inability to solve all psychosocial problems permanently should not preclude attempts to remedy as many as possible—a stance akin to treating cancer even when a successful outcome is not assured.”
As one support group member put it, being a cancer survivor is like driving at night: “It isn’t accomplished by knowing every curve of the road ahead. Instead, the headlights shine a light on what’s immediately in front of us—that’s all. And that’s all that’s necessary—shining a light on just the few feet ahead, and then the next few feet, and on and on…and before we know it we have traveled the whole trip in the dark.”
For many survivors, there is a longing for life to return to normal. For some people, this means the way life was before cancer; for others, it means that a new state of equilibrium, sometimes characterized as a “new normal,” has been achieved. Survivors may have to come to grips with a multitude of losses—time taken out of their lives, or expectations they might have previously held for themselves, in the present or in the future. Yet the end of treatment also constitutes an opportunity for the person with cancer to find meaning in the experience, to learn new things about himself and how to live a life without a sense of certainty about what lies ahead.
If cancer is viewed as a kind of journey, it is clear that the person with cancer, caregivers, and members of the health care team are all co-travellers. Twenty years ago, there was not the kind of understanding about the concerns and needs of survivors that currently exists. There may still be no simple answers for the many social challenges of people facing life after cancer treatment. Given what we do know, however, we can do our best to provide as much light as possible (in the form of information and referral to resources) to cancer survivors in our care and their loved ones, to help them further along to wherever their personal journeys may lead them.
This article is reviewed at the following link: Social Challenges Can Be Significant