Supportive Care of the Patient With Pancreatic Cancer: The Role of the Oncology Social Worker
Supportive Care of the Patient With Pancreatic Cancer: The Role of the Oncology Social Worker
The goals of oncology social work are to facilitate patient and family adjustment to the diagnosis and treatment of the disease; to promote psychosocial recovery and rehabilitation for both patient and family; and to facilitate utilization of health-care resources. The first step for the social worker is to develop a plan of psychosocial care for the patient and family, based on assessment of their physical and psychological functioning and available supportive resources. Social workers can help patients and their families overcome barriers to accessing services such as arrangements for transportation or the procurement of financial assistance. The oncology social worker can also be a valuable resource for information about the patient's disease, including explanation of treatment plans and pain management options. [ONCOLOGY 10(suppl):35-37, 1996]
The social worker plays an important role in meeting the overall goals of the multidisciplinary oncology team caring for cancer patients and their families . Most oncology social workers are mental health clinicians with a master's degree who have expertise in psychosocial assessment; individual, family, and group counseling interventions; patient education; and mobilization of community resources . Social workers help bridge the gap between technologically sophisticated medical care and the patient's everyday, practical human needs. Thus, the oncology social worker complements the patient-care team by representing and attending to the psychosocial support of patients and their families.
To help pancreatic cancer patients adjust to their diagnosis and maintain personal and family functioning to the best of their ability, the oncology social worker first performs a thorough psychosocial assessment, or, increasingly in today's streamlined practice, employs brief screening tools, which are quite efficient in the acute- or ambulatory-care setting. The social worker then prepares a care plan, in collaboration with other health-care team members, to provide counseling for both patient and family, assistance with insurance reimbursement, access to appropriate community resources, and ongoing follow-up with the patient.
Oncology social work utilizes a broad range of counseling modalities, including individual, family, and group therapy; behavior modification; crisis intervention; and emotional support. In addition, the social worker educates patients and families about the nature of the disease involved, the treatment plan, and pain management options. Increasingly, oncology social workers are expanding their role into the non-pharmacologic management of cancer pain by collaborating with psychiatrists, clinical nurse specialists, and chaplains.
Social workers' knowledge of community resources provides a link with mental health services and other cancer support agencies, enabling the patient to mobilize an appropriate support system. The social worker also helps patients gain access to financial resources and other practical post-discharge resources, such as home health care and nutrition services; these may be particularly helpful for pancreatic cancer patients, who often require extensive physical care.
The oncology social worker helps the pancreatic cancer patient and his or her family make decisions by informing them about any options that may be available, clarifying misconceptions about the disease and its treatment, and facilitating communication among family members and among patient, family, and oncology team. As the disease progresses, the social worker informs the patient and family about the potential impact of treatment on the patient's quality of life; the availability of hospice services; and the kind of care that will be needed at home.
The social worker can assist the patient and family in maximizing treatment potential, on a physical level by helping them gain access to care more easily, and on an emotional level by easing their concerns. Patients with a multitude of psychosocial problems may have difficulty not only in accessing adequate cancer treatment but also in complying with an often rigorous and expensive medical regimen.
Four Variables--Sociological research has noted four primary variables that predict emotional vulnerability as it relates to cancer: severity of the illness, previous psychological functioning, presence of social support systems, and other current concerns (eg, work, finances) . Thus, careful assessment of the patient's prior psychological functioning, the presence of adequate social supports (as well as the patient's ability to utilize them), and an inventory of concomitant concerns are essential in determining the ability of patients and their families to participate actively and fully in treatment.
It has been well documented that the crisis of a cancer diagnosis extends beyond the patient to the entire family [5,6]. As the patient and family struggle to comprehend the enormity of a life-threatening disease such as pancreatic cancer, they are thrust into the role of navigating the complex world of the health-care system. As they work to learn an entirely new language and behavior as "patient," they must simultaneously make multiple decisions about treatment alternatives, work and family demands, role changes, financial concerns, and emotional caregiving. It is here that the social worker can help.
The extent to which a patient is able to manage the challenge of cancer can be determined, in part, by his or her family's capacity to adjust to the illness, and the dynamics of the family unit can constitute a powerful force that can enhance (or hinder) the patient's participation in medical care. Often striking in late midlife, cancer of the pancreas disrupts hopes and dreams for retirement and the accomplishment of career and family goals. Suddenly robbed of those dreams and facing a dramatic change in both the quality and quantity of life, patient, partner, extended family, colleagues, and friends begin to confront fears of pain and dying and anticipate letting go.
Most family members cope with the stresses evoked by cancer without pathologically severe psychosocial distress . However, a significant minority show more extreme reactions. In a 1985 study, Hinds reported that more than 30% of families caring for patients with advanced cancer exhibited symptoms of anxiety, depression, fatigue, anorexia, insomnia, or somatic distres that were severe enough to require supportive services . The oncology social worker can refer not only the patient but also family members to various supportive interventions, such as individual or group therapy, peer support networks, and stress reduction therapies.
In today's health-care delivery system, family members are increasingly responsible for providing direct patient care in the home. As family members (especially the primary caregiver or significant other) try to cope with their fears about caring for and losing their loved one, they, too, need support, information, and open communication with the medical team. Routines change and everyday life loses its predictability. Both the patient and family members are confronting their own mortality while continuing to maintain a viable household and responding to the contingencies of the disease and its treatment.
Often, family members' gravest concerns revolve around tangible issues, such as adequate pain management and nutrition, as addressing these problems provides a sense of satisfaction and control at a time when they feel most helpless. To treat the patient effectively, the social worker includes the family unit in a careful assessment of functioning and resources, particularly when family members become more deeply involved in providing the patient's day-to-day care as the disease progresses.
State-of-the-art disease management provides psychosocial care in tandem with medical treatment. Psychosocial intervention has three goals:
Facilitating Adjustment to the Diagnosis and Treatment--The first goal is to facilitate patient and family adjustment to the diagnosis of pancreatic cancer and its treatment. Measures of adjustment include compliance with treatment, mobilization of coping strategies, cognitive processing of the meaning of the illness, and reduced feelings of distress and helplessness.
Variables that measure quality of life are becoming more prominent in treatment protocols and clinical trials, as the goal of "cure" is often supplanted by that of "care." One of these variables--hope--is a crucial component for successful adaptation to cancer, regardless of the eventual outcome of the disease . In what has been described as the "changing mosaic of hope," patients and family members can experience a shift from hoping for a cure, to hoping for more time to participate in certain milestone events (eg, graduation, marriages, and holidays), to hoping for control of pain or to not die alone, to ultimately hoping that the suffering will end soon. Hope, of one sort or another, is an essential ingredient for the patient and family to have a satisfactory quality of life. The social worker can help to facilitate positive reframing of the cancer experience and perhaps connect the patient with other patients with the same disease, who are often the best source of hope.
Promoting Psychosocial Recovery and Rehabiltation--The second goal of social work is to promote psychosocial recovery and rehabilitation for both patient and family. Beyond adjustment, recovery implies stabilizing--if not improving--psychosocial functioning through therapeutic intervention by mental health professionals and/or peer support groups. Promoting rehabilitation becomes a primary preventive strategy against psychosocial morbidity and long-term dysfunction.
Facilitating Utilization of Health-Care Resources--Finally, psychosocial intervention aims to facilitate effective, efficient utilization of health care resources. For example, by reducing or eliminating barriers to accessing services, such as financial aid or the provision of durable medical equipment, the social worker can help the patient obtain the best treatment available.
The oncology social worker can help patients and their families cope with pancreatic cancer in a variety of ways: counseling about the psychological and social issues related to adjusting to diagnosis and treatment; information about and referral to community resources for practical concerns such as transportation, housing or financial concerns, and support in navigating increasingly complex health care systems. It behooves physicians, nurses, patients, and family members to utilize social work services in their institutions to optimize patient functioning and adaptation to cancer.
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