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4 Psychosocial Services and Providers P sychosocial distress may occur at all points along the cancer con- tinuum: from initial diagnosis through treatment, survivorship, and during advanced illness and end of life. Oncology providers are central to addressing individualsâ psychosocial concerns, but primary care providers, who often have longstanding relationships with patients, may provide support to them as they face a diagnosis of cancer and during the post treatment period of care. This section of the report describes the range of psychosocial interventions that are used to alleviate distress and the pro- viders who may deliver them, as well as professional education and training opportunities that are available in the area of psycho-oncology. PSYCHOSOCIAL SERVICES A number of interventions are used to enhance adjustment to cancer by addressing psychosocial concerns and reducing distress. This section presents brief descriptions of the full range of psychosocial services. At the first and essential level is basic social and emotional support provided by health-care providers. More formal interventions, generally provided by professionals with advanced specialized training, include psycho- educational, cognitive, and behavioral approaches, and additionally, psychotherapeutic (group and individual), psychopharmacologic, and complementary therapies. 70
PSYCHOSOCIAL SERVICES AND PROVIDERS 71 Basic Social and Emotional Support Helping individuals cope with illness through personal interaction and empathy is the most basic level of support that all caregivers should pro- vide. Oncologists and other medical professionals responsible for the care of women with breast cancer need to incorporate planning for psychosocial management as an integral part of treatment. Social and emotional support focuses on adjustment to diagnosis, apprehension regarding treatment, and existential concerns. Providing such basic emotional support is the respon- sibility of those treating women with breast cancer, and it can be enhanced by teams having good communication skills and the ability to recognize significant distress, but it can also be provided individually by peers or clergy, or in group settings such as a support group (Spira, 1998). Providers can take several of the following steps to help individuals cope with ânor- malâ levels of distress (NCCN Distress Management Guidelines, 2003): â¢ clarify diagnosis, treatment options and side effects and ensure that the patient understands the disease and her treatment options, â¢ acknowledge that distress is normal and expected and inform pa- tients that points of transition can increase distress, â¢ build trust, â¢ mobilize resources and direct patient to appropriate educational materials and local resources, â¢ consider medication to manage symptoms (e.g., analgesics, hypnotics, anxiolytics), and â¢ ensure continuity of care. Continued monitoring and re-evaluation are needed to determine if dis- tress symptoms have exceeded ânormalâ expected levels and if a referral to more specialized psychosocial services is indicated. Signs and symptoms that should signal that a patient needs more help in coping include: exces- sive worries, excessive fears or sadness, anger or feeling out of control, preoccupation with illness, poor sleep or appetite, unclear thinking, de- spair, severe family problems, or spiritual crisis (NCCN Distress Manage- ment Guidelines, 2003). Figure 4-1 outlines the NCCN symptoms of âex- pectedâ distress and the âinterventionsâ that will be helpful and are provided by the primary team. Psychosocial Interventions Psycho-Educational Approaches Psychological and emotional support is often given in conjunction with providing education about breast cancer, its diagnosis and treatment, and
72 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER FIGURE 4-1 Interventions for distress. SOURCE: NCCN Distress Management Guideline [DIS 7]. other pertinent aspects of the cancer experience that affect quality of life. This support provides comfort, instills confidence, and reduces the stress of illness and of having to think through and decide about treatment options (Fawzy and Fawzy, 1998). Given the complexity of breast cancer care, phy- sicians often do not have the time to extensively discuss treatment options and concerns regarding those options. Nurses, psychologists, and social workers are among the providers who augment information from other sources, directly address psychosocial concerns, and aid in the shared deci- sion-making process. Psycho-education is also often a component in cogni- tiveâbehavioral interventions (see below). Cognitive and Behavioral Interventions Cognitive and behavioral interventions are among the most widely used in cancer centers (Goldman et al., 1998) (see Box 4-1). Based on the theory that physical and mental symptoms are altered by underlying thoughts, feel- ings and behaviors, several cognitive techniques are employed: distraction,
PSYCHOSOCIAL SERVICES AND PROVIDERS 73 BOX 4-1 Cognitive and Behavioral Interventions Cognitive techniques Behavioral techniques Distraction â redirection Contingency management â use of posi- of attentional processes tive or negative reinforcement to increase to reduce awareness of the frequency of desired behaviors or threatening events or reduce frequency of undesired behaviors. aversive sensations. Systematic desensitization â presenting to Cognitive restructuring â a relaxed individual increasingly potent critical examination and anxiety-arousing stimuli (either in vivo or in reevaluation of negative imagination) to reduce phobic responses. interpretations of events Biofeedback â providing relatively immedi- to reduce feelings of ate information about a normally subliminal distress, helplessness, aspect of a physiologic function to facilitate and hopelessness. learning voluntary control over this function. Mental/Guided imagery â Hypnosis â formal induction of a state use of mental imagery to characterized by sustained attention and promote relaxation, concentration, reduced peripheral aware- enhance perceived ness, and openness to suggestion. control, and improve Progressive muscle relaxation â tensing coping. and relaxing specific muscle groups and Coping self-statements â controlled deep breathing to reduce auto- silent or spoken self- nomic activation and induce subjective statements used to feelings of relaxation. manage, master, or Autogenic training â use of suggestion and reinterpret noxious or deep breathing to reduce autonomic arousal threatening situations and induce a sense of relaxation. and experiences. SOURCE: Jacobsen and Hann, 1998. cognitive-restructuring, guided imagery, and coping concepts to foster mas- tery of threatening situations. These approaches are particularly valuable in three areas: relief of pain, control of anticipatory nausea and vomiting asso- ciated with chemotherapy, and in enhancing emotional well-being (Jacobsen and Hann, 1998). Behavioral interventions are widely used in several ways as outlined in Figure 4-1. Specific techniques for breast cancer patients are hypnosis, pro- gressive muscle relaxation, and autogenic training to induce relaxation. These methods are commonly employed, primarily by psychologists, as ad- juncts to pain management and to reduce anxiety, particularly in anticipa- tion of a frightening experience or procedure.
74 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER Meditation is another behavioral intervention that has been studied for its effects on physical and emotional symptoms. Kabat-Zinn has popular- ized mindfulness-based meditation which patients can learn with a thera- pist and then apply later on their own by use of an audiotape or a self- induced state (Kabat-Zinn et al., 1998). It is often taught in 8â10 group sessions, as well as individual sessions, with exercises to be practiced at home. Frequently, meditation is used in conjunction with other behavioral methods, especially guided imagery and relaxation. Meditation is effective as a means of gaining self-control over distress and anxiety, and helps to control the distress and pain of advanced illness. Psychotherapeutic Interventions Psychotherapeutic approaches for women with breast cancer are fo- cused on coping with cancer, but they permit dealing with issues from the past or present that affect the ability to deal with cancer (Sourkes et al., 1998). These approaches involve engaging the patient in a dialogue in which the therapist shows support and empathy, and often uses the range of clini- cal techniques including some education, cognitive, and psychodynamic components that represent supportive psychotherapy. While theoretical bases may vary by therapist, most experienced clinicians use an âintegra- tiveâ model of psychotherapy that, at a clinical level, tailors the interven- tions to the patientâs personal needs (Stricker and Gooen-Piels, 2002). Therapy, psychotherapy, and counseling are terms that are used inter- changeably, but the content of these interventions is often not clearly de- fined, making it difficult to test them in randomized trials. Several types of psychotherapy, however, have been well described so that they can be ad- ministered systematically and replicated in research studies (e.g., Expres- siveâSupportive Psychotherapy [Spiegel et al., 1989], Interpersonal Psycho- therapy and Counseling [Weissman, 1997], and Adjuvant Psychotherapy [Moorey et al., 1994]). Outlined below are several psychotherapeutic ap- proaches that can be delivered in individual or group sessions. Chapter 5 describes the most rigorous evidence (randomized trials) on the effective- ness of these interventions, and later chapters, in particular Chapter 6, dis- cuss how women can find out about some of these treatment options and gain access to them. Crisis counseling The most common form of clinical intervention is brief counseling, which is typically done in relation to coping with a crisis. The crises usually occur around the time of a change in illness status or treat- ment and result in a transient sense of vulnerability and distress. Counseling at these periods is time-limited and focused on overcoming a present prob- lem or crisis. Underlying personal or psychological problems are not ex-
PSYCHOSOCIAL SERVICES AND PROVIDERS 75 plored (Loscalzo and BrintzenhofeSzoc, 1998). The focus is on quickly re- gaining equilibrium and normal coping ability. Cognitive techniques of problem-solving and restructuring the perception of the crisis may also be employed. The patient may express acute emotional distress, disbelief, an- guish, terror, rage, envy, disinterest, or yearning for death. When expressed, these emotions tend to diminish and the illness can be faced more realisti- cally. Although not specific to cancer in general, or breast cancer specifi- cally, Pollin has described medical crisis counseling and funded an institute to advance short-term crisis counseling at Harvard Medical School (Pollin, 1995). This approach has also been reported to have some success in sup- porting, and enhancing satisfaction among, cancer patients in a small con- trolled trial (20 experimental, 18 control), and perhaps to decrease the costs of mental health services to this population (Koocher and Pollin, 2001). Group therapy and counseling The most widely used intervention for psy- chosocial support is support groups. Groups are available at most cancer centers, at community hospitals, and in voluntary organizations like Gildaâs Clubs and The Wellness Community. They can be led by either peers or professionals and usually include 8 to 12 sessions. Groups may be closed with the same individuals or may remain open, permitting patients to enter at any time and continue indefinitely. The latter is more appropriate for more severe stages of illness. For earlier disease, time-limited, focused sessions are held to deal with adjustment or genetic risk, or confronting prophylactic mastec- tomy. Chapter 5 provides evidence of the effectiveness of group therapy from clinical trials. Clinically, these interventions appear to be helpful to many women because of the social support they provide. Yet there are other women who become more distressed being in a group because of what they hear from patients and because they find it difficult to share their experiences. Pastoral counseling Some women with breast cancer rely on their spiritual or religious beliefs when dealing with illness. A diagnosis of cancer has been called a âpsychospiritual crisisâ because it forces the individual not only to cope psychologically, but also to confront the meaning of life and death (Fitchett and Handzo, 1998). Women may choose counseling from a pasto- ral counselor who can provide spiritual support and help address guilt, loss of faith, fear of punishment, and the need for prayer. Clinical practice guide- lines were developed for pastoral counseling by the multidisciplinary panel of the National Comprehensive Cancer Network (NCCN, 2003). Family therapy and counseling It is well recognized that cancer affects partners and children of women with breast cancer and that psychosocial issues related to breast cancer are often best addressed within the context of the family. Family therapy is frequently the approach of choice when illness
76 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER forces changes in family roles and contributes to conflict (Jacobs et al., 1998; Lederberg, 1998). At stages of advanced illness when patients are being cared for at home, family issues become more crucial and assistance to the family is a vital aspect of care (Schachter and Coyle, 1998). Grief therapy Psychological support for surviving family members becomes important when the patient dies. The oncology team that cared for the patient and knows the family is in a good position to monitor the level of grief and determine if a referral is needed for individual or group counseling (see Worden, 2001). Sexual counseling Women with breast and gynecologic cancers often suffer the most from a sense of loss of femininity and may experience sexual prob- lems secondary to premature menopause and treatment side effects. A skilled sexual therapist can be helpful to a couple in adjusting to such problems (Shell, 2002, and see section on sexual problems in Chapter 3). Psychopharmacologic Interventions Subsumed under psychosocial services are those modalities that com- bine psychosocial support and psychopharmacological intervention. Medi- cation to reduce distress is prescribed to control symptoms in patients with severe symptoms that are not amenable to psychological or behavioral in- terventions alone. The most common forms of distress that become diag- nosable psychiatric disorders (based on the classification system of the Di- agnostic and Statistical Manual of Mental Disorders, Fourth Edition [DSM IV]) include dementia, delirium, mood disorder, adjustment disorder, anxi- ety disorder, substance abuse, and personality disorder. Patients whose psy- chosocial problems reach this level of severity have often had preexisting psychological or psychiatric problems (e.g., anxiety disorder, early demen- tia, recurrent depression), and dealing with cancer can easily exacerbate the disorder. Clinical practice guidelines are available to assist providers in the management of these disorders (e.g., NCCN Distress Management Guide- line [DIS-8]) (see discussion of clinical practice guidelines in Chapter 6). The guidelines, for example, outline the use of antidepressants in combina- tion with psychotherapy, an effective approach in the management of de- pression (Costa et al., 1985; Holland et al., 1998). These disorders range from mild to grave, but they clearly have high morbidity, are serious medi- cal conditions that complicate the course of cancer, and often obligate psy- chopharmacological interventions. They require competent diagnosis and the application of appropriate therapies to properly manage what is medi- cally treatable. An algorithm illustrating the management of mood disorder is shown in Figure 4-2.
PSYCHOSOCIAL SERVICES AND PROVIDERS 77 FIGURE 4-2 Clinical management of mood disorder. SOURCE: NCCN Distress Management Guideline [DIS-12]. Complementary Therapies Yoga, massage, exercise, acupuncture, and art, music, and dance therapy are examples of complementary therapies used by women with breast cancer to reduce psychosocial distress. Many psychological and be- havioral interventions have become identified as complementary therapies. In some schemas, prayer, psychotherapy and nutrition are considered complementary regimens. This variation in defining complementary ap- proaches has made studies of the frequency of their use difficult to inter- pret. These approaches are available at many clinical centers and in the community from voluntary organizations. Some recent evidence suggests use of alternative or complementary therapies may signal psychosocial dis- tress among women with breast cancer (Burstein et al., 1999; Moschen et al., 2001) and in the general population (Unutzer et al., 2000) In general, there is less stigma attached to using these therapies than there is in seeking psychosocial services. Complementary programs appear to be popular, and randomized trials are under way to evaluate several of these methods. As with other cancers, complementary or alternative therapies aimed at the physical disease are also often (25â50 percent) used by women with
78 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER breast cancer. These therapies include nutrition-related measures, mistletoe preparations, trace elements and homeopathy, and others (Burstein et al., 1999, Moschen et al., 2000, U.S. Congress, 1990). Feelings of helplessness, fear, or panic; a desire to gain control, especially of a deteriorating situa- tion; perceived lack of interest on the part of treating physicians; and will- ingness to try anything that might improve chances of a good outcome are among the reasons that women with breast cancer use complementary or alternative therapies (reviewed in U.S. Congress, 1990). PROVIDERS OF PSYCHOSOCIAL CARE Psychosocial services may be provided by the health-care professionals involved in breast cancer care, such as nurses, primary care physicians, sur- geons, and oncologists, or by professionals with special training in social work, psychology, psychiatry, or pastoral counseling. Services might be con- ceptualized as basic, that is, provided as part of routine care by sympathetic and supportive physicians, nurses and clinic and hospital staff who come in contact with the breast cancer patient, supplemented at the next level by others like social workers, support groups, and clergy as needed, and mov- ing in the presence of more serious problems to the highest level of specifi- cally trained mental health professionals such as psychiatrists, psycholo- gists, and clinical social workers (described in Holland, 1990). Figure 4-3 illustrates the complexity of contemporary breast cancer care, showing the typical progression from screening to therapy and the many providers a woman might encounter as she completes her care. Follow-up care, while not quite the same as the specific disease targeted treatment identified in the figure, is also critical in the management of Steps in breast cancer treatment 1. Screening â 2. Diagnosis â 3. Surgery â 4. Adjuvant â 5. Recurrence therapy therapy â¢ Mammogram â¢ Fine Needle â¢ Breast â¢ Radiation â¢ Radiation â¢ Ultrasound Aspiration conserving â¢ Chemotherapy â¢ Chemotherapy â¢ Biopsy surgery â¢ Hormonal â¢ Hormonal â¢ Mastectomy therapy therapy Providers of care â¢ Primary care â¢ Primary care â¢ Surgeon â¢ Radiation â¢ Radiation â¢ Radiologist â¢ Radiologist oncology oncology â¢ Pathologist â¢ Medical â¢ Medical â¢ Surgeon oncology oncology â¢ Surgeon â¢ Surgeon â¢ Primary care â¢ Primary care FIGURE 4-3 The trajectory of breast cancer care. SOURCE: Bicknell, IOM Workshop, October 2002.
PSYCHOSOCIAL SERVICES AND PROVIDERS 79 cancer survivors. The IOM Childhood Cancer Survivorship report (Hewitt et al., 2003) and the forthcoming 2004 IOM Adult Cancer Sur- vivorship report stress the importance of surveillance and interventions to manage late effects and other survivorship concerns by various health professionals. This section of the report describes the education, training, availability, and practice of the professionals involved in providing psychosocial ser- vices to women with breast cancer. Chapter 6 discusses the delivery of psy- chosocial services and points out strengths and weaknesses of various pro- viders and settings. In general, it is clear from that discussion that improvements are needed in both communication by physicians and others and the knowledge base (not to mention the time and resources) to deliver psychosocial services more effectively. This section on professional educa- tion and practice provides background and explanation in part for some of the deficiencies identified in Chapter 6. Nurses Nursing represents the largest segment of the nationâs health care workforce and has a significant role on the âfront linesâ of cancer care, both in hospitals and ambulatory settings (Ferrell et al., 2003; McCorkle et al., 1998). In 2000, an estimated 2.2 million registered nurses were em- ployed full- or part-time nationwide (HRSA, 2000). Current information on the settings in which nurses practice suggests that the role of nursing in the provision of psychosocial services may have lessened, in the sense that relatively few nurses work in ambulatory and community-based settings, the places where most breast cancer care is delivered. In 2000, only 9 per- cent of nurses worked in ambulatory settings (HRSA, 2000). In addition, nursing shortages are contributing to short staffing and reducing the time available to assess or respond to other than acute care needs. Nevertheless, some surgeonsâ offices, most oncologistsâ offices, and all breast cancer clin- ics have an oncology nurse, so that for women in these settings, the oncol- ogy nurse plays a critical role in being sensitive to and often most aware of her psychosocial needs. Basic nursing education rarely includes didactic training in oncology (Ferrell and Virani, 2002; McCorkle et al., 1998). Nurses generally re- ceive some exposure to cancer care through coursework related to surgi- cal and medical care of chronic diseases. Nurses may receive general in- struction regarding psychology and communications, but their training often inadequately prepares them to work in oncology and gives them a limited understanding of the theoretical content related to psycho-oncol- ogy. Burke and Kissane (1998) found this to be the case in Australia and the same is true in the United States (Burke and Kissane, 1998; McCorkle
80 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER et al., 1998). A cancer nursing curriculum guide for baccalaureate nursing has been developed that addresses psychosocial aspects of cancer care (Sarna and McCorkle, 1995), but the extent of its adoption is not known. Likewise, continuing education opportunities have been described (McCorkle et al., 1998), but the extent of enrollment in such programs is not known. McCorkle is presently developing an online curriculum for oncology nurses in the use of the NCCN Distress Management Guideline to enable them to recognize and assess patientsâ distress and apply the algorithm for referral to specialized mental health services (McCorkle, personal communication to Jimmie Holland, March 2003). Oncology nurses who are trained in psychiatric nursing are very effective as mental health professionals in cancer care. Advanced training in oncology nursing is available, but of the 270 nurs- ing graduate programs, only 26 offer a special oncology focus (Ferrell, work- shop presentation, October 2002; Brown and Hinds, 1998). Of these 26 programs, only 18 percent were found in 2000 to cover rehabilitation ser- vices, and 68 percent covered pain management. Following initiatives to improve training in end-of-life and palliative care, all programs were found to cover these areas when surveyed again in 2002. This suggests that major changes in curriculum can occur in response to interventions to improve nursing education. Currently, the Oncology Nursing Society has certified 19,596 nurses as basic level credential adult oncology (OCNÂ®) nurses, 803 basic level credential pediatric oncology (CPONÂ®) nurses, and 1,410 as advanced oncology credential (AOCNÂ®) nurses (Cynthia Miller Murphy, Oncol- ogy Nursing Certification Corporation, Executive Director, personal communication to Roger Herdman, September 4, 2003). To be eligible for certification, a nurse must have one-year of nursing experience as an RN, and 1,000 hours of oncology nursing experience. Advanced prac- tice nurses provide models for clinical practice, education, and advo- cacy. Currently, there are 29,802 members of the Oncology Nursing Society (Cynthia Miller Murphy, Oncology Nursing Certification Cor- poration, Executive Director, personal communication to Roger Herdman, September 4, 2003). In the United Kingdom and Australia, a specialty within nursing on breast care has been developed (Liebert et al., 2003; Redman et al., 2003). These breast care nurses provide education, psychosocial interventions, and case management. Nurses with doctoral degrees (including psychol- ogy) have made an important contribution to psychosocial oncology clini- cal research. Several nursing schools have graduate training in psychoso- cial research, and their faculty provide the field of psycho-oncology with a valuable cohort of senior investigators while also serving as mentors to Ph.D. candidates. Within the Oncology Nursing Society, approximately
PSYCHOSOCIAL SERVICES AND PROVIDERS 81 150 nurse investigators are identified as a section with specialized interest in this area. Primary Care Physicians Primary care physicians, including specialists in internal medicine, fam- ily practice, obstetrics and gynecology, and geriatrics, receive little formal training in elements of psychology and essentially none in communication. What training is received is often limited to experience during a residency program when ambulatory management of chronic illnesses is covered. A review of primary care and internal medicine textbooks for content related to cancer survivorship, conducted for the Board, revealed little content on survivorship, and in the area of breast cancer, little mention of psychosocial issues (Winn, 2002). A comprehensive review of primary care for survivors of breast cancer, published in the New England Journal of Medicine, ad- dresses all the major domains of breast cancer survivorship, including psy- chosocial issues (Goldman et al., 1998). There are relatively few continuing medical education (CME) offerings related to cancer survivorship available to primary care providers, according to a review conducted for the Board (Winn, 2002). One important CME resource is a monograph, Cancer Sur- vivorship, available through the American Association of Family Practice (AAFP, 2001). The monograph includes information on late effects of treat- ment, evaluation of common problems in survivors (including depression and anxiety), disability, and discrimination and related issues (Winn, 2002). Annual meetings of professional societies provide other opportunities for education. As part of the Womenâs Health Session at the 2001 meeting of the American College of Physicians, for example, a module on breast cancer was presented, and it contained a segment on long-term management of breast cancer survivors that included psychosocial issues. Surgeons A surgeon is often the first physician specialist a woman sees after her diagnosis of breast cancer. The American Board of Surgery had certified 47,000 surgeons as of 2000, and there are about 1,500 members of the American Society of Breast Surgeons (www.breastsurgeons.org, accessed April 2, 2003). Board certification in surgery requires clinical competencies, including interpersonal and communication skills that result in effective information and teaming with patients, their families, and other health pro- fessionals. The American College of Surgeonsâ Commission on Cancer has a pro- gram to approve cancer care facilities that meet certain standards, including standards regarding the provision of psychosocial services (see Chapter 6).
82 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER Surgeonsâ training in communication skills and breaking bad news has been limited. As yet, there has been no national effort to include this in training, though many surgical oncology training programs acknowledge its impor- tance. Trainees learn largely by observing senior members in their interac- tions with patients. Radiation Oncologists Most women with early stage cancer who choose a lumpectomy will be referred to a radiation oncologist after their surgery as part of their primary treatment. Patients with metastatic breast cancer are also often treated by radiation oncologists for control of pain related to bone metastases. The American Board of Radiology had certified 3,540 radiation oncologists as of 2002. According to the American Society for Therapeutic Radiology and Oncology, there were 3,174 radiation therapeutic oncologists in 1,400 prac- tices as of 2002. The training of radiotherapists has generally not included communication skills. The daily visits to a radiation oncology unit and daily contact with technicians provide an important setting for positive, sensitive interaction and psychosocial support. Medical Oncologists Women with breast cancer usually consult a medical oncologist, espe- cially when contemplating initial treatment for adjuvant chemotherapy in the presence of positive axillary nodes and with recurrence and progressive disease for chemotherapy aimed at palliation with second- and third-line therapy. As of 2003, 8,901 United States medical oncologists had been val- idly certified by the American Board of Internal Medicine. Roughly 14,000 United States-based physicians belong to the American Society of Clinical Oncology (ASCO), the largest professional society dedicated to clinical on- cology issues (www.asco.org, accessed January 21, 2003). The curriculum that is used to train medical oncologists and hematologists is determined by the American Council of Graduate Medical Education. Rehabilitation and psychosocial aspects of clinical management of the cancer patient are core content areas for training. Oncology textbooks contain limited information on psychosocial aspects of care according to a review conducted for the Board (Winn, 2002). The standard general oncology text, Cancer Principles and Practice of Oncology, for example, includes a section, Supportive Care and Quality of Life (pp. 2977â3088) with a chapter on psychological issues (Massie et al., 2001) and a chapter on community resources (Indeck and Smith, 2001). Cancer Medicine has included a chapter on Principles of Psycho-Oncology in each of its 6 editions (Holland and Gooen-Piels, 2003). In the text, Diseases of the Breast (Harris, 2000), there has been a chapter
PSYCHOSOCIAL SERVICES AND PROVIDERS 83 on psychosocial issues in each edition (Rowland and Massie, 2000). Gyne- cologic texts also include chapters addressing these issues. Abstracts of new psychosocial and quality-of-life research are presented at the annual meet- ings of the American Society of Clinical Oncology (ASCO). At the 2002 meeting of ASCO, for example, there were three sessions devoted to issues related to adjustment to cancer (Winn, 2002). ASCO has a communication initiative for oncologists and oncology trainees that offers workshops for interested members. This is being developed into a formal training program that will be conducted annually (Schapira, 2003). There are several formal psycho-oncology training programs that offer fellowships to physicians (e.g., Memorial Sloan-Kettering Cancer Center, Mount Sinai Ruttenberg Cancer Center, Dana-Farber Cancer Institute, University of Pennsylvania). Most oncologists, however, do not have formal training in psycho-oncology and instead may be trained through case management sessions. Social Workers Social workers are the primary providers of psychosocial services in hospitals and many cancer centers and are trained to facilitate patient and family adjustment to a cancer diagnosis, its treatment, and rehabilitation (Smith et al., 1998). Social workers may also refer cancer patients and fam- ily members who show signs of distress or who have significant family or social problems to psychologists or psychiatrists. In small oncology prac- tices, social workers may be the only professionals available for handling the range of psychological and social problems occurring with cancer. On- cology social workers have a Master of Social Work (M.S.W.) degree and receive training in chronic illness issues in graduate school. Social workers assist cancer patients by addressing the range of psychosocial needs; by providing help with concrete services, such as assisting with insurance and benefits; by serving as case managers to coordinate care and help patients navigate health-care systems; by leading peer support groups; and by refer- ring to community services (Box 4-2). Clinical practice guidelines have been developed by the NCCN to assist social workers in the management of psychosocial distress among patients and families with cancer (NCCN, 2003). There is no formal accreditation in oncology available for social work- ers. However, the Association of Oncology Social Work (AOSW) serves as an educational resource. AOSW, with a membership of approximately 1,000 social workers, provides continuing education and online informa- tion (www.aosw.org). Psychiatric social workers who have additional train- ing in psycho-oncology are particularly valuable as mental health profes- sionals in oncology. The Journal of Psychosocial Oncology, begun in 1983,
84 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER BOX 4-2 Oncology Social Work: Scope of Practice â¢ Clinical Practice: complete psychosocial assessments; develop multidisciplinary care plans; provide therapeutic interventions and case management; assist with financial, transportation, lodging and other needs; advocate to remove barriers to care and ad- dress gaps in service; advance knowledge through research. â¢ Within Cancer Centers/Institutions: provide education and con- sultation to professionals and staff regarding psychosocial and other factors affecting cancer care; collaborate in the delivery of psychosocial care, education, and research; develop programs and resources to address the needs of cancer survivors. â¢ Within the Community: increase awareness of psychosocial needs of cancer survivors, families, and caregivers; collaborate with community agencies to remove barriers to care; collaborate in the development of special programs and resources to address community-based needs; consult with voluntary agencies to pro- vide community education and develop programs. â¢ Within the Social Work Profession: teach in the classroom or in clinical settings; supervise and evaluate practitioners; consult with colleagues; participate in research. SOURCE: http://www.aosw.org/mission/scope.html. reports research findings and clinical observations relevant to the social workers involved in oncology. A number of structured post-graduate opportunities are available for social workers wishing to specialize in oncology. The American Cancer So- ciety (ACS) offers the following career development grants for social work- ers (www.cancer.org): â¢ Masterâs Training Grants in Clinical Oncology Social Work: Awarded to institutions to support training of second-year masterâs degree students to provide psychosocial services to persons with cancer and their families. One-year awards are made for $12,000 (trainee stipend of $10,000 and $2,000 for faculty/administrative support). â¢ Doctoral Training Grants in Clinical Oncology Social Work: Awarded to doctoral degree candidate to conduct research related to the psychosocial needs of persons with cancer and their families. Awards are made for up to three years with annual funding of $20,000 (trainee stipend of $15,000 and $5,000 for faculty/administrative support).
PSYCHOSOCIAL SERVICES AND PROVIDERS 85 ACS also offers a number of fellowships that allow social workers to gain experience in palliative and end-of-life care. The International Psycho-Oncology Society provides information about fellowship oppor- tunities to social workers and others (www.ipos-society.org) as well as the American Psychosocial Oncology Society (www.apos-society.org, accessed April 3, 2003). Psychology Psychologists are the mental health professionals who, after social workers, are most likely to be available for clinical consultation and man- agement of psychosocial concerns in patients with cancer and their families. They also represent the discipline that contributes predominantly to psycho- oncology and psychosocial oncology research. Psychologists receive a Ph.D. in clinical or health psychology or a Psy.D., Doctorate of Psychology. As of 2003 there were approximately 155,000 members of the American Psycho- logical Association, the professional association that represents psycholo- gists, of which nearly 3,000 belonged to the health division (Joel Gallardo, Communications Specialist, personal communication to Timothy Brennan, April 3, 2003). Undergraduate programs do not routinely include training in psycho-oncology, except as it might occur in conjunction with clinical rotations. Some health psychology graduate programs have faculty mem- bers who do research in psycho-oncology. Graduate students in these pro- grams can elect dissertations dealing with oncology issues. Financial sup- port for pre-doctoral students during their dissertation research has encouraged young investigators to enter the field. (J. Ostroff, personal com- munication to Jimmie Holland, March 2003). Psychology internships are not available in the specialized area of on- cology. However, many 2-year post-doctoral fellowships exist that permit training in either research or clinical work alone, or a combination of both. A large number of members of The Society of Behavioral Medicine have their career emphasis in some area of psychosocial or behavioral oncology. They have made major contributions in cancer prevention, cancer control, and life-style change, such as smoking cessation. Counseling There are many Masterâs level counselors who are trained in general counseling and who work primarily in family service agencies and corpo- rate Employment Assistance Programs (EAP). A demonstration project, sponsored by Bristol-Myers Squibb Foundation, is under way to train 150 counselors in a âface-to-faceâ and distance learning program in psychoso-
86 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER cial oncology. If successful, the core curriculum, being developed for the program by Cancer Care, Inc., and The American Psychosocial Oncology Society (APOS), can train a new cadre of counselors who will be available in smaller communities and rural areas (J. Holland, personal communica- tion to Maria Hewitt, March 2003). Psychiatry Psychiatrists with an interest in diagnosis and treatment of comorbid psychological problems and psychiatric disorders are known as consulta- tion-liaison psychiatrists. The American Psychiatric Association, The Ameri- can Board of Neurology and Psychiatry, and The American Board of Medi- cal Specialties have given approval for a sub-specialty certification of psychiatry in the care of the medically ill (initial examinations are expected in 2005). Among the 1,000 United States psychiatrists who work primarily with the medically ill, approximately 100 identify oncology as the major focus of their clinical work, and work with cancer patients either on a full- time basis or as a significant part of their clinical care. Control of symptoms that reduce quality of life, such as severe anxiety, depression, and delirium, requires management of psychopharmacologic interventions and awareness of drugâdrug interactions in the context of complex oncologic treatment. Several of the early, major academic departments and divisions of psycho-oncology have been directed by psychiatrists who developed multidisciplinary clinical and research teams. Psychiatric residents must ro- tate for a period of time, after internship, through the in- and out-patient units, where they learn the common psychiatric disorders of chronically medically ill patients and their psychological and psychopharmacological management. Post-residency clinical fellowships of 1 or 2 years can be taken in psychiatric and psychosocial oncology at a few major academic cancer centers. These few centers have contributed many of the young clinicians and investigators in the field. Psychiatrists, along with psychologists, have contributed to the research portfolio, the development of two textbooks of psycho-oncology (Holland and Rowland, 1989; Holland et al., 1998) and the journal, Psycho-oncology, Journal of the Psychological, Social and Be- havioral Dimensions of Cancer, begun in 1992. More psychiatrists will have to be encouraged to enter into this area to increase the amount of clinical and research activities in the field. Pastoral Counseling Only in recent years have the contributions by pastoral counselors and clergy to psycho-oncology begun to be recognized. A diagnosis of cancer continues to be regarded as a threat to life, bringing the possibility of death
PSYCHOSOCIAL SERVICES AND PROVIDERS 87 into focus. For many patients, confronting issues of life and death consti- tutes a spiritual or existential crisis. As illness advances, the search for mean- ing by patients leads many to seek religious or spiritual counselors to assist them in coping. Chaplains, clergy, and pastoral counselors may be pre- ferred to secular counselors. The NCCN Clinical Practice Guidelines for Management of Distress, written by a multidisciplinary panel, included pas- toral counseling and pastoral counselors as an integral part of psychosocial services and psychosocial professionals involved in supportive services (NCCN, 2003). Many hospital chaplaincy programs give training in clinical pastoral counseling to young seminarians who spend months to a year gaining expe- rience with hospitalized or ambulatory patients. Certification of these pro- grams is done by a national accrediting body, The National Association of Professional Chaplains, which networks clergy working in medical settings. Several journals cover this overlapping area of medicine and clergy (e.g., Journal of Psychology and Theology, Journal for the Scientific Study of Religion, Journal of Religion and Health). Information about spiritual as- sessment and counseling is now available. An issue of Psycho-oncology was devoted to spiritual and religious aspects of psychosocial oncology (Russak et al., 1999). Specialized Counselors There are some situations that require counseling services delivered by professionals with specialized skills. Sexual Counseling Women with breast cancer and gynecologic cancer often experience significant problems in sexual self-image and sexual function. Premature menopause and altered breast and/or pelvic organs create significant dis- tress. Counselors knowledgeable about the sexual side effects of cancer treatment (e.g., reduced libido and desire, reduced lubrication, and painful intercourse) can counsel a woman and her partner in both the psychologi- cal/psychosexual and practical issues arising from these difficulties. Sexual- ity counselors, accredited by the American Association of Sex Educators, Counselors, and Therapists, can be located through the Association (www.aasect.org, accessed April 2, 2003). Grief Counselors The family caregiver who survives the loss of a loved one to cancer will experience normal symptoms of grief. This grief is sometimes allevi-
88 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER ated by group or one-on-one counseling. Grief counselors are skilled at assessment and psychosocial counseling and support. Those who have worked in oncology are particularly helpful in dealing with the family and loss. The Association for Death Education and Counseling provides a registry of accredited grief therapists (www.adec.org, accessed April 2, 2003). Psychosocial Oncologists A range of disciplines and specialists provide psychosocial services to women with breast cancer and to patients in general. In addition to the oncologist and oncology nurse, these services may be provided by an oncol- ogy social worker, a psychiatric social worker, a psychiatric nurse clinician, psychologist, psychiatrist, pastoral counselor, or veteran patients who be- come effective volunteer counselors and advocates. This brings a wealth of experience to the field and a diversity of theoretical frameworks and clinical practice. However, it has also served to make it difficult to ensure that there is a core of knowledge about psychosocial oncology that is common to all disciplines and that can serve as a benchmark for expected knowledge/in- formation in the field. The American Psychosocial Oncology Society (APOS) (www.apos-society.org) is developing a core psychosocial oncology curricu- lum that will be available free online. Lectures will be given by experts in each topic accompanied by slides and a bibliography. The areas to be cov- ered are: Core Courses, Symptom Management, Site-Specific Issues, Psy- chosocial Interventions, Population-Specific Issues, Research, Medical Eth- ics. Optional topics will also be available. Those who complete the curriculum and examination will be added to the APOS Referral Directory which, similar to the effort by the American Society of Clinical Oncology, will serve as a national registry of psychosocial oncologists. An example of the curriculum for training in psycho-oncology is shown in Box 4-3 and that for advanced training in Box 4-4. Continuing education opportunities are provided through several professional organizations: the World Congress of Psycho-Oncology, In- ternational Psycho-Oncology Society, Academy of Psychosomatic Medi- cine, Society of Behavioral Medicine, American Psychological Associa- tion, and American Psychiatric Association. Founded in 1986, the American Psychosocial Oncology Society (APOS) has undertaken a new initiative to network all the disciplines mentioned in this chapter that provide psychosocial services to patients with cancer. Its goal is to be- come a nationally recognized organization that advocates for improve- ment of psychosocial care for these patients and their families. The con- sumer advocacy groups (NABCO, NCCS) also voice the importance of these services to their members. Survivors of breast cancer have played a
PSYCHOSOCIAL SERVICES AND PROVIDERS 89 BOX 4-3 Objectives of Psycho-Oncology Training â¢ Conduct psychiatric/psychosocial evaluations of cancer patients so as to recognize common psychiatric syndromes, disorders, distress and be aware of cancer-site and treatment-specific psy- chiatric problems. â¢ Appropriately apply a range of psychiatric/psychosocial interven- tions for cancer patientsâ psychotherapy including individual, fam- ily, group, supportive, crisis intervention, sexual, bereavement, cognitive-behavioral, psychopharmacology. â¢ Work effectively in a liaison role, provide support to oncology staff so as to better facilitate understanding of patient and family cen- tered issues. â¢ Communicate psycho-oncology information to others, oral and written dissemination of clinically based or research-oriented practices/findings, teach medical students, psychiatric interns, residents. â¢ Be able to critically evaluate and understand and/or conduct re- search in psycho-oncology. â¢ Learn organizational and administrative skills needed to adminis- ter a psycho-oncology program. SOURCE: Passik et al., 1998. BOX 4-4 Curriculum for Advanced Training in Psycho-Oncology I. MEDICAL FACTORS AND THEIR PSYCHOLOGICAL CORRELATES â¢ Basic concepts in cancer and its treatments â¢ Cancer development â¢ Cancer risk factors â¢ Diagnostic procedures â¢ Treatment modalities â¢ Central nervous system complications of cancer â¢ Cancer pain and its management â¢ Psychological effects of cancer and its treatment â¢ Stage-specific issues â¢ Treatment-specific issues â¢ Site-specific issues continued
90 MEETING PSYCHOSOCIAL NEEDS OF WOMEN WITH BREAST CANCER II. PSYCHOSOCIAL ASPECTS OF CANCER â¢ Social factors and adaptation to cancer â¢ Psychological factors â¢ Coping with a life-threatening illness â¢ Social support â¢ Family adaptation to cancer â¢ Childhood cancer â¢ The older patient with cancer â¢ Sexual dysfunctions in cancer patients â¢ The oncology staff III. COMMON PSYCHIATRIC DISORDERS AND THEIR MANAGEMENT â¢ Normal reactions and psychiatric disorders in cancer patients â¢ Depression â¢ Suicide â¢ Anxiety, panic attacks and phobias â¢ Personality disorders â¢ Somatoform disorders â¢ Schizophrenia â¢ Pharmacological management of psychiatric disorders in cancer patients â¢ Psychiatric emergencies IV. ETHICAL ISSUES IN CANCER CARE â¢ Informed consent â¢ Do Not Resuscitate (DNR) Orders V. CULTURAL ASPECTS OF CANCER CARE â¢ Varied attitudes towards illness and treatments â¢ Death and dying â¢ Mourning rituals and bereavement â¢ Suicide â¢ Support systems â¢ Choice of therapy and treatment compliance VI. RESEARCH â¢ Research methods in psycho-oncology SOURCE: Passik et al., 1998. strong role in changing national policy regarding health care delivery in Australia (Redman et al., 2003). SUMMARY A variety of approaches exist to address psychosocial distress that oc- curs among individuals with cancer. Some of the more common ones in-
PSYCHOSOCIAL SERVICES AND PROVIDERS 91 clude social and emotional support, psychoeducational approaches, cogni- tiveâbehavioral interventions, psychotherapy, crisis counseling, and comple- mentary approaches. Providers of these psychosocial services may include clinicians involved in medical care, such as physicians and nurses, and pro- fessionals trained in social work, psychology, and psychiatry. Optimally, these providers work collaboratively to meet the psychosocial needs of women with breast cancer. Evidence suggests that health-care providers have limited training to provide psychosocial support to individuals with cancer and there are rela- tively few post graduate or continuing educational opportunities in this area. Given the effectiveness of psychosocial interventions in alleviating psy- chosocial distress, the Board recommends that: Sponsors of professional education and training programs (e.g., NCI, ACS, ASCO, ONS, AOSW, ACS-CoC, APOS) should support continuing edu- cation programs by designing, recommending, or funding them at a level that recognizes their importance in psycho-oncology for oncologists, those in train- ing programs, and nurses and for further development of programs similar to the ASCO program to improve cliniciansâ communication skills; and Graduate education programs for oncology clinicians, primary care practitioners, nurses, social workers, and psychologists should evaluate their capacity to incorporate a core curriculum in psycho-oncology in their overall curriculum. This curriculum should be taught by an adequately trained faculty in psycho-oncology and should include relevant questions in examination requirements. Education and training opportunities are needed across the cancer care continuum, for providers of primary care and for individuals providing counseling and psychiatric services. While new education and training pro- grams are needed for all cancer care providers, the Board concluded that improvements in access to psychosocial services could most quickly be made with investments in programs for nurses. Nurses play a central role in pro- viding cancer care and currently have very limited oncology training. As a first step, the Board recommends integrating psychosocial content into ba- sic nursing education (baccalaureate and associate degree) programs. In- vestments in training related to pain management and end-of-life care have led to curricular improvements and new requirements on nursing licensure exams. Continuing education for clinical nurses regarding psychosocial is- sues is also needed given the limited exposure to this area in undergraduate curriculums. Increased support of oncology specialty education within graduate programs and promotion of certification in oncology nursing through the OCNÂ® and AOCNÂ® examination process could effectively increase the ranks of nurse leaders able to provide supportive care services, train colleagues, and conduct psychosocial research.
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