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Meeting Psychosocial Needs of Women with Breast Cancer 4 Psychosocial Services and Providers Psychosocial distress may occur at all points along the cancer continuum: from initial diagnosis through treatment, survivorship, and during advanced illness and end of life. Oncology providers are central to addressing individuals’ 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 providers 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 psychoeducational, cognitive, and behavioral approaches, and additionally, psychotherapeutic (group and individual), psychopharmacologic, and complementary therapies.
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Meeting Psychosocial Needs of Women with Breast Cancer 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 provide. 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 responsibility 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 “normal” levels of distress (NCCN Distress Management Guidelines, 2003): clarify diagnosis, treatment options and side effects and ensure that the patient understands the disease and her treatment options, acknowledge that distress is normal and expected and inform patients that points of transition can increase distress, build trust, mobilize resources and direct patient to appropriate educational materials and local resources, consider medication to manage symptoms (e.g., analgesics, hypnotics, anxiolytics), and ensure continuity of care. Continued monitoring and re-evaluation are needed to determine if distress symptoms have exceeded “normal” 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: excessive worries, excessive fears or sadness, anger or feeling out of control, preoccupation with illness, poor sleep or appetite, unclear thinking, despair, severe family problems, or spiritual crisis (NCCN Distress Management Guidelines, 2003). Figure 4-1 outlines the NCCN symptoms of “expected” distress and the “interventions” 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
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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, physicians 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 decision-making process. Psycho-education is also often a component in cognitive–behavioral 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, feelings and behaviors, several cognitive techniques are employed: distraction,
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Meeting Psychosocial Needs of Women with Breast Cancer BOX 4-1 Cognitive and Behavioral Interventions Cognitive techniques Behavioral techniques Distraction – redirection of attentional processes to reduce awareness of threatening events or aversive sensations. Cognitive restructuring – critical examination and reevaluation of negative interpretations of events to reduce feelings of distress, helplessness, and hopelessness. Mental/Guided imagery – use of mental imagery to promote relaxation, enhance perceived control, and improve coping. Coping self-statements – silent or spoken self-statements used to manage, master, or reinterpret noxious or threatening situations and experiences. Contingency management – use of positive or negative reinforcement to increase the frequency of desired behaviors or reduce frequency of undesired behaviors. Systematic desensitization – presenting to a relaxed individual increasingly potent anxiety-arousing stimuli (either in vivo or in imagination) to reduce phobic responses. Biofeedback – providing relatively immediate information about a normally subliminal aspect of a physiologic function to facilitate learning voluntary control over this function. Hypnosis – formal induction of a state characterized by sustained attention and concentration, reduced peripheral awareness, and openness to suggestion. Progressive muscle relaxation – tensing and relaxing specific muscle groups and controlled deep breathing to reduce autonomic activation and induce subjective feelings of relaxation. Autogenic training – use of suggestion and deep breathing to reduce autonomic arousal and induce a sense of relaxation. SOURCE: Jacobsen and Hann, 1998. cognitive-restructuring, guided imagery, and coping concepts to foster mastery of threatening situations. These approaches are particularly valuable in three areas: relief of pain, control of anticipatory nausea and vomiting associated 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, progressive muscle relaxation, and autogenic training to induce relaxation. These methods are commonly employed, primarily by psychologists, as adjuncts to pain management and to reduce anxiety, particularly in anticipation of a frightening experience or procedure.
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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 popularized mindfulness-based meditation which patients can learn with a therapist 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 8–10 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 focused 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 clinical techniques including some education, cognitive, and psychodynamic components that represent supportive psychotherapy. While theoretical bases may vary by therapist, most experienced clinicians use an “integrative” model of psychotherapy that, at a clinical level, tailors the interventions to the patient’s personal needs (Stricker and Gooen-Piels, 2002). Therapy, psychotherapy, and counseling are terms that are used interchangeably, but the content of these interventions is often not clearly defined, making it difficult to test them in randomized trials. Several types of psychotherapy, however, have been well described so that they can be administered systematically and replicated in research studies (e.g., Expressive–Supportive Psychotherapy [Spiegel et al., 1989], Interpersonal Psychotherapy and Counseling [Weissman, 1997], and Adjuvant Psychotherapy [Moorey et al., 1994]). Outlined below are several psychotherapeutic approaches that can be delivered in individual or group sessions. Chapter 5 describes the most rigorous evidence (randomized trials) on the effectiveness of these interventions, and later chapters, in particular Chapter 6, discuss 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 treatment and result in a transient sense of vulnerability and distress. Counseling at these periods is time-limited and focused on overcoming a present problem or crisis. Underlying personal or psychological problems are not ex-
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Meeting Psychosocial Needs of Women with Breast Cancer plored (Loscalzo and BrintzenhofeSzoc, 1998). The focus is on quickly regaining 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, anguish, terror, rage, envy, disinterest, or yearning for death. When expressed, these emotions tend to diminish and the illness can be faced more realistically. Although not specific to cancer in general, or breast cancer specifically, 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 supporting, and enhancing satisfaction among, cancer patients in a small controlled 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 psychosocial support is support groups. Groups are available at most cancer centers, at community hospitals, and in voluntary organizations like Gilda’s 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 mastectomy. 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 “psychospiritual crisis” 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 pastoral counselor who can provide spiritual support and help address guilt, loss of faith, fear of punishment, and the need for prayer. Clinical practice guidelines 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
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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 problems 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 combine psychosocial support and psychopharmacological intervention. Medication to reduce distress is prescribed to control symptoms in patients with severe symptoms that are not amenable to psychological or behavioral interventions alone. The most common forms of distress that become diagnosable psychiatric disorders (based on the classification system of the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition [DSM IV]) include dementia, delirium, mood disorder, adjustment disorder, anxiety disorder, substance abuse, and personality disorder. Patients whose psychosocial problems reach this level of severity have often had preexisting psychological or psychiatric problems (e.g., anxiety disorder, early dementia, 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 Guideline [DIS-8]) (see discussion of clinical practice guidelines in Chapter 6). The guidelines, for example, outline the use of antidepressants in combination with psychotherapy, an effective approach in the management of depression (Costa et al., 1985; Holland et al., 1998). These disorders range from mild to grave, but they clearly have high morbidity, are serious medical conditions that complicate the course of cancer, and often obligate psychopharmacological interventions. They require competent diagnosis and the application of appropriate therapies to properly manage what is medically treatable. An algorithm illustrating the management of mood disorder is shown in Figure 4-2.
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Meeting Psychosocial Needs of Women with Breast Cancer 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 behavioral interventions have become identified as complementary therapies. In some schemas, prayer, psychotherapy and nutrition are considered complementary regimens. This variation in defining complementary approaches has made studies of the frequency of their use difficult to interpret. 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 distress 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 (25–50 percent) used by women with
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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 situation; perceived lack of interest on the part of treating physicians; and willingness 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, surgeons, and oncologists, or by professionals with special training in social work, psychology, psychiatry, or pastoral counseling. Services might be conceptualized 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 moving in the presence of more serious problems to the highest level of specifically trained mental health professionals such as psychiatrists, psychologists, 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 FIGURE 4-3 The trajectory of breast cancer care. SOURCE: Bicknell, IOM Workshop, October 2002.
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Meeting Psychosocial Needs of Women with Breast Cancer cancer survivors. The IOM Childhood Cancer Survivorship report (Hewitt et al., 2003) and the forthcoming 2004 IOM Adult Cancer Survivorship 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 services to women with breast cancer. Chapter 6 discusses the delivery of psychosocial services and points out strengths and weaknesses of various providers 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 education 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 nation’s health care workforce and has a significant role on the “front lines” 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 employed 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 percent 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 surgeons’ offices, most oncologists’ offices, and all breast cancer clinics have an oncology nurse, so that for women in these settings, the oncology 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 receive some exposure to cancer care through coursework related to surgical and medical care of chronic diseases. Nurses may receive general instruction 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-oncology. 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
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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 patients’ 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 nursing graduate programs, only 26 offer a special oncology focus (Ferrell, workshop presentation, October 2002; Brown and Hinds, 1998). Of these 26 programs, only 18 percent were found in 2000 to cover rehabilitation services, 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 (OCN®) nurses, 803 basic level credential pediatric oncology (CPON®) nurses, and 1,410 as advanced oncology credential (AOCN®) nurses (Cynthia Miller Murphy, Oncology 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 practice nurses provide models for clinical practice, education, and advocacy. Currently, there are 29,802 members of the Oncology Nursing Society (Cynthia Miller Murphy, Oncology Nursing Certification Corporation, 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 psychology) have made an important contribution to psychosocial oncology clinical research. Several nursing schools have graduate training in psychosocial 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
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Meeting Psychosocial Needs of Women with Breast Cancer BOX 4-2 Oncology Social Work: Scope of Practice 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 address gaps in service; advance knowledge through research. Within Cancer Centers/Institutions: provide education and consultation 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. 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 provide community education and develop programs. 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 Society (ACS) offers the following career development grants for social workers (www.cancer.org): Master’s Training Grants in Clinical Oncology Social Work: Awarded to institutions to support training of second-year master’s 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). 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).
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Meeting Psychosocial Needs of Women with Breast Cancer 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 opportunities 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 management of psychosocial concerns in patients with cancer and their families. They also represent the discipline that contributes predominantly to psychooncology 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 Psychological Association, the professional association that represents psychologists, 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 members who do research in psycho-oncology. Graduate students in these programs can elect dissertations dealing with oncology issues. Financial support for pre-doctoral students during their dissertation research has encouraged young investigators to enter the field. (J. Ostroff, personal communication to Jimmie Holland, March 2003). Psychology internships are not available in the specialized area of oncology. 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 Master’s level counselors who are trained in general counseling and who work primarily in family service agencies and corporate Employment Assistance Programs (EAP). A demonstration project, sponsored by Bristol-Myers Squibb Foundation, is under way to train 150 counselors in a “face-to-face” and distance learning program in psychoso-
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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 communication to Maria Hewitt, March 2003). Psychiatry Psychiatrists with an interest in diagnosis and treatment of comorbid psychological problems and psychiatric disorders are known as consultation-liaison psychiatrists. The American Psychiatric Association, The American Board of Neurology and Psychiatry, and The American Board of Medical 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 drug–drug 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 rotate 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 Behavioral 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
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Meeting Psychosocial Needs of Women with Breast Cancer into focus. For many patients, confronting issues of life and death constitutes a spiritual or existential crisis. As illness advances, the search for meaning by patients leads many to seek religious or spiritual counselors to assist them in coping. Chaplains, clergy, and pastoral counselors may be preferred to secular counselors. The NCCN Clinical Practice Guidelines for Management of Distress, written by a multidisciplinary panel, included pastoral 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 experience with hospitalized or ambulatory patients. Certification of these programs 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 assessment 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 distress. 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 psychological/psychosexual and practical issues arising from these difficulties. Sexuality 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-
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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 oncology social worker, a psychiatric social worker, a psychiatric nurse clinician, psychologist, psychiatrist, pastoral counselor, or veteran patients who become 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/information in the field. The American Psychosocial Oncology Society (APOS) (www.apos-society.org) is developing a core psychosocial oncology curriculum 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 covered are: Core Courses, Symptom Management, Site-Specific Issues, Psychosocial Interventions, Population-Specific Issues, Research, Medical Ethics. 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, International Psycho-Oncology Society, Academy of Psychosomatic Medicine, Society of Behavioral Medicine, American Psychological Association, 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 become a nationally recognized organization that advocates for improvement of psychosocial care for these patients and their families. The consumer advocacy groups (NABCO, NCCS) also voice the importance of these services to their members. Survivors of breast cancer have played a
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Meeting Psychosocial Needs of Women with Breast Cancer BOX 4-3 Objectives of Psycho-Oncology Training 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 psychiatric problems. Appropriately apply a range of psychiatric/psychosocial interventions for cancer patients’ psychotherapy including individual, family, group, supportive, crisis intervention, sexual, bereavement, cognitive-behavioral, psychopharmacology. Work effectively in a liaison role, provide support to oncology staff so as to better facilitate understanding of patient and family centered issues. Communicate psycho-oncology information to others, oral and written dissemination of clinically based or research-oriented practices/findings, teach medical students, psychiatric interns, residents. Be able to critically evaluate and understand and/or conduct research in psycho-oncology. Learn organizational and administrative skills needed to administer a psycho-oncology program. SOURCE: Passik et al., 1998. BOX 4-4 Curriculum for Advanced Training in Psycho-Oncology MEDICAL FACTORS AND THEIR PSYCHOLOGICAL CORRELATES Basic concepts in cancer and its treatments Cancer development Cancer risk factors Diagnostic procedures Treatment modalities Central nervous system complications of cancer Cancer pain and its management Psychological effects of cancer and its treatment Stage-specific issues Treatment-specific issues Site-specific issues
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Meeting Psychosocial Needs of Women with Breast Cancer PSYCHOSOCIAL ASPECTS OF CANCER Social factors and adaptation to cancer Psychological factors Coping with a life-threatening illness Social support Family adaptation to cancer Childhood cancer The older patient with cancer Sexual dysfunctions in cancer patients The oncology staff COMMON PSYCHIATRIC DISORDERS AND THEIR MANAGEMENT Normal reactions and psychiatric disorders in cancer patients Depression Suicide Anxiety, panic attacks and phobias Personality disorders Somatoform disorders Schizophrenia Pharmacological management of psychiatric disorders in cancer patients Psychiatric emergencies ETHICAL ISSUES IN CANCER CARE Informed consent Do Not Resuscitate (DNR) Orders CULTURAL ASPECTS OF CANCER CARE Varied attitudes towards illness and treatments Death and dying Mourning rituals and bereavement Suicide Support systems Choice of therapy and treatment compliance RESEARCH 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 occurs among individuals with cancer. Some of the more common ones in-
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Meeting Psychosocial Needs of Women with Breast Cancer clude social and emotional support, psychoeducational approaches, cognitive–behavioral interventions, psychotherapy, crisis counseling, and complementary approaches. Providers of these psychosocial services may include clinicians involved in medical care, such as physicians and nurses, and professionals 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 relatively few post graduate or continuing educational opportunities in this area. Given the effectiveness of psychosocial interventions in alleviating psychosocial 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 education programs by designing, recommending, or funding them at a level that recognizes their importance in psycho-oncology for oncologists, those in training programs, and nurses and for further development of programs similar to the ASCO program to improve clinicians’ 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 programs 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 providing cancer care and currently have very limited oncology training. As a first step, the Board recommends integrating psychosocial content into basic nursing education (baccalaureate and associate degree) programs. Investments 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 issues 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 OCN® and AOCN® 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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