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Clinical Practice Guidelines for the Management of Psychosocial and Physical Symptoms of Cancer

Jimmie C.Holland, M.D.

Lisa Chertkov, M.D.

Memorial Sloan-Kettering Cancer Center

We are not ourselves when nature, being oppressed, commands the mind to suffer with the body.

King Lear, Act II Sc. IV, Li. 116–119

INTRODUCTION

After years of neglect, care at the end of life is receiving increasing attention and concern. We are beginning to recognize that when death is near, the body is suffering the effects of a progressive and mortal illness and that the person is coping not only with the bodily symptoms, but also with the existential crisis of the end of life and approaching death. As the body suffers, the mind is indeed “commanded…to suffer with the body,” as Shakespeare so well described. Thus, the suffering encompasses both the mind and the body. The imperative of providing optimal symptom relief and alleviation of suffering is the highest priority in care. However, evidence suggests that we are failing to do this (American Society of Clinical Oncology, 1998; Carver and Foley 2000; Cassel and Foley, 1999; Cassem 1997). Although pain management guidelines have been the most widely disseminated, we know that many patients continue to suffer not only from pain, but from other troubling symptoms in their final days (Ahmedzai, 1998; American Academy of Neurology, 1996; American Board of Internal Medicine, 1996; American Nursing Association, 1991; American Pain Society, 1995; Carr et al, 1994). Despite clear advances in the identification and



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Improving Palliative Care for Cancer 7 Clinical Practice Guidelines for the Management of Psychosocial and Physical Symptoms of Cancer Jimmie C.Holland, M.D. Lisa Chertkov, M.D. Memorial Sloan-Kettering Cancer Center We are not ourselves when nature, being oppressed, commands the mind to suffer with the body. King Lear, Act II Sc. IV, Li. 116–119 INTRODUCTION After years of neglect, care at the end of life is receiving increasing attention and concern. We are beginning to recognize that when death is near, the body is suffering the effects of a progressive and mortal illness and that the person is coping not only with the bodily symptoms, but also with the existential crisis of the end of life and approaching death. As the body suffers, the mind is indeed “commanded…to suffer with the body,” as Shakespeare so well described. Thus, the suffering encompasses both the mind and the body. The imperative of providing optimal symptom relief and alleviation of suffering is the highest priority in care. However, evidence suggests that we are failing to do this (American Society of Clinical Oncology, 1998; Carver and Foley 2000; Cassel and Foley, 1999; Cassem 1997). Although pain management guidelines have been the most widely disseminated, we know that many patients continue to suffer not only from pain, but from other troubling symptoms in their final days (Ahmedzai, 1998; American Academy of Neurology, 1996; American Board of Internal Medicine, 1996; American Nursing Association, 1991; American Pain Society, 1995; Carr et al, 1994). Despite clear advances in the identification and

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Improving Palliative Care for Cancer treatment of psychiatric disorders, we continue to underdiagnose and undertreat the debilitating symptoms of depression, anxiety and delirium in the final stages of life (Breitbart et al., 2000; Carroll et al., 1993; Chochinov and Breitbart, 2000; Hirschfeld et al., 1997; Holland, 1997, 1998, 1999). Also, beyond these physical and psychological symptoms, we fall even shorter of our goals of alleviating the spiritual, psychosocial, and existential suffering of the dying patient and family (Cherny et al., 1994, 1996; Fitchett and Handzo, 1998; Karasu, 2000). Yet the ethical and professional challenge to do so is as important as the obligation to cure (Pellegrino, 2000). In seeking to provide better care for patients at the end of life, the most effective approach appears to be the use of clinical practice guidelines that establish a benchmark of quality based on the delivery of evidence-based medicine (Chassin, 1998; Field and Lohr, 1990, 1992; Field and Cassel, 1997). This chapter outlines the current status of clinical practice guidelines to guide management of psychiatric, psychosocial, and spiritual distress in the context of managing the physical symptoms at the end of life. The focus is on the management of distress and the interaction of physical symptoms and distress. Clinical Practice Guidelines in Cancer Care Public and private agencies in the United States have increasingly focused on the quality of health care being delivered (Emanuel, 1996; Ford et al., 1987; IOM, 1999; Patton and Katterhagen, 1997; Stephenson, 1997). This has been particularly useful in cancer because it has encouraged the scrutiny of care delivered across the disease continuum and the establishment of practice guidelines (Morris, 1996). Clinical practice guidelines are defined as “systematically developed statements to assist both practitioner and patient decisions about appropriate health care for specific clinical circumstances” (Field and Lohr, 1990, 1992). Guidelines are based on evidence derived from research or clinical trials, or from a consensus of experts when objective evidence is not available. There are two types of guidelines in use. The algorithm or path guideline, the most widely used, directs decisionmaking toward a set standard. The other type is the boundary guideline that defines the appropriate use of a new technology or intervention (often as a cost-saving device). The National Cancer Policy Board (NCPB) noted in Ensuring Quality Cancer Care that the use of systematically developed clinical practice guidelines, based on best available evidence, improved the quality of care delivered (IOM, 1999). Smith and Hillner (1998) reviewed the status of clinical practice guidelines, critical pathways, and care maps and found that care improved with the use of explicit guidelines in 55 of 59 published studies and in 9 of 11 studies that assessed defined outcomes.

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Improving Palliative Care for Cancer However, a guideline has no impact on health care unless providers endorse and use it. Directly involving physicians in the development of guidelines, holding them accountable through peer pressure, monitoring their compliance, and providing feedback about performance and potential positive effects on outcome are critical to their being used (Katterhagen, 1996). An important corollary, endorsed by the National Comprehensive Cancer Network (NCCN), which has developed guidelines for all cancer sites and many symptoms, is the importance of regular review to update and revise guidelines to reflect new information that impacts on practice. Since much depends on the human element of physician “buy-in,” ways to ensure cooperation, dissemination, implementation at the clinical level, and accountability for applying them will continue as important research questions (Grimshaw and Russell, 1993). Ensuring full application of practice guidelines poses special challenges when applied to end-of-life care. Comfort care is affected by a range of cultural factors: the customs and ethnicity of the patients and their families; community norms and expectations; religious and philosophical belief systems. Physicians’ personal attitudes and beliefs about death also affect their interest and participation in end-of-life care. Development and evaluation of clinical practice guidelines for end-of-life care must take into account the unique aspects of treatment during this period. The task becomes daunting, given the recognized problems with implementation of clinical practice guidelines for pain management and the complexity of developing guidelines that direct both medical and psychological care. The majority of existing clinical practice guidelines in cancer are directed toward the management of specific cancer types and stages of disease. Most have been developed through the American Society of Clinical Oncology (ASCO), NCCN (McGivney, 1998), the American College of Surgeons (ACoS), and the Agency for Health Care Research and Quality (AHRQ, formerly the Agency for Health Care Policy and Research) (Table 7-1; Smith and Hillner, 1998). AHRQ also has developed an Internet-based clearinghouse for all practice guidelines meeting certain criteria. CLINICAL PRACTICE GUIDELINES FOR END-OF-LIFE CARE The World Health Organization (WHO, 1996, 1998) defined end-of-life care as “the active, total care of patients whose disease is not responsive to curative treatment.” The focus at this point is to attain maximal quality of life through control of physical and psychological, social, and spiritual distress of the patient and family. Hospice philosophy has long supported this integrated approach, as well as giving attention to the caregiver. The wide range of these issues makes the task of developing clinical practice guidelines more formidable but, at the same time, more critical. The 1997

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Improving Palliative Care for Cancer TABLE 7-1 Selected, Publicly Available Oncology Guidelines, by Sponsoring Group Group Guidelines Comment National Comprehensive Cancer Network Path or algorithm guidelines for all common cancers Evidence based, with consensus; when no consensus possible, options listed Intended for mandatory use for all participating cancer centers No date set for implementation No set benchmarks for care Adopted in the community for use outside of NCCN cancer centers No data yet on compliance or outcomes American Society of Clinical Oncology Boundary guidelines for new technologies Hematopoietic growth factors Outcomes important enough to justify treatment Antiemetics Surveillance of breast and colorectal cancer patients Path or algorithm guidelines for specific diseases Management of non-small cell lung cancer Metastatic prostate cancer Evidence based, with consensus demanded before approval Adopted by the community but no data available on compliance or outcomes Likely that all future guidelines will be boundary guidelines for new technologies, with overlap of ASCO and NCCN methods and topics Society for Surgical Oncology Path guidelines for management of common surgical problems Consensus panels American Urology Association Path guidelines for common urology problems Consensus based on evidence University of California (UC) Cancer Care Consortium (UC and PONA, Inc.) Path guidelines for most solid tumors PONA did systematic reviews, consulted with UC faculty for consensus   SOURCE: Smith and Hillner, 1998.

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Improving Palliative Care for Cancer Institute of Medicine (IOM) report Approaching Death stated that ensuring quality of care requires that recommendations be made by experienced professionals; that clear goals of care are established; that patients have access to clinical trials, if desired; that a patient receives the available services in a coordinated manner; that the patient is told and understands the treatment options; that there is available an appropriate range of psychosocial services; that the care be given in a compassionate way; and that the care integrates the physical and psychosocial elements. The need for guidelines has also been acknowledged by policy analysts, health care professionals, patients, families and third-party payers, and work is progressing toward developing them (see Table 7-2). The ASCO Task Force on Cancer Care at the End of Life set out a basic principle for end-of-life care of “optimizing quality of life…with attention to the myriad physical, spiritual and psychosocial needs of the patient and family” (ASCO, 1998). An NCCN panel has begun adapting general guidelines for nausea and vomiting and for pain control for end-of-life care (Dr. Michael Levy, personal communication). Several large institutions, including Memorial Sloan-Kettering Cancer Center, have developed guidelines for end-of-life care. Development of algorithm-based clinical practice guidelines relating to psychiatric, psychosocial, and spiritual domains has the potential to enhance end-of-life care in a major way by defining a gold standard for clinicians in an area not previously subjected to this level of scrutiny. This chapter outlines the status of clinical practice guidelines that relate to end-of-life care and suggests next steps for policy development. The areas reviewed in this chapter are: communication with patient and family; management of distress (psychiatric, psychological, social, existential, spiritual) in the patient and family; and management of several physical symptoms that are common at the end of life: pain, fatigue, nausea and vomiting, dyspnea. A key concept for end-of-life care guidelines is the recognition that the physical and the psychosocial, existential, and spiritual concerns are interrelated and overlapping, so it is critical that the patient experience appropriate attention to both (Twycross and Lichter, 1998; Wanzer et al., 1989). Communication with Patient and Family Central to ensuring quality of all care at the end of life is communication between the doctor, patient, and family (Girgis and Sanson-Fisher, 1995; Ptacek and Eberhardt, 1996). Identification and management of symptoms—physical and psychological—hinge upon this interaction. Buck-

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Improving Palliative Care for Cancer TABLE 7-2 Clinical Practice Guidelines for End-of-Life Care: Status, Source and Further Development Needed Symptom Status Source Further Development Overall end-of-life care NCCN Practice Guidelines (pending) (NCCN, 2001) Evidence, consensus, or combination Pilot testing; modify for end-of-life care Doctor-patient communication NCCN Practice Guidelines: breaking bad news (pending) (NCCN, 2001) Evidence, consensus, or combination Pilot testing; modify for end-of-life care Distress NCCN Practice Guidelines: ambulatory care Definition—Psychosocial, existential or spiritual (NCCN, 1999)   Algorithm for recognition and referral; modify for end-of-life care Delirium APA Practice Guidelines: physically healthy (APA, 2000) NCCN Practice Guidelines: ambulatory care (NCCN, 1999) Evidence, consensus, or combination Evidence, consensus, or combination Modify for medically ill and end-of-life care Modify for end-of life care; pilot test Depressive disorders APA Practice Guidelines: physically healthy (APA, 2000) NCCN Practice Guidelines: ambulatory care (NCCN, 1999) Evidence, consensus, or combination Evidence, consensus, or combination Modify for end-of-life care Modify for end-of-life care; pilot test Anxiety disorders APA Practice Guidelines: panic disorder in healthy patients (APA, 2000) NCCN Practice Guidelines: ambulatory care (NCCN, 1999) Evidence, consensus, or combination Evidence, consensus, or combination Modify for medically ill/end-of-life care Modify for end-of-life care; pilot test Personality disorders APA Practice Guidelines (APA, 2000) NCCN Practice Guidelines: ambulatory care (NCCN, 1999) Evidence, consensus, or combination Evidence, consensus, or combination Modify for medically ill and end-of-life care Modify for end-of-life care; pilot test

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Improving Palliative Care for Cancer Symptom Status Source Further Development Social problems: practical or psychosocial NCCN Guidelines for Social Work Services: Ambulatory (NCCN, 1999) Evidence, consensus, or combination Modify for end-of-life care; pilot test Spiritual or religious problems NCCN Guidelines for Clergy/Pastoral Counselors: ambulatory (NCCN, 1999) Evidence, consensus, or combination Modify for end-of-life care; pilot test Pain AHCPR Guidelines (AHCPR, 1994) APS Guidelines (APS, 1995) WHO Pain Management (WHO, 1996) NCCN Guidelines (NCCN, 1999) Evidence, consensus, or combination Evidence, consensus, or combination Evidence, consensus, or combination Evidence, consensus, or combination Modify for end-of-life care Dissemination and implementation Compliance and implementation Modify for end-of-life care; pilot test; dissemination and compliance Fatigue NCCN Practice Guidelines: guidelines for anemia-related fatigue management (NCCN, 1999) Evidence, consensus, or combination Modify for end-of-life care; pilot test Nausea and vomiting NCCN anti-emesis (for treatment-related nausea and vomiting) (NCCN, 1997) Evidence, consensus, or combination Modify for end-of-life care; pilot test Dyspnea Descriptive guides to care (Ahmedzai, 1998) Literature Develop guidelines; pilot test NOTE: APA=American Psychiatric Association; APS=American Pain Society; AHCPR= Agency for Health Care Policy and Research; NCCN=National Comprehensive Cancer Network

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Improving Palliative Care for Cancer man (1998), an oncologist who teaches communication skills, noted, “Almost invariably, the act of communication is an important part of therapy: occasionally it is the only constituent. It usually requires greater thought and planning than a drug prescription, and unfortunately it is commonly administered in subtherapeutic doses.” Within the area of communication, teaching how to break bad news has been given the most attention, since it is a common task facing oncologists. An NCCN panel has developed algorithm-based guidelines for delivering bad news, which are being revised for application to end-of-life care (Dr. William Breitbart, personal communication). A review of the literature from 1975 to 1999 (Holland and Almanza, 1999) revealed that of the 166 articles published on this topic, the majority were written in the past five years, reflecting the recent, increased concern about this issue. However, only 14 percent of the studies were based on controlled trials; most papers were based on consensus or clinical experience. Baile and colleagues (1999) proposed guidelines for discussing disease progression and end-of-life care. Several tenets of importance emerge: finding out what the patient understands; learning how much more or less information does she or he want to know; being sensitive to and empathic with whatever emotions the patient expresses; listening attentively and allowing tears and emotions to be expressed without signs of being rushed; and taking into account the family and its ethnic, cultural and religious roots. All may contribute to decisions about care (Braun et al., 2000; Hastings Center, 1987). These tenets should include attention to the needs of traditionally medically underserved patients: those with little or no English proficiency, for whom care at the end of life is particularly difficult because communication is limited, and patients with chronic mental illness or limited education. The need for communication guidelines and standards is accentuated because of the awkwardness that many professionals feel in talking with patients about death, as well as the difficulty patients themselves have in expressing their fears and uncertainties about their possible death. Family members face similar challenges in expressing their feelings and asking questions about prognosis. A series of 19 focus groups held in eight cancer centers comprised either doctors alone, nurses alone, or patients alone. The doctors felt they had more trouble communicating with families than with the patients themselves (Speice et al., 2000). Patients noted that their relatives often felt “left out” and “in the way.” These issues are particularly disturbing since impending death has a profound impact on the family who shares the death vigil with the doctor. Family members often recall in exquisite detail the sensitivity (or lack of it) of the doctor and staff as their relative was dying. These memories affect the grieving process, recalling as they do the details of how the family was told by the doctor about what was being done, how it was informed of changes in the medical

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Improving Palliative Care for Cancer situation, and especially how attentive the doctor and the staff were in controlling the patient’s distress and physical symptoms (Chochinov et al., 1998; Zisook, 2000). Communication with Patient and Family: Next Steps Training of doctors in communication skills is critical to ensure quality end-of-life care. The best teaching model is one that uses faculty from the physician’s own discipline (e.g., oncologists for oncologists) as well as a physician or mental health clinician skilled in teaching communication. Such workshops have proven to have a low priority for voluntary attendance; mandating participation via required risk management lectures is useful. The content of the skills teaching sessions is best acquired when the groups are small in number, when they use videotapes of model patterns of communication, and when they include role playing, which enhances sensitivity to patients’ emotional responses and also to the doctor’s own responses. Research is needed to determine the best teaching methods. Approaches based on a theoretical model of stress are effective, such as the Transpersonal Model of Stress, which examines physicians’ and patients’ responses at each phase of the discussion (Ptacek and Eberhardt, 1996). Improving communication with family is recommended, especially in view of the role families now play in physical care at the end of life and the intense psychological impact of this time in their lives and for years to come. We have to explore ways to educate the family in how to manage pain, distress, and other symptoms in the patient and how to communicate with the doctor about their concerns. Management of Distress in End-of-life Care A diagnosis of incurable cancer carries with it a necessity for patient and family to look at the meaning they attach to life and death. For many in America, this may be the first unavoidable confrontation with death because, as a society, we prefer to avoid thoughts of death—the last taboo topic. A 1991 Gallup poll found that most people in the United States reported that they never, or almost never, thought about death (Gallup and Newport, 1991). Callahan (1993) observed that much of the public excitement, debate, and furor about physician-assisted suicide and euthanasia is really an attempt to “control death” and thereby avoid facing the actual meaning of death in personal terms. Given this cultural environment in which the meaning of death is denied and the fact that, in recent decades, oncology research has focused primarily on finding cures as opposed to improving palliative care, it is no

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Improving Palliative Care for Cancer surprise that the “human” side of end-of-life care, dealing with the emotional distress of being forced to consider the meaning of death, has received less attention. To meet patients’ needs for psychological, social, and existential-religious-spiritual concerns, the primary treatment team should include (or have available to it) a psychosocial team that consists of a social worker, a mental health professional, and a pastoral counselor. Currently, the social worker often performs as the entire psychosocial team, but although long distanced from the treatment team, pastoral counselors must come to be viewed as integral members. Mental health professionals can play an important role in helping dying patients deal with their distress. However, negative attitudes and stigma related to mental health, especially psychiatry, often limit the availability of these services. Medical staff are reluctant to ask for a psychiatric consultation, even when it is highly appropriate, out of concern that a patient may be offended by the request to see a mental health professional. Sometimes, the family sees it as an affront to the patient at a time of grave illness. These barriers, similar to those in pain management, are compounded by other fears. Patients and families often fear psychotropic medication. They worry that the drugs used will be addictive and “make me a zombie.” Their attitudes are expressed by comments such as “I have to be strong” and “what can be done to change things?” Another barrier is perceived cost. Many institutions regard this human aspect of care as expendable, expensive, and unnecessary. As a consequence, too few social workers, mental health professionals, and pastoral counselors are available to provide the consultation and treatment that would benefit patients and their families when the severity of distress exceeds that readily managed by the primary team. This is especially true of bereavement services, as social workers are reduced as a cost-saving measure. A major problem in palliative care is the underrecognition, underdiagnosis, and thus undertreatment of patients with significant distress, ranging from existential anguish to anxiety and depression. This situation continues to exist despite the fact that when dying patients themselves were asked their primary concerns about their care, three of their five concerns were psychosocial: (1) no prolongation of dying; (2) maintaining a sense of control; and (3) relieving burdens (conflicts) and strengthening ties (Singer et al., 1999). Even though patients and families express clearly their wishes for attention to their nonmedical concerns and for the inclusion of this domain as a core element in palliative care, there remains significant evidence that inadequate attention is given to these issues, in spite of lip service and good intentions. The evidence is as follows:

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Improving Palliative Care for Cancer There are no standards of care for psychological, social, and existential and spiritual care at the end of life. No training standards exist to formally prepare physicians to identify patients with distress, nor are there standards of competence for those who provide psychosocial and spiritual services at the end of life. Mental health professionals (psychiatrists, psychologists, psychiatric social workers, and nurses) and pastoral counselors are not included in the end-of-life care team. There is, as yet, no accountability for the performance of physicians, staff, and institutions in relation to the psychosocial and spiritual care given at the end of life by any regulatory body. Reimbursement of professional services for psychosocial care is poor to absent (often excluded from medical and behavioral health contracts). Clinical practice guidelines and standards for the management of distress in end-of-life care must incorporate the psychological, social, existential, spiritual, and religious issues faced by patients—the “human” aspects of care. However, the distress relates to coping with the increasing physical symptoms that, by their own nature, become a major source of distress. Patients and families often say that their greatest fear is having pain that cannot be controlled. Cherny and colleagues (1996) used the word “suffering” to encompass these same issues. They included physical symptoms based on the commonly used term “pain and suffering.” The word “distress” is chosen because it is less stigmatizing and incorporates “normal emotions” such as worry, fear, and sadness. However, distress can increase along a continuum to become a full-blown psychiatric disorder such as a major depression or generalized anxiety. Sadness of separation and anticipatory grief may increase to severe distress in the family. The normal search for meaning may increase to become an existential crisis with spiritual or religious meanings and require the advice of a pastoral counselor (Rousseau, 2000). This concept has been the basis for the NCCN guidelines and standards for the management of distress (Holland, 1999). The NCCN practice guidelines (Table 7-2; Figure 7-1) give an algorithm for rapid identification of patients with significant distress leading to referral to appropriate services when significant distress is found. They also provide the first practice guidelines for mental health, social work, and pastoral counselors. Distress is a word that also describes the emotions that reflect an inability to cope with the threat to life and the search for ways to give it tolerable meaning. The model of Folkman (Figure 7-2) is useful because it provides a cognitive model of the universal process by which we cope with an overwhelming situation and the distress that it causes (Folkman, 1997). The

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Improving Palliative Care for Cancer Professional organizations representing psychology, psychiatry, oncology social work, oncology nursing, and chaplaincy must become familiar with and endorse the clinical practice guidelines modified from existing ones for end-of-life care, to ensure dissemination and education among these disciplines. Any patients’ bill of rights must include the right to management of their distress as a symptom of equal concern as a physical symptom that receives prompt and competent care; they must be educated to ask for these services. Accountability: the appropriate regulatory bodies must include performance standards for professionals in relation to their communication and sensitivity to care of the nonphysical symptoms (psychosocial and spiritual) of patients at the end of life. Research should be pursued to test the feasibility and implementation of practice guidelines for management of distress developed for each discipline (mental health, social work, pastoral counseling) giving supportive services. In view of the acknowledged difficulties in implementation of clinical practice guidelines to manage distress and the unique stigma around psychosocial and spiritual services, it is essential that research be undertaken to address these barriers. Delirium, depression, and anxiety are extremely common at the end of life and are frequently underrecognized, underdiagnosed, and undertreated, leading to unnecessary distress for patients and families. Research into recognition and treatment of these symptoms through controlled trials is important to improve care at the end of life. Clinicians are equally responsible for the recognition and treatment of distress in patients’ families who bear an increasingly heavy burden of caregiving with its own psychological and physical toll; guidelines for inquiring about distress and educating families must be a part of the research agenda in end-of-life care. Management of Physical Symptoms Table 7-2 outlines the status of clinical practice guidelines for management of pain, fatigue, nausea and vomiting, and dyspnea. The focus here is on the emotional distress caused by these symptoms—the physical suffering that we associate with the dying process (Twycross and Lichter, 1998). Patients and families struggle with the concern that these symptoms will not be adequately controlled, with fears about their cause and the potential for their becoming intolerable, and with sadness and anger about diminishing physical function. Thus, the common symptoms of pain, fatigue, nausea, and dyspnea are often the catalyst for severe distress or “suffering of the mind.” They lead to severe distress requiring both traditional medical inter-

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Improving Palliative Care for Cancer ventions and care targeting the spiritual, existential, psychiatric, and psychosocial distress they precipitate. Negotiating management of physical symptoms at the end of life is often complex: the first issue is dealing with the meaning of the transition from curative to palliative care. This requires sensitive communication by the physician with opportunity for participation of supportive disciplines that can more fully address the concerns of patients and families. In addition, medical management for the dying patient is complicated by the interaction of the symptoms of disease and the fact that treatments may produce relief or introduce new problems; for example, analgesics cause troubling constipation. Patient education is an essential component of care to ensure a collaborative approach to symptom management. Clinical practice guidelines usually consider a single symptom in isolation; thus, a guideline addressing a single symptom may apply less well because it fails to take into account many coexisting symptoms. Care of the dying requires creative problem solving, as well as the development of clinical guidelines to address this level of complexity. Palliative treatment should be just as aggressively approached as curative treatment. Many patients’ greatest fear is of abandonment, of hearing the echoing words of a physician telling them that there is nothing more that can be done. In fact, treatment of the dying patient continues to the moment of death and beyond, by interventions to assist family members with their grief. One imperative is improved doctor-patient-family communication about symptoms and more collaborative efforts at symptom management. Uncertainty about the cause of symptoms or what they may signify, fear of future symptoms and worry that symptom control will be inadequate contribute substantially to patients’ and families’ distress. Many fear unbearable and poorly treated pain and respiratory distress in the final days and hours. Clinicians could be helpful by describing the dying process to patients and families in terms of reassurances about comfort and relief of symptoms. Loved ones usually view Cheyne-Stokes respirations as indicators of substantial discomfort and pain or fear that a gurgling sound indicates the patient is drowning, despite the fact that most patients are no longer conscious in this final stage of dying. Adequate preparation of patient and family about the dying process and anticipated symptoms is essential and must begin with showing a willingness to discuss these matters and address fears and concerns. Treatment of distress caused by fear of potentially uncontrolled physical symptoms will significantly improve quality of life. The public issue that has arisen regarding requests for physician-assisted suicide is prompted considerably by the widespread fear of overwhelming pain and its inadequate control in the care of dying patients (Chochinov and Breitbart, 2000; Sachs et al., 1995). In addition, psychological, social, and existential or spiritual distress

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Improving Palliative Care for Cancer may increase the intensity of physical symptoms. For example, depression and anxiety may increase the experience of pain, and anxiety can increase dyspnea. Conversely, pain and dyspnea increase anxiety and depression. Prevalence of symptoms at the end of life that cause substantial distress has been identified by the Memorial Symptom Assessment Scale (Portenoy, 2000). Pain, fatigue, nausea and vomiting, and dyspnea are among the most frequently occurring symptoms that reduce quality of life. Others are cachexia, bladder and bowel dysfunction, sleep disturbance, pruritis, constipation, diarrhea, and pressure ulcers (Mercandante, 1994, 1997; Ripamonti, 1994). Anorexia is exceedingly common and emotionally laden, causing patients and families great distress because of the fear that not eating is the cause of cachexia. Patients in the final days of life have diminished hunger and thirst, and oral, parenteral, and enteral force feeding may actually increase suffering (McCann et al., 1994). Development of clinical guidelines for each of these symptoms in end-of-life care is important. Practice guidelines are being developed for anorexia (D.Cella, personal communication). Symptom management in special populations is a particular problem. In patients with dementia, chronic mental illness, delirium, or deficits in ability to communicate, assessment of the sources of discomfort and the adequacy of palliative interventions is especially problematic. In these cases, clinical experience with comparable situations often must guide palliative care; for example, dosing pain medications based on average needs and then assessing nonverbal cues are recommended. Given the high incidence of terminal delirium and the frequent progressive impairment of cognitive functioning in the final stages of life, palliative care guidelines must address the needs of those patients who cannot speak for themselves to express troubling symptoms. Pain Achieving effective pain management has been a priority over the past decade. The American Pain Society (APS), AHRQ, the World Health Organization (WHO), and the NCCN guidelines provide algorithms for decisionmaking in pain management (AHCPR, 1993; APS, 1995; McGivney, 1998; WHO, 1998) (see Table 7-2). Problems remain in implementation; many patients cope with needless suffering. Pain is one of the most prevalent symptoms across terminal illnesses, affecting more than a third of patients. It is also the source of great fear as many patients anticipate final days of agony. Beyond the devastating experience of the symptom itself, pain impairs psychosocial functioning, causes enormous psychological distress (anxiety and depression), and limits patients’ capacity for enjoyment and finding meaning in their final days. Studies show pain control remains a

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Improving Palliative Care for Cancer challenge for research, with modification of existing guidelines for end-of-life care and accountability to regulatory bodies to ensure compliance. APS, NCCN, and AHRQ guidelines clearly delineate the principles of effective pain management, providing algorithms for the management of nociceptive and neuropathic pain of varying severity and chronicity (Rischer and Childress, 1996) (see Table 7-2). Identification of the cause and type of pain, use of repeated standardized assessment tools to assess pain severity and response to treatment, evaluation of the effect of pain interventions on mental alertness, and flexibility in revising treatment regimens are the mainstays of effective care. The use of around-the-clock fixed dosing with patient or caregiver “rescues” provides a means of avoiding withdrawal symptoms and preventing delays in dosing and resulting pain crises (Bottomly and Hanks, 1990). Clinician education about appropriate dosing and medication combinations facilitates better care as well as treatment of depression and anxiety. Use of psychotropic drugs as adjuncts to pain medications and behavioral interventions are effective. Continuing misconceptions about dependence and addiction, the risks of oversedation, and regulatory problems of opiates have contributed to inadequate implementation of clinical guidelines. In addition, there is a need to educate doctors about the use of opiates and other medications whose use is restricted by Drug Enforcement Agency (DEA) guidelines, in order to resolve the problems of inadequate dosing and reluctance to prescribe. Identifying the barriers that have delayed implementation of effective pain management is a continuing research question. Fatigue Fatigue is a major end-of-life symptom described as tiredness, heaviness, weakness, lack of energy, poor stamina, sleepiness, and poor strength. In the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), 80 percent of patients complained of fatigue in the final three days of life (Phillips et al., 2000). Whether a result of the primary disease process, metabolic abnormalities due to organ failure, treatment side effects, or malnutrition, fatigue limits functional capacity and quality of life. Treatment guidelines have been developed for the management of anemia-related fatigue, but none have addressed fatigue at the end of life. The fatigue related to depression also must be considered in seeking an etiology and choosing an intervention. Despite all efforts, fatigue is often an intractable symptom in the final days of life. Clinical practice guidelines for this important symptom must build on recent studies documenting the high incidence of fatigue in chronic and terminal illness and its impact on quality of life. Research in the use of stimulants and other new alternatives may offer the potential for future

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Improving Palliative Care for Cancer advances (Chochinov and Breitbart, 2000). The complex interplay of psychological and physical complaints is especially significant in the evaluation and treatment of fatigue. Nausea and Vomiting Clinical practice guidelines for management of nausea and vomiting have been widely promulgated in the care of cancer patients as advances in antiemetic therapy have vastly reduced the distress associated with chemotherapy. Nausea may be centrally mediated or caused by local factors such as decreased motility, medication effects, or gastrointestinal lesions (Reuben and Mor, 1986). Vomiting may contribute to dehydration, metabolic disarray, and aspiration. Obstruction and gastrointestinal bleeding are particularly difficult to manage and may be the source of great physical and emotional distress. There are practice guidelines for intractable vomiting, including surgery, PEG drainage, restricted oral intake, and symptomatic medications. Patients have described nausea as a particularly demoralizing symptom, affecting self-concept and self-esteem as well as psychosocial functioning. Inability to eat excludes patients from one of the primary sources of social interaction, occurring at meals. Nausea, vomiting, and anorexia are substantial sources of distress for patients and families, often leading to anxiety and depression. Development of clinical practice guidelines for nausea and vomiting, central in end-of-life care, requires piloting antiemetic regimens that have been successful in the management of chemotherapy-related side effects. Modification to the special needs of patients in the end of life is the next step (see Table 7-2). Dyspnea Respiratory distress and shortness of breath are common in the final days of life, affecting more than half of patients. Although the causes of dyspnea are diverse and often multifactorial, there are common approaches to management (Dudgeon and Rosenthal, 1996). The sensation of air hunger causes great anxiety, and the appearance of respiratory distress is traumatic for patient and family (Ahmedzai, 1998). Despite the prevalence of this devastating symptom, there are no formal clinical practice guidelines for its management in end-of-life care. Palliation of dyspnea, if the underlying cause cannot be addressed, often depends on the use of opiates for cough control and the reduction of air hunger. The use of bronchodilators and oxygen can provide symptom relief depending on the etiology and pathological process. Respiratory secretions can be minimized with scopolamine and atropine if necessary.

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Improving Palliative Care for Cancer Anxiolytics may also make an invaluable contribution in this setting, as may behavioral therapies to assist in relaxation. In the patient who is dying imminently, sedation with intravenous morphine may be most appropriate to treat the distress of severe air hunger. As mentioned earlier, Cheyne-Stokes respiration that often characterizes the final stage before death is especially disturbing to family members who feel that the rapid respiration alternating with apnea must be distressing, although patients are somnolent in this final phase of dying and interventions for comfort are not necessary. However, the suffering of those who care for them must be recognized and psychosocial support and education are essential. Families are often unprepared for the events and symptoms of the final days, and the trauma of this experience is magnified by the uncertainty about the future. Reassurance and education by the medical team are an important component of quality clinical care and can have an enormous impact on the family who otherwise is haunted during its bereavement by images of suffering. Development and implementation of clinical practice guidelines for dyspnea is especially important, given both the high incidence of this symptom and its emotional impact. Further research on symptom management in the end of life will support evidence-based clinical interventions for terminal dyspnea. Control of Physical Symptoms: Next Steps Clinical practice guidelines for control of the common symptoms have, at present, been developed largely for the care of ambulatory and hospitalized patients. These must be modified to apply to end-of-life care. Excellent descriptive guides in the literature for symptom management at the end of life must be developed into algorithm-based clinical guidelines. Guidelines should be developed by a multidisciplinary panel to address the spectrum of physical symptoms common at the end of life, modifying and building on existing practice guidelines for symptom management. Education of patients and families, using a practice guideline model, is needed to ensure their understanding of the common symptoms at the end of life and their management. This is essential to minimize distress and to reduce uncertainty and fears about the dying process. Guidelines must be culturally sensitive and address the special concerns around treating underserved medical populations (e.g., non-English speaking, chronically mentally ill, religious, ethnic, and racial minorities). Guidelines must be developed that ensure adequate symptom control to prevent the secondary development of depression and anxiety that further complicate overall management by the presence of greater distress levels. Guidelines must provide for the concept of comprehensive end-of-

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