Comprehensive Care of the Cancer Patient
Jeffrey W. Clark
Treatment of cancer is multifaceted, involving not only a range of treatment modalities but also the coordinated efforts of a multidisciplinary team, in which the primary care physician plays a central role. To succeed in this role, the primary physician needs to understand the major issues of cancer management and interact effectively with cancer specialists, patient, and family. In having an established trusting relationship with patient and family, the primary care physicians are often sought for counsel and guidance. Consequently, an understanding of treatment choices and management recommendations as well as an ability to explain and assess them is necessary. Most cancer patients can remain at home with their families and receive optimal therapy on an outpatient basis when a primary physician is able to work closely with a cancer center or a local specialist in cancer management.
Curative treatment often requires a multimodal approach that may include surgery, chemotherapy, and radiation therapy. Certain cancers (e.g., germ cell tumors or leukemias) can often be cured with chemotherapy alone and others with radiation therapy or combinations of radiation therapy with chemotherapy. Rapid advances in understanding of the fundamental biology of different cancers hold promise for achieving further improvements in outcome in the decade ahead.
Effective care of the cancer patient begins with communicating the diagnosis and strengthening the relationship between patient and physician. It also requires the establishment of a close working partnership with the cancer specialist, whose job will be to design and implement the treatment program. The primary physician can and should maintain a central role in the care of the cancer patient, but to do so requires a thorough understanding of the natural history of the tumor, its staging and monitoring (see Chapter 86), and its responsiveness to treatment. In addition, the patient will call on the primary physician for relief from symptoms related to the tumor or its treatment. This necessitates a thorough knowledge of measures to control pain (see Chapter 90), emesis (see Chapter 91), and related side effects of cancer therapy (see Chapters 88 and 89).
For many patients, the diagnosis of cancer evokes images of pain, suffering, mutilation, and certain death. These basic fears are so intertwined with the word “cancer” that confirmation of the diagnosis places extreme emotional stress on both patient and family; rates of suicide and cardiovascular death are increased. It is in managing this anguish that the primary physician plays a most important role as the person to whom the patient and family can turn. One must be not only the source of scientific and medical expertise but also the provider of emotional support and understanding.
Giving Bad News
It is always difficult to give bad news. Physicians sometimes avoid telling the patient the diagnosis in accurate and specific terms at the outset, resorting to such euphemisms as “lump,” “mass,” and “lesion.” Further inhibiting communication may be the ill-advised, although well-intentioned, insistence of family members that the diagnosis be kept from the patient out of fear of precipitating a severe depression. Such concerns are usually ill conceived. It is rare that ignorance of the diagnosis or prognosis is helpful for the patient or family. Quite the contrary, patients and their families deal better with cancer when they are well informed.
The goal in communicating the diagnosis and prognosis is to be accurate without destroying all hope. First and foremost, the words “cancer” and “malignant tumor” should be used at the outset of the interview and not avoided, although constant repetition of the terms is usually unnecessary. The term “fatal” ought to be omitted in discussions of the prognosis because it implies little hope of control. When informed of an incurable malignancy, the patient and family want to know, “How much time is left?” A rough estimate may be necessary when patients must arrange their affairs, but if possible, the physician should avoid indicating a specific period of time because it is apt to be inaccurate. Preferably, the physician should direct the patient toward realistic therapeutic approaches while emphasizing living life as fully as possible instead of initially focusing on dying.
The candor expressed by telling the diagnosis “as it is” facilitates the development of trust among patient, family, and medical staff and breaks down the barrier that often isolates cancer patients from their families. Being well informed also helps alleviate the sense of hopelessness and loss of control that can be one of the most frightening aspects of living with a malignant disease. Families are especially grateful for full and frequent reports of the patient’s status and prognosis.
The consequences of not fully informing the patient and family can be considerable. The patient who is unaware of the diagnosis and prognosis may fail to put affairs in order and continue to have unrealistic plans or uncomfortable relationships with other members of the family, which might otherwise be resolved if all were to understand the prognosis. Similarly, the uninformed family is unable to grieve gradually over time, and death may appear to be sudden.
The resulting unresolved grief may profoundly affect the surviving family members (see Chapter 227). Both patient and family may need to grieve and resolve their own fears and anxieties. By virtue of having a long-standing relationship with the patient and family, the primary physician is in an ideal position to provide effective support and guidance.
Dealing with Responses of Patient and Family
Cancer patients have been observed to pass through a series of emotional states. These include periods of denial, hostility, anger, hope, depression, and finally acceptance. The physician can help alleviate the more dysfunctional reactions and facilitate the patient’s coping. The reactions of patients at the time of presentation of the diagnosis depend on preconceived ideas about cancer and what the specter of cancer suggests to them. Common misconceptions include the certainty of death, intractable pain, and erosive, disfiguring disease.
To avoid needless worry, it is essential at the outset to address these common concerns directly, even if the patient does not express them. Nonetheless, a good number of patients will respond with denial, hostility, rejection of loved ones, regression, or even withdrawal. It is important to recognize such reactions as psychological defense mechanisms and respond to them in an understanding and patient manner.
Denial
Denial of the diagnosis is generally a transient reaction. When denial is mild, physicians may need only to reinforce their remarks with a repeated presentation of the facts or a provision of objective and tangible evidence. However, in some patients, denial is extreme and functions as a crude psychological defense mechanism, necessary for sustaining the psyche. A constant onslaught of evidence and reinforcement of the diagnosis or prognosis may be counterproductive and is not justified.
Hostility
Hostility is occasionally an early reaction to the diagnosis. Anger may be directed against the medical team for a perceived delay in diagnosis or for inadequate attention and also toward family members, who may be viewed as not particularly upset and happy to finally “get their way.” This phase is generally transient, receding as the patient comes to recognize the reality of the situation and the need for family and physician. Hostility is difficult for the patient, family members, and doctor and may be intense enough to lead the physician and family to reject the patient emotionally. If recognized, this reaction should be allowed to run a natural course without withdrawal of support.
Regression
Regression is an accentuated response commonly occurring in the patient with a dependent personality who may have appeared overly independent before illness. If it is more than transient, the regression may turn infantile and must be mitigated by providing a parental figure who will be, on the one hand, supportive and, on the other hand, stern and demanding. Infantile regression places an inordinate burden on the family, who are called on to provide extraordinary amounts of support.
Withdrawal
Withdrawal is an extreme form of regression, often tinged with elements of hostility. Direct confrontation is essential for the patient who withdraws; constant encouragement and the setting up of goals to be achieved (e.g., ambulation, planning trips, visiting friends) are critical.
Family Reactions
Reactions of the family are critical to the patient’s well-being and to aiding the health care team in providing maximum support. Thus, the physician must be concerned with the family’s responses to the patient and the diagnosis. The physician is frequently obliged to deal with many members of the family, often with differing levels of need for information and support. Not uncommonly, complete families—wives, husbands, and children—may be alienated by the patient, who disallows them the opportunity to resolve their confusion. Such alienation, which may approach pathologic proportions, can be understood with the help of the physician. A frequent family reaction is to provide smothering protection in compensation for guilt over previous misunderstandings with the patient and the need to resolve such differences. Again, the physician can help alleviate such pathologic reactions.
Psychological Reactions to Cancer Treatment
The patient who enters treatment for cancer is subjected to a reinforcement of the diagnosis and a rekindling of the fears regarding threats to self-esteem and self-image. The latter may be particularly demoralizing if the cancer treatment involves bodily disfigurement or a physical limitation that is either cosmetically mutilating or functionally disabling. Thus, the patient who requires a mastectomy, jaw resection, amputation, or colostomy faces a significant and frightening change in self-image. The distortions that are incorporated into the patient’s unconscious, perhaps as a result of real or imagined experiences with friends, are potentially devastating. Often, these distortions are unrealistic and unsubstantiated, but more importantly, they may not be expressed. The physician must inquire into the patient’s concerns and offer a realistic appraisal to minimize unnecessary anguish (see Chapter 1).
Patient education is a most important component of the approach to dealing with the stress of therapy. It additionally serves to cushion the stress by allowing the patient to intellectualize about the disease and its treatment. In this “demythologizing process,” patient fears are identified and dealt with openly. Often, the result is a more acceptable view of one’s illness and treatment. Educational materials available from the local institutions (including cancer centers), the American Cancer Society, the American Society of Clinical Oncology, and the National Cancer Institute can complement the educational effort by addressing common questions that patients have about cancer therapy. Detailed explanation of the therapy in terms of its effect on the tumor and its potential side effects allows the patient to approach treatment realistically. Patients with advanced disease and their families often harbor unrealistic expectations about the efficacy of chemotherapy. The use of support groups, meditation techniques and other mind-body approaches, and adjunctive therapies such as acupuncture can facilitate the patient’s coping with the stresses of cancer therapy.
Such supportive efforts are designed to strengthen the patient psychologically and improve quality of life. Whether they affect survival or immune function is uncertain, but they certainly can help morale and coping with illness.
The approach to cancer treatment is determined largely by tumor type and stage (see Chapter 86) but also importantly informed by patient preferences. In the earliest stages of disease, the malignancy is localized, and cure is possible through locally or regionally applied therapy. Regional spread reflects more advanced disease, and the chances of cure are lessened, but not eliminated. More systemic forms of therapy are added to local measures. With important exceptions (e.g., germ cell cancers, lymphomas, and leukemias), distant metastasis indicates that cure is unlikely, and the goal is to maintain the best quality of life (as defined by the patient) for the longest time through the use of systemic therapies complemented by judicious use of localized approaches (e.g., radiation therapy for a painful bone metastasis) as appropriate.
Localized Disease: Surgery and Radiation
Surgery
Surgery has traditionally played the dominant role in the management of localized cancer and offered the potential for cure. The diagnosis is established and confirmed by surgical biopsy, and cure may be affected by operation. Nonetheless, the emphasis has shifted recently toward minimizing surgical procedures, particularly when the prognosis is determined by factors such as distant metastases and when salvage by secondary local modalities can be accomplished. For example, lymph node dissection for malignant melanoma, limb amputation for osteogenic sarcoma, ostomy and abdominoperineal resection for rectal cancer, and radical mastectomy for breast cancer have been scaled down in many cases to lesser procedures, so that morbidity is reduced without a compromise in survival. The surgical approach to these lesions may be modified by the addition of local therapy (e.g., radiation) and/or systemic therapy (e.g., cytotoxic agents).
Radiation Therapy
Radiation therapy has become more effective through the development of improved technology and delivery (e.g., high-energy linear accelerators, sophisticated computerized approaches for defining dose and target volume), lowering risk of morbidity and increasing rates of survival and local control. Radiation in conjunction with surgery (and often with chemotherapy) may be curative in some tumors when administered preoperatively or postoperatively. In other malignancies, the combined application of radiation and either surgery or chemotherapy may promote palliation and chances for longer-term survival, even in those settings where it is unlikely to be curative (see Chapter 89).
Regional Disease: Surgery Plus Adjuvant or Combined Therapy
Adjuvant therapy involves the addition of chemotherapy and/or radiation to surgical procedures. The rationale for adding radiation therapy is primarily to promote the local control of presumed residual microscopic tumor. In theory, chemotherapy functions as an adjuvant modality because of the possibility that microscopic tumor cells have spread beyond the local area even though they cannot be detected. It may be possible to cure these micrometastases before they have a chance to proliferate and for populations of resistant cells to expand.
Adjuvant therapy is an established approach to management for a number of malignancies and continues to be evaluated in ongoing trials for treatment of others. For example, in breast cancer, women with different stages of resected disease benefit from the addition of some combination of hormonal therapy, chemotherapy, targeted agents (e.g., trastuzumab for HER2+ cancers), and/or radiation therapy as appropriate for the specific tumor and stage. It has reduced the incidence of recurrence and prolonged overall survival. In patients with rectal cancer extending beyond the bowel wall or spread to regional lymph nodes (stage IIb, IIc, and III lesions), the use of radiation therapy has reduced local recurrence rates and, in combination with chemotherapy, increased median survival. In certain situations (e.g., rectal cancer), preoperative radiation therapy and chemotherapy may offer advantages over postoperative radiation therapy and chemotherapy because of reduced toxicity and potentially making the surgical resection easier. A survival advantage has now been demonstrated for many cancers (e.g., breast, NSCLC, esophageal cancer, gastric cancer, pancreatic cancer, colon cancer, rectal cancer) treated with adjuvant or neoadjuvant hormonal and/or chemotherapy (including targeted agents) often in combination with radiation therapy.