Although most caregivers (primarily family members) are highly motivated and are committed to providing care, caregivers involved with patients who have cancer experience substantial burdens.67-76 Not only are caregivers called upon to provide emotional support for the patients through periods of stress, they are also increasingly being required to provide medical and nursing care in the home as a result of the shifts in care from inpatient to outpatient settings. Moreover, particularly in developing countries, the family caregiver may be the only caregiver toward the end of a patient's life, with little or no access to health care professionals. For patients with germ cell tumors, who are often young, caregiver issues are somewhat different from those for patients who are older. Caregivers may be parents, siblings, young spouses, or friends, and although their concerns overlap with those of caregivers of older patients, their experience is clearly also somewhat different from that of those caregivers. That stated, although there are data to quantify the general care-giver experience, there is little information to quantify the experiences of the caregivers of patients with germ cell tumors. There is a small amount of data that illuminate the experience of the caregivers of the young, and such data may point to some of the specific issues that arise in the setting of advanced disease from germ cell tumors.
In a survey of 492 caregivers involved with patients with cancer, the caregivers reported having needs in a variety of categories, including informational, household, physical, psychological, spiritual, and legal and financial categories, as well as in the areas of respite care and other concerns.67 In this study, caregivers' greatest needs were informational and psychological, and there were significant correlations between caregivers' needs and patients' activity levels. Needs and priorities clearly changed over time, and frequent reassessment was suggested. Overall, the authors reported that their findings suggested "the urgent need" for programs and services to meet the informational and psychological needs of caregivers of patients with cancer. While caregiv-ing is a difficult and challenging task, especially in the setting of the impending death of a loved one, many caregivers have also described the experience as a valuable one. It is apparent that in the face of adversity, sadness, and loss, great meaning can often be found in the context of the caregiving experience. That stated, most attempts at quantifying the impact of caregiving have focused on negative aspects of caregiving, and few investigators have explored ways to promote any of the positive aspects of providing care.74 As a consequence, most of the following discussion is focused on caregiver burden.
As the gatekeepers of the health care system in most areas, physicians are in a position to observe caregiving needs, to help lessen burdens, and to promote "good health" in the context of disease. It is helpful if physicians can be attuned to noting and, at a minimum, triaging caregiver needs. Some care-giver problems may be amenable to intervention by physicians, and others may require the input of other health professionals or support resources, including social support agencies and other individuals or groups in the community.
Caregiver burden is significant in that it affects the outcomes of both patients and caregivers. Unmet patient needs occur more frequently in settings in which the burden of care on caregivers is greater, for example, in situations in which patients are severely debilitated or in which financial resources are lim-ited.68 69 In terms of the effects of caregiving on caregivers, there is evidence to suggest that caregiv-ing is a significant personal and societal burden. Caregivers' health and sense of well-being can be affected negatively by the experience of living with a family member who is nearing the end of life.7273 Moreover, the period of bereavement after the loss of a family member can have a significant physical and psychological impact.76
Although the SUPPORT study did not report on data specific to the experience of patients with germ cell tumors,70 it did provide information about the impact of caregiving on family life planning, decision making, and finances. The investigators reported that 34% of patients nearing the end of life required "considerable assistance" from a family member. In 20% of cases, the family caregiver had to quit work or make a major life change to provide care. Loss of most or all of the family savings was reported by 31% of families. In the SUPPORT study, caregivers of younger patients were in a group that was characterized as being at high risk for such burdens, and this risk is likely to apply to the families of those with germ cell tumors because of the age at which the disease is typically diagnosed. Adolescent and young adult patients will have their edu cational, employment, family, and other plans drastically changed. Additionally, in health care systems that lack universal access to care (including, among others, the US health care system), this patient population may be uninsured or underinsured and may have inadequate access to health care support. In the SUPPORT study, the economic concerns appeared also to be linked with decision making. When increased economic hardship was present for families, patients often expressed a preference for comfort care over life-extending care.71 Regardless of whether or not this suggests a willingness on the part of a patient to forego treatments in order to minimize the economic impact of their illness on their families, it is important for physicians to be cognizant of the fact that caregiver burden may influence health care decisions to a greater degree than is currently appreciated. Thus, whenever feasible, physicians should explore and strive to alleviate caregiver burden, as a part of optimal patient care.
Significant burdens may affect parents, spouses, or partners, further compounding the financial impact of the disease. In the setting of disease affecting the young, there may be added concerns related to caring for the siblings, children, friends, or parents of patients. Not only are these individuals likely to be worried, anxious, and even depressed themselves, they are also likely to have responsibilities related to the delivery of medical care. Especially at the end of life and in the home, caregivers are often called upon to function in the role of health care providers, administering medications, making judgments about distress, and triaging a patient's concerns to the appropriate health professional. Carrying out such functions requires a great deal of support from health professionals.
Although further information specific to the impact of caregiving on caregivers involved with patients with germ cell tumors who are nearing the end of life may be helpful, the current body of evidence points to the importance of health care professionals being responsive to caregiver needs and being willing to both explore and implement strategies that help minimize caregiver burden.75,76 From a policy perspective, there is a need to give greater attention to the assistance available to caregivers who are instrumental in the provision of care for patients with cancer. Such assistance is occurring in a number of countries, and in an attempt to further encourage such initiatives, the World Health Organization has made recommendations that suggest the creation of policies that address formal systems of recompense for principal family caregivers and the implementation of medical and nursing programs to back up and support home care.43,77 Although some programs are available in the United States, they are inadequate to prevent the occurrence of the level of burden described above.
The majority of the literature concerning caregiver burden has focused on family members and friends of the patient, but an interesting subset of the literature addresses the stresses and trials experienced by members of the health care team when they care for patients with chronic and life-threatening illness. Those health professionals caring for patients with end-of-life issues in the setting of germ cell tumors are frequently caring for those who are young, and death among these individuals is most commonly considered to be "unnatural." These specific issues, combined with the stresses encountered in many health care systems today, can serve to create significant stress for health professionals.
In a study of 1,000 physician subscribers to the Journal of Clinical Oncology, it was reported that 56% of respondents experienced burnout in their professional lives.78 Balfour Mount has defined burnout as the result of stress in the professional life of a physician or caregiver that results in apathy, suspicion, self-protection, disillusion, and depression.79 Burned-out caregivers risk being emotionally exhausted, treating patients and colleagues in an unfeeling or impersonal way, and having a sense of low personal accomplishment.80,81 Clearly, burnout is a risk that exists for the entire oncologic health care team, and its occurrence can place the provision of optimal health care at risk.
Reported causes of burnout have included dissatisfaction with the system of health care, continuous exposure to fatal illness, limited therapeutic success, reimbursement difficulties, pressure to see an ever increasing patient load, and insufficient training to handle these frustrations.78,82,83 Of particular concern are the mention of limited therapeutic success and the exposure to fatal illness as causes of burnout since these remain two fundamental facts of oncologic care.
The low mortality rate from germ cell tumors reflects one of the tremendous advances of science and care in oncology, but when illness is clearly unresponsive to these treatment advances, physicians and other health professionals may experience both a sense of loss and a sense of frustration at the inability of medical advances to fully address this disease. As noted previously, patients with germ cell tumors comprise a small percentage of the total patient load handled by any treatment team, even at the largest of referral centers. However, given the age and historical curability of the disease, the stresses associated with this patient population may be disproportionately large. Patients with germ cell tumors and their caregivers are often young, and their lives and experiences may mirror those of the friends, brothers, sons, sisters, and daughters of health care professionals. Health care professionals may therefore be placed in a setting where they are confronted with their own mortality in a more direct and immediate manner than that to which they may be accustomed. Watching a patient in the prime of life succumb to a disease from which few patients die could place health care providers in a situation in which they may question, maybe more than in other situations, their own expertise (and whether they did all that they could), the efficacy of modern medicine, and the worth of their work in an often frustrating medical system. Furthermore, in situations (not uncommon) where health care providers have not been trained in aspects of palliative care, there is a risk that they may feel not only inadequately prepared to alleviate the suffering of their patients but also inadequately prepared to address their own stresses. These difficult aspects of working in the arena of oncology are not commonly addressed in the discourse on oncology settings and have only rarely been a part of educational initiatives.
The physicians who responded to the Journal of Clinical Oncology survey by Whippen and Canellos cited increased vacation or personal time as the most desirable method of preventing burnout.78 The teaching of coping skills was ranked low by the respondents in this study. Recognizing that the physicians surveyed had already completed their training and that it was possible that new lectures or seminars could exacerbate existing time pressures, Whippen and Canellos suggested that it is the residency and fellowship programs that should better prepare trainees to cope with the reality of contemporary clinical practice.78 This could be accomplished by increasing the time dedicated to teaching the principles of palliative care in a longitudinal manner throughout internal medicine residencies and oncology training programs and fellowships. Similar training opportunities should be available for other members of the oncology health care team. The goal of such initiatives should be to empower oncologists and other health care providers to assist with the care of patients and families dealing with life-threatening illnesses.
In the setting of care for patients with germ cell tumors, it seems logical to suggest that physicians and others in the oncology team should be attuned to their own needs and the feelings of personal loss that may arise. It is also clear that the enhancement of educational experiences related to end-of-life care is a needed part of oncologic training and may improve the care of this patient population. Finally, it is also important for health care providers in this and other end-of-life settings to become accustomed to functioning as part of an interdisciplinary team. It is untenable to believe that any individual can successfully meet all of the needs of patients and their families, even with increased training in palliative care for individual providers. The team approach to addressing the myriad needs of young patients and their families is likely to best serve the patients and their caregivers, both family and professional. This approach will also allow health care providers to set boundaries and limits and should provide each member of the health care team with important time away from clinical practice to fulfill their own personal, familial, and social obligations. Such an approach should place health professionals in a position where the care they deliver as a team is more comprehensive and effective and where they may feel more emotionally robust and thus more able to assist in the provision of optimal care for patients and families in sad and often difficult settings.
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