The Caregiver’s Perspective: Across the Illness Trajectory
Caregivers have their own emotional responses to patients’ diagnoses and prognoses, and they may require coaching and emotional support separate from that offered to patients.[1,2] Caregiver roles and caregiver burden are profoundly affected by a patient’s prognosis, stage of illness, and goals of care. The existing body of work on family caregivers of patients with cancer focuses primarily on a caregiver’s adjustment during the acute survivorship phase, from the time of diagnosis to 2 years postdiagnosis.
As open communication and diagnostic disclosure for patients have gained in popularity, studies have focused on the impact of truth-telling on patients, and guidelines for such communication have been developed.[4,5] Although caregivers are sometimes included in these studies, little attention has been paid to caregivers’ specific informational needs and preferences for diagnostic information or to caregivers’ readiness or willingness to integrate this new medical information. Yet a caregiver is expected to learn new illness-related terminology, enter the new treatment setting with the cancer patient, and participate actively in treatment decision making. For all of these reasons, caregivers experience a complex array of powerful emotions that may equal or surpass those experienced by the patient during diagnosis and treatment.[6-8]At Diagnosis
Family caregivers in the United States are expected to take an active role in decision making related to treatment options, beginning during the diagnostic phase. The caregiver is expected to do the following:
- Integrate new medical information.
- Learn new illness-related terminology.
- Enter a new treatment setting.
- Find the time to accompany the patient to medical appointments.
Caregivers play an important role in making decisions about treatment and care. The family often steps in as a patient's advocate and primary decision maker at the request of the patient. How well a caregiver fulfills that role may depend on his or her preexisting relationship with the patient and the level of agreement between caregiver and patient. Disagreements and conflicts can complicate decision making and affect treatment choices. In addition, disagreement within the family about the most appropriate treatment options for the patient can cause excessive stress for both patients and caregivers, resulting in diminished quality of life.
The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) is an instrument that assesses congruence in patient-caregiver communication. The tool can be used on patients, caregivers, or both and identifies specific areas of conflict that may be amenable to intervention. In the initial validation study, higher CCAT-PF scores were significantly correlated with the following:
- Greater patient depression.
- Higher perceived family conflict.
- Lower patient and caregiver well-being.
- Less expressiveness.
- Lower perceived family cohesion.
The CCAT-PF can be administered by any member of the oncology team.
During the active treatment phase, caregivers report difficulties in juggling the competing demands of providing emotional and tangible support to patients while meeting the ongoing obligations of home, work, and family. The demands of providing transportation, scheduling and making hospital visits, arranging for home care, and dealing with insurers may be physically and emotionally exhausting for both cancer patients and their caregivers.Planning the Transition Home
Transitions between care settings are particularly stressful for both cancer patients and their caregivers. The immediate posthospitalization period may be the most precarious for caregivers, filled with mounting concerns about managing patients at home while also attending to their own health. A study involving 518,240 elderly couples enrolled in Medicare found that the hospitalization of a spouse was associated with an increased risk of death for elderly caregivers. The cancer patient usually prefers to be at home, where he or she can resume a sense of normalcy in a familiar and comforting environment.Home Care
If the cancer patient is receiving home care, the caregiver is responsible for managing home care professionals, organizing necessary medical and food supplies, managing any medical emergencies that may arise, and generally navigating the health care system. In addition to assuming many of the patient’s domestic responsibilities, the family caregiver may have to forgo social activities and work duties to assume the primary caregiver tasks of providing companionship, accompanying the patient to medical appointments, and running personal errands.Surviving Beyond Treatment
Persistent psychological distress and role adjustment problems experienced by caregivers have been reported up to a year after patients have completed treatment for cancer, with levels of distress far higher than those found in healthy controls.[14,15] Much of this distress is attributed to elevated fears of recurrence and sexual difficulties.[16,17] At 2 years postdiagnosis, however, studies do not indicate long-term psychological distress.[18-20]
Generally speaking, factors that may predict a caregiver’s poor adjustment over the long term include the following:
- Strain in the relationship between caregiver and patient.[18,19]
- Negative communication patterns between caregiver and patient.
- Less social support.
- Role overload.
Caregiver quality of life has been found to be influenced by the cancer patient’s stage of illness and goals of care. Caregivers of patients at the end of life have been shown to have significantly lower quality-of-life scores and health scores than do caregivers of patients who are in active/curative treatment.[23,24]
The physical and emotional demands of caregiving reach their peak as the disease progresses to the terminal phase. The period during which patients enter hospice is often characterized by profound unrest and intense strain. In the context of recurrent illness, terminal illness, or the dying process, the caregiver must meet a new set of challenges in dealing with increasing functional limitations, increasing dependence of the patient, and greater symptom burden.[25,26] If treatment is prolonged, the capacity of caregivers to meet the daily needs of patients is severely strained.
Caregivers providing end-of-life care have been shown to experience increased emotional distress, regardless of the amount of care provided, when they are limited in their ability to participate in valued activities and interests. Research had suggested that caregivers of cancer patients were at risk of developing a variety of psychological and physical problems, including anxiety, depression, fatigue, reduced self-esteem, and somatic health problems.[27,28] A well-designed study examined the prevalence of psychosocial variables associated with anxiety and depression in 436 caregivers of cancer survivors at 6 and 12 months postsurvivorship. Outcomes show that anxiety and depression often coexist, and that while anxiety abated over time, the percentage of those who were depressed remained stable. Partners and caregivers of survivors with lung, hematological, or head and neck cancer showed the highest levels of anxiety and depression. High use of avoidant coping and interference in regular activities were associated with both anxiety and depression. This included lower emotional/informational support and lower positive social interaction. Additional variables associated with anxiety and depression at 12 months included higher unmet needs and more caregiver involvement in personal and medical tasks. Even at the 12-month postsurvivor diagnosis, almost one-third of participants reported anxiety. Understanding the variables associated with caregivers' anxiety and depression can lead to earlier identification, more specific assessment, earlier referral, and more tailored caregiver interventions.[Level of evidence: II] However, the landscape has changed since the development of hospice and palliative medicine as a medical specialty, the availability of specialist-level palliative care consultation teams, and the equal focus on the cancer patient and family caregiver as the unit of care.
Hospital palliative care programs have been shown to improve caregiver well-being, family satisfaction, and physical and psychological symptom management for patients and caregivers alike. In a retrospective study involving 524 caregivers, palliative care consultation was associated with higher scores in nine caregiver-related domains of care during the last month of life. These differences were attributable primarily to improvements in communication and emotional support.
Generally speaking, the hallmarks of palliative care that relate to caregivers include the following:
- An interdisciplinary focus.
- Concern for quality of life of both patients and family caregivers.
- Involvement of caregivers in symptom management, communication, and medical decision making.
While the oncologist and other team members cannot be expected to address the symptoms of psychological distress in family caregivers, it is nonetheless helpful to recognize and identify such symptoms so that caregivers can be referred to any services they may need. (Refer to the PDQ summary on Last Days of Life for more information about end-of-life care.)References
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