The challenges of caring for patients become more complicated when the cancer returns and the patient approaches the end of life. In addition to the practical needs of comfort and life resolution, studies show that caregivers of patients at end-of-life are more depressed and spend the most time providing care. Approximately 72 percent of caregivers reported sleep disturbance due to being awakened frequently to provide care. They also may suffer from guilt and feelings of regret in the belief that they could have done more. And, they may experience feelings of “anticipatory grief,” feeling the loss of their loved one even before it happens.
Allison Applebaum, director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center in New York, says family dynamics often become intensified as the patient approaches the end of life, and each caregiver faces his or her own unique feelings. Unfinished family business often arises, and feelings can be intense.
Applebaum recounts an instance of working with a family facing the death of their 30-yearold daughter from colon cancer. It highlights the complications of bereavement for caregivers and those who are not primary caregivers.
The mother was the primary caregiver and shared duties with her daughter’s husband until they divorced before she died, explains Applebaum, who worked with the patient’s 17-year-old brother during her illness. Because the patient’s brother didn’t take her to doctors’ appointments or help with daily living, he did not identify himself as a caregiver. His sister’s caregiving network was so big that he felt invisible in many ways, Applebaum says, adding that he missed out on the emotional rewards he might have experienced if he believed he had helped his sibling.
“He didn’t want to come see me initially,” Applebaum says, “and he didn’t recognize in himself the symptoms of depression, which were the result, in part, of not feeling confident in his role. He was scared about losing his sister and about his mother’s health.”
By the time he returned to see her two years later, Applebaum says she saw the symptoms of unresolved and complicated bereavement. Had he come before his sister’s death, she says, his outcome may have been much better.
Determining how to support caregivers during this time is being studied, but the best approach has yet to be identified. Researchers at Case Western University reported a high degree of satisfaction from caregivers who were offered a support team composed of an advanced practice nurse, a social worker, a spiritual adviser and the patient’s oncologist to explain what was happening and why. The team approached caregivers at the first diagnosis of late-stage cancer, recognizing that most conversations about end-of-life were occurring too late.
The team provided support on a monthly basis, and, when the group of caregivers who received care was compared with the control group, they showed a higher satisfaction with end-of-life care in five areas: pain relief, managing pain, speed in treating symptoms, information about side effects and coordination of care. The researchers contend that “support services targeting psychosocial needs of patients and families should be incorporated as routine adjuncts to cancer-directed therapy, and that this type of team-oriented approach is an effective means to do so.”