When cancer returns and the patient is nearing the end of their lives, caring for them becomes more difficult. Studies reveal that caregivers of patients nearing the end of their lives are more depressed and spend more time giving care and the practical requirements of comfort and closure in life. Sleep disturbance was noted by 72% of caregivers who were regularly awakened to provide care. They may also suffer from guilt and remorse since they believe they could have done more to help others. Additionally, they may feel “anticipatory sadness,” anticipating the death of a loved one before it really occurs.
Caregivers in New York encounter unique challenges as the patient nears death, says Allison Applebaum, the center’s director of the Caregivers Clinic. For example, emotions might run high when unfinished business in the family.
An example of working with a family whose 30-year-old daughter was dying of colorectal cancer is recounted in Applebaum’s book. It demonstrates the difficulties of bereavement for both primary caregivers and those who are not.
A 17-year-old patient’s brother worked with the patient’s mother during her sickness, and Applebaum says the mother was the primary caregiver until her daughter’s marriage divorced before she died. The patient’s brother did not identify himself as a caregiver because he did not accompany her to doctor’s appointments or assist her with everyday activities. Applebaum claims that his sister’s caregiving network was so large that he felt like an outsider in many ways. Due to the lack of recognition, he missed out on the emotional benefits he could have gained from helping his sibling in this way.
“It was not easy for him to come to visit me at first,” recalls Applebaum, “and he didn’t realize that he was showing signs of sadness because he wasn’t confident in his role.” His mother and sister’s health were also a concern for him,” he said.
Applebaum says she noticed severe mourning symptoms when he returned to see her two years later. It would have been much better for him if he had arrived before the death of his sister, she claims.
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Researchers are trying to figure out how to best support caregivers during this time, but no clear solution has yet been found. According to a study published in JAMA Oncology, patients’ oncologists, advanced practice nurses, social workers, and spiritual advisers were all on hand to explain what was occurring to caregivers at Case Western University. Team members were aware that most end-of-life discussions were taking place too late, so they engaged caregivers around the time of the patient’s first cancer diagnosis.
Caregiver satisfaction with end-of-life care was higher among those who received support from the team than those who received care from the control group.
- Pain relief
- Controlling pain
- Rapid treatment of symptoms
- Side-effects information
- Health care coordination
According to the researchers, support services for patients and their families’ psychosocial needs should be routinely integrated into cancer-directed therapy. Using a collaborative approach like this is a great way to get things done.