When Their Loved One Has Advanced Cancer, Caregivers Welcome Early Support

Sara Douglas, PhD, RN

Researchers from the nursing school at Case Western Reserve University have found caregivers of terminal cancer patients reported a high degree of satisfaction when they had a team available to them through difficult decisions and end-of-life treatment for their loved one.

The results of the study, which was funded by The National Institute of Nursing Research and the National Cancer Institute, also demonstrated that the time of intervention also matters.

“In the past, many of those conversations started too late—days or weeks before the patient died,” Sara Douglas, PhD, RN, associate professor at Case Western Reserve’s Frances Payne Bolton School of Nursing and lead author said in a statement. “We owe it to the patients and caregivers to start earlier and think the choices through,” said Douglas, who conducted the research with CWRU colleague and principal investigator, Barbara Daly, PhD, RN, FAAN, professor of nursing.

Case Western’s intervention concept follows a larger study of 610 advanced cancer patients and their caregivers at Case Medical Center-Seidman Cancer Center in Cleveland, Ohio, between 2008 and 2012.

From that study, the researchers analyzed data from 106 caregivers with loved ones who died from lung, gastrointestinal or gynecologic cancers and divided them into two groups: one who had received the cancer support team and one without the additional support.

The intervention’s support team—comprised of an advanced practice nurse, social worker, a spiritual advisor, and the patient’s oncologist—got involved in end-of-life conversations with the patient and caregiver at the first diagnosis of a late-stage cancer.

Participants in the study were asked about their mood and social supports when recruited, and again at 3, 9, and 15 months to gauge whether the intervention made a difference in their moods, social support, and satisfaction with end-of-life care.

They were also questioned after their loved one died about the patient’s care in the last week of life.

While neither group showed changes in mood and feelings of social support, the authors reported that caregivers with the aid of the cancer support team 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 measureable benefit to grieving families of having had access to comprehensive support prior to the death of their loved one reinforces the need to include families in cancer care,” Douglas said.

These findings reinforce the need to incorporate the psychosocial needs of patients and families as routine adjuncts to cancer-directed therapy, the researchers said.

“The perception that the caregiver’s loved one was well cared for can have long-term benefits in easing possible regrets that may occur after someone has died,” Douglas said.

The findings of this study are reported in the July issue of Oncology Nursing Forum.