Caregivers benefit from education and support

Sessions with hospice nurses improve coping skills

For many patients dying of cancer, home is where they want to spend the last weeks of their lives. Their caregivers—often spouses, life partners or children—may be willing to give whatever care their loved one needs, but can find themselves overwhelmed, unsure, and at risk for depression and other health problems themselves.

"In today's health care system, patients simply don't have the option of being hospitalized for long periods, including at the end of life. And most patients tell you they want to be able to die comfortably at home in their own beds," says Susan McMillan, PhD, RN, FAAN, a professor at University of South Florida College of Nursing. "But that can only happen if we adequately prepare family members to provide extensive care for their loved ones at home."

McMillan recently completed a study in which caregivers were given supportive educational intervention by veteran hospice nurses in an effort to measure what effect that would have on the caregivers.

McMillan says people taking care of dying cancer patients at home significantly benefited from the interventions, in which they were taught how to cope with distressing patient symptoms. She knew of the COPE (creativity, optimism, planning, and expert information) model developed by Peter Houts, PhD, described in "The American College of Physicians Home Care Guide for Cancer," and was sure it could be modified to benefit those caring for terminal cancer patients at home. The COPE approach, on which McMillan based her project, includes clearly defining a problem, gathering expert information about it, brainstorming a range of solutions, devising a plan, anticipating potential obstacles, adjusting the plan accordingly, implementing the plan, and evaluating the results.

COPE was provided to family caregivers of hospice patients with cancer over a seven- to nine-day period, and outcomes were compared with hospice care alone and hospice care plus emotional support.

More become caregivers every year

At any one time, as many as 52 million Americans assist family members with an illness or disability, including many who provide extensive care for relatives with cancer. That figure is expected to grow as the population ages.

Previous studies have shown highly stressed family caregivers are at higher risk for depression, health problems, and increased death rates.

"There has been little prior data to describe which caregivers are at greatest risk for distress and which interventions are likely to relieve that distress," according to McMillan. "We found that caregivers benefited from even a small number of sessions with the interventionists, above and beyond the benefits gained from hospice care alone."

Family caregivers are central to end-of-life care because they offer emotional support, help with activities of daily living and medications, and communicate with the patient's health care team about his or her condition. Yet, caregivers—many of whom are elderly spouses with their own health problems—may experience significant strain and anxiety from taking care of seriously ill patients, McMillan says.

With cancer patients, there are some symptoms that are nearly universal, and so three of those—pain, dyspnea, and constipation—were selected as the symptoms that caregivers would receive support for. Hospice nurses visited caregivers and patients three times, and during the visits focused on identifying, accepting, and managing the sometimes distressing symptoms.

"The nurses worked with the caregivers during those visits on managing the symptoms using the patient as the model," says McMillan.

Another component to the study was a set series of visits in which the nurse did not address symptom management, but talked at length with the caregiver about his or her relationship with the patient.

"The 'friendly visit' was designed for the nurse to spend time with the caregiver and to talk about specific topics that we gave the intervener to use, such as 'How did you meet [the patient]?' or 'How long have you known the person?' It's more focused on being supportive of the caregiver, not on managing the patient's symptoms."

McMillan says the results of her study indicate that the addition of COPE intervention for the caregiver was crucial for the caregiver. Researchers compared the group of patients and caregivers who were receiving standard hospice care alone with those who were receiving hospice care along with supportive visits for the caregivers.

With intervention, McMillan says, the caregiver's quality of life increased, while the burdens from caregiving and caregiver distress were significantly reduced.

"Their distress at the patients' symptoms lessened with intervention," she says. "Part of it has to do with the ability to accept and manage the symptoms and the feeling of self-efficacy. They felt more in control, better able to manage the symptoms and accept, and not be so distressed about [the symptoms]."

While at first she was disappointed to see that the intensity of patients' symptoms did not decrease with educational intervention for their caregivers, McMillan was pleased to note that there was a decrease in patients' distress about their symptoms.

"Initially it distressed me that their symptoms did not decrease in intensity, but then these are cancer patients within days or weeks of death, so it is to be expected that their symptoms would not decrease in intensity," she points out.

McMillan says the findings of the hospice intervention study are "immediately translatable" to the bedside of end-of-life hospice patients, regardless of what they are dying of.

"Usually, when you talk about studies of intervention, you need additional research and confirmation, but this is something that can only help," McMillan explains. "There's no hazard to it, and no need to not use it immediately in other patients."

Patients with end-stage heart disease, chronic obstructive pulmonary disease or dementia are populations for which hospice support and education intervention should be expanded, McMillan and her colleagues recommend. Their findings on benefits to caregivers appeared on-line Dec. 2, 2005, in Cancer, the journal of the American Cancer Society, and in the January 2006 print issue.

Creative approach to HIPAA concerns

In designing her study, McMillan avoided potential ethical and privacy issues by teaming with the hospice and hiring its staff, making them employees of the study.

"When you come from the university in to the hospice, where you don't belong, it can be iffy whether you can get a sample or not," she explains. "We overcame that by hiring the staff, reimbursing the hospice for the staff we used. Only hospice staff participated [in the interventions and sample gathering]."

The nurses retained their positions with the hospice for purposes of raises and promotions. The precaution of making the hospice nurses employees of the study provided reassurance to the hospice that only hospice nurses would be gathering data, thereby reassuring the hospice that researchers would not interfere with patients; it also ensured that patients could expect that the nurses calling on them would be the hospice nurses they were used to.


  • McMillan S, Small B, Weitzner M, et al. Impact of coping skills intervention with family caregivers of hospice patients with cancer: A randomized clinical trial. Cancer. On-line, December 2005, at
  • Houts P and Bucher J, eds. Caregiving: A Step-By-Step Resource for Caring for People With Cancer at Home. Atlanta: American Cancer Society; 2000.