The Effects of Palliative Care on Other Family Members
Tonya Kerney
McKendree University

The Effects of Palliative Care on Other Family Members
Family members of patients who are in palliative care experience emotions including hopelessness, guilt, and sadness. They are often physically exhausted and may become ill themselves. Many experience depression. Family Caregiver Alliance (as cited in McMillan et al., 2006) has estimated that over fifty million Americans assist a family member with a disability or illness on a regular basis. Of these ill patients, many require extensive care from family members.
Caregivers of cancer patients especially experience very high stress levels. They are often burdened with physical exhaustion, emotional distress, and financial worries from loss of time at work to care for their loved one (Emanuel & Emanuel, as cited in McMillan et al., 2006).
The purpose of the study I reviewed was “to determine whether hospice plus a coping skill training intervention improved family caregivers’ quality of life, burden, coping, and mastery, compared with hospice plus emotional support and usual hospice care (McMillan et al., 2006, p. 214)”. To participate in the study, caregivers had to be caring for adult cancer patients, both had to give consent, both had to be able to read and comprehend English, both had to have achieved at least a sixth grade education, and both had to achieve a minimun score of seven on the Short Portable Mental Status Questionnaire (McMillan et al., 2006). This questionnaire is a tool used to assess organic brain deficits in the elderly. It measured orientation, remote memory, and ability to complete a serial subtraction task (Pfeiffer, as cited in McMillan et al., 2006). Subjects were excluded if the caregiver was also being treated for cancer (McMillan et al., 2006).
Primary outcomes assessed were: caregiver quality of life, burden of cancer symptoms, general caregiver mastery, and burden and mastery specific to caregiving tasks. The study was made up of three groups. The first group was the control group. They received only standard hospice care. The second group received hospice care and supportive visits from a nurse. The nurse spent her time talking with caregivers and allowing them to discuss their feelings. The nurses were specifically taught not to give advice or teach any problem-solving. The third group was the experimental group. They received standard hospice care and were taught a coping intervention by a nurse. The intervention involved problem-solving and was intended to help them assess and manage symptoms. The model was adapted for families caring for cancer patients at home. The model consisted of four components: creativity, looking at the problem from a new perspective; optimism, having a positive but realistic attitude; planning, setting goals that are reasonable and planning necessary steps to reach them; and expert information, what nonprofessionals need to know about the problem, including when to seek help and what caregivers can do at home for the problem. The model was named Family COPE, an acronym for the components. It has been converted into a manual available upon request from the authors (McMillan et al., 2006).
The authors found that the COPE intervention did improve the quality of life of the caregivers. Since the scale measured only total quality of life, it was impossible to determine which aspect of it improved. They also found improvement in burden from patient symptoms and caregiver tasks, which means they were better able to tolerate symptoms or caregiver tasks, even if hospice care did not eliminate the need for care or alleviate the symptoms. Feelings of mastery by caregivers were not found to be affected by the model. The authors surmised that the intensely demanding nature of hospice care may have made it difficult to improve these feelings. They also found that while emotional support was probably appreciated by caregivers, it did not improve caregiver burden of symptoms or quality of life (McMillan et al., 2006).
McMillan et al. (2006) recommended the COPE model be evaluated in caregivers of hospice patients with a diagnosis other than cancer. They also recommended the model be studied in caregivers of terminally ill patients not receiving hospice care. They reiterated that the COPE model had been converted into a manual for future use and encouraged others to contact them to acquire it. The authors stated “we hope that our work will contribute to the development of greater evidence-based practice for family caregivers at the end of life (p. 221)”.
While I am an advocate for palliative care, I realize it cannot provide everything caregivers need. Caregivers experience an overwhelming sense of responsibility to the patient. In addition they may feel guilt, sadness, and exhaustion. They must deal with their own emotions related to having a dying family member. They worry about money, especially lost time at work. They worry about neglecting their spouses and children to care for the family member. They often neglect their own health while caring for their loved one. I think teaching the COPE model or any type of coping skills or problem-solving skills to family members is very beneficial. In addition, I think family members should seek out support groups or online forums to connect with others who are going through the same things. I feel that caregivers need all the support and resources they can get, and they should take every opportunity to utilize them.

References
McMillan, S. C., Small, B. J., Weitzner, M., Schonwetter, R.,Tittle, M., Moody, L., & Haley, W. E. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer, 106(1), 214-222.