By: KAREN O. MOSS, PHD, RN, CNL AND SARA L. DOUGLAS, PHD, RN
Family caregiver satisfaction with end-of-life (EOL) care is key to better understanding patient EOL experiences.1 In measuring family caregiver satisfaction, it is important to conceptualize what is considered a “good death” or “good dying process.”2 Understanding the bereaved family caregiver’s satisfaction can help lead to improved EOL care for patients.2 In particular, families of patients who die in their preferred location are more likely to be satisfied with EOL care provided.3
Most people can identify the elements of their loved one’s experience of dying that were “satisfactory.” Often, these center around using less-aggressive medical care and earlier hospice referrals.4
MEASURING FAMILY CAREGIVER SATISFACTION
A longitudinal National Institutes of Health–funded study (NRO14856) conducted at the Frances Payne Bolton School of Nursing by Sara L. Douglas, PhD, RN, is examining aggressiveness of EOL care in advanced cancer among patients, family caregivers, nurses, and physicians.5
Approximately 2 months following the death of a loved one with advanced cancer, a phone interview is conducted with the bereaved family caregiver. The 13-item version of the Family Satisfaction with End-of-Life Care (FAMCARE-P13) scale asks the caregiver to rate responses to questions on symptom management, inclusion of family in treatment decisions, prognosis, healthcare provider (doctor and nurse) availability to the family, coordination of care, and overall satisfaction with care in the week preceding death.6 Family caregivers rate their level of satisfaction from “very satisfied” to “very dissatisfied.”6
Additionally, 2 open-ended questions ask family caregivers to discuss (1) aspects of care that may have caused them to think it was time to stop cancer therapy and focus on comfort and (2) if the care and treatment received was consistent with their loved one’s wishes. An advantage of assessing family caregiver satisfaction with EOL care both qualitatively and quantitatively is the ability to compare and relate both sets of data to gain a more accurate understanding of the caregiver’s perspective,7 including grief and bereavement outcomes among family caregivers following death. Bereaved family caregivers openly share their thoughts, lending insight that can inform future oncologic EOL research to provide clinical practice guidelines toward improving EOL experiences for patients and families.
IMPLICATIONS FOR ONCOLOGY NURSING
Oncology nurses are well positioned to make significant impacts in EOL satisfaction in advanced cancer. Preparation is key to improving EOL care experiences for these patients and their families. Oncology nurses can encourage patients and families to have conversations about EOL wishes early on, including discussions about patient and family values,8 which are often shared and can influence EOL decision making.
Oncology nurses can answer EOL-related questions and refer patients and families to appropriate resources such as chaplaincy, social work, or counseling services as needs are identified at any point on the disease trajectory—and even after death for the bereaved family. In doing this, nurses can help empower patients and families to initiate such conversations with each other and with healthcare providers, as well as reduce anxiety. Research shows that patients who engage in EOL conversations with their physicians are more likely to receive care that is consistent with their wishes, which can reduce suffering near the EOL.9
Encouraging patients and families to become comfortable with speaking about death can reduce psychological distress and bereavement and increase the likelihood that the medical care provided will be consistent with the patient’s personal preferences.10 Realizing one’s own mortality and how it can change outlook, perhaps even for the better, may also affect how caregivers plan for the end of their own lives.
In summary, the death of a loved one with cancer creates a void in the lives of family and friends left behind. One of the most salient memories in the minds of family caregivers involves the EOL experience of their loved one, followed by its impact on the grieving process. Future research should use oncology nurses, nurse researchers, and an interdisciplinary team to examine family caregiver satisfaction with EOL care provided, with bereavement outcomes measured over time. This will help identify specific areas that require more focus, with a goal of improving the EOL experiences for patients with advanced cancer and subsequently outcomes with their families.
Karen O. Moss, PhD, RN, CNL is a postdoctoral fellow, Frances Payne Bolton School of Nursing Case Western Reserve University, in Cleveland, Ohio.
Sara L. Douglas, PhD, RN is Arline H. & Curtis F. Garvin Professor and assistant dean for research, Frances Payne Bolton School of Nursing at Case Western Reserve University, Cleveland, Ohio.
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4. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673. doi: 10. 1001/jama.300.14.1665.
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8. Winter L. Patient values and preferences for end-of-life treatments: are values better predictors than a living will? J Palliat Med. 2013;16(4):362- 368. doi: 10.1089/jpm.2012.0303.
9. Mack JW, Weeks JC, Wright AA, et al. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010;28(7):1203-1208. doi: 10.1200/JCO.2009.25.4672.
10. National Cancer Institute. Planning the transition to end-of-life care in advanced cancer (PDQ)—health professional version. National Cancer Institute at the National Institutes of Health website. cancer.gov/ about-cancer/advanced-cancer/planning/end-of-life-hp-pdq. Updated March 1, 2017. Accessed September 28, 2017.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.