The Experiences of Family Caregivers at the End of Life: Suffering, Compassion Satisfaction and Support of Health Care Professionals

Abstract

A death with dignity is influenced by the quality of care offered to patients. The objective of this study was to identify, through the firsthand experiences and insights of family caregivers, the key elements related to the care offered to patients with a terminal illness at the end of life. This multicenter qualitative study was based on the paradigm of hermeneutic phenomenology. Participants were relatives of patients with terminal illness who had been identified as primary caregivers. Five discussion groups and 41 in-depth interviews were organized with a total of 81 participants. The content of the interviews was analyzed based on the methods developed by Giorgi (J Phenom Psychol 1997;28(2):235-260). The results indicate the existence of 3 dimensions: the caregiver’s suffering, compassion satisfaction with the care provided, and the support of health care professionals. Understanding the experiences of family members providing end-of-life care allows improved care and provides dignity in death. Health and social systems must provide comprehensive assistance covering the different aspects of needed care. Health professionals occupy a privileged position in the care of these patients and their families.

“It was terrible, I didn’t sleep for two years”: A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life

“…While occasional overnight respite care is helpful, to better support the wellbeing of hospice family caregivers, clinicians should routinely screen for sleep issues among caregivers regardless of live-in status and offer interventions and services that better support caregiver sleep needs. 73 In our study, caregivers were reluctant to take pharmaceutical drugs that promote sleep, a finding also observed by Lee et al in their study of cancer caregivers in Taiwan. 27 Another mixed method study of 40 community dwelling older adults supports these results; half of the participants had negative beliefs about sleep medications such as fear of death, addiction, and grogginess.…”

Caregivers’ Experience of End-of-Life Stage Elderly Patients: Longitudinal Qualitative Interview

“…The findings of this study provide support for the need to extend the outreach nursing support for the EOL case, taking the UK as reference, to provide education, psychological support, and care to enhance family solidarity as well as reduce caregiver’s burden. Healthcare professionals play a significant role in caregivers’ experience at the end of life because professionals’ support can take the pressure off the shoulders of caregivers and can be a gateway to obtain resources [ 35 , 36 , 37 ].…”

“…Caregivers reported unpleasant experiences during the phase of dying and death, mainly due to feelings of incapability and loss. These feelings made it difficult for caregivers to detach themselves from their expected role and face the longing and emptiness they experienced following the loss of their family member [ 37 ]. Reinforcing this finding, our study highlights the perception by these caregivers that they are unable to perform their expected role due to the poor progression of illness at the terminal stages of EOL care.…”

Identifying Core Domains to Assess the “Quality of Death”: A Scoping Review

“…This burden can be reduced through formalized and professional support, including both training for informal caregivers and professional home-based caregiving, which is integrated into the referral system. 40,235,236 The former is especially needed in rural areas where professional services are limited. 143 Caregiver support can address the complex (e.g., managing medical regimens) and continuous nature of care as well as the caregiver burden itself.…”

“…101 The unavoidable caregiver burden on family and loved ones can also be eased by "networks and relations of support" 238 that help reduce caregiver vulnerability 95 and address caregiver suffering that may relate to loneliness of care or overburden of caregiving. 236 This can be particularly helpful for working caregivers 128 and the unique reported needs of parents experiencing the loss if a child. 47,239,240 Support systems also have the potential to break down certain social boundaries and raise awareness around dying and death.…”