Family and Friends Dealing With Hospice Care and Bereavement of Relative

Healthcare professionals have long identified bereavement services as being an important part of palliative care. Yet, families and friends of terminal patients have diverse palliative care support needs as well as effective communication between caregivers and the bereaved, and practicable support interventions (Woodman et al., 2016; Caserta et al., 2016). Particularly, Studies demonstrate that there are disparities between palliative care clinical guidelines and practices, the outcomes they aim to deliver and the perceptual feedback of the bereaved on the effectiveness of palliative care bereavement support (Auon et al., 2017; Abel & Kellehear, 2016; Caserta et al., 2016; Woodman et al., 2016). Addressing specific disparities that include time and resource constrains, clear communication and the application of clinical best practices on grief support can improve bereavement services. 

Studies show that although clinical guidelines include bereavement support, the application of the guidelines remains wanting. Research drawn from a number of clinical settings with diverse participant, patient and program specifications show the extent to which bereavement services are available within the palliative care context as well as limitations in the delivery of the services. 

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Literature Review, Findings and Implications

First, Snaman et al.’s (2016) study looked at the bereavement support that grieving families received (p. 2757). The study focused on grieving families that had lost a child to cancer, identifying the gaps in provision bereavement services and suggesting areas of improvement. The study involved 11 bereaving parents that it divided into two focus groups (Snaman et al., 2016). The study required participants to respond to the 3 prompts fielded, with a facilitator recording the parents’ responses on audio (Snaman et al., 2016). The prompts dwelt on how the participants coped with grief prior to the passing of the patients under their care, the participants’ experience of grief after loss, and suggestions for service improvement. The two focus groups the facilitator divided participants into were predominantly female and white, with both characteristics reflecting 82% of the sample. The two focus groups had lost a child an average of 6 years and 4.8 years respectively (Snaman et al., 2016). 

The study established that healthcare providers have a critical role to play in supporting families and friends during the administration of palliative care and after the loss of terminally ill patients (Snaman et al., 2016). In particular, collaboration between care providers, families and friends before and after the loss of a patient was useful in enhancing psychosocial support for bereaving family members. The study also identified timely and open communication as integral to the effective delivery of bereavement services (Snaman et al., 2016). Respecting communication, the participants highlighted the need for candid feedback from care givers on pivotal information such as prognostication as well as anticipatory guidance in approaching end of life decisions. 

The second study is McAdam and Erikson’s (2016) analysis of the availability of bereavement services during the period terminal patients are actively receiving palliative care in adult intensive care units (p. 111). The study highlighted existing gaps in bereavement services that families and friends of patients have access to during and after procedures in an intensive care setting (McAdam & Erikson, 2016). The study involved nurse leaders, defining the same as nurses that took on additional supervisory, specialist, and administrative tasks. Underpinning the selection of nurse leaders was the need to acquire representative perspectives on bereavement practices as opposed to eliciting multiple perspectives from individual nursing staff (McAdam & Erikson, 2016). 

237 nurses responded to the survey that comprised of questions whose design was the elicitation of responses from clinical professionals (McAdam & Erikson, 2016). The questionnaire comprised of two sections with the first section addressing variables such as the care provider demographics and intensive care practices (McAdam & Erikson, 2016). The design of the second section of the questionnaire made provisions for both the availability and absence of bereavement services, devoting 13 questions for ICUs offering bereavement services and 5 for those not offering support (McAdam & Erikson, 2016). The responding nurse leaders were from a variety of hospitals that include public, private, academic and community healthcare providers from across the United States. 

The study found that different healthcare givers differed in their delivery of bereavement services, with each institution offering a mix of bereavement services. For example, the study found that over a third, or 37.6%, of adult ICUs offered bereavement services, with close to half of the participants acknowledging that staff nurses were the primary bereavement service givers (McAdam & Erikson, 2016). The study also found that nurses delivered bereavement services through the dissemination of material such as brochures and condolence cards and telephone calls (McAdam & Erikson, 2016). Notably, the responses drawn from nurse leaders at various healthcare facilities revealed disparities in the administration of and resources allocated to the delivery of bereavement services (McAdam & Erikson, 2016).

The study also established that hospitals with bereavement programs were more likely to offer bereavement support to family and friends with terminal patients compared to hospitals without programs (McAdam & Erikson, 2016). To illustrate, the research revealed that though clinical best practice guidelines made provisions for bereavement services, only 38% of the ICUs the study evaluated offered some variant of bereavement follow-up (McAdam & Erikson, 2016). Further, the respondents noted that bereavement follow-up was largely passive, involving the offer of brochures and condolence cards. The study noted that the lack of funding for the programs and reimbursement for staff offering bereavement services alongside the limited the extent to which staff could offer comprehensive bereavement support (McAdam & Erikson, 2016). Additionally, offering comprehensive bereavement services requires specialized training and as well as more time, detracting from the ICU staffs’ scope of practice. 

Thirdly, Auon et al. (2017)’s study focused on the bereavement support that grieving families received. The study design was an anonymous postal survey that included 1,139 responses from participants sourced from 6 funeral homes across four states in Australia (Auon et al., 2017). The study included participants who were coping with the loss of a relative or friend for over a period of 6 to 24 months. Of the 1,139 responses from the participants, the study focused on 506 participants who lost relatives or friends to terminal illness (Auon et al., 2017). 

The postal survey included an 8 section questionnaires with 82 questions, with the questions approaching bereavement from both a service provider and the participants’ perceptive on the extent and effectiveness of bereavement support received (Auon et al., 2017). The study employed descriptive statistics using a variety of approaches such as chi-square, manual coding and nonparametric tests (Auon et al., 2017). Of the 506 participants, only 298 acknowledged their deceased relative or friend had access to palliative care while 208 participants admitted that their late relative or friend did not receive palliative care (Auon et al., 2017). The participants included those that lost relatives or friends to cancer as well as those with patients suffering from other life-limiting illnesses such as organ failure, lung disease, heart conditions, and dementia.

The study profiled the respondents according to gender, mean age, marital status, relationship, direct involvement with the care of the terminal patient, hands-off support for terminal patient, and median duration of care (Auon et al., 2017). Additionally, the study evaluated the participants’ access of bereavement support services and included professional, community and informal sources (Auon et al., 2017). The study found that of the respondents that received palliative care support after the loss of a relative or friend, 51.2% reported receiving all the assistance they required while 13.2% indicated they did not need the support (Auon et al., 2017). There remaining 34.7% participants felt that the care they received was inadequate vis-à-vis their bereavement needs. 

The family and immediate friends of cancer patients in particular receive higher pre-bereavement support compared to other patients such as those with terminal conditions such as dementia and heart disease (Auon et al., 2017; Abel & Kellehear, 2016). An important aspect of the study was in aligning the questions to extant palliative clinical practices (Auon et al., 2017). This approach enabled the study to determine the extent to which the caregivers and health service providers applied palliative best practices. Of importance is that the study framed the questions in a manner that participants could readily comprehend while linking responses to clinical best practices. The study established that the availability of pre-bereavement support services for families and relatives of terminally ill patients improved the formers’ capacity to deal with the passing away of the patients (Auon et al., 2017). Specifically, timely pre-bereavement support enabled families and friends to improve their psychological readiness to deal with the impeding distress associated with the loss of relatives with life threatening conditions. 

Integrating pre-bereavement support for the family and friends during the care of terminal patients receiving palliative care and subsequent post-bereavement follow-up can improve palliative care support outcomes (Abel & Kellehear, 2016; Woodman et al., 2016). Presently, research on bereavement only evaluates theoretically underpinned intervention methodologies (Caserta et al., 2016). Addressing the pre-bereavement preferences of family and friends’ is integral to improving palliative clinical practices (Woodman et al., 2016). In particular, adapting intervention approaches to meet the needs of the families and friends of terminally ill patients, both before and after bereavement (Caserta et al., 2016). 

Summary

A review of literature reveals that a number of factors continues to hamper the delivery of effective bereavement and follow-up support services (Caserta et al., 2016; McAdam & Erikson, 2016). These include staff shortages, time constraints, the difficulty in identifying the bereavement needs of the affected family and friends, lack of education, low confidence levels in administering bereavement services, limited funding and so forth (McAdam & Erikson, 2016; Aoyama et al., 2017; Abel & Kellehear, 2016).

In conclusion, the foregoing studies suggest that caregivers can improve pre-bereavement service outcomes by firstly improving communication. Engaging family and friends during the administration of palliative care for the terminally ill patients and subsequent post-bereavement follow-ups can improve service outcomes. Additionally, by improving the resources they make available for bereavement support services, healthcare providers can overcome limitations such as time and staffing constrains affecting service delivery. Finally, bridging clinical best practice guidelines with the feedback families and friends offer can improve the responsiveness of bereavement programs to the unique needs of the grieving family members and friends. 

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