Bereavement Assessment Practice in Hospice Settings: Challenges for Palliative Care Social Workers

The management and delivery of bereavement support services in palliative care settings presents practical and ethical challenges. A national survey, conducted in 2007, examined bereavement practice in ten Marie Curie hospices across the United Kingdom. This qualitative study was undertaken using semi-structured telephone interviews with Bereavement Service Leaders located in each hospice. Although findings revealed that bereavement services were in operation and had been reviewed in response to the National Institute for Clinical Excellence Guidance (2004), and all bereaved families were offered support, there was no standardisation of service delivery across sites. Multi-disciplinary team meetings facilitated shared decision-making for bereavement follow-up, and expanded and clarified documentation completed by nursing staff around the time of the patient’s death. However, there was ambiguity regarding professional ‘duty of care’ and agency responses to bereaved individuals who were suicidal. Questions were raised around clinical effectiveness, reliability and professional accountability. The study highlighted ethical issues centred on documentation, user participation and consent, and found staff training was variable across the 10 hospices. The findings have informed the development of a post-bereavement service model which has been subsequently implemented across Marie Curie Cancer Care.

International Association for Hospice and Palliative Care (IAHPC) List of Essential Practices in Palliative Care

The objective of this study was to identify, through a consensus process, the essential practices in primary palliative care. A three-phase study was designed. Phase 1 methods included development of a working group; a literature review; development of a baseline list of practices; and identification of levels of intervention. In Phase 2, physicians, nurses, and nurse aides (n = 425) from 63 countries were asked in three Delphi rounds to rate the baseline practices as essential or nonessential and select the appropriate levels of intervention for each. In Phase 3, representatives of 45 palliative care organizations were asked to select and rank the 10 most important practices resulting from Phase 2. Scores (1-10) were assigned to each, based on the selected level of importance. Results of Phase 1 were a baseline list of 140 practices. Three levels of intervention were identified: Identification/Evaluation; Diagnosis; and Treatment/Solution measures. In Phase 2, the response rates (RR) for the Delphi rounds were 96.5%, 73.6%, and 71.8%, respectively. A consensus point (=80% agreement) was applied, resulting in 62 practices. In Phase 3, RR was 100%. Forty-nine practices were selected and ranked. "Evaluation, Diagnosis and Treatment of Pain" scored the highest (352 points). The working group (WG) arranged the resulting practices in four categories: Physical care needs, Psychological/Emotional/Spiritual care needs, Care Planning and Coordination, and Communication. The IAHPC List of Essential Practices in Palliative care may help define appropriate primary palliative care and improve the quality of care delivered globally. Further studies are needed to evaluate their uptake and impact.

Assessing the need for and potential role of a day hospice:A qualitative study

We conducted a qualitative case study as part of a needs assessment for a day hospice in a small Ontario city. Data were gathered from semi-structured interviews with 28 stakeholders: nine health care administrators, 11 health care providers, and eight lay people (terminally ill adults and informal caregivers). Respondents described support, counselling, social activities, and respite as key day hospice services. They also described several barriers to accessing services, including location, transportation, admission criteria, referrals, and fees. For most respondents, the ideal staff mix includes both volunteers and paid professionals in either a free-standing organization or institutionally linked hospice. Although the vast majority of participants were reluctant to impose admission criteria or other limitations on hospice clientele, they expressed the need to ensure equitable access to this scarce resource. Opinions varied greatly across stakeholder groups, highlighting the need to collect information from ail relevant stakeholder groups when planning hospices.

Hospice at Home service:The carer's perspective

Goals of the work: The aim of this study was to explore the bereaved caregivers' experience of the Hospice at Home service delivered in one region of the UK. Materials and methods: Three hundred and ten bereaved caregivers identified by the Community Specialist Palliative Care Team or Hospice at Home nurse, who met inclusion criteria, were sent a postal questionnaire to explore their views and experiences of the Hospice at Home service. Data were collected during 2002. Main results: In total, 128 caregivers responded, providing a 41% response rate. Most caregivers believed that the Hospice at Home service enabled their loved one's wish to be cared for and to die at home to be fulfilled. A number of suggestions were made relating to increased awareness of the service, training for staff, coordination of service delivery and bereavement support. Conclusions: The bereaved caregivers were thankful for the Hospice at Home service; however, the need for practical support, increased awareness of the Hospice at Home service and bereavement support were also identified. Although the bereaved caregivers provided a valuable insight in evaluating service provision, it is acknowledged that some caregivers are often so grateful for the treatment and care received that they tend to forget or ignore their less pleasant experiences. Further research is therefore required using an in-depth qualitative approach investigating on the carers' views and experiences of accessing the Hospice at Home service. © 2006 Springer-Verlag.

How does involvement of a hospice nurse specialist impact on the experience on informal caring in palliative care? Perspectives of middle-aged partners bereaved through cancer

The aim of this study was to retrospectively explore partners' understandings and experiences in relation to caring for a loved one with a terminal illness, with a particular focus on the role of the hospice nurse specialist (HNS). Participants were purposively sampled and recruited through HNS gatekeepers. Seven middle-aged, bereaved partners participated in semi-structured, qualitative interviews. The interviews were audio recorded and transcribed verbatim and data were analysed using thematic content analysis. Five main themes emerged regarding the impact of the HNS on informal caring: ‘the ambivalence of caring’, ‘the HNS as a “confidante” in caring’, ‘the HNS as a “champion” in support’, ‘the work of the HNS – an unseen benefit’ and ‘being prepared for death and bereavement’. Findings from this study offer new insights into how involvement of a HNS impacts on the ability of carers to perform their role as an informal caregiver. Results highlight a crucial need for carers to have a clear understanding of all aspects of the HNS role so that full benefit is derived from their input. Recruitment of experienced and knowledgeable nurses is paramount, but equally important for carers is the supportive aspect of the role for which nurses need to demonstrate excellent communication skills and an intuitive, caring approach.