Home-Based End-of-Life Nursing Care: A Scoping Review

The article “Nursing care to patients who have the home as the preferred place of death: a scoping review” by Sørstrøm, Kymre, and Ludvigsen (2024) provides a detailed exploration of the challenges and practices associated with nurses providing end-of-life care for patients who wish to die at home. This scoping review was undertaken because the existing literature on this critical subject was scattered and lacked a coherent overview, despite a growing demand for home-based end-of-life care due to an increasing elderly population. The authors aimed to systematically explore and categorize the available evidence, thereby enhancing the understanding of complexities surrounding access to end-of-life care in home care services, supporting evidence-based interventions, and potentially informing policies.

Methodology

The review employed a scoping review methodology, which was deemed suitable for systematically mapping the range of literature and identifying key concepts and types of available evidence. The methodology adhered to the Joanna Briggs Institute (JBI) guidelines for scoping reviews and was reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist.

Inclusion Criteria:

• Participants: Studies focused on nurses caring for adult patients (18 years or older) who had chosen home as their preferred place of death, regardless of diagnosis. This included home care nurses, district nurses, community nurses, visiting nurses, and primary care nurses. Studies focusing on other healthcare professionals were excluded.
• Concept: “Home as the preferred place of death” was understood as a “planned, expected home death where an individual has chosen to die at home with the support of family and plans have been clearly made and documented beforehand”. While home-based palliative care was considered, the review specifically focused on nursing care for patients with a documented preference for home as their place of death.
• Context: Studies were included if they focused on home care services, excluding other settings like nursing homes, long-term care facilities, or hospices.
• Types of Sources: The review considered qualitative, quantitative, and mixed-methods studies, systematic reviews, meta-analyses, PhD theses, dissertations, text and opinion papers, and unpublished studies. Conference papers were excluded, and only studies published in English were included.

Search Strategy:

• Databases: Five relevant databases were searched: MEDLINE (EBSCOhost), CINAHL (EBSCOhost), Scopus (Elsevier), and Google Scholar. Systematic reviews were specifically searched for in the Cochrane Database of Systematic Reviews, and unpublished studies in ProQuest Dissertations and Theses. Reference lists of included articles were also searched.
• Terms and Time: A preliminary search identified relevant MeSH terms, keywords, synonyms, and different terminologies, with a university librarian consulted for up-to-date search words. Searches were performed from November to January 2019 and updated in January 2024, with no time restrictions applied.

Study Selection and Data Analysis:

• All identified records were uploaded to EndNoteX9, duplicates removed, and then screened in Rayyan software. Titles and abstracts were independently screened by two reviewers. Full-text articles were then retrieved and comprehensively examined, with many requiring full-text review due to the fluidity of terms like “palliative care” and “home death”. Discrepancies were resolved through discussion among authors.
• Data extraction was conducted using a standardized form, charting general information such as authors, year, country, aim, study population, setting, methodology, and data collection.
• For qualitative data, an inductive qualitative content analysis was employed, identifying concepts and categorizing them according to the research question. This approach was chosen given the potential “dearth of evidence” on the subject matter.

The systematic searches initially yielded 1,472 records, with 13 studies ultimately deemed eligible for inclusion after screening and full-text review.

• Study Characteristics: These studies were published between 2008 and 2023, with the majority (n=11) being qualitative, and two combining qualitative and quantitative methods. They were conducted in the United Kingdom (n=5), Norway (n=4), Australia, Sweden, Canada, and Japan. The studies included a total of 443 nurses, though gender data was only provided in five studies.
• Key Challenges: The review identified five core issues relating to nurses’ care for patients preferring to die at home [4, 29, Table 2]:
  1. Competence:
     • Complexity of Care: Nurses frequently highlighted the complex nature of caring for dying patients at home.
     • Education Needs: Many nurses expressed a need for further education, especially in palliative care principles, pain, and symptom management. There were concerns that a lack of formal training could lead nurses to overlook fundamental palliative care philosophies, potentially continuing unnecessary invasive procedures.
     • Impact on Safety: Deficiencies in knowledge were perceived to jeopardize patient safety, with examples given of opioids not being appropriately prescribed or administered.
     • Experience Gaps: The intermittent nature of palliative care cases meant nurses often had long periods between caring for patients wishing to die at home, impacting their sense of clinical competence and desire for more practical experience.
     • Barriers to Training: Nurses reported difficulty accessing available training due to competing work roles, heavy workloads, geographical distances, and lack of “backfill” (replacement staff). While digital education was seen as useful, time constraints often prevented participation.
  2. Resource Limitations:
     • Staffing and Workload: Seven of the 13 studies identified resource limitations as a significant barrier [29, Table 2]. These included staff shortages, which resulted in stressful workdays, heavier workloads, and chronic challenges with recruitment and retention. This directly impacted the quality and effectiveness of care, sometimes leading to premature institutionalization of patients or even preventing patients from being offered the option of dying at home. The unpredictable nature of the workload further complicated matters.
     • Time and Equipment: Lack of time, often correlated with high workloads, and insufficient equipment were also consistently reported.
     • Rural Challenges: Studies from sparsely populated areas like Norway, Canada, and Australia highlighted unique challenges, including long driving distances, especially at weekends or holidays, which limited access to nurses at night. Patients in remote areas received fewer home visits, leading to perceptions of unfairness and inconsistent care. Delayed access to supplies and equipment was also a problem.
  3. Flexibility as a Coping Mechanism:
     • High Commitment: Despite challenges, nurses showed remarkable dedication and high levels of commitment to patients choosing home death. They found this type of care rewarding and experienced satisfaction from achieving a ‘good death’ for patients.
     • “Above and Beyond” Care: Nurses frequently mitigated resource constraints by going “above and beyond” their formal duties. This included working out of hours, skipping breaks, working overtime, making patient visits on days off, altering shift patterns, and even making personal sacrifices like rearranging holidays. Some nurses provided their personal phone numbers to patients or next of kin.
     • Innovative Adaptations: In some rural areas, healthcare resources were flexibly utilized, such as patients staying temporarily at nearby nursing homes or nursing home nurses providing care directly in patients’ homes.
  4. Collaboration:
     • Importance of Collaboration: Collaboration with other healthcare professionals, including general practitioners (GPs), referring hospitals, nursing homes, and palliative teams, was highlighted as important in 11 out of 13 articles [4, 42, Table 2].
     • Challenges in Coordination: However, collaborations were often challenging. Nurses expressed frustration with early and unprepared hospital discharges, especially when patients with a short life expectancy were discharged on Fridays, leaving nurses with insufficient information and unexpectedly complex cases.
     • Misunderstanding of Roles: Hospital staff were perceived to sometimes lack a comprehensive understanding of nurses’ responsibilities and capabilities in home care, potentially leading to unrealistic promises to patients and families. This could result in nurses having to disappoint families by explaining service limitations.
     • Lack of Safety Net: The absence of the “safety net” of the hospital environment at home could lead to “carer breakdown”. Consequently, having alternative plans, such as early discussions about transitioning to a nursing home or hospital, was deemed crucial.
     • Need for Support: Nurses often lacked formal support services to process their emotions and job-related pressures, relying primarily on informal support from their teams.
  5. Family Caregivers:
     • Crucial Role: The involvement of family caregivers was consistently highlighted as a major factor, with home death considered “almost unfeasible” without their participation [4, 39, Table 2]. Their willingness and bravery to stay with the dying patient were key elements for fostering a sense of safety.
     • Nurses’ Support Efforts: Nurses dedicated significant time and effort to support and educate family caregivers, helping them feel confident in their role and recognize changes in the patient’s condition.
     • Caregiver Burden: Despite support, a heavy burden was frequently placed on caregivers, who could become too exhausted or overwhelmed to continue providing care at home, even against the patient’s wishes. This often led to patients being transferred to nursing homes or palliative units. Patients might even contemplate altering their preferred place of death out of concern for their caregivers.
     • Lack of Formal Assessment: The review noted that none of the included studies described specific formal instruments for assessing caregivers’ capacity or needs, despite nurses recognizing and acknowledging these needs, often relying on intuition and experience.

The review highlights the critical need to address staff shortages, enhance nurse training to close knowledge gaps, and allocate adequate resources to ensure high-quality, consistent, and safe home-based end-of-life care. Strengthening interdisciplinary collaboration is also crucial to improve patient outcomes by supporting both nurses and family caregivers. Nurses often embrace palliative care principles that prioritize comfort, but insufficient formal training can lead to this being overlooked. The review also pointed out the underutilization of assessment tools for various aspects of patient well-being. The findings underscore that while nurses demonstrate remarkable dedication and often make personal sacrifices, persistent challenges like knowledge gaps, resource limitations, and communication breakdowns continue to hinder effective home-based end-of-life care. The crucial role of family caregivers and the need to address their burden and unmet needs are also paramount for enabling patients to die at home.

Overall, the review systematically maps the evidence, confirming that delivering nursing care for patients who prefer to die at home presents significant and ongoing challenges, despite the profound dedication of nurses. Addressing these persistent issues and strengthening support systems for nurses and family caregivers will be essential for improving end-of-life care in home settings.

Reference: Sørstrøm, A. K., Kymre, I. G., & Ludvigsen, M. S. (2024). Nursing care to patients who have the home as the preferred place of death: a scoping review. BMC Health Services Research, 24(1302). https://doi.org/10.1186/s12913-024-11757-8