Abstract
Background
The demand for end-of-life care will rise significantly in coming decades due to increasing life expectancy and the growing burden of chronic diseases. Palliative care aims to support patients’ preferences to remain at home (both for ongoing care and, when possible, to die). The feasibility of dying at home is shaped by a complex interplay of patient factors, the capacity of family caregivers, and the availability of home care teams and community resources. Healthcare professionals, especially nurses, are pivotal in accommodating patient preferences, and are uniquely positioned to influence the quality and feasibility of end-of-life care. A deeper understanding of their specific interventions, particularly for patients in their last days and their families, is essential to inform practice, education, and policy.
This review aims to synthesise the available evidence, identify effective nursing interventions, highlight knowledge gaps and inform nursing practice, education and policy at an international level.
Methods
This mixed-methods systematic review will be conducted according to the updated methodology of the Joanna Briggs Institute and reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The search will be conducted in PsycINFO, MEDLINE, CINAHL ULTIMATE, Web of Science and Mediclatina, with no date or language restrictions. Two reviewers will independently screen data, assess methodological quality using appropriate appraisal tools, and extract data using standardized forms. Quantitative and qualitative findings will be integrated through a convergent approach.
Discussion
Nursing interventions in the last days of life are complex and multifaceted, critically influencing patient’s comfort, dignity and quality of life, as well family experience. However, accurately identifying and defining is challenging due to variability in terminology and conceptual boundaries, particularly in studies that focus on the “last days of life”. This variability may limit comparability across studies and highlight the need for greater conceptual clarity to guide research, practice, and policy.
Trial registration
Systematic review registration: PROSPERO CRD420251112044
Supplementary Information
The online version contains supplementary material available at 10.1186/s13643-025-03012-w.
Keywords: Caregivers, Home nursing, Nursing, Palliative care, Systematic review, Terminal care, Terminally ill
Background
Healthcare needs are evolving rapidly due to increased life expectancy and the growing prevalence of chronic diseases. As a result, the demand for end-of-life care is expected to rise substantially, with the Organisation for Economic Co-operation and Development (OCDE) projecting that by 2050, approximately 10 million individuals globally will require such care [1].
This demographic shift is reshaping the landscape of palliative care, a multidisciplinary approach that aims to relief suffering and improve quality of life for patients with serious illnesses and their families [2, 3]. A central goal of palliative care is to support patients remain where they most prefer to be (both for care and, when possible, for dying) which, for many, is at home. This preference is highlighted by a recent umbrella review, which indicate that both patients with life-threatening illnesses and their family caregivers frequently identify home as the preferred place for end-of-life care and death, with meta-analyses reporting preferences between 51 and 55% [4].
Enabling patients to stay at home as they approach the end of life relies on a complex set of factors that affect both the feasibility and the quality of home-based end-of-life care [4–10]. While comfort and quality of life are pivotal outcomes in palliative care, evidence indicates that home care services can yield significant benefits for patients and their families, including better support for caregivers, better preparation for care, person-centered care, greater family satisfaction with the care provided, and reduced use of health services (fewer hospital admissions, visits to emergency services, and shorter hospital stays) [11–14]. However, the chance of achieving a home death is influenced by several factors that interact throughout the end-of-life trajectory [4].
Patient-related elements (such as symptom burden, functional status, personal preferences, and readiness to remain at home) are often the initial determinants of whether home care is feasible [4, 11, 15]. At the same time, the presence, well-being, capacity, and willingness of family caregivers are equally crucial, as these individuals frequently shoulder the emotional, spiritual and practical responsibilities of supporting care at home [5, 6, 13, 16]. When caregivers experience distress or lack adequate support, the sustainability of home-based care can be compromised, sometimes resulting in unplanned hospitalizations or transitions to institutional care [17]. Overlaying these personal and familial dynamics, the organization and accessibility of health services, including the availability of home care teams, community resources, and timely professional support, can further enable or limit the possibility of being cared and dying at home [18]. Recognizing and addressing the complex interaction among patients, family caregivers, and system-level factors is essential to delivering end-of-life care that truly aligns with individual preferences and needs, although home care and home death are not always feasible or even desirable for everyone [1].
In fact, despite the strong preference for home, most deaths still occur in hospitals, with OECD data showing that in 2021, 50% of deaths across 35 countries took place in hospital settings, though this represents a relative decline from previous years [19]. Additionally, complementary data from a recent population-based study covering 32 countries confirm that, while home deaths are increasing in some regions, hospital remains the most common place of death for older adults, especially among those with complex needs [20]. This persistent gap between preference and reality underscores the need to better understand and support home-based end-of-life care. Within this context, healthcare professionals play a critical role in accommodating patient preferences when home care is a viable option [21].
Among these professionals, nurses are uniquely positioned to make a significant impact on the quality and feasibility of home-based end-of-life care [22]. Whether referred to as district nurses, community nurses, home care nurses, or other titles depending on the country and healthcare system, these healthcare professionals often serve as the foundation of home care [23, 24]. They provide comprehensive support addressing physical, psycho-spiritual, socio-cultural, and environmental needs by managing symptoms, administering medications, offering emotional and spiritual support, educating families, and facilitating communication among patients, families, and the wider healthcare team [25–29]. Moreover, the emergence of innovative care models, coupled with rapid advances in digital health technologies and the integration of artificial intelligence, is fundamentally reshaping home-based care delivery. Nurses and multidisciplinary teams now face a transformative landscape that demands advanced competencies, adaptive skills, and highly collaborative approaches to meet evolving patient needs [22, 30]. Given the increasing scarcity of healthcare resources, especially in palliative care [31] and recognizing that nurses are highly qualified professional [22, 32] it becomes essential to gain a deeper understanding of the specific interventions they deliver in home-based care. Such knowledge is crucial for optimizing resource management and ensuring timely, effective responses to patient needs, ultimately enhancing the quality and efficiency of care provided at home.
Despite the recognized importance of nursing role in home-based end-of-life care, significant gaps remain in the literature, especially for patients in their last days of life. While nurses play a pivotal role throughout the palliative trajectory, the final days present unique challenges and care needs for both patients and their families, often requiring rapid responses, complex symptom management, and heightened emotional and spiritual support [25–29]. However, most existing studies have focused primarily on inpatient settings, leaving a limited synthesis of evidence regarding the specific range, characteristics, and effectiveness of nursing interventions delivered at home during this critical period. Moreover, robust outcome measures, such as patient and family satisfaction, caregiver well-being, and the prevention of avoidable hospitalizations, are frequently absent, which makes it difficult to fully evaluate the impact of these interventions in the home setting. A preliminary search of PROSPERO, the Cochrane Database of Systematic Reviews, and JBI Evidence Synthesis did not identify any ongoing or completed reviews focused specifically on nursing interventions for patients and their family caregivers at home in the last days of life.
Given the rising demand for home-based end-of-life care, the evolving role of nurses, and the need for context-sensitive, evidence-based interventions, this systematic review is both timely and necessary. It aims to synthesize the available evidence, identify effective nursing interventions, highlight knowledge gaps, and inform nursing practice, education, and policy internationally. The findings will support advocacy for improved resource allocation, interdisciplinary collaboration, and the integration of innovative care models and technologies in home-based end-of-life care.
Aim and review questions
This mixed-methods systematic review aims to comprehensively synthesize and critically appraise the available quantitative and qualitative evidence on nursing interventions delivered at home for patients in the last days of life and their family caregivers. The review seeks to identify and classify effective interventions, clarify their primary targets and contextual factors, and highlight knowledge gaps, thereby providing evidence-based insights to inform and advance nursing practice, education, and policy internationally.
The following questions will be addressed:
What is the full spectrum of nursing interventions provided at home to support patients in their last days of life and their family caregivers, and what are their intended purposes?
Who are the primary targets of these interventions (patients, family caregivers, or both)?
How do nursing interventions vary according to sociodemographic, clinical, or contextual factors (e.g., patient age, diagnosis, cultural background, healthcare setting)?
What is the reported effectiveness of these interventions regarding patient and family caregiver outcomes?
Methods and analysis
This mixed methods systematic review will be conducted following the updated Joanna Briggs Institute (JBI) methodology for mixed methods systematic reviews, as outlined in the JBI Reviewer’s Manual [33]. The review will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [34]. The protocol was developed according to the PRISMA-P (Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols) guidelines [35], and the completed PRISMA-P checklist is provided in the supplementary material (Appendix 1). The protocol was prospectively registered in PROSPERO (Registration number CRD420251112044). The review questions may be addressed by quantitative, qualitative, and mixed methods studies, as long as the outcomes corresponding to each outcome can be extracted and analyzed independently. The anticipated start date for this study is 1 September 2025, with an expected completion date of 31 December 2025. Any amendments to the protocol during the review process will be transparently documented and justified in the final published article.
Inclusion criteria
Types of participants
This review will consider studies involving adult patients (aged ≥ 18 years) in the last days of life, irrespective of gender, race, ethnicity, and/or their family caregivers.
For the purposes of this review, a “patient in the last days of life” refers to an individual experiencing the final phase of life-limiting illness, typically predictable and marked by an observable decline over days to a few weeks. This stage is characterized by increasing deterioration evident from day to day, weakness, reduced mobility (predominantly bed-bound), decreased oral intake, changes in consciousness or cognition, and often emotional or social withdrawal [36, 37].
Considering this, and based on previous research [38], studies will be included if they explicitly describe participants as being in the last days, final days, or actively dying phase, or if they refer to individuals in the last hours of life, the agonic phase, or use terms such as “imminent death.” Studies will also be considered if the population is defined by a prognosis of days to weeks to live, as determined by healthcare professionals or recognized clinical tools, or if the study setting or context is specific to end-of-life care at home with a focus on the final days of life.
Studies focusing on patients with a longer prognosis (weeks to months) or general palliative care populations without clear reference to the last days of life will be excluded, unless data specific to the last days can be extracted.
Concerning family caregivers, and for the purpose of this review, the concept of “family” adopted in this review goes beyond traditional definitions based on marital, biological, or legal relationships and includes other significant individuals (e.g., friends, neighbours, or legal representatives) as previously defined by the patient [5, 26]. Primary studies focusing solely on formal care providers will be excluded.
In cases where there is uncertainty regarding whether the study population fits these criteria, disagreements will be resolved by consensus among the review team or, if necessary, the study authors will be contacted for clarification.
Phenomenon of interest
This review will consider studies investigating nursing interventions directed at individuals in the final days of life, as well as nursing interventions aimed at their family caregivers.
For the purposes of this review, nursing interventions are defined as actions, activities, behaviours, treatments, or strategies carried out by nurses to support patients in the last days of life and/or their family caregivers that assist the patient in achieving the desired outcomes. When identifying these interventions, we will consider both autonomous interventions (those performed independently by nurses, based solely on their own knowledge and clinical judgement, grounded in evidence-based practice) and interdependent interventions (those carried out collaboratively with other professionals to achieve a common goal, based on action plans previously established by multidisciplinary teams of which the nurse is a member, with the nurse responsible for deciding on their implementation) [39].
To ensure consistency in study selection, we will include studies that explicitly describe the intervention as being delivered by a nurse or as part of nursing care, regardless of whether the intervention is autonomous or interdependent. Studies will also be included if the intervention is labelled as a “nursing intervention” in the methods or results, or if the role of the nurse in implementing the intervention is clearly specified (for example, interventions delivered by nurses within multidisciplinary teams, or interventions where the nurse is responsible for planning, initiating, or coordinating care). Only interventions delivered in the home care setting, will be considered, irrespective of whether the nurse is part of a specialist palliative care team or another type of healthcare team.
Studies where it is unclear whether the intervention was delivered by a nurse or whether the intervention fits the operational definition will be discussed among the review team and, if necessary, the study authors will be contacted for clarification. Studies focusing solely on interventions delivered by other professionals, or where the nurse’s role cannot be determined, will be excluded.
Whenever possible, nursing interventions identified in the included studies will be classified and grouped for sub-analysis according to the full spectrum of interventions, type (such as autonomous or interdependent), purpose (for example, symptom management, comfort, education, psychosocial or spiritual support, or family advocacy), associated outcomes, and the professional profile of the provider (e.g., specialist palliative care nurse or generalist nurse). This approach will allow for a more detailed understanding of the range and impact of nursing interventions provided at home to patients in the last days of life and their family caregivers.
Context
This review will consider studies investigating nursing interventions carried out in the home care setting. Although the definition of “home” encompasses a broad spectrum of environments, including private residences, long-term care facilities, hospices or other community setting for the purposes of this systematic review, only studies referring to the home as a private residence (whether belonging to the patient, a family member, or a significant other) will be included. This includes dwellings owned or rented by the patient, a family member, or a significant other, where the patient resides in a non-institutional context [4, 26, 40].
Studies conducted in institutional settings such as nursing homes, long-term care facilities, hospices, hospitals, prisons, or any environment providing institutional-level care will be excluded, even if these institutions are based in the community.
Studies describing “home care” or “home-based care” will be screened for explicit reference to a private residence or similar non-institutional dwelling; if the setting is unclear or could include institutional environments, the review team will discuss and resolve by consensus, or the study the authors will be contacted for clarification.
Types of studies
We will include primary research studies employing quantitative, qualitative, and mixed methods designs. Quantitative studies will encompass experimental and quasi-experimental designs, including randomized controlled trials, non-randomized controlled trials, analytical cross-sectional studies, case-control studies, case reports, case series, and cohort studies. Qualitative studies will include phenomenology, grounded theory, ethnography, or action research designs. Mixed methods studies will be included only if data from the quantitative and/or qualitative components can be clearly extracted and analyzed separately.
Conference abstracts, review articles, editorials, study protocols, and ongoing studies will be excluded. Additionally, studies lacking sufficient methodological detail or results will not be considered.
No restrictions will be applied regarding publication date or language.
Uncertainties or disagreements will be resolved by team consensus or, when needed, by contacting study authors.
Search strategy
A preliminary search limited to MEDLINE and CINAHL ULTIMATE was conducted to identify articles on the topic, followed by a screening of titles and abstracts. This process informed the development of a search strategy that includes natural language terms and indexing terms/subject headings, which will be adapted for each information source. The search strategy for MEDLINE (via Ovid) is presented in the supplementary material (Appendix 2). This strategy will be adapted for other databases.
Primary studies will be searched in five electronic databases:
PsycInfo (from 1806 to August 31 2025) via Ovid;
MEDLINE (from 1946 to August 31 2025), via Ovid;
CINAHL ULTIMATE (from 1981 to August 31 2025), via EBSCOhost;
Web of Science (from 1997 to August 31 2025), via Ovid.
Mediclatina (from 2000 to August 31 2025), via EBSCOhost;
Additionally, the reference lists of identified articles will be screened to locate further relevant studies, as well as grey literature repositories such as Dans EASY. Searches will also be conducted in CORDIS, the primary source of research outcomes funded by the European Commission (https://cordis.europa.eu/), and the Agency for Healthcare Research and Quality (https://www.ahrq.gov/). As part of the grey literature search strategy, relevant authors with expertise in the field will be contacted to identify additional unpublished or ongoing studies.
Study selection
Records retrieved from the search will be organized and managed using Rayyan software, and duplicate articles will be removed before screening. Two independent reviewers will screen the titles and abstracts of identified articles for relevance to the review. Any disagreements will be resolved through discussion between the reviewers and, whenever needed, by consulting a third reviewer. Articles deemed potentially eligible for inclusion will be retrieved in full text and assessed in detail against the inclusion criteria by the same two independent reviewers. Reasons for exclusion of full-text articles not meeting the inclusion criteria will be documented. The study selection process and results will be reported comprehensively in the final review and presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram [34].
Quality appraisal
The methodological quality of the studies will be independently assessed by two reviewers. Eligible studies will be appraised for methodological quality before inclusion, using the standardized critical appraisal tools from the JBI, according to the study design [41]. For quantitative studies (and quantitative component of mixed methods studies), relevant JBI checklists will be used; e.g.,Critical appraisal checklist for randomized controlled trial [42]; Critical appraisal Checklist for Quasi-Experimental Studies [43]; Critical appraisal Checklist for cohort studies [44]; Critical appraisal Checklist for case-control studies [44] or others depending on the quantitative study design. Qualitative studies (and qualitative component of mixed methods studies) will be appraised using the JBI Critical Appraisal Checklist for Qualitative Research [45], which evaluates criteria such as credibility, reflexivity, and data analysis rigor. For mixed methods studies, we may alternatively use the Mixed Methods Appraisal Tool [46], depending on which is most appropriate.
Authors of the articles will be contacted to request missing data or additional clarifications, if necessary. Any disagreements between the two reviewers will be resolved through discussion or by involving a third reviewer. The results of the critical appraisal will be reported narratively and presented in a table. The influence of study quality on the review findings will be explored in the analysis and discussion. Studies will not be excluded solely based on methodological quality, but sensitivity analyses may be conducted to assess the impact of lower-quality studies on the review’s conclusions.
Data extraction
Quantitative and qualitative data will be extracted from the included studies by two independent reviewers, using a standardized data extraction form, based on the JBI Mixed Methods Data Extraction Form following a Convergent Integrated Approach, and adapted as needed to suit the specific study design [33]. The data extraction form will be pilot-tested independently by both reviewers to ensure consistency and clarity.
The following information will be extracted: (a) general study information: author(s) and year of publication, country where the study was conducted, study design; (b) participants characteristics: number of participants (patients and/or family caregivers), sociodemographic characteristics (e.g., age, gender, relationship to patient), clinical characteristics (e.g., diagnosis, stage of illness); (c) home care team characteristics: setting to validate the intervention occurred in a private residence/home, type of home care team (e.g., specialist palliative care team, generalist team, or other), training and professional background of the nurses involved (e.g., palliative care specialist nurse, generalist nurse, or other); (d) nursing interventions: description and classification of nursing interventions, type of intervention (autonomous or interdependent), purpose/objective of the intervention (e.g., symptom management, comfort, education, psychosocial support, spiritual support, family advocacy), timing and mode of implementation (e.g., direct vs. indirect, frequency, duration), target population (person in the last days of life, family caregivers, or both) and outcomes associated with the intervention (e.g., patient comfort, symptom relief, family satisfaction, quality of dying, caregiver burden).
For quantitative studies, data extraction will focus on the main results, including descriptive and inferential statistics, as well as effect sizes and confidence intervals when these are reported. For qualitative studies, the extraction will include the main themes and subthemes relevant to the review question, supported by direct quotations or other data from the articles to preserve the context of the findings. Only qualitative data considered to have sufficient credibility (meaning they are adequately supported within the study) will be included in the synthesis, while data deemed “unsupported” will be excluded. This approach ensures that data extraction remains as close as possible to the information reported in the primary studies, in line with current JBI guidance for mixed methods systematic reviews [33].
Any disagreements between reviewers during data extraction will be resolved through discussion, or if necessary, by a third reviewer. Authors of the studies will be contacted to request missing or additional data when necessary.
Data transformation, data synthesis, and integration
In these mixed-methods systematic review, the review questions can be addressed through both qualitative and quantitative studies; therefore, an integrated convergent approach is followed for synthesis and integration. Within this approach, qualitative and quantitative data are synthesized through data transformation. To this end, quantitative data will be transformed into “qualified data” by converting them into textual descriptions and narrative interpretations, thus enabling direct responses to the review questions (33). The same process will be applied to the quantitative components of mixed methods studies. The resulting “qualified data” will be combined with qualitative data extracted directly from qualitative studies. Reviewers will conduct a thorough examination of the integrated data to identify categories based on similarity of meaning. Each category may encompass two or more initial categories, whether qualitative data, “qualified” data, or a combination of both. These categories will subsequently be aggregated to generate the overall conclusions of the review through thematic synthesis. Data will be presented in tabular form, reflecting the information extracted from the included studies. Any additional significant findings emerging from the studies will be reported narratively.
Patient and public involvement
Patients and the public will not be involved in the design, conduct, or reporting of this systematic review, as the study is based exclusively on published literature. While patient and public involvement is considered good practice [47], it is not feasible in this project due to the nature and scope of the review. This limitation is acknowledged, and the review will adhere to established methodological standards for systematic reviews [33].
Ethics and dissemination
Ethical approval will not be required as this is a protocol for a mixed-methods systematic review of previously published articles. The findings and results of this review will be submitted for publication in a peer-reviewed journal.
Discussion
Nursing interventions in the last days of life represent a complex and multifaceted phenomenon that is crucial for ensuring comfort, dignity, and quality of life for patients and their families [28]. However, precisely defining and identifying these interventions is challenging due to variability in terminology and conceptual boundaries.
For instance, one of the main operational challenges anticipated in this mixed-methods systematic review is the difficulty in precisely identifying studies that focus on the “last days of life”. The literature often refers to broader concepts such as “end of life”, which can encompass periods ranging from the last year to the last 6 months, making it challenging to isolate evidence specific to the final days and hours. However, this conceptual ambiguity represents a significant gap in the field and is a key reason for conducting this review.
Similarly, defining “home care” may be complex, as the meaning of “home” varies across individuals, cultures, countries, and studies [4, 40]. For example, while some patients may consider places like convents or prisons as their home, for this review, only private residences will be included, excluding institutional environments regardless of the personal significance attributed by patients. This distinction is essential for understanding the organization and delivery of nursing care.
Another important challenge relates to the diversity and variation in the scope of nursing practice across countries, particularly regarding the role of advanced practice nurses and their prescribing authority. In some countries, advanced nursing practitioners are authorized to independently prescribe medications and order diagnostic tests, while in others, nursing roles remain more restricted and such activities require medical oversight or are not permitted at all [22]. This heterogeneity can significantly affect the nature and autonomy of nursing interventions described in the literature, as well as the way some nursing interventions are classified.
To address this, it will be essential to extract and report as much contextual information as possible about the professional background, level of training, and scope of practice of the nurses involved in each study. Whenever necessary, study authors will be contacted for clarification. This approach will help ensure accurate interpretation of the findings and allow for meaningful comparisons across different healthcare systems.
Additional operational challenges include the heterogeneity of study designs, variability in the description and reporting of nursing interventions, and differences in outcome measures and participant characteristics. These factors may complicate data synthesis but will be addressed through careful methodological strategies such as subgroup analyses and transparent reporting. Such diversity can complicate data synthesis and limit the comparability of findings. To address this, we will employ methodological strategies such as subgroup and sensitivity analyses, and we will transparently report and discuss the sources and impact of heterogeneity whenever possible. Additionally, the lack of standardized reporting of nursing interventions, unclear attribution of nurses’ roles within multidisciplinary teams, and incomplete data on participant demographics or outcomes may require contacting study authors for clarification and may restrict the depth of synthesis.
Despite these challenges, this review addresses a highly relevant and underexplored topic. To our knowledge, it will be the first to systematically synthesize evidence on nursing interventions for patients and families in the last days of life at home. The findings will be valuable for optimizing resource allocation at a time when the need for palliative care is increasing [1], and when most patients prefer to receive care and die at home [4], despite limited access to specialized palliative services and often late referrals [1].
By mapping and analyzing the range and nature of nursing interventions, including their degree of autonomy, required expertise, and impact on both patients and family caregivers, this review will help inform clinical practice, resource allocation, and policy development. It will also highlight the often-overlooked needs of family caregivers in the final days and hours and identify key gaps for future research.
Supplementary Information
Acknowledgements
The authors would like to thank Isabel Andrade (Head Librarian at Nova National School of Public Health, Universidade Nova de Lisboa) for her contribution to the development of the search strategy.
Authors’ information
This is a research project that is part of the first author’s doctoral study, developed at the Nursing School of Lisbon/University of Lisbon.
Abbreviations
- OCDE
Organisation for Economic Co-operation and Development
- JBI
Joanna Briggs Institute
Authors’ contributions
ML and SP formed the review team and designed the study. GM was consulted and provided advice and assisted with the study design. All authors read and approved the final manuscript. SP is the guarantor of the review.
Funding
Open access funding provided by University of Lisbon. The authors received no financial support for the research, authorship, and publication of this article.
Data availability
Data sharing is not applicable to this article, as no datasets were generated or analyzed during the current study.
Declarations
Ethics approval and consent to participate
Not applicable.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
Footnotes
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Data Availability Statement
Data sharing is not applicable to this article, as no datasets were generated or analyzed during the current study.