The place of death has been emphasized in palliative care research.1 Being in a preferred place when death occurs is recognized as an essential goal and a key component of what is considered a good death for patients receiving palliative care.2,3
In the last few decades, the rate of institutionalized deaths in many European countries has increased as home death rates decline or are at a standstill.4 While a planned home death is not desirable or feasible for everyone, it is important for healthcare professionals to advocate the patient's choice.5,6 Research shows that for patients suffering from severe illness, most of the final year of life is spent at home, and most patients would choose to die there.2,7,8 Still, there is a big discrepancy between the preferred and the actual place of death.9 In Europe, in contrast to patients’ preferences, the place of death is most often hospitals or nursing homes.8
Studies indicate that many patients express a desire to be cared for in their own home.10 A systematic review from 2015 concludes that it is unknown what proportion of patients prefers to die at home, due to the fact that studies often exclude the views of those with no preference or who have not been asked.11 Gomes et al.5 found clear evidence that home palliative care increased the chances of dying at home as well as reduced the patient's burden of symptoms at the end of life. Furthermore, they found that home-based palliative care more than doubled the chances of dying at home.5
The place where people die often reflects the nature of palliative care as well as demographic and epidemiological trends.12 In countries such as France, the United States, Ireland, and New Zealand, 30% of people 65 and over die at home.13 In other countries, such as Norway, Japan, Italy, and Portugal, the rate of home deaths is approximately 13%.12,14-16 Many European countries do not have a national register for planned home deaths. This means that the actual scope of this phenomenon is unknown. The 13% that die at home do so because of suicide, unplanned and planned death caused by frailty of health and accidental death in the home. This indicates that the rate of planned home deaths is far lower than the reported 13%. A study from 2018 points out that the rate of potentially planned home deaths could be less than half of the registered home deaths.17
Home care nurses, understood as a registered nurse providing nursing care in a home setting, play a vital role in facilitating planned home deaths as they assist with managing symptoms, providing caregiver support, assessing health concerns and have a coordinating function.18 Home care has changed in recent years due to the ageing population often suffering from chronic illnesses, with earlier hospital discharges and reforms seeking to enable people to live longer at home.19-21 Consequently, the number of patients with life-threatening illnesses who need palliative care at home has increased and will continue to increase, in addition to time constraints and responsibilities.20 It is widely accepted that rural areas in many countries suffer service shortfalls and clinical expertise deficits.22 Nurses in home care services often find palliative care challenging.23 According to Wilkes et al.,19 isolation and solitude are major stressors for home care nurses providing palliative care, particularly in rural areas. Home care nurses are essential actors in facilitating planned home deaths, but research points out that they tend to lack competence in caring for patients in need of palliative care.24
With decentralization of palliative care, as well as an increase in the elderly population, more people will be cared for in municipal home-based care and a growing number will spend their last days at home.20 Governments must develop and offer palliative care so that patients can stay at home for as long as possible, and potentially die at home.8 If high quality services are to be offered to patients wanting to die in their own home, home care nurses must be capable and confident in providing palliative care and facilitating planned home deaths.
We argue that home care nurses involved in facilitating planned home deaths can give valuable insights into the facilitators and barriers when providing care for patients wanting to die at home, and the aforementioned challenges call for further exploration of how home care nurses can facilitate planned home deaths. Home care nurses are essential to the provision of community palliative care services, but a search of the literature showed that there is sparse knowledge about how home care nurses facilitate planned home deaths.
Identifying and mapping the evidence on home care nurses facilitating planned home deaths will provide an overview of existing evidence and may also reveal what challenges home care nurses face in this area. This scoping review may contribute to the development of future interventions aimed at improving current practices, thus advancing evidence-based care. The results of this scoping review could generate new and important knowledge that can contribute to the development of future interventions to increase the possibility of planned home deaths for patients who want to die in their own home.
A preliminary search in PubMed found a recently published integrated literature review from 2019 by Rabbetts et al. on the lived experiences of nurses providing palliative care in rural settings to patients wanting to die at home.25 They reported that there was a lack of insight into the complexity of the work of nurses providing palliative care in patients’ homes, and further exploration was needed to sustain and improve palliative care for patients wanting to die at home.25 The review did not address issues of facilitating planned home deaths by home care nurses nor explore theories, methods, principles, components or outcomes described in the literature.
Although both qualitative and quantitative research has been conducted in the area of palliative care, a search in JBI Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews, and PROSPERO revealed that no up-to-date scoping review summarizing findings on home care nurses facilitating planned home deaths has been conducted or is underway.
The objective of this scoping review, therefore, is to identify and map existing evidence on home care nurses facilitating planned home deaths in the home care services, as well as to identify knowledge gaps important for further research on the topic.
- i) What theories, methods, principles, components, instruments, and outcomes of planned home deaths have been described in qualitative and quantitative literature?
- ii) What issues of facilitating planned home deaths by home care nurses have been explored in qualitative primary studies?
For the purpose of this review the authors will focus on home care nurses. This includes studies that focus on district nurses, community nurses, or home care nurses. In this scoping review protocol, home care nurse is understood as a registered nurse providing nursing care in a home setting to patients with a wide range of health and nursing needs, including palliative care and planned home deaths. There will be no limitations on patient diseases in this review, although included studies should address home care nurses facilitating planned home deaths for adults (over the age of 18) in home care services. Studies that focus on services other than home care nurses facilitating planned home deaths will not be included.
The concept of this review is facilitating planned home deaths. A planned home death is 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.”26(p.2)
This scoping review will consider planned home deaths in the context of home care services. This review will not consider studies in the context of nursing homes or deaths in institutions. Studies considered for inclusion will be limited to developed countries.
Types of sources
This scoping review will consider studies utilizing qualitative, quantitative, and/or mixed methods designs. In addition, systematic reviews and meta-analyses that meet the inclusion criteria will be considered. Theses and dissertations will be considered, as well as text and opinion papers and unpublished studies. Conference papers will not be included.
The proposed systematic review will be conducted in accordance with the JBI methodology for scoping reviews.27
The search strategy aims to identify peer reviewed primary research studies. A three-step search strategy will be utilized, as recommended by JBI.27 First, an initial limited search in PubMed and CINAHL was undertaken to identify articles on the topic, which includes search terms relevant to the topic. A university librarian was consulted when selecting appropriate search terms. Secondly, additional English text words contained in the titles and abstracts of relevant articles, as well as index terms were used. A preliminary search strategy for PubMed with the identified keywords is shown in Appendix I. Thirdly, the reference lists of included articles will also be searched to identify relevant studies. Studies published in English will be included.
The databases to be searched include MEDLINE (PubMed), CINAHL (EBSCO), Scopus (Elsevier) and Google Scholar. In addition, systematic reviews that meet the inclusion criteria will also be considered. These will be searched for in Cochrane Database of Systematic Reviews. Text and opinion papers will also be considered for inclusion in this scoping review. Unpublished studies will be searched for in ProQuest Dissertations and Theses.
Following the search, all identified citations will be collated and uploaded into EndNote X9 (Clarivate Analytics, PA, USA) and duplicates removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review. Potentially relevant studies will be retrieved in full and their citation details imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI; JBI, Adelaide, Australia).
The full texts of selected citations will be assessed in detail against the inclusion criteria by two independent reviewers. Reasons for exclusion of full text studies that do not meet the inclusion criteria will be recorded and reported in the scoping review. Any disagreements that arise between the reviewers at each stage of the study selection process will be resolved through discussion with a third reviewer. The results of the search will be reported in full in the final scoping review report and presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram.28
Data will be extracted from papers included in the scoping review by AKS using a data extraction tool developed by the reviewers. The data extracted will include specific details about the population, concept, context, study methods, and key findings relevant to the review objective. A draft charting table is provided (see Appendix II). The charting table will be modified and revised as necessary during the process of extracting data from each included study and updated accordingly. Modifications will be detailed in the full scoping review report. Authors of papers will be contacted to request missing or additional data, where required.
The extracted data will be presented in diagrammatic or tabular form in a manner that aligns with the objective of this scoping review. A narrative summary will accompany the tabulated and charted results, and will describe how the results relate to the review's objective and questions.
This scoping review is a part of a PhD project funded by Nord University, Bodø, Norway.
Appendix I: Search strategy
Preliminary search strategy for PubMed (January 2020)
((((((Home care nurs∗) OR Community nurs∗) OR Nursing) AND Home) AND end-of-life care) AND Palliative care) AND Home care services
Search date: 08.01.2020. Results: 1369
Appendix II: Data extraction form
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