Barriers and facilitators for place of death: A scoping review

Abstract

Objectives

Many factors influence where people die, but most people prefer to die at home. Investigating the factors affecting death at different locations can enhance end-of-life care and enable more people to die at their preferred place. The aim was to investigate barriers and facilitators affecting place of death and compare facilitators and barriers across different places of death.

Methods

A scoping review registered on Open Science Framework was conducted in accordance with the guidelines for Scoping Reviews (PRISMA-ScR). An electronic search of literature was undertaken in MEDLINE, EMBASE, PUBMED, PsycINFO, and CINAHL covering the years January 2013–December 2023. Studies were included if they described barriers and/or facilitators for place of death among adults.

Results

This review identified 517 studies, and 95 of these were included in the review. The review identified the following themes. Illness factors: disease type, dying trajectory, treatment, symptoms, and safe environment. Individual factors: sex, age, ethnicity, preferences, and for environmental factors the following were identified: healthcare inputs, education and employment, social support, economy, and place of residence.

Significance of results

The factors influencing place of death are complex and some have a cumulative impact affecting where people die. These factors are mostly rooted in structural aspects and make hospital death more likely for vulnerable groups, who are also less likely to receive palliative care and advanced care planning. Disease type and social support further impact the location of death. Future research is needed regarding vulnerable groups and their preferences for place of death.

Introduction

Understanding the complexity of the factors that lead to place of death is crucial for the provision of good end-of-life care. For many years, home death has been seen as an indicator of high-quality palliative care (Stajduhar and Davies 2005), and the general picture also shows that the majority of people wish to die at home (Ali et al. 2019; Fereidouni et al. 2021; García-Sanjuán et al. 2022; Gomes et al. 2013; Hoare et al. 2015; van Doorne et al. 2021; World Health Organization 2011). However, hospital is the most common place of death in Europe (Jarlbæk 2017; Jiang and May 2021; Orlovic et al. 2017) and Canada (Wilson et al. 2018), but the least preferred place to die along with care homes (Calanzani et al. 2014). Despite preferences for place of death, the number of home deaths is projected to decrease to less than 1 in 10 in 2030 in England and Wales, and the number of institutional deaths, such as deaths at care home or hospital, is expected to increase by 20% (Gomes and Higginson 2008). In recent years, there has been a growing emphasis on end-of-life decision-making and advanced care planning, involving discussions among patients, family members, caregivers, and healthcare professionals to anticipate future healthcare choices, including the preferred place of death (Abel et al. 2013; Burghout et al. 2023). A conceptual model developed by Gomes and Higginson identifies several key factors, which are determinants for place of death (Gomes and Higginson 2006). This model emphasizes how place of death is influenced by an interplay between illness-related-, individual-, and environmental-factors (Gomes and Higginson 2006), and it has inspired other studies within the field (Billingham and Billingham 2013; Burge et al. 2015; García-Sanjuán et al. 2022; Gomes et al. 2015). However, the Quality of Death and Dying Index finds that dying in the preferred place is less important than other aspects, for example managing pain or discomfort and being treated in a clean and safe place (Sepulveda et al. 2022). This challenges the perception of home death as one of the important indicators of a good death (De Roo et al. 2014; Pollock 2015). With the projected increase in institutional deaths, there is a pressing need for a deeper understanding of the factors influencing place of death to develop sufficient end-of-life care options (Gomes and Higginson 2008). Existing literature on factors influencing place of death is often focused on one specific place of death, such as home death (Balasundram et al. 2023; Bannon et al. 2018). Accordingly, this review aims to identify factors influencing death at home, hospice, care home and hospital. Hence, this review aims to identify barriers and facilitators affecting place of death and compare the factors across different places of death. By “facilitator” and “barrier,” the review identifies both actor driven factors such as preferences plus contextual and structural factors of importance for place of death such as illness and socioeconomic status.

Methods

Study design and registration

This scoping review is conducted in accordance with PRISMA-ScR guidelines for scoping reviews (PRISMA 2023). It is registered in Open Science Framework, accessible via the link https://doi.org/10.17605/OSF.IO/564ZA. There has been no quality assessment of the included studies.

Eligibility criteria

Studies were eligible for inclusion if they addressed barriers and/or facilitators concerning place of death, included adult patients (≥18 years), and focused regions within Europe, United Kingdom, and Canada. The restriction to these countries is due to their similar welfare systems. Studies were included if they were published between 2013 and 2023, and were written in English, Danish, Norwegian, or Swedish language. There were no exclusion criteria besides not fulfilling the predetermined criteria of inclusion.

Searches and information sources

The first author (TP) selected search terms in collaboration with VG and MR. TP conducted the final search with guidance from a librarian between January 2023 and February 2023. The search terms were divided into 3 search blocks. Each search was tailored to the specific database, and MESH terms were used if possible. The first block includes the search terms “wish” or “prefer.” The second includes “place of death,” “end-of-life,” “EoL,” “place of care.” The third block uses proximity operators when possible and includes the following search terms “home death,” “hospice death,” “hospital death,” “nursing home death,” or “care home death.” Each block is combined by the Boolean operator AND. An electronic search was undertaken in PubMed, CINAHL, EMBASE, PsycInfo, and MEDLINE. The searches were initially run on January 9, 2023. The final database searches were conducted on February 9, 2023. An additional search was conducted on December 13, 2023. The search string tailored for EMBASE can be seen in Table 1. The other searches are available on request of the corresponding author.

Table 1. Key search terms and example of search string

Study selection

For inclusion in the title/abstract screening, consensus between 2 independent reviewers was required. One reviewer (TP) assessed all titles/abstracts, while 2 reviewers (MR and VG) each evaluated half of the titles/abstracts for eligibility. In the full-text phase, TP reviewed all studies and consulted MR or VG in cases of uncertainty. Covidence was utilized during the screening process to remove duplicates, assist with title and abstract screening and register the reason for exclusion of studies. Quantitative, qualitative studies, and reviews were included.

Data charting process and data items

TP performed data extraction using a study specific data extraction form. The following data were extracted: first author and year, title, country of first author, countries discussed, study aim, and study design (Appendix 1). For the analysis data on barriers and facilitators for place of death was extracted.

Synthesis of results

The initial coding of the 95 included studies draws inspiration from Gomes and Higginson’s (2006) conceptual model, categorizing barriers and facilitators into illness-related-, individual-, and environmental factors. Subsequently, these factors for different places of death are further grouped using inductively inspired thematic coding, resulting in various subthemes. The coding of the illness factors yielded the following subthemes: disease type, dying trajectory, treatment, symptoms, and safe environment. Meanwhile, the coding of the individual factors led to the identification the following subthemes: sex, age, ethnicity, and preferences. Similarly, the coding of the environmental factors resulted in the following subthemes: healthcare input, education and employment, social support, economy, and place of residence. Tables 3–5 provide illustrations of the likelihood of each factor being associated with death at different places, along with the number of studies supporting the respective factor and place of death.

Results

Selection of source evidence

The database search revealed 1096 potential studies; 517 studies were initially screened for the appropriateness of title/abstract, with 97 studies subsequently included for full text screening resulting in 73 included studies. After assessing the reference lists of the included studies, 18 studies were included. The additional search in December resulted in inclusion of 3 studies. A total of 95 studies were included in the review. A PRISMA flow chart (Figure 1) outlines the selection process, including reasons for exclusion.

Figure 1. Flow chart screening process.

Characteristics of included studies

Appendix 1 presents the extracted data from the 95 included studies. Table 2 illustrates year published, number of studies, and the respective references for the included studies. Hence 30 studies were published between 2013 and 2015, 27 studies between 2016 and 2018, 29 studies between 2019 and 2021 and 9 studies between 2022 and 2023. Most of the included studies are quantitative (n = 74), followed by qualitative (n = 11), reviews (n = 8), and mixed methods design (n = 2).

Table 2. Characteristics of included studies

Synthesis of results

Illness factors

Table 3 illustrates how different types of illness affects place of death. Cancer types, including lung, brain, prostate, and colorectal cancer, are grouped together due to their similar effects on place of death. Overall, the review indicates that having cancer tends to facilitate death at home (Cabañero-Martínez et al. 2019; Costa et al. 2016; Houttekier et al. 2014; Hunt et al. 2014a; Kamisetty et al. 2015; Nilsson et al. 2020, 2021; Quinn et al. 2020; Sayma et al. 2020; Sleeman et al. 2014). However, hematological cancer is a barrier for home death (Gao et al. 2013; McCaughan et al. 2018; Öhlén et al. 2017; Raziee et al. 2017), but a facilitating factor for hospital death (Gao et al. 2013; Howell et al. 2017, 2013; McCaughan et al. 2018, 2019; Öhlén et al. 2017; Sheridan et al. 2021). The illness trajectory for hematological cancer often involves aggressive treatment up to death (McCaughan et al. 2019). Hematological patients who discuss preferred place of death are more likely not to die in hospital, whereas those who do not discuss preferred place of death, or those who receive hematological treatment close to death are more likely to die in hospital (Howell et al. 2017). Additionally, hematological patients are less likely to receive palliative care and advanced care planning, which facilitates death in hospital (Howell et al. 2017; McCaughan et al. 2019). Moreover, diseases of the digestive system (Cabañero-Martínez et al. 2019), the respiratory system (Gomes et al. 2018; Kalseth and Halvorsen 2020; Orlovic et al. 2020; Sleeman et al. 2014), liver disease (Cabañero-Martínez et al. 2019; Gomes et al. 2018; Houttekier et al. 2014; Jordan et al. 2023), HIV/AIDS (Cabañero-Martínez et al. 2019; Gomes et al. 2018), kidney disease (Lovell et al. 2017), tumors, (Cabañero-Martínez et al. 2019) and ALS (Domínguez-Berjón et al. 2015) increase the likelihood of death in hospital. However, irrespective of disease type, close relationships with healthcare staff and feeling safe in hospital are factors leading the patient to prefer care and death in hospital (Howell et al. 2017, 2013; McCaughan et al. 2018, 2019; Sheridan et al. 2021). Table 3 also highlights differences in the dying trajectories. For example, having more hospital days prior to death (Gomes et al. 2015; Jiang and May 2021; Kern et al. 2020; Varani et al. 2015) or receiving life-prolonging treatment (Campos et al. 2022; Oosterveld-Vlug et al. 2018; Reyniers et al. 2016) are associated with hospital death. Additionally, patients with open awareness of dying are more likely to die at home (Hunt et al. 2014b; Kern et al. 2020; Nysæter et al. 2022; Pooler et al. 2018) as opposed to late recognition of dying (McCaughan et al. 2019), they are more likely to die at home rather than hospital.

Table 3. Illness factors associated with place of death

Individual factors

Table 4 presents an inconclusive evidence regarding gender differences in place of death. Concerning age there appears to be a tendency indicating that lower age makes hospital death more likely (Cabañero-Martínez et al. 2019; Gomes et al. 2018; Houttekier et al. 2014; Luta et al. 2016; Martinsson et al. 2020; Nolasco et al. 2020), whereas older age increases the likelihood of death in a care home (Black et al. 2016; Dixon et al. 2019; Domínguez-Berjón et al. 2015; Houttekier et al. 2014; Kalseth and Halvorsen 2020; Kamisetty et al. 2015; Livingston et al. 2013; Luta et al. 2016; Sheridan et al. 2021; Sleeman et al. 2014; Wales et al. 2020). Being non-whiteor belonging to an ethnic minority decreases the likelihood of dying at home or in hospice and increases the chance of dying in hospital (Cabañero-Martínez et al. 2019; Higginson et al. 2013; Jiang and May 2021; Koffman et al. 2014). While variations in place of death for different ethnicities are not extensively investigated, they may be attributed to differences in preferences influenced by culture or access to palliative care (Sharpe et al. 2015). Overall, expressed preference appears to play a significant role in determining place of death by increasing the likelihood of home death (Brogaard et al. 2013; Costa et al. 2016; Dixon et al. 2019; García-Sanjuán et al. 2022; Gomes et al. 2015; Hunt et al. 2014a; McCaughan et al. 2018; Neergaard et al. 2019; Nysæter et al. 2022; Rasch-Westin et al. 2019; Sayma et al. 2020; Schou-Andersen et al. 2016; Seal et al. 2015; Sheridan et al. 2021; Wales et al. 2018). Conversely, not having a preference or unknown preference are factors that increase the likelihood of hospital death (Abel et al. 2013; Ahearn et al. 2013; Burghout et al. 2023; Dixon et al. 2019; Howell et al. 2017; Kern et al. 2020; McCaughan et al. 2019; Orlovic et al. 2020).

Table 4. Individual factors associated with place of death

Environmental factors

Table 5 identifies various environmental factors impacting the place of death. For instance, receiving palliative care (Archibald et al. 2021; Balasundram et al. 2023; Bannon et al. 2018; Brogaard et al. 2013; Burge et al. 2015; De Roo et al. 2014; Dixon et al. 2019; Gage et al. 2015; Gomes et al. 2015; Higginson et al. 2013; Johnson et al. 2018; Kern et al. 2020; Ko et al. 2014; Larsen et al. 2020; Pooler et al. 2018; Quinn et al. 2020; Tanuseputro et al. 2018; Varani et al. 2015; Wahid et al. 2018; Wye et al. 2016) and/or advanced care planning (Ahearn et al. 2013; Archibald et al. 2021; Burghout et al. 2023; Driller et al. 2022; Pooler et al. 2018; Sayma et al. 2020; Skorstengaard et al. 2020; Wahid et al. 2018) increases the chances of dying at home, whereas not receiving palliative care (Nieder et al. 2016) and/or advanced care planning (Ahearn et al. 2013; Burghout et al. 2023; Dixon et al. 2019; Howell et al. 2017; Kern et al. 2020; McCaughan et al. 2019; Orlovic et al. 2020) increases the chance of dying in hospital. Social factors such as living with others (Brogaard et al. 2013; Cai et al. 2021; Costa et al. 2016; Dixon et al. 2019; Gao et al. 2013; García-Sanjuán et al. 2022; Guerriere et al. 2015; Higginson et al. 2013; Houttekier et al. 2014; Neergaard et al. 2019; Pinzon et al. 2013), being married or having a partner (Cai et al. 2021; Houttekier et al. 2014; Öhlén et al. 2017), or having a family caregiver (Archibald et al. 2021; Costa et al. 2016; Ervik et al. 2023; Gomes et al. 2013; Kern et al. 2020; Ko et al. 2014; Pooler et al. 2018; Sayma et al. 2020; Wahid et al. 2018) increase the likelihood of home death. Whereas, living alone (Ahearn et al. 2013; Houttekier et al. 2014; Lovell et al. 2017), being single, widowed, or divorced (Domínguez-Berjón et al. 2015; Gao et al. 2013; Nilsson et al. 2021; Nolasco et al. 2020) increase the possibility of hospital death. The absence of a family caregiver or when family caregiving is experienced burdensome decrease the possibility of home death (Bannon et al. 2018; de Graaf et al. 2016; Kern et al. 2020; O’Sullivan and Higginson 2016; Sayma et al. 2020; Seal et al. 2015; Wahid et al. 2018). Residence in rural areas is associated with higher likelihood of dying at home (Houttekier et al. 2014; Jayaraman and Joseph 2013; Kern et al. 2020; Neergaard et al. 2019; Nilsson et al. 2020) as opposed to hospital (Cabañero-Martínez et al. 2019; Dasch et al. 2015; Gomes et al. 2018; Luta et al. 2016; Öhlén et al. 2017), while urban residents are more likely to die in hospital (Dasch et al. 2015; Gomes et al. 2018; Håkanson et al. 2015; Houttekier et al. 2014; Luta et al. 2016; Nilsson et al. 2020; Öhlén et al. 2017) rather than at home (Dasch et al. 2015; Håkanson et al. 2015; Kern et al. 2020; Neergaard et al. 2019). Some of these differences might be explained by urban residents living closer to hospital as opposed to rural residents (Kalseth and Halvorsen 2020; Ziwary et al. 2017). Additionally, living in non-deprived or affluent areas increases the chance of dying at home (Bannon et al. 2018; Dixon et al. 2019; Gao et al. 2013; Neergaard et al. 2019; Raziee et al. 2017; Sleeman et al. 2014), whereas living in deprived or non-affluent areas increases the chance of a hospital death (Davies et al. 2021; Neergaard et al. 2019; Nolasco et al. 2020; Ziwary et al. 2017), and lowers the chance of home death (Gao et al. 2013; Higginson et al. 2013; Sleeman et al. 2014). Higher education (Gisquet et al. 2016; Houttekier et al. 2014; Nilsson et al. 2021), income (Neergaard et al. 2019; Schou-Andersen et al. 2016), and socioeconomic status (Sharpe et al. 2015) increases the likelihood of home death, and decreases the chance of hospital death (Davies et al. 2021; Van Spall et al. 2021), whereas lower income (Wales et al. 2020) and socioeconomic status (Domínguez-Berjón et al. 2015) increases the likelihood of hospital death, and decreases the chance of home death (Higginson et al. 2013; Schou-Andersen et al. 2016; Wales et al. 2020).

Table 5. Environmental factors associated with place of death

Discussion

This scoping review found evidence for a complex network of factors that impact place of death. It reveals how various diseases, such as hematological cancer or undergoing active treatment, influence where individuals die (McCaughan et al. 2018). However not all the identified diseases were well investigated. The review shows a tendency toward hospital death for people that have not expressed a preference for place of death (Abel et al. 2013; Ahearn et al. 2013; Burghout et al. 2023; Dixon et al. 2019; Howell et al. 2017; Kern et al. 2020; McCaughan et al. 2019; Orlovic et al. 2020), have not engaged in advanced care planning (Ahearn et al. 2013; Burghout et al. 2023; Dixon et al. 2019; Howell et al. 2017; Kern et al. 2020; McCaughan et al. 2019; Orlovic et al. 2020), and have not received palliative care (Nieder et al. 2016). Conversely, hospital death is more likely for those with an expressed preference for hospital death, those having a good relationship with healthcare staff, and feeling safe at hospital (Howell et al. 2017, 2013; McCaughan et al. 2018, 2019; Sheridan et al. 2021). In general patients’ expressed preferences seem to have a strong influence on place of death, especially for home death (Brogaard et al. 2013; Costa et al. 2016; Dixon et al. 2019; García-Sanjuán et al. 2022; Gomes et al. 2015; Hunt et al. 2014a; McCaughan et al. 2018; Neergaard et al. 2019; Nysæter et al. 2022; Rasch-Westin et al. 2019; Sayma et al. 2020; Schou-Andersen et al. 2016; Seal et al. 2015; Sheridan et al. 2021; Wales et al. 2018). Home death is positively influenced by family caregivers having the same preference as their loved one (Bannon et al. 2018; Gomes et al. 2015; Kern et al. 2020; Pinzon et al. 2013; Sayma et al. 2020), having a strong social support system and living with others (Brogaard et al. 2013; Cai et al. 2021; Costa et al. 2016; Dixon et al. 2019; Gao et al. 2013; García-Sanjuán et al. 2022; Guerriere et al. 2015; Higginson et al. 2013; Houttekier et al. 2014; Neergaard et al. 2019; Pinzon et al. 2013). Nonetheless, caring for a loved one at home can be experienced burdensome for family caregivers, causing physical, psychosocial, and financial stress (Stajduhar 2013; Wahid et al. 2018). Consequently, home death may not always be a possibility even though home death the preferred place of death.

This review most clearly indicates that being white, having higher income, higher socioeconomic status, higher education, and stronger social support increases the chances of dying at home (Neergaard et al. 2019; Schou-Andersen et al. 2016; Sharpe et al. 2015), and that not holding these privileges decreases the chance of a home death (Higginson et al. 2013; Schou-Andersen et al. 2016; Wales et al. 2020), and increases the possibility of a hospital death (Domínguez-Berjón et al. 2015; Wales et al. 2020). The factors linked to these social advantages are also linked with an increased possibility of dying in the preferred place of death. Hence studies find how higher socioeconomic status (Gao et al. 2013; Gisquet et al. 2016; Wales et al. 2020), living with others (Brogaard et al. 2013; Cai et al. 2021), being in a relationship (García-Sanjuán et al. 2022) is found positively associated with congruence between preferred and actual place of death. The influence of socioeconomic status can partly be explained by the ability to purchase additional home care services, which enables a preferred death at home (Wales et al. 2018). Moreover, people with higher socioeconomic status are more likely to have conversations about death and advance care planning directives (Hoare et al. 2015), which may influence the higher levels of congruence between preferred and actual place of death.

Another factor of importance is the impact of ethnicity in relation to place of death. The impact of ethnicity is discussed in a systematic review by Gomes et al., and raises questions about equity and equal access to both palliative care and advanced care planning for vulnerable groups and people from ethnic minority groups (Gomes and Higginson 2006). As pointed out by Stajduhar (2020) being privileged increases the chance of receiving palliative and end-of-life care, assistance with advanced care planning, support for family caregivers, and increases the likelihood of dying in the preferred place. Despite the positive association between privilege and preferred place of death, it also needs to be acknowledged that home death is not always the preferred or optimal place of death, even though there has been a tendency to regard home death as the gold standard (De Roo et al. 2014; Pollock 2015). As Pollock (2015) notes a death is not necessarily good just because it occurs at home. Home death can also be associated with feelings of loneliness, being inadequately supported, having poor symptom control, being distressed and fearful (Pollock 2015). By contrast, death in hospital can be peaceful and with sufficient pain and symptom management (Howell et al. 2017; McCaughan et al. 2019; Orlovic et al. 2020). The Quality of Death and Dying Index reveals that symptom management is a factor of utmost importance near the end-of-life (Sepulveda et al. 2022). Therefore, we suggest that when advance care planning occurs, appropriate consideration should be given to the place in which symptoms can be best managed. As Pollock (2015) warns, assumptions that home is the best place of death risks denying the patient what might actually be best for them.

Limitations

The categorization of barriers and facilitators into illness-, individual-, and environmental factors is seen in other studies within the field (Burge et al. 2015; García-Sanjuán et al. 2022; Gomes et al. 2015; Neergaard et al. 2019). However, the strength of this review is the investigation of different places of death that sheds light on how vulnerable groups are in risk of experiencing inequities related to access to palliative care and advanced care planning. This potentially denies them the expression of preference and may determine their place of death. Some limitations need to be considered when interpreting the results. First, the review included studies across Europe, United Kingdom, and Canada due to their similar welfare systems, however they are not fully comparable which may cause some of the identified barriers and facilitators to be more or less relevant. Second, the consequence of grouping barriers and facilitators into the most or least likely place of death leaves limited space for showing detailed results of the included studies. However, this is considered helpful to provide a clear picture of this complex field.

Implication for future research

We suggest further research is urgently needed regarding the relationship between socioeconomic status, advanced care planning, palliative care, and place of death. This research should take into account how preference for place of death and actual place of death are determined. In addition, further attention is needed to discuss the ethical imperative behind the ideal of home death as the optimal place to die, and to investigate “good” deaths in other places.

Conclusion

In conclusion, this scoping review has demonstrated the complexity of factors influencing where people die. Several of these factors are rooted in structural conditions that work to restrict the access of underprivileged persons to end-of-life care and an opportunity to express their preferred place of death. Focusing on symptom management in addition to place of death may contribute to allow more people to receive sufficient end-of-life care and death in the best place possible.