Introduction
Relatives (family and other people, such as friends) play a crucial role in providing palliative care (PC) at home (Burns et al. Reference Burns, Abernethy and Dal Grande2013; Gomes and Higginson Reference Gomes and Higginson2006; Hudson and Payne Reference Hudson and Payne2011; Zavagli et al. Reference Zavagli, Raccichini and Ostan2022). Increased life expectancy and technological advances in treatment and symptom control are enabling more people to be cared for and die at home (Wilson et al. Reference Wilson, Caswell and Turner2018), and home care has become increasingly advanced, placing greater demands on the knowledge of relatives (National Board of Health and Welfare 2021). As the proportion of people receiving care and dying at home is expected to increase, the responsibility of relatives to provide end-of-life care at home for their loved ones may become more extensive in the future (Hellström et al. Reference Hellström, Sandberg and Hanson2017; Wilson et al. Reference Wilson, Caswell and Turner2018). As a result, adequate support for relatives is important in PC. Despite this, relatives have unmet support needs and would benefit from additional support (Ahn et al. Reference Ahn, Romo and Campbell2020; Becqué et al. Reference Becqué, Rietjens and van der Heide2021; Bee et al. Reference Bee, Barnes and Luker2009; Funk et al. Reference Funk, Stajduhar and Toye2010).
Support for relatives is a fundamental component of PC (Hellström et al. Reference Hellström, Sandberg and Hanson2017; National Board of Health and Welfare 2021), and relatives should be supported before and after a patient’s death (National Board of Health and Welfare 2013; Regional Cancer Centres in collaboration 2021; World Health Organization 2002). The support for relatives should be person-centered (Diffin et al. Reference Diffin, Ewing and Harvey2018). Despite this, relatives do not receive the support they need either before or after a patient’s death (Aoun et al. Reference Aoun, Rumbold and Howting2017; Becqué et al. Reference Becqué, Rietjens and van der Heide2021; Hoffstädt et al. Reference Hoffstädt, Boogaard and Tam2022; Morris et al. Reference Morris, King and Turner2015; O’Sullivan et al. Reference O’Sullivan, Alvariza and Öhlén2021), and support for relatives needs improvement (Hudson Reference Hudson2013). Support can be provided in many ways and involves, for example, informative, emotional, and practical support (Hellström et al. Reference Hellström, Sandberg and Hanson2017; National Board of Health and Welfare 2013, 2016). Information and counseling calls are examples of important support actions. Relatives should also be informed about the possibility of using the available cash benefit for the care of closely related persons (National Board of Health and Welfare 2021; Regional Cancer Centres in collaboration 2021). This is financial compensation for a relative who gives up paid work to be with a dying loved one (Regional Cancer Centres in collaboration 2021).
Many people would like to receive PC and end their lives at home (Ando et al. Reference Ando, Ninosaka and Okamura2015; Cai et al. Reference Cai, Zhang and Guerriere2020; Gomes et al. Reference Gomes, Calanzani and Gysels2013; Higginson et al. Reference Higginson, Gomes and Calanzani2014), and a large part of PC is provided at home (Cai et al. Reference Cai, Zhang and Guerriere2020; National Board of Health and Welfare 2016). In high-income countries, 69%–82% of those who die are in need of PC (Murtagh et al. Reference Murtagh, Bausewein and Verne2014). In Sweden, more than 90,000 people die each year, and about 80% of them are considered to need PC. About half of the people in need of PC in Sweden spend the last period of their lives in some form of home care (National Board of Health and Welfare 2016; The Swedish Register of Palliative Care 2019). Many people who die in hospitals or nursing homes have also often received a longer period of PC at home beforehand, so the place of death does not necessarily reflect the efforts made by relatives at home (Hellström et al. Reference Hellström, Sandberg and Hanson2017). PC includes general and specialized PC. In home care, many people receive general PC rather than specialized PC, which health professionals with basic knowledge of PC usually provide (Regional Cancer Centres in collaboration 2021). The conditions for supporting relatives involved in general PC at home can be limited and challenging (Regional Cancer Centres in collaboration 2021), and there are deficiencies in the support provided to relatives when PC is provided at home (Mohammed et al. Reference Mohammed, Swami and Pope2018; Morris et al. Reference Morris, King and Turner2015).
Since previous research has identified that relatives involved in PC have unmet support needs and there is sparse research regarding support for relatives after a patient’s death, this study aimed to describe the support provided by health professionals before and after a patient’s death to relatives involved in general PC at home.
Methods
Study design and participants
This study was a register study with a cross-sectional design. Data were collected from the Swedish Register of Palliative Care (SRPC). The study population consisted of adult relatives who had been involved in general PC at home. Relatives who responded to the survey were divided into 3 groups based on the type of relative (see Table 1). There was no information about the gender distribution of the relatives, although the gender of the deceased patients was evenly distributed (50.6% women, 49.4% men).
Table 1. Overview of the respondent’s characteristics (n = 160)
Data collection and the surveys
The data were obtained from the SRPC, a national quality register in Sweden that was established in 2005. The SRPC aims to improve end-of-life care for patients and their relatives for all deaths regardless of diagnosis, gender, age, or place of death. The SRPC has 2 surveys – one for health professionals and the other for relatives – to assess how general or specialized PC has been provided in different health-care settings. The surveys aim to improve end-of-life care for patients and their relatives and serve as a research basis. In addition to support for relatives, the surveys also cover topics on disease that caused the death, information to the patient, the patient’s care needs, and symptoms and symptom relief. Health professionals invite relatives to answer the survey a period of time after a patient’s death, at the latest within 3 months from the date of death.
The data were requested and delivered de-identified. The data were collected between March 2016, when the survey for relatives was introduced, and March 2022. In total, 160 completed surveys from relatives who had been involved in general PC at home during this period, and 160 related surveys answered by health professionals were received. There is no information about how many surveys were sent to relatives throughout this period, but statistics from SRPC, however, show that between January 2021 and March 2022, a total of 2115 surveys were sent to relatives in different health-care settings, of which 818 surveys (38.7%) were answered. Of these 2115 surveys, 97 surveys were sent to relatives involved in general PC at home, of which 40 surveys were answered (41.2%). The surveys from SRPC were adjusted during 2020, in the start of the pandemic COVID-19. The adjustments of the survey for relatives concerned questions about symptom and symptom relief, and some of the questions related to support were adjusted in terms of formulation and developed response alternatives (see Table 2). Both the 2016 and 2020 versions were included in this study. The survey from 2016 consisted of 23 questions, and the survey from 2020 consisted of 21 questions. However, only the questions about support to relatives were requested from the SRPC – 8 questions from the 2016 survey and 7 questions from the 2020 survey. The data from 3 questions from the survey answered by health professionals were also requested for comparison with the data from the survey answered by relatives. Of the health professionals who had responded to the survey, 99% were nurses and 1% were doctors or other health professionals. See Figure 1 for an overview of how many questions were used from the surveys.
Table 2. Description of the questions used from the surveys
Q = question.
Figure 1. Overview of how many questions were used from the surveys.
Data analysis
The data were processed in IBM SPSS version 28.0.1.1. Data were analyzed using descriptive statistics, and percentages were determined. A comparison of the answers between groups of relatives and between relatives and health professionals was done. To compare the questions and answers from the 2016 and 2020 surveys, some question and response alternatives were merged. The questions with 5-point scale response alternatives were merged into 3-point scale response alternatives – “very satisfied” and “satisfied” were merged into “satisfied” and “a bit unsatisfied” and “very unsatisfied” were merged into “unsatisfied.” Both the questions and the response alternatives to questions 2 and 3 from the 2016 and 2020 surveys were merged to compare the answers. Table 2 shows the questions used from the surveys and how the questions and responses were merged to compare the 2016 and 2020 surveys.
Ethical considerations
The study was conducted according to the research ethics principles and ethical guidelines of the Declaration of Helsinki (World Medical Association 2013). Before the study, an application for ethical clearance was obtained from the Ethical Review Authority in Lund in Sweden (diary number: 2022-01668-01). As the data from the SRPC were delivered de-identified and there was no information about the respondents other than their relationship to a deceased patient, the respondents could not be identified. Data were stored in secure servers inaccessible to unauthorized people.
Results
Of the 160 relatives who responded to the survey, 54.4% were partners, 40% were children, and 5.6% were other relatives. The survey was answered by relatives from all over Sweden, although the majority were answered by relatives in southern Sweden (see Table 1). Of the 160 relatives who answered the survey, 69.4% had received information from health professionals about the possibility of using the cash benefit for the care of closely related persons. On the question of whether relatives knew where to turn for emergency assistance during the last week of the patient’s life, 97.5% answered that they did. Furthermore, 96.3% of the relatives answered that relatives and/or health professionals were present at the moment of death. On the question of whether relatives had received counseling from a doctor about whether the patient was dying, 78.1% confirmed that they had. Finally, 92.5% of the relatives answered that they had been offered counseling with health professionals a period of time after the patient’s death.
Health-care support before a patient’s death
The question of whether relatives received the support they needed from health care before the patient died was answered by 43 relatives. This question was only included in the 2020 survey. Of the relatives who answered this question, 70% answered “yes, fully” or “yes, partly,” 23% answered “no, not fully” or “no, not at all,” and 7% answered that the question was “not relevant.”
Satisfaction with health-care support before and after a patient’s death
The questions about whether relatives were satisfied with the support they received before and after the patient’s death were answered by 117 relatives. These questions were only included in the 2016 survey. Of the relatives who answered these questions, 95.7% were satisfied with the support they received before the patient’s death, and 81.2% were satisfied with the support they received after the patient’s death. Table 3 shows how relatives responded to these questions.
Table 3. Relative’s satisfaction with the support from health care before and after the patient’s death
Comparison of responses based on type of relative
Regarding the question of whether relatives had received counseling from a doctor about whether the patient was dying, 86.2% of the partners confirmed that they had compared to only 70.3% of the children and 55.6% of the other relatives. On the question of whether relatives had received information from health professionals about the possibility of using the cash benefit for the care of closely related persons, 72.4% of the partners and 68.8% of the children answered in the affirmative, while only 44.5% of the other relatives confirmed that they had. On the question of whether relatives had been offered counseling with health professionals a period of time after the patient’s death, 96.9% of the children and 100% of the other relatives answered that they had been offered it, while 88.5% of the partners confirmed that they had. Table 4 shows how relatives responded to these questions based on the type of relative.
Table 4. Overview of responses based on the type of relative
Comparison of responses between relatives and health professionals
On the question of whether anyone was present at the moment of death, 96.3% of the relatives and 98.1% of the health professionals answered that someone – relatives and/or health professionals – was present. On the question of whether relatives had been offered counseling with health professionals a period of time after the patient’s death, 92.5% of the relatives and 91.9% of the health professionals answered that they had. Regarding the question of whether relatives had received counseling from a doctor about whether the patient was dying, the answers differed, with 92.5% of the health professionals answering that relatives had received it and only 78.1% of the relatives confirming this. Table 5 shows how relatives responded to these questions compared to how health professionals responded.
Table 5. Overview of comparison of responses from health professionals and relatives
a Not answered when the patient’s death was unexpected.
Discussion
This study aimed to describe the support given by health professionals before and after a patient’s death to relatives involved in general PC at home. Comparisons were made to see if there were differences in the support relatives received based on the type of relative and whether the responses from relatives and health professionals differed. The main findings are that, although many relatives seemed to receive support, not all relatives did so, and there is potential for improvement. Relatives were less satisfied with the support they received after a patient’s death than with the support they received before, and there were differences between types of relative in whether some support was provided. There were also some differences in the responses from health professionals and relatives.
The results that show that support for relatives after a patient’s death is not optimal may have been influenced by when relatives were invited to respond to the survey, as some may not yet have been offered this support. It is also worth considering that relatives are in a difficult situation after a patient’s death, which could influence how they assess the support they receive. Previous studies have also shown that support for relatives after a patient’s death is inadequate. For example, in the study of O’Sullivan et al. (Reference O’Sullivan, Alvariza and Öhlén2021), relatives in different health-care settings expressed disappointment at not receiving support after a patient’s death. Another study of Vermorgen et al. (Reference Vermorgen, De Vleminck and Leemans2020), about specialized PC at home and in hospitals, shows that although 9 of 10 relatives felt supported just after the moment of a patient’s death, almost half of them had not received any information about the possibility of receiving support after a death. Moreover, the study of Hoffstädt et al. (Reference Hoffstädt, Boogaard and Tam2022) shows that about one-third of health professionals in different health-care settings did not provide support to relatives after a death. This suggests that support for relatives after a patient’s death could be improved, regardless of the health-care setting. The responsibility of health professionals does not end when a patient dies. Support for relatives is a fundamental component of PC, and all relatives should be offered support before and after a patient’s death. Support after death includes offering counseling to relatives a period of time after a patient’s death (National Board of Health and Welfare 2016).
This study’s results, in line with those of previous studies (Ando et al. Reference Ando, Ninosaka and Okamura2015; Aoun et al. Reference Aoun, Deas and Toye2015), indicate that it is usually a partner or the children who take care of a patient when PC is provided at home. Adams et al. (Reference Adams, Boulton and Watson2009) point out in their literature review (focusing on the relatives of people with cancer) that it is important to note that most studies focus on partners rather than on other relatives. Although partners and children may be more common, it is important to consider other relatives with different relationships to a dying person, and the need for support may differ depending on that relationship. According to Burns et al. (Reference Burns, Abernethy and Dal Grande2013), other relatives are an important component of PC and must also receive adequate support from health professionals, and this need for support may differ. The present study’s results show differences in whether relatives received some support before and after a patient’s death depending on the type of relative. This may be because more partners than children and other relatives answered the survey, and there was an uneven percentage distribution between the groups. Further research on support for different types of relatives is needed to confirm whether there are differences depending on the type of relative if some support is provided or not.
When comparing the responses of health professionals and relatives, the results show some differences regarding counseling from a doctor about whether the patient was dying. More relatives confirmed that they had not received counseling, while health professionals reported that they had. The health professionals reported that 92.5% of relatives involved in general PC at home had received counseling from a doctor about whether the patient was dying, while only 78.1% of the relatives reported that they had. This difference may be because the relatives may not have been aware that they had received counseling or may have received it from other health professionals. Further research comparing relatives’ and health professionals’ perceptions of the support provided to relatives could provide important information on the reasons for different perceptions.
Although this study’s results show that many relatives appeared to receive support before and after a patient’s death in general PC at home, they also highlight that the support received was not optimal and was not offered to all relatives. This result, which is confirmed in previous studies in different health-care settings (Aoun et al. Reference Aoun, Rumbold and Howting2017; Becqué et al. Reference Becqué, Rietjens and van der Heide2021; Hoffstädt et al. Reference Hoffstädt, Boogaard and Tam2022; Morris et al. Reference Morris, King and Turner2015; O’Sullivan et al. Reference O’Sullivan, Alvariza and Öhlén2021), indicates that support should be offered to more relatives, both before and after a patient’s death, as everyone is entitled to it. A starting point for more optimal support is that it must be individualized from a person-centered perspective and based on a relative’s situation and needs, regardless of the type of relative.
Limitations of the study
Although it is considered a strength that this study’s data were collected from a national quality register, the study has several limitations that should be considered before any definitive conclusions can be drawn. The surveys, and thus the study, contained a limited number of questions regarding support. The study’s results were influenced by the uneven percentage distribution in the groups of relatives and the small sample size, which affects the ability to draw firm conclusions from the results. Statistical analysis in form of Pearson Chi-square tests was carried out to see if there were statistical significant differences between groups of relatives and between health professionals and relatives, but they were not reliable since more than 50% of the cells had expected count less than 5. Furthermore, there is no information about the relatives who responded to the survey, except the type of relative or how many surveys were sent to relatives involved in general PC at home during the whole period between March 2016 and March 2022. This makes it difficult to estimate the selection bias and challenges the study’s validity and representativeness. The 160 surveys answered during this period indicate a low response rate. Statistics from the SRPC from January 2022 to January 2023 show that 47,521 deaths were registered during this period, only 2,472 surveys were sent to relatives in different health-care settings, and 934 surveys (37.8%) were answered (The Swedish Register of Palliative Care 2023). This suggests that health professionals need to become better at inviting relatives to respond to the survey. The fact that some questions and response alternatives were merged to compare the questions and answers from the 2016 and 2020 surveys, may also be a limitation as both questions and responses may have received attention in different ways. The survey for relatives in SRPC is partly developed from the survey for health professionals. Two validation studies have been carried out on the survey for health professionals and show that several questions have high validity (Martinsson et al. Reference Martinsson, Heedman and Lundström2017). Although there is no validation of the survey for relatives, and there is a need for caution in generalizing the findings, the study provides important knowledge about the support given by health professionals before and after a patient’s death to relatives involved in general PC at home. The results of this study can serve as a basis for further research on this important topic.
Conclusion
The findings of this study show that, although many relatives appear to receive support in general PC at home, not all relatives receive optimal support before or after a patient’s death. The findings illustrate that there is potential for improvements, especially regarding support for relatives after a patient’s death, which has been confirmed in previous studies. The findings also indicate differences depending on the type of relative in whether some support is provided or not, which highlights the need for future research on how to support different types of relatives before and after a patient’s death when general PC is provided at home. Further research on this topic is needed to confirm these findings. Research could also, from the perspective of relatives, explore what improvements can be made to the support offered to them at home and investigate barriers and facilitators specific to the home care setting. Such research should also consider the gender perspective since the need for support may differ according to gender.
Acknowledgments
The authors thank Dr. Lundström, SRPC, for his help with obtaining and de-identifying the data.
Author contributions
EMM processed the data. All authors participated in the analysis work. EMM drafted the article. LS, TL, and TS have critically revised the text in terms of intellectually important content. All authors have given final approval for publication and take public responsibility for all its parts.
Funding
This research received no specific grant from any funding agency, commercial or not-for-profit sectors.
Competing interests
The authors declare that there is no conflict of interest.
Open access
