Factors related to good death from the perspectives of informal caregivers of cancer patients: a systematic review

Abstract

Introduction

Ensuring a good death in cancer patients is a multifaceted phenomenon that depends on various factors from the perspective of the patient and their informal caregivers and is based on clinical, cultural and ethical conditions. The objective of the present systematic review is to investigate factors of good death from the perspective of informal caregivers of cancer patients.

Methods

An advanced English electronic search was conducted with no time limit in four online databases of PubMed, Scopus, Web of Science, ProQuest and using related keywords on April 29, 2024. The articles were evaluated based on the conventional content analysis and their quality were assessed.

Results

A total of 686 titles were determined. After removing duplicates, screening and final selection, 33 relevant articles entered the analysis phase. The study population included informal caregivers of cancer patients. Factors of a good death were extracted in two categories. Comfort factors included physical, cognitive-psychological, and social factors, and support factors included perceived support from caregivers, access to care, and advanced care planning.

Conclusion

Achieving a good death is a unique experience, and the perspective of informal caregivers of cancer patients is particularly valuable due to their ongoing involvement in patient care. These caregivers offer insights they have gained from supporting and continuously observing patients throughout the illness trajectory. A comprehensive approach including comfort and support factors can be effective in achieving a good death at the end of life in cancer patients. Planning should focus on comfort and support factors to achieve the patient’s end-of-life preferences and to deliver specialized end-of-life care, taking into account the unique understanding that informal caregivers develop through their sustained caregiving role.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12904-025-01902-3.

Introduction

Death is the end point of the conscious activities of a living being [1] and is considered as the irreversible cessation of the functioning of body organs [2]. Death plays a central role in all societies and cultures and represents the social and cultural identity of societies [3]. Cancer is cause of many deaths in world so that in 2019, the World Health Organization (WHO) estimated that cancer is the first or second cause of death before the age of 70 in 112 out of 183 countries [4]. It is also predicted that the number of cancer patients will increase from 9.96 million in 2020 to more than 16.3 million in 2040 [5]. Cancer patients face many physical, psychological, social and spiritual problems at the end of life. These problems affect the experience of the death of these patients and sometimes make these patients and their families describe the death of patients as good or bad. Therefore, achieving a good death is considered an important phenomenon [6].

The concept of a “good death” was first defined by Weisman in 1972 as “a situation in which everyone knows and accepts the approach of death and addresses the social, emotional, and material concerns of the dying person” [7]. A good death is considered as free of discomfort and suffering for the patients and caregivers and is accordance with the wishes of the patient and family based on clinical, cultural and ethical standards [8, 9].

A Good deaths’ perspective of patients, health care providers and family members are different [10–16]. Studies on good death mainly focus more on the patient experience [13, 14]. In the study by Gennip et al. the manner and circumstances of the patient’s death and maintaining his psychological balance in the last few weeks of life were important for a good death [17]. In 2019 a systematic study investigated factors related to a good death from the perspective of patients, which included control of pain and symptoms, clear decision-making, feeling of closure, being seen and perceived as a person, preparation for death, and being still able to give something to others [14].

Interviewing patients at the end of life is difficult, and non-response due to severe illness may lead to biased results [18]. At the end of life, cancer patients face severe physical and mental limitations in such a way that even talking with these patients is either not possible at all or is hardly possible. Therefore, many studies have been conducted to evaluate end-of-life care with bereaved family members [18]. However, caregivers also want their patients to experience a good death [11]. Generally, there are two types of caregivers including formal caregivers and informal caregivers [19]. Informal caregivers that we focused in our study are those caregivers who receive no payment or payment below the market value where the caregiver might refuse to perform the same task at the same wage if it were outside their social circle [20].

Gurdogan et al. define a good death from the perspective of the family of cancer patients as the presence of a chronic disease, the type of treatment received by the patient, and the previous cancer of another family member [10]. Also, Myiashita et al. divided factors affecting a good death from the perspective of patients’ family members in several main areas, such as physical comfort, dying in a favorite place, maintaining hope and pleasure, and having good relationship with medical staff [18].

The concept of a “good death” has been shown to be very important in two aspects; the approach of health service providers and the approach of the patient and his/her family, but there has still been no systematic study on the factors affecting a good death from the perspective of patients’ caregivers, especially in cancer patients. Since patients are often unable to provide data about the perceived quality of their end-of-life care, and it is difficult to assess patients’ experiences of their dying process while they are still alive, caregivers’ assessments can serve as indirect measures of quality of death [21].

Base on the importance of cancer caregivers’ view of a good death, we conducted a systematic search. Therefore, this study aims to investigate factors related to a good death from the perspectives of family caregivers of cancer patients.

Methods

Study design

In the present review study, an advanced English electronic search was conducted with no time limit in four online databases of PubMed, Scopus, Web of Science, ProQuest and using related keywords on April 29, 2024. The quality assessment was conducted using Hawker’s criteria [22].

This systematic study was conducted based on the Preferred Reporting Items for Systematic Reviews and Meta Analyzes (PRISMA) guidelines [23] and approved by the Ethics Committee of Baqiyatallah University of Medical Sciences (ethics code: (IR.BMSU.REC.1400.122). The PRISMA 2020 checklist was completed and is included in the supplementary 1. The study protocol is registered in PROSPERO with the code CRD42021285734. The methods were carried out as planned in the registered protocol. No amendments were made to the protocol after registration.

Inclusion criteria

All studies that explicitly stated the factors related to a good death from the perspective of the informal caregiver’s of cancer patients or provided data based on which factors affecting this concept could be identified were selected. Observational studies including qualitative, quantitative, mixed method, cross-sectional, case control, cohort studies also clinical trials. Review article, case report, and case series weren’t included.

Exclusion criteria

Exclusion criteria include articles published in conferences, case report studies, reviews, and letters to the editor due to discarding primary data, irrelevant articles, studies on families of patients under 18 years old with cancer, studies focusing on factors related to a good death where reports were made secondarily and tertiarily from nurses or physicians and the inability to separate outcomes for cancer patients.

Search strategy

Studies were searched in four databases: PubMed/Medline, Scopus, web of science and ProQuest on April 29, 2024, without time limit. The search strategy in some of the searched databases is shown as an example in (Table 1).

Table 1.

Search strategy

Search engines and databases: PubMed, Scopus, web of science, ProQuest
Limits: Language (Only resource with at least an abstract English)
Date: Up to April 29, 2024
Scopus Syntax (TITLE-ABS-KEY (“Quality of death” OR “good death” OR “quality of dying” OR “good dying” OR “Successful Dying” OR “Successful death” OR “Peaceful death” OR “Peaceful dying” OR “better death” OR “dying well” OR “Timed death” OR “Assisted dying” OR “assisted death”) AND TITLE-ABS-KEY (cancer OR neoplasm OR tumor OR malignancy OR carcinoma) AND TITLE-ABS-KEY (caregiver* OR “carer*” OR “family caregiver*” OR “family carer*” OR “informal caregiver*” OR “informal carer*” OR “spouse caregiver*” OR “spouse carer*” OR “family member*” OR “non-professional care*” OR “unpaid care”))
PubMed Syntax ((“Quality of death“[Title/Abstract] OR “good death“[Title/Abstract] OR “quality of dying“[Title/Abstract] OR “good dying“[Title/Abstract] OR “Successful Dying“[Title/Abstract] OR “Successful death“[Title/Abstract] OR “Peaceful death“[Title/Abstract] OR “Peaceful dying“[Title/Abstract] OR “better death“[Title/Abstract] OR “dying well“[Title/Abstract] OR “Timed death“[Title/Abstract] OR “Assisted dying“[Title/Abstract] OR “assisted death“[Title/Abstract]) AND (cancer[Title/Abstract] OR neoplasm[Title/Abstract] OR tumor[Title/Abstract] OR malignancy[Title/Abstract] OR carcinoma[Title/Abstract])) AND (caregiver*[Title/Abstract] OR “carer*“[Title/Abstract] OR “family caregiver*“[Title/Abstract] OR “family carer*“[Title/Abstract] OR “informal caregiver*“[Title/Abstract] OR “informal carer*“[Title/Abstract] OR “spouse caregiver*“[Title/Abstract] OR “spouse carer*“[Title/Abstract] OR “family member*“[Title/Abstract] OR “non-professional care*“[Title/Abstract] OR “unpaid care“[Title/Abstract])
Web of Science Syntax (“Quality of death” OR “good death” OR “quality of dying” OR “good dying” OR “Successful Dying” OR “Successful death” OR “Peaceful death” OR “Peaceful dying” OR “better death” OR “dying well” OR “Timed death” OR “Assisted dying”) (Topic) and (“cancer” OR “neoplasm” OR “tumor” OR “malignancy” OR “carcinoma”) (Topic) and (“caregiver” OR “carer” OR “family caregiver” OR “family carer” OR “informal caregiver” OR “informal carer” OR “spouse caregiver” OR “spouse carer” OR “family member” OR “non-professional care” OR “unpaid care”) (Topic)
Proquest Syntax ab (“Quality of death” OR “good death” OR “quality of dying” OR “good dying” OR “Successful Dying” OR “Successful death” OR “Peaceful death” OR “Peaceful dying” OR “better death” OR “dying well” OR “Timed death” OR “Assisted dying” OR “assisted death”) AND ab (cancer OR neoplasm OR tumor OR malignancy OR carcinoma) AND ab (caregiver* OR “carer*” OR “family caregiver*” OR “family carer*” OR “informal caregiver*” OR “informal carer*” OR “spouse caregiver*” OR “spouse carer*” OR “family member*” OR “non-professional care*” OR “unpaid care”)

To select keywords for this systematic review study, a combination of Mesh Term and Free Text words were used (Table 1. Search strategy). If there was no access to the full text of eligible articles, unpublished data or the existence of wrong and ambiguous data, an email was sent to the responsible author, and three more emails were sent at a 1-10-day interval. If no message is received from the article author after three emails, the article will be deleted. Any disagreement was resolved by the agreement of two researchers (S.B, H.MR.) and in case of disagreement, the decision was made based on opinion of the third informant.

Selection criteria

Original English articles published without time limit were identified according to the search criteria. Duplicate references were removed using EndNote X8. The titles and abstracts of the articles were checked in the screening stage. The selected studies were classified into three categories: relevant, irrelevant and uncertain. The quality assessment was also carried out by two members of the research team separately. Articles reported by both researchers as irrelevant were excluded from the study. Then, the full text of the articles was reviewed independently by two researchers in the selection stage (H.MR. and S.B.). Any disagreement at any stage was resolved by discussion and agreement between the two researchers. In case of lack of consensus between the researchers, a third person was used as a referee and the result was reported in the form of statistical Kappa coefficient after reaching a general agreement. Afterwards, data extraction and quality assessment of the studies were carried out by two researchers (H.MR. and S.B.).

Risk of bias assessment

After investigating the objective of the studies and the inclusion criteria, 33 studies underwent quality assessment by two researchers (H.MR. and S.B.) separately. The quality of the articles was assessed using the Hawker’s scale (Table 2) [22]. In this scale, studies were assessed on a scale ranging from 1 to 4 (4 = Good, 3 = Appropriate, 2 = Poor, and 1 = Very poor). Abstract and title, introduction and objectives, method and data, sampling, data analysis, ethics, results, generalizability and usefulness are investigated in this scale. Any disagreement between the two researchers was discussed and resolved.

Table 2.

Assessments of studies included in the review

Authors/Year	Abstract and title	Introduction and aims	Method and data	Sampling	Data analysis	Ethics and bias	Results	Transferability generalizability	Implications usefulness	Total	Average	Grade
Mah et al. (2023) [24]	4	3	3	3	3	3	4	3	3	29	3.2	Good
Mah et al. (2023) [25]	4	4	4	3	4	4	4	4	4	35	3.8	Good
Goombs et al. (2023) [26]	4	3	3	3	2	3	3	3	4	28	3.1	Good
Otani et al. (2022)[27]	4	3	3	3	3	3	3	3	3	28	3.1	Good
Nagamatsu, Yasuko. et al. (2022) [28]	4	4	3	4	4	3	4	3	3	32	3.6	Good
Hayashi et al. (2022) [29]	4	3	3	3	3	3	4	2	2	27	3	Good
Gurdogan et al. (2022) [30]	4	4	2	3	3	3	3	2	2	26	2.8	Fair
Aso et al. (2022) [31]	4	4	4	3	4	3	4	3	4	33	3.7	Good
Aoyama et al. (2022) [32]	4	3	3	3	3	3	4	3	3	29	3.2	Good
Tagami et al. (2021) [33]	3	4	4	3	4	4	4	3	4	33	3.7	Good
Sudhakar et al. (2021) [34]	3	3	3	4	3	3	4	3	2	28	3.1	Good
GutiérrezSánchez, D. et al. (2021) [35]	3	3	3	4	4	2	3	4	3	28	3.1	Good
Sánchez et al. (2020) [15]	2	2	3	3	3	4	3	3	3	26	2.8	Fair
Pottle et al. (2020) [36]	3	3	4	3	4	4	3	3	4	31	3.4	Good
Hasegawa et al. (2020) [37]	4	3	3	4	3	3	3	2	2	27	3	Good
Mah et al. (2019) [38]	3	4	2	4	4	3	4	4	3	31	3.4	Good
Davies et al. (2019) [39]	4	3	3	3	3	3	3	3	3	28	3.1	Good
Yun, Young Ho et al. (2018) [40]	4	3	3	3	2	3	3	3	4	28	3.1	Good
Hamano et al. (2017) [41]	4	3	3	3	2	3	4	2	4	28	3.1	Good
Maeda et al. (2016) [42]	3	3	3	2	3	3	3	2	2	24	2.7	Fair
Yamagishi et al. (2015) [43]	4	4	3	3	3	3	4	2	3	29	3.2	Good
Shinjo et al. (2015) [44]	4	4	2	3	3	3	3	2	2	26	2.8	Fair
Kinoshita et al. (2015) [45]	3	3	3	3	3	3	3	3	4	28	3.1	Good
Cagle et al. (2015) [46]	4	4	4	3	4	3	4	3	4	33	3.7	Good
Hales et al. (2014) [47]	4	3	3	3	3	3	4	3	3	29	3.2	Good
Braun et al. (2014) [48]	4	3	3	4	4	3	4	3	4	32	3.6	Good
Lee et al. (2013) [49]	3	4	4	3	4	3	4	4	4	33	3.7	Good
Choi et al. (2013) [50]	4	4	3	4	4	3	4	3	3	32	3.6	Good
Ahn et al. (2013) [51]	4	3	3	3	3	3	4	2	2	27	3	Good
Iranmanesh et al. (2011) [52]	3	3	2	2	3	3	3	3	2	24	2.7	Fair
Miyashita et al. (2008) [53]	4	4	4	3	4	4	4	4	4	35	3.8	Good
Miyashita et al. (2008) [18]	4	4	4	3	4	3	4	3	4	33	3.7	Good

Data extraction

The specifications of the articles include the author, year, objective, country, type of study, sample, and instruments, as well as factors affecting a good death that were investigated by two researchers (H.MR. and S.B.) separately using a researcher-made data extraction form. First, an article was assessed as a pilot using this form; then the process was carried out for other articles. Each researcher presented the data extraction form of their articles and performed the data content analysis process to extract effective factors separately. Then the extracted data was compared. Any disagreement between the researchers was resolved through discussion and agreement between. In case of disagreement between the researchers, a third person was used as a judge and the result was reported after reaching a general agreement. The included studies were analyzed using qualitative content analysis [54]. Qualitative content analysis is a method that aims to provide a systematic and objective means to make valid interpretations from written, verbal or visual data to describe a specific phenomenon at manifest level [55]. Data were analyzed based on the conventional content analysis approach [56]. The process of developing the main categories and subcategories was iterative and inductive. Once subcategories were identified, we grouped them based on their similarities and differences. Through multiple discussions and refinements, we identified overarching themes that spanned all subcategories. This process involved carefully examining how different factors were related to each other and how they could be meaningfully grouped into broader categories. The categorization process was conducted independently by two researchers (H.M.R. and S.B.), who then compared their results. Any disagreements were resolved through discussion and, where necessary, a third researcher was consulted. The final categorization was reviewed and agreed upon by all team members to ensure its validity and comprehensiveness. This approach allowed us to systematically organize the data while maintaining the integrity of the main findings from the included studies. Qualitative data analysis based on the method proposed by Graneheim and Lundman is done [54].

For quantitative studies included in our review, we considered statistically significant relationships (p < 0.05) as a criterion to establish whether a factor was associated with or influenced a good death. This method ensures that our findings are robust and reliable. However, for qualitative studies, insights gained from participants’ experiences were emphasized instead of statistical significance. Thus, while statistical significance was necessary for quantitative studies, qualitative studies provided valuable contextual insights into what constitutes a good death based on personal and cultural perspectives. This approach allowed us to capture the experiences of informal caregivers of cancer patients, offering a more comprehensive understanding of the factors contributing to a good death. An example of data extraction was presented in Table 3.

Table 3.

An example of data extraction

Category	Subcategory	Secondary Subcategory	code	Meaning unit
Comfort factors	Social factors	Economic factors	income level	Poor capability of preparation for good death (score < 70) was significantly associated with lower income level, the presence of comorbidity, caregiver experience, and negative attitude for an essential factor for a good death, such as freedom from pain [16].
		Underlying problems	the presence of comorbidity
		Physiological factors	freedom from pain

Results

After searching for keywords in databases, a total of 686 articles were found. After removing duplicates, 375 articles remained for further review, which in turn led to exclusion of 323 ineligible articles. The remaining 52 articles were reviewed in detail based on the full text of the articles, and finally 33 articles were eligible to be included in the study (Fig. 1) [15, 18, 24–42, 44–53, 57].

Fig. 1.

PRISMA flowchart

Moreover, only articles focusing on the perspective of informal caregivers were reviewed and other studies were excluded. Overall, the opinions of 42,992 caregivers of cancer patients were investigated, among whom 27,941 were women and 15,051 were men, and 175 cases were unknown. Most of the articles were conducted in Japan (n = 15) [18, 27–29, 31–33, 37, 41, 42, 44, 45, 53, 57] South Korea (n = 3) [40, 50, 51], followed by Spain (n = 2) [15, 35], Uganda [2, 25, 26], Canada (n = 2) [24, 47], Kenya (n = 2) [26, 38], Turkey (n = 1) [30], and India (n = 1) [34], North Wales (n = 1) [36], England (n = 1) [39], United States (n = 1) [46],, Israel (n = 1) [48], Singapore (n = 1) [49] and Iran (n = 1) [52].

Data was collected through interviews in four articles [34, 36, 46, 49], the good death inventory (GDI) in sixteen articles [18, 27–29, 31–33, 37, 41, 42, 45, 50–53, 57], the quality of dying and death (QODD) in eight articles [15, 24–26, 35, 38, 47, 48], the good death scale (GDS) in two articles [10, 29], the palliative care outcome scale (POS) in two articles [15, 35], the care evaluation scale (CES) in three articles [28, 42, 50] and questionnaires Mini-Suffering State Examination (MSSE) [15], Eastern Cooperative Oncology Group (ECOG) [39], Memorial Symptom Assessment Scale—short form (MSAS-SF) [39] and preferred place of death (PPD) [39] have each been used once in the articles(Table 4).

Table 4.

Characteristics of the studies included in the review

Authors Year Country	Country	Methodology and data collection methods	Population	Tools	aim
Mah et al. 2023 [24]	Canada	cross-sectional	157 Bereaved family caregivers of cancer patients	QODD, QOL-EOL	To investigate the impact of EPC on patients’ QODD and QOL-EOL and the moderating role of receiving inpatient or home palliative care
Mah et al. 2023 [25]	Uganda	cross-sectional	201 bereaved family caregivers of cancer patients	QODD, FAMCARE	To assess the quality of dying and death of patients with cancer in hospice care in Uganda
Goombs et al. 2023 [26]	Uganda and Kenya	Observational study	329 bereaved caregivers of cancer patients	QODD, FAMCARE	To investigate the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya
Otani et al. 2022 [27]	Japan	was part of a nationwide survey	432 bereaved families of cancer patients	GDI	To clarify the effects of staying in a private or shared room in inpatient hospices
Nagamatsu et al. [28]	Japan	cross-sectional	72 bereaved family members of cancer patients	GDI, CES	To investigate whether malignant pleural mesothelioma (MPM) patients achieved good deaths and good quality of end-of-life care compared with other cancer patients from the perspective of bereaved family members in Japan
Hayashi. et al. 2022 [29]	Japan	cross-sectional	885 bereaved family members of cancer patients	GDI, CES	To determine the prevalence and impressions of bathing for terminally ill cancer patients and its relations to the evaluations of perceived end-of-life care and achievement of a good death
Aso et al. 2022 [31]	Japan	cross-sectional	571 bereaved family members of cancer patients	GDI	To explore the unclear association between temporary discharge home from the palliative care unit and achievement of good death, in the background of increases in discharge from the palliative care unit
Aoyama et al. 2022 [32]	Japan	secondary analysis of data collected by two nationwide	14,171 bereaved family members of cancer patients	GDI	To clarify whether the quality of dying and related factors in patients with malignant brain tumor differ from those in patients with other malignant diseases
Igarashi et al. 2021 [57]	Japan	cross-sectional	15,949 bereaved family members of cancer patients	GDI	To examine differences in sociodemographic characteristics and the achievement of a good death between cancer patients who live alone and those who do not live alone prior to death in different settings
Tagami et al. 2021 [33]	Japan	cross-sectional	515 bereaved family members of cancer patients	GDI- short form	developed a hypothesis that there may be a relationship between patient-perceived appropriateness of SPC referral timing and their quality of death
Sudhakar et al. 2021 [34]	India	Phenomenological study	108 caregivers of advanced cancer patients	interviews	To explore the experience and perceptions of caregivers of people diagnosed with advanced cancer regarding the quality of the individuals’ death
Gutiérrez-Sánchez et al. 2021 [35]	Spanish	cross-sectional	72 family caregivers of advanced cancer patients	QODD-ESP-26, POS	to analyze the QoD of advanced cancer patients in PC
Sánchez et al. 2020 [15]	Spain	cross-sectional	74 relatives of deceased cancer patients	(QODD-ESP26), MSSE, POS	To analyze the QoD of advanced cancer patients in PC
Pottle et al. 2020 [36]	North Wales	qualitative study	15 bereaved family carers of cancer patients	interviews	To explore the experience of caring for someone who wished to die at home in North Wales and did so
Hasegawa et al. 2020 [37]	Japan	cross-sectional	1008 family caregivers of cancer patients	GDI- short form	To determine whether the provision of rehabilitation for patients with cancer in palliative care units is associated with the achievement of a good death
Gurdogan et al. 2020 [30]	Turkey	cross-sectional	182 family caregivers of cancer patients	GDS	To investigate the importance of the concept of a good death and the contributing factors from the perspectives of family caregivers of advanced cancer patients in an oncology hospital
Mah et al. 2019 [38]	Kenya	cross-sectional	127 caregivers of deceased patients with advanced cancer	QODD	To evaluated the QODD in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample
Davies et al. 2019 [39]	UK	observational		ECOG, PPD, MSAS-SF	To investigate concordance between patients and non-professional carers about factors associated with a ‘good death’ and other end-of-life decisions
Yun et al. 2018 [40]	Korean	cross-sectional	1006 family caregivers of cancer patients	Researcher made questionnaire	To investigate the components of a good death that are important to the general population, cancer patients, their families, and physicians
Hamano et al. 2017 [41]	Japan	cross-sectional	486 bereaved family members of cancer patients	GDI- short form	To explore whether the level of trust in HCPs, the quality of continuity of care, and the level of coordination of care among home HCPs are associated with the QOD for cancer patients dying at home
Maeda et al. 2016 [42]	Japan	interventional	1,110 family caregivers of deceased cancer patients in the pre-intervention group and 1,137 in the post-intervention group	CES, GDI	To examine changes in palliative care outcomes in different care settings (hospitals, palliative care units, and home) and obtain insights into how to improve region-level palliative care
Yamagishi et al. 2015 [43]	Japan	cross-sectional	693 family members of cancer patients	GDI	To clarify the length of home hospice care, family-perceived timing of referrals, and their effects on the family-perceived quality of care and quality of death and dying of terminally ill cancer patients who died at home and identify the determinants of perceived late referrals
Shinjo et al. 2015 [44]	Japan	cross-sectional	432 bereaved family members of cancer patients	Researcher made questionnaire	To explore associations between a preference for opioids and general attitudes toward drugs, the experience and information received as a bereaved family, and beliefs regarding a good death
Kinoshita et al. 2015 [45]	Japan	Cross-sectional	2247 family caregivers of patients with cancer	GDI- short form	To explore the associations between place of death and quality of death and dying and caregiver burden in terminally ill patients with cancer and their families
Cagle et al. 2015 [46]	US	interviews	158 family member of cancer patients	interviews	To identify the correlation of a good death; and provided evidence on the impact of hospice on quality of death
Hales et al. 2014 [47]	Canada	In-person or telephone interviews	402 bereaved caregivers of cancer patients	QODD	To assess the quality of death of patients with cancer and examine its relationship to receipt of specialized palliative care and place of death
Braun et al. 2014 [48]	Israel	Retrospective	95 caregivers of Jewish cancer patients	QODD	To explore the quality of dying and death in cancer patients in Israel and its relationship to place of death and socio-demographic characteristics of the primary caregivers and the deceased
Lee et al. 2013 [49]	Singapore	focus group discussions and face-to-face interview	18 bereaved family caregivers of cancer patients	interviews	To examine the concept of a good death from the perspectives of both the dying person and the family caregiver, as perceived by bereaved family caregivers of advanced cancer patients
Choi et al. 2013 [50]	Korea	cross-sectional	570 bereaved family caregivers of cancer patients	CES, GDI	To identify factors associated with the quality of dying and death for terminally ill cancer patients in PCUs
Ahn et al. 2013 [51]	Korea	Descriptive	345 bereaved family members of cancer patients	GDI	To assess whether awareness of a terminal illness can affect care decision making processes and the achievement of a good death in advanced cancer patients receiving palliative care services
Iranmanesh et al. 2011 [52]	Iran	descriptive	150 bereaved family members of cancer patients	GDI	To evaluate a good death concept from the Iranian bereaved family members’ perspective
Miyashita et al. 2008 [53]	Japan	cross-sectional	165 bereaved family members of cancer patients	GDI	To explore factors contributing to a good death from the bereaved family members’ perspectives
Miyashita et al. 2008 [18]	Japan	cross-sectional	189 bereaved family members of cancer patients	GDI	To develop a measure for evaluating a good death from the bereaved family member’s perspective based on our previous investigations

The factors related to a good death were extracted in two categories: comfort and support factors (Table 5).

Table 5.

Factors affecting a good death

Category	Subcategory	Secondary Subcategory
Comfort factors	Physical factors	Physiological factors
		Daily activities
		Underlying problems
	Cognitive-psychological factors	A person’s knowledge of the disease
		Mood disorders at the end of life
	Religious-spiritual well-being
	Social factors	Communications
		Economic factors
Support factors	Perceived support from caregivers	Perceived support from caregivers
		Perceived support from formal care providers
	Access to care	Palliative care
		Individualized care
	Advanced care planning	Talking about death
		Patient end-of-life preferences

Comfort factors

According to the studies included in the present review, comfort is defined as physical, cognitive-psychological and social comfort, and religious-spiritual well-being.

Physical factors

Several studies have pointed to physical comfort as a factor affecting a good death [15, 18, 34, 46, 49, 53]. Sudhakar, R et al. and Goombs et al. state that patients undergoing end-of-life care experience physical suffering, which should be managed by managing physical symptoms and reducing suffering through symptom management until achieving physical comfort [26, 34]. Physical comfort includes physiological dimensions, daily activities and underlying problems.

Physiological factors

The absence of physical pain has been considered as a physiological factor in different studies [25, 39, 40, 44, 46, 49, 50]. Shinjo et al. state that a good death is free from physical pain and discomfort [44]. Miyashita et al. have mentioned several other factors, including patient hydration, oxygen therapy, receiving vasopressors, antibiotic therapy, and receiving narcotic drugs as other physiological factors affecting a good death [53]. Also, Davies et al. and Miyashita et al. have mentioned the patient’s consciousness until the moment of death and the feeling of completed life [18, 39].

Daily activities

Lee et al., Miyashita et al. as well as Davies et al., have mentioned doing personal affairs and having independence as factors influencing a good death [18, 39, 49]. Among the daily activities, bathing before death is one of the things that was associated with achieving a good death in the study of Hayashi et al. [29].

Underlying problems

The underlying problems are other physical factors. Studies have referred to the absence of other chronic diseases as a factor affecting a good death [30, 40]. Miyashita et al., also referred to the duration of disease diagnosis, the experience of surgical treatments, invasive treatments and long-term treatment as underlying factors affecting a good death [53] Also, the type of cancer is another factor mentioned by Aoyama et al. [28, 32]

Cognitive-psychological factors

Cognitive-psychological factors include sub-categories of a person’s knowledge of disease and mood disorders at the end of life.

A person’s knowledge of the disease

Ahn et al. and Miyashita et al. have considered the knowledge of an incurable disease or unawareness of death as a factor affecting a good death [18, 51]. Sudhakar et al. have referred to awareness of prognoses as a factor affecting a good death. It was later stated that most patients suspect a poor prognosis as their physical condition worsens and are not aware of it by caregivers or health professionals [34]. Mah et al. have also mentioned in their study the experiences and as thus increasing patient’s awareness [38]. Lee et al. and Miyashita et al. have also mentioned psychological preparation for death and having a positive experience [18, 49].

Mood disorders at the end of life

Mah, K. Vehkaran and Cagle, J. G. et al. have pointed out the feeling of worry and stress and anxiety as factors affecting a good death. Cagle, J. G, et al. stated that quality of death was associated with stress or anxiety in deceased cancer patients, and when these symptoms were present, respondents were more likely to report bad death [38, 46].

Religious-spiritual well-being

Four studies have considered religious factors, including being at peace and peace with God, to be effective in achieving a good death [18, 25, 39, 40]. Lee, G. L et al. mentioned the fulfillment of religious needs. They have also mentioned the importance of empowering the patient to find the meaning or purpose of life [49].

Social factors

This sub-category included sub-categories of communications and economic factors.

Communications

Two studies mentioned identifying, having communications and meeting friends. It was shown in Choi, J. Y et al.‘s study that friends are considered as an important source of support for a dying person, as one of the interviewees stated that when his sister became ill, her former classmates came to visit her, which makes the patient feel supported [46, 49]. On the other hand, according to the findings of the study by Cagle, J. G. et al., receiving contradictory information from the physician can lead to a bad death [46].

Paying attention and respecting the patient at the end of life by relatives can lead to improving the quality of death at the end of life [15, 25, 53].

Economic factors

In the several study considered the income level as a factor influencing a good death in such a way that the higher the income, the better death a person experiences [25, 40, 53].

Supporting factors

According to studies, supporting factors were categorized into three subcategories of perceived support from caregivers, access to care, and advanced care planning.

Perceived support from caregivers

Perceived support from caregivers includes perceived support from family as well as formal care providers.

Perceived support from family

According to the sub-category of perceived support from the family, the presence of families and the duration of communication with the patient are known to be effective on a good death perception [18, 25, 40, 47]. Lee, G. L. et al. believe that family and social relationships, as well as saying goodbye to the patient and appropriate mourning are very important. In this regard, one of the interviewees said that it was important for him to be able to say goodbye to the patient on the last day. Appropriate mourning was considered essential for caregivers at the end of a patient’s life. One of the interviewees says, “Everything was very calm, so I’m very happy about that” [49]. The number of times that the family cares for the patient or living alone from the perspective of the patient’s caregivers are known as factors affecting a good death [53, 57]. The normalization of the home environment by caregivers is also another factor, as Pottle, J et al. state that it is necessary to be able to manage the balance between the demands and satisfaction of caring for someone who dies at home [36].

Perceived support from formal care providers

The subcategory of perceived support from formal care providers refers to the patient’s and family’s trust in the treatment staff and also the coordination of care between the staff with the death quality for cancer patients [18, 25, 41]. Cagle, J. G et al. note that 79% of caregivers who stated that their patient experienced a good death, had good or excellent knowledge/expertise [46]. Lee, G. L. et al. have also referred to touch by health care professionals [49].

Access to care

Access to care included palliative care and individualized care.

Palliative care

Receiving palliative care at the end of life is one of the important factors to achieve a good death [24, 42, 47, 48, 50]. In this regard, Maeda, I. & Makaran showed that the death quality improved significantly after palliative care interventions [42]. Timely referral to hospice is important when providing palliative services [33, 45, 46, 50]. Also, the length of stay in the palliative care center has been mentioned as an effective factor [50]. Miyashita et al. have also found palliative sedation to be effective [53]. Hasegawa, T et al. have also mentioned that rehabilitation in palliative care units helps in several areas of quality of death and dying, especially maintaining hope and pleasure [37].

Individualized care

In this regard, Gutiérrez-Sánchez, D. et al. showed a positive and statistically significant relationship between the quality of death and the quality of individualized care, so that higher quality of individualized care ensures a higher quality of death [35]. According to Gurdogan, E. P. et al., the type of patient treatment and care, either inpatient or outpatient, or using a private room, is one of the factors that affects the caregivers’ good death perception for the patient [25, 27, 30]. In the study of Aso et al., it was shown that temporary discharge is one of the factors that can affect the achievement of a good death ([31].

Advanced care planning

Advanced care planning includes two dimensions of talking about death and the patient’s end-of-life preferences.

Talking about death

Shinjo. T et al. state that talk therapy leads to a natural death that is free from pain and physical discomfort [44]. The patient’s comment about personal death and funeral arrangements by him is a factor affecting a good death from the point perception according to patients’ caregivers [39]. In this regard, Lee, G. L. et al. have pointed out that if the deceased is actively involved in planning their funeral arrangements, they will be able to make personal and social preparations to prepare for death [49].

Patient end-of-life preferences

With regard to the sub-category of patient end-of-life preferences, the most frequent preference is related to place of death, which has been mentioned in several studies [18, 35, 39, 45, 47–49, 53]. Davies, A et al. stated that caregivers seem to generally agree with patient preferences regarding preferred place of death [39]. Hales, S. et al. also concluded that there is a relationship between dying at home with better symptom control, preparation for death, and overall quality of death [47]. A natural death is another factor that has been mentioned in several studies as a factor affecting a good death from the perspective of caregivers [18, 44, 52, 53]. Cagle, J. G et al. have concluded that the death quality was also related to the fulfillment of the wishes of the deceased [46]. Lee, G. L et al. have also mentioned allowing the dying person to die, dying quickly, having a preferred caregiver, not prolonging life at all costs, dying in sleep and dying with dignity [49].

Discussion

The objective of the present study was to investigate the factors related to a good death in cancer patients from the perspective of the patients’ caregivers. While physical, psychological, social, and spiritual issues are present in many different diseases [58], cancer presents unique challenges that make the caregiving experience different [59]. Advanced cancer typically involves rapid physical decline, unpredictable disease progression, and significant emotional and psychological burdens that distinguish it from other chronic illnesses [60]. Patients with cancer typically face a more complex dying process, particularly in managing symptoms and avoiding invasive treatments [61]. Caregivers of cancer patients often experience significant emotional distress due to the definitive nature of the disease and the need to make immediate decisions about care [62]. These challenges impact caregivers’ perceptions of a good death, including the importance of timely referral to palliative care. The emotional and spiritual aspects of caring for cancer patients also play a more prominent role than in other diseases, with caregivers emphasizing spiritual well-being and the need for farewells and respite. Furthermore, the acute nature of cancer care requires rapid decision-making about treatment and end-of-life preferences [63], which distinguishes it from care in chronic diseases with steady progression. While the concept of a good death may have common elements across different diseases, specific aspects of cancer care, such as rapid symptom progression, emotional distress, and the burden of treatment [64], require special attention to the role of caregivers. This unique context justifies our focus on informal caregivers of cancer patients and highlights the importance of addressing their specific needs in research and clinical practice.

Results of literature review showed that the factors related to a good death from the perspective of caregivers are categorized in two general categories, including comfort factors with the subcategories of physical, cognitive-psychological, religious-spiritual well-being, and social factors, and supporting factors with the subcategories of perceived support from caregivers, access to care and advanced care planning. Providing patient comfort is one of the important health care goals [65]. Comfort has different definitions and is a multidimensional issue that is experienced as a positive feeling and the power of experience [66]. In this regard, Larson et al. concluded that patients with incurable diseases described comfort in terms of a feeling of ease or relaxation [67].

Psychological comfort refers to a person’s satisfaction in various aspects of life, which is based on the cognitive and emotional evaluative judgments of the person [68]. On the other hand, cognitive-psychological comfort can be defined as a factor for the coordination and integration of a person’s internal forces, which is characterized by the characteristics of stability, peace in life, a sense of being more connected to oneself, God, society and the environment [69], this mentioned in several studies [39, 40, 44, 46, 49, 50]. Consistent with these studies, Melanie Waghorn et al. and also Curtis et al. showed that good control of symptoms and pain is related with higher quality of death and dying [70, 71].

Performing personal affairs and having independence is another factor affecting a good death [39, 49], which is confirmed in studies by Kastbom et al. and Huang Haishan et al. [13, 72]. Having independence at the end of life and the ability to do personal tasks through providing physical, psychological and social comfort can be a factor to achieve a good death.

Miyashita et al. referred to having underlying problems in addition to the main disease, including receiving long-term treatment and invasive treatments, as factors affecting on a good death perception [53]. Promoting the early stopping of treatment or not starting invasive treatments has also been referred to in the study of Beckstrand et al. as factors positively affecting a good death [73]. It was also demonstrated in Greer et al.‘s study that the quality of life of the advanced cancer population can be improved if invasive treatments such as chemotherapy are used less frequently [74].

Studies have considered not having a chronic disease as a factor for achieving a good death [30, 40]. Similarly, it is stated in Davison et al. that a chronic disease can negatively affect a person’s death perception by increasing awareness of the death process [75]. Absence of a chronic disease and avoid prolonging the treatment at the end of life and receiving invasive treatments less frequently are factors that can affect the caregivers’ good death perception for their patient.

Mah et al. have mentioned the experiences and thus increasing awareness of the patient [38]. Similarly, Kastbom et al. found that previous experience of a friend or family member dying with uncontrolled symptoms influenced their good death perception [13]. E Ahn et al. referred to awareness of an incurable disease as a factor to achieve a good death [51]. Also, preparation for death, including completing unfinished business, is considered by Kastbom et al. as a factor affecting a good death [13]; however, death unawareness is mentioned by Hirai et al. as a factor in achieving a good death [76]. Despite the discrepancy in the results, it seems that the patients’ awareness of the conditions of their disease through creating psychological preparation for them to face death and also providing the conditions to say goodbye to their loved ones and creating an opportunity to complete unfinished tasks and writing a will can provide appropriate conditions for having a good death.

Studies have identified absence of stress and anxiety as a factor for having a good death [38, 46]. Consistent with these results, Jarin Chindaprasirt et al. also considered having comfort as a factor to achieve a good death [77]. It was also concluded in the study by Kastbom et al. that eliminating anxiety is one of the important factors in achieving a good death [13]. It can be stated that absence of anxiety provides appropriate conditions for having a good death experience by creating psychological comfort for the patient.

Having religious and spiritual well-being and paying attention to religious issues are effective on experiencing a good death [40, 50, 52]. In this regard, Tracy A. Balboni et al. showed that spiritual support by religious communities or the medical system was significantly related to the patient’s quality of life at the end of life [78]. Also, Hirai et al., referred to faith as a factor affecting a good death [76]. It seems that paying attention to religious and spiritual issues favorable conditions for a good death of patients who are in the final stages of their life, can be provided by creating a purposeful life vision and creating the view that death is not the end of human life. The patients’ point of view also showed that religious beliefs affect the perception of a good death, because religion and spirituality are essential elements in practices and concepts related to life, health, illness and death [14].

Studies have referred to having positive communications at the end of life with family and friends as an important factor for achieving a good death [46, 49]. Similarly, Beckstrand et al. also considered patients’ communication challenges as a barrier to achieving a good death [73]. It seems that maintaining a positive communication with the patients by their friends or loved ones would help them prepare for death to achieve a good death by creating a sense of support and achieving peace.

Yun, Young Ho et al. and Miyashita et al. concluded that higher income can lead to better death quality [40, 53]. While Curtis et al. showed that economic factors do not affect the death quality [70]. Despite the discrepancy between the results of studies, it seems that higher income can become a factor affecting a good death perception from the perspective of the patients’ family by ensuring better access to resources and treatments and having a better social level. Also, financial issues have been one of the important issues affecting a good death from the patients’ point of view [14].

Supporting factors that are described as special actions such as helping the patient to get the needed health care, guaranteeing the quality of care and defending the patient’s rights [79].Studies have referred to the inclusion of families in the end-of-life care as a supporting factor in achieving a good death [40, 47]. Similarly, Beckstrand et al., Chindaprasirt et al., Hirai et al. and alsoKastbom et al. showed that being with the patient until the last moment and not leaving the patient alone when dying and having good family relationships and saying goodbye to loved ones before death will lead to a good death [13, 73, 76, 77]; however, Ling et al. state in their study that patients prefer not to die before their children, while the children wished to be with their loved ones until the last moment [49].

A good treatment staff- patient relationship is another effective factor [41, 46]. Consistent with these studies, it was shown in Curtis et al.‘s study that family satisfaction with the health care team is related with the higher death quality perception by the patient’s family members [70]. Similarly, it was found by Chindaprasirt et al., Hirai et al., as well as Beckstrand et al. that having a good relationship with the medical staff and effective communication in the health care team are factors affecting a good death [73, 76, 77]. Considering that patients spend the last stages of their lives in hospitals, good relationships and the knowledge and expertise of caregivers can lead to a good death by creating a sense of trust in them.

In various studies, access to palliative care and the time of referral to hospice centers have been mentioned as a factor for achieving a good death [33, 45, 46, 50]. Consistent with these studies, Schockett et al. also referred to the delayed referral of the deceased for hospice services in 13.7% of cases, and their family members reported less overall satisfaction [80]. Also, Teno et al. stated that family members of patients receiving hospice services were more satisfied with the overall quality of care compared to patients who were cared for at home or other health centers, and 70.7 of them reported that the care services were of excellent quality [81]. Therefore, palliative care as a dimension of specialized and special treatments for the final stages of life by specialists can help in achieving a good death.

Individualized care focuses on the individuals and their specific health problem. It is designed for an individual and is therefore patient-centered [82]. The type of treatment or the use a private room can affect the caregivers’ perception of the patient’s good death [30, 53, 83]. Similarly, Kinoshita et al. found that outpatient medical services are effective in achieving a good death [45]. Gutiérrez-Sánchez et al. showed a positive and statistically significant relationship between the quality of death and the quality of individualized care [35]. Consistent with this study, Braun et al. showed that higher levels of quality of life in the advanced cancer population are related to the palliative care and hospice care [48]. It seems that outpatient treatments can provide the appropriate conditions for peace and achieving a good death by maintaining the patient’s relationship with his/her family.

Advanced care planning helps to decide the end-of-life issues of patients and leads to more attention to treatment and end-of-life wishes of patients [84]. Consistent with this study, Kastbom et al. referrd to patient participation in end-of-life decisions as a factor positively affecting a good death [13]. Also, Beckstrand et al. considered the patient’s non-participation in decisions or decisions that are based on the doctor’s needs as a barrier to achieving a good death [73].

Shinjo et al. referred to talk therapy as an effective factor for achieving a good death [44]. Kastbom et al. also referred to feeling comfortable with care providers, their conversations and attempts to gain patient’s trust as important factors for achieving a good death [13].

Paying attention to the-end-of-life preferences to achieve a good death is a factor that has been mentioned in several studies; for example, dying in a preferred place [35, 39, 45, 47–49, 53] or dying of natural causes [44, 52, 53]. Consistent with these studies, Curtis et al. and Hirai et al. showed that the patients who died in their preferred place had a higher quality of death [70, 76]. However, this result was in contrast to the study by Waghorn et al., who stated that place of death may not be a good indicator of the quality of end-of-life care [71]. On the other hand, several participants in Kastbom et al.‘s study explicitly expressed their desire to allow death to take its natural course [13]. Fulfilling the end-of-life preferences of patients in the form of advanced care planning (ACP) provides the appropriate conditions to achieve a good death by creating a sense of respect and value and having peace of mind for the patient. Also, the patients’ point of view also states that clear decision-making and preparation for death are important factors affecting a good death [14].

Strengths of the study

Factors related to a good death can be examined from different perspectives. Caregivers are one of the most important sources, so far no systematic study has examined the factors associated with a good death from their perspective.

Limitations

One of the limitations of the present study was that only English studies were included. Another limitation includes that only the perspective of the patients’ companions was investigated, and it would be important to conduct further studies and investigate the factors related to a good death from the perspective of physicians, nurses, and other medical service providers and compare it with the present study. Another limitation is that these results may not be generalizable to all diseases and it is recommended to conduct similar studies on other life-threatening non-cancerous diseases. The next limitation is that most of the included studies are conducted in Asian countries and it may not be possible to generalize it to Western countries. On the other hand, the majority of respondents are women, which can affect the results.

Conclusion

Considering the difficulty of evaluating cancer patients’ views on a good death, it is necessary to pay attention to the views of their informal caregivers, including the families of patients involved in end-of-life care. Factors associated with a good death from the view of caregivers of cancer patients can vary from person to person and may be affected by different conditions. Considering the comprehensiveness of the extracted factors in the form of comfort and support factors, it seems that a holistic approach is necessary to achieve a good death. Informal caregivers and families of cancer patients at the end of their patient’s life have a better understanding of the conditions of dying and a good death. At the same time, various cultural, social, economic, demographic factors, previous experiences, stress and anxiety, and mental issues can affect the good understanding of their death. Also, it seems that physiological issues, daily activities, background problems in addition to the patient’s main illness, a person’s awareness of the disease, religious and spiritual well-being, communication and economic conditions can be understood by informal caregivers. Support from family and caregivers, receiving palliative and individualized care, talking about death and end-of-life preferences of patients are among the factors that researchers agree on. Achieving the ideal conditions for a good patient death requires considering the patient’s end-of-life preferences and receiving specialized end-of-life care. Therefore, there is a need for planning to understand what constitutes a good death from the perspective of informal caregivers.

Authors’ contributions

H.MR and S.B conceived the topic and design of this review. H.MR and S.B were major contributors in conducting study selection and data extraction. S.B analysed and interpreted the data, and H.MR, A.E and L.K drafted the manuscript. All authors reviewed and provided critical comments for revision, and approved the final manuscript.

Funding

No funding grants were received for this review.

Data availability

All data generated or analyzed during this study are included in this published article.

Declarations

Ethics approval and consent to participate

Not applicable for this study design.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.