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Abstract
Background and objective An in-depth understanding of what constitutes a good death among patients with cancer is vital to providing patient-centred palliative care. This review aimed to synthesise evidence on the perceptions of a good death among patients with cancer.
Methods This systematic review involved a synthesis of qualitative data. A three-step process suggested by the Joanna Briggs Institute was used to synthesise the data.
Results A total of 1432 records were identified, and five articles met the inclusion criteria. Seven synthesised findings emerged: (1) being aware of cancer, (2) pain and symptom management, (3) dying well, (4) being remembered after death, (5) individual perspectives of a good death, (6) individual behaviours leading to a good death, and (7) culture and religions. A structural framework was developed to elicit two layers that could be regarded as determinants of a good death. One layer suggested how multiple external issues impact a good death, whereas the other layer involves patients’ internal attributes that shape their experiences of a good death. The elements in the two layers were inter-related to exert a crossover effect on good death in specific cultural and religious contexts.
Conclusion A good death is a process initiated from the time of awareness of cancer and extends beyond demise. Holistic approaches encompassing the management of physical and psychological distress along with psychosocial behavioural interventions to enhance patients’ positive perspectives and behaviours are recommended to improve their quality of life and death.
- cancer
- end of life care
- quality of life
- supportive care
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Achieving a good death has become one of the most important goals of palliative care.
Reviews that have focused on exploring the notion of a good death from patients with adult cancer are somewhat fragmented.
WHAT THIS STUDY ADDS
Seven synthesised findings described the core elements of a good death among patients with cancer.
A novel conceptual framework was developed to elicit the relationship between a good death and multiple external issues, the internal attributes of patients and culture and religions.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Future research is recommended to understand patients’ perceptions of a good death dynamically since awareness of diagnosis.
The novel conceptual framework provides guidance for healthcare providers to improve end-of-life care by addressing both external and internal issues that affect patients’ perceptions of a good death.
Background
Cancer is a leading cause of death worldwide, accounting for nearly 10 million deaths in 2020.1 Although scientific and technological advancements have extended the life expectancy of patients with cancer, cancer is still frequently considered synonymous with the term ‘death’. Furthermore, patients with cancer usually experience a lot of physical and psychosocial distress, which significantly impacts their quality of life and death. Promoting the quality of death and achieving a ‘good death’ is one of the key components of optimal palliative care.
There is no clear definition of a good death. In the literature between the 1960s and 1970s, the term good death was originally used to describe the act of euthanasia, referring to situations in which life was deliberately ended actively or passively as required by the patients or surrogates.2 3 The use of the term good death broadened in the 1980s and moved beyond being synonymous with euthanasia.4 5 Researchers and clinicians began to focus on the attributes of a good death, particularly issues regarding to persons retaining control and the timing of death being appropriate.6 The term ‘good death’ and ‘good dying’ was used crosswise in a lot of research. For example, Hutter et al7 regarded good death and good dying replaceable that the essential attributes of good dying included pain relief, mental well-being, quality of dying and quality of healthcare at the end of life. However, most researchers used the term ‘good death’ within the hospice and palliative care to describe the multifaceted and individualised experience of patients, such as awareness of death, preparation for death and preferences for dying process.6 8 9 In this perspective, good death seems to have a broader meaning than good dying that not only includes the moment of death but also a relatively long period of time before and after death. The current review uses the term ‘good death’ and aims to identify potential unmet needs of patients with cancer by eliciting the multifaceted and individualised experience for patients with cancer approaching death.
Perceptions as to what constitutes a good death vary according to situational factors, such as patients’ and their families’ past experiences with death. A cross-sectional study on the perception of a good death among 180 pairs of patients and relatives revealed that three domains—not being a burden to others, preparation for death, and physical and psychological comfort—were underestimated by relatives compared with patients.10 A study with retrospective interviews also suggested that patients and their family caregivers had different preferences for places of death.11 These studies indicated that good death was a highly individual and subjective concept, which proxy views might not be able to reflect patients’ actual thoughts.10 11 Therefore, an in-depth understanding of what constitutes a good death from the perspective of the patients themselves is vital to providing patient-centred care and improving their quality of life and death.
A systematic review of systematic reviews suggested that the works focused on exploring the notion of a good death from patients with adult cancer were somewhat fragmented.12 The current reviews focused on the good death from a greater sample heterogeneity, including patients with different terminal illnesses, surrogates, families, physicians, nurses and other healthcare professionals. Krikorian et al6 synthesised the notion of good death from the perspective of patient population, including patients’ AIDS, cardiovascular disease, chronic obstructive pulmonary disease and cancer, which provided a general understanding of the concept from patients. However, the sufferings, and physical and psychosocial distress the patients experienced during the cancer trajectory differ from other advanced diseases. Specifically, patients usually do not consider cardiovascular disease or chronic obstructive pulmonary disease synonymous with the term ‘death’. Patients with AIDS usually experience more complex psychosocial distress including social discrimination and isolation than patients with cancer, which might affect their notion of a ‘good death’. The conclusions resulting from a heterogeneous group of patients may not perfectly fit patients with cancer. Therefore, our study adopted a meta-aggregation approach to comprehensively report findings from multiple qualitative studies, aiming to obtain a complete picture of how patients with cancer perceive a good death. The current study is expected to have implications for palliative care specialists providing holistic care for patients with cancer and promoting their quality of life and death.
Methods
Aims and design
This study aimed to synthesise qualitative research evidence on the perception of a good death among patients with cancer. By integrating the published evidence in both English and Chinese, the review also aimed to provide implications to improve palliative care under Chinese contexts. The protocol is registered in PROSPERO (CRD42021266629) and published elsewhere after a critical peer review.13 The systematic review was conducted following the guidelines of the Joanna Briggs Institute (JBI) methodology for the systematic review and synthesis of qualitative data.14 The study is reported according to the Preferred Reporting Items for Systematic Review and Meta-Analysis.15
Search strategy
A comprehensive search of published studies was conducted. Keywords that may be useful for developing a search strategy for each database were initially conducted in PubMed in July 2021 and finally performed in March 2022. Published papers were collected from the following databases: MEDLINE (via PubMed), EMBASE, PsycINFO, CINAHL, Scopus, Web of Science and two Chinese databases (CNKI and WANGFANG DATA). In PubMed/MEDLINE, the following queries were used: (“cancer”[Title/Abstract] OR “neoplasm”[Title/Abstract]) AND (“good death”[Title/Abstract] OR “quality of death”[Title/Abstract] OR “quality of dying”[Title/Abstract] OR “good dying”[Title/Abstract] OR “dying well”[Title/Abstract]). The search strategies and corresponding search results are attached in the online supplemental file. Reference lists of studies that met the inclusion criteria were manually reviewed to supplement the database search.
Supplemental material
Selection criteria
The inclusion criteria were as follows13: (a) studies that aimed to explore the perception of good death (eg, the views/perspectives/attitudes/belief about a good death) among patients with cancer or main factors (ie, environmental, illness-related or other possible factors) associated with a good death; (b) qualitative studies adopting a focus including but not limited to phenomenology, ethnography and grounded theory (mixed-methods studies with a narrative description of a good death were also considered); (c) studies published in English or Chinese. Studies conducted in any setting, including but not limited to hospitals, hospices, long-term care facilities and private residences of patients, were eligible for inclusion. Epidemiological studies and studies focusing on the certificate of death were excluded. Studies involving a group sample of patients, families and healthcare providers were included if the findings for patients were synthesised separately. Studies that included a heterogeneous group of the terminally ill, such as patients with cancer and heart disease, were excluded as the synthesised information may not typically reflect the perceptions of the patients with cancer.
The current review did not limit the time of the studies because the term ‘good death’ broadened in the 1980s and moved beyond being synonymous with euthanasia. By synthesising all studies regardless of years, the review might inform how the notion of good death changed across the years.
Study screening and selection
All identified citations were imported into the JBI System for the Unified Management, Assessment and Review of Information (JBI SUMARI) for study screening after duplication checking via EndNote V.20. Studies identified for the review were retrieved using the established selection criteria. Two reviewers independently completed the abstract/title and full-text screening. Any disagreements between the two reviewers were resolved by discussion with a third reviewer.
Quality appraisal
Included studies were critically appraised using the JBI Critical Appraisal Checklist for Qualitative Research (JBI CACQR) using the JBI SUMARI.14 JBI SUMARI allows two independent reviewers to conduct the critical appraisal of each research synthesis selected. The checklists consisted of 10 items to assess the methodological quality of a study and to determine the extent to which a study has addressed the possibility of bias in its design, conduct and analysis. Two reviewers independently appraised the studies with the JBI SUMARI. Studies were excluded if they received less than six yes ratings on the checklists. The cut-off for exclusion was made in advance and agreed upon by all reviewers before the commencement of critical appraisal. Any disagreements were resolved by a third reviewer.
Data extraction
Two reviewers independently documented information based on the JBI standardised data extraction tool via the JBI SUMARI. The authors, year of publication, study design, methodologies, methods, sample demographics, characteristics of participants (age, gender, type of cancer and illness-related information), phenomena of interest, settings and context, data analysis, primary findings, authors’ conclusions and comments were extracted and tabulated. Any disagreements were resolved through discussion with a third reviewer.
Data synthesis
We would like to define the terms ‘findings’ and ‘synthesised findings’ to improve understanding during data synthesis. The findings refer to the themes and metaphors identified in the original studies. The synthesised findings were based on all the findings across the included studies in the current review.
A three-step process was used to synthesise the data.14 First, all findings from all included studies were extracted with an accompanying illustration including quotes or fieldwork observations. The findings were identified from the results section only. If themes were grouped into categories, the themes rather than the categories were extracted and analysed. A level of ‘credibility’ for each finding was allocated based on the reviewers’ perceptions of the degree of supporting illustration. There are three levels of credibility: unequivocal>equivocal>not supported. The process was conducted independently by two reviewers. The findings that were not supported were presented separately and not included in the meta-aggregation. Second, the findings were grouped into categories based on the similarity of the concepts. Third, the categories were further grouped into synthesised findings. The second and third steps were conducted by a single reviewer. All authors examined the appropriateness of the synthesised findings and their accompanying descriptions. Any disagreements were resolved through discussion.
Confidence of the synthesised findings
This review used ConQual to rate the confidence of the synthesised findings.16 Confidence is defined as the belief or trust that a person can place in the results and was determined by the dependability and credibility. Dependability can be established if the research process is logically traceable and clearly documented. The level of dependability for each study was determined by five items from the JBI CACQR to assess the confirmability of a study. For each study, if four to five of the items were rated as yes, the findings remained at the current level (high). If two to three of the items were rated as yes, the findings moved down to one level (ie, from high to moderate). If zero to one item was rated as yes, the findings moved down two levels (ie, from high to low). The synthesised findings were then downgraded based on the aggregate level of dependability from across the included findings. Credibility evaluates the goodness of fit or the congruence between the author’s interpretation and the supporting data (eg, quotes, fieldwork observations); thus, the level of credibility is evaluated whether the extracted finding from a research report is unequivocal (findings accompanied by an illustration that is beyond reasonable doubt and therefore not open to challenge), equivocal (findings accompanied by an illustration lacking clear association with it and therefore open to challenge) or unsupported (findings are not supported by the data). The credibility levels of the synthesised findings were determined by the credibility levels of the findings. If the synthesised findings included a mix of unequivocal and equivocal findings, the credibility of the synthesised findings was downgraded one level. The level of credibility of synthesised findings was downgraded two or three levels if the synthesised findings included equivocal findings or a mix of equivocal and unsupported findings. According to dependability and credibility, the ConQual system gave an overall score of high, moderate, low or very low to assess the confidence of the synthesised findings.
Results
Literature search
Figure 1 shows the retrieval and selection processes of these studies. The search identified 2236 articles (2033 in English and 203 in Chinese). A total of 1432 studies remained after duplicates were eliminated. We excluded 1367 citations by reading the titles and abstract; thus, 65 potentially relevant articles were identified for detailed review. Full-text screening excluded 57 articles that did not meet the selection criteria. Three studies were excluded after the quality appraisal.17–19 Two articles reported one study. Subsequently, five articles involving four individual studies were included and analysed.
Flow diagram of the review process.
Quality appraisal
Table 1 shows the results of the quality appraisal of the included studies. None of the five articles included statements on the author’s philosophical perspectives. Only one study identified the researcher culturally and theoretically. This is also the sole study that reported that the researchers’ role might impact the interpretation of findings. The illustrations in the five articles presented the participants and their voices well. Studies drew appropriate conclusions based on the data collected except one study by Mak,20 21 in which some findings lack clear association with their accompanied illustrations.
Results of the quality appraisal
Study characteristics
Table 2 shows the characteristics of the studies. The studies were published between 1993 and 2017 and were conducted in Hong Kong, Taiwan, Sweden and England. The sample size ranged from 18 to 66. All studies included patients with different types of cancer. Two studies collected data using semistructured interviews, and only one study used in-depth interviews with prolonged participant observations and a review of clinical records.22 This was also the sole study to collect data over a rather extended time period. Interviews were conducted several times within the dying process to collect more information and also to ensure consistency. One study did not clearly state the method for data collection.9
Characteristics of the studies
Except for one study that aimed to compare the concepts of a good death by patients and staff,23 all sought to gain an understanding of the meaning or perception of a good death by patients with cancer. These studies asked patients open-ended questions about their understanding of or need for a good death or asked patients to describe their concerns, needs or expectations at the end of life or understanding of their condition and awareness of dying. Methods for data analysis included thematic analysis, content analysis and the constant comparative method.
The synthesised findings
Table 3 provides an overview of the findings and synthesised findings. Seven synthesised findings were identified from 42 findings and 13 categories across the four studies. The synthesised findings can be categorised into two layers (figure 2). One layer suggests patients’ wishes, expectations or experiences on external issues to achieve a good death. It contains four synthesised findings: (1) being aware of cancer, (2) pain and symptom management, (3) dying well and (4) being remembered after death. This layer also indicates that a good death is a process initiated from the time of awareness of cancer and that extends beyond the demise of a patient. The other layer involves patients’ internal attributes that shape their experiences of a good death, pertaining to two synthesised findings: (1) individual perspectives of a good death and (2) individual behaviours that lead to a good death. The elements in the two layers were inter-related to exert a crossover effect on good death in a specific cultural and religious context.
The synthesised findings describing a good death.
The synthesised findings
Being aware of cancer
The synthesised finding of being aware of cancer consisted of two categories: receiving the ‘bad news’ and the contexts of awareness.20 Receiving the ‘bad news’ was the first step of being aware of cancer, which was distressing and usually gave the patients a ‘death sentence’. Despite the distress, a majority of patients in the study by Mak expressed their need to know the truth of the diagnosis so that they could develop an awareness of imminent death.20 The awareness of dying enabled them to maintain hope, prepare for death and carry out the issues after their death. Awareness contexts are defined as what patients and stakeholders know of the patients’ conditions, along with patients’ recognition of others’ awareness of his/her conditions. Awareness contexts impact patients’ experiences of dying by affecting interactions among patients, family and healthcare providers. Although being aware of cancer appeared to be the initial basis for discussing good death for some patients, it might also be valid for some patients to not be aware of cancer to minimise the risk of unnecessary psychological distress. Consequently, some patients were in a closed awareness context in which they did not recognise cancer but everyone else did.
Pain and symptom management
Pain and symptom management was viewed as a hallmark of a good death, as well as high-quality end-of-life care. This synthesised finding was derived from four findings, and only one category was identified.21 22 Distressing physical suffering was reported as the main reason for emotional turmoil and wishes to hasten death. Minimising the agony of physical symptoms, such as pain, dyspnoea and insomnia, seemed important to a good death.
Dying well
Dying well was frequently reported in the included studies, which focused on the moment of death or a short period before death. This synthesised finding consisted of three categories: dying comfortably, dying with love and caring, and dying in a preferred environment.9 20–23 Dying comfortably was characterised by a quick, quiet and painless dying, as well as keeping the body intact. Some patients reported dying in one’s sleep could be a good death: just lying in bed and going off to sleep, quietly and without lingering. Besides physical comfort, love, caring and non-attachment during the dying process were also important. A preferred dying environment was related to a way to maintain dignity and a good death. In addition to the attributes of cleanliness and neatness, patients had their preferences for places for dying, including home, a hospital or a pretty place with sunshine, flowers and grass to enjoy nature. For example, some Chinese patients chose not to die at home or in hospital because it was bad luck to die at home or due to the traditional thought of ‘fallen leaves should return to the roots’ (Luo Ye Gui Gen in Chinese).
Being remembered after death
This synthesised finding was derived from one finding and was grouped into one category. One study reported that a good death was related both to one’s life before death and to the world after his/her death.9 The patients hoped to be remembered and would meet their loved ones again one day.
Individual perspectives of a good death
Individual perspectives on a good death include patients’ internal attitudes, views or subjective feelings that affect their experiences of a good death. It was derived from 12 findings and was grouped into two categories: acceptance of death and life meaning.9 21 22 Acceptance of death was viewed as the patients’ act of accepting issues related to cancer and death. Rather than self-directed awareness of dying, the majority of patients’ awareness of death was triggered by medical treatments; thus, they were hard to deal with it and experienced several emotions that lasted until they died. Their acceptance of death was helpful in managing their emotions. Life meaning referred to the value or meaning when ruminating about past life: patients once leading or experiencing a meaningful life with their families was regarded as an important attribute to achieving a good death.
Individual behaviours leading to a good death
Individual behaviours were also one of the most important internal attributes that affect patients’ dying process. This synthesised finding consisted of two categories: living in the moment and preparing for death.9 21 22 Some patients commented that having been diagnosed with cancer increased their sense of living for the moment, such as letting go of grudges, upsetting thoughts and getting through day by day. Preparing for death was mainly performed by settling all affairs and completing social obligations. Many patients tried to settle all affairs before death, including but not limited to completing unfinished business and wishes, saying goodbye to loved ones, making funeral arrangements, sorting out financial affairs and preparing loved ones to accept their death, although with great discomfort. Social obligations mainly referred to the important moral and social obligations to educate children as a parent or care for parents as filial sons or daughters. Completing obligations gave patients a sense of completion and some form of good death.
Culture and religions
The included studies suggested that the perception of a good death was affected by culture and religion. Given that half of the studies were conducted in China, the synthesised finding consisted of two categories: Chinese contexts and other contexts from six findings.9 20–22 Confucius was an important cultural factor affecting patients’ perceptions of a good death. They believed in fate and mission (‘Tian Ming’ in Chinese), which decided the time of birth and death and the manner of death. Taoism and Buddhism were two common traditional religions among the Chinese patients. Patients who practised Taoism tried to maintain a harmonious relationship with the universe and to die with peace of mind according to the law of nature. Buddhism encouraged patients to have a better rebirth by not denying the inevitable death and surrendering themselves to karma (a Buddhist term). The category of other contexts includes Christianity and non-believers. Some Christians believed ‘God’ could strengthen them with eternal hope and accepted death as a part of God’s eternal plan. A patient reported that ‘I have to be with the Lord. I’ve always believed in God. You just go peaceful.’23 However, a Catholic patient complained to God and thought God had not cured her and was not helping her, although she had adjusted her life by going to church and praying more often.21 Some patients indicated that they felt they accepted death although they had no particular religious beliefs or faith.21
ConQual summary
Table 4 shows the ConQual summary of the synthesised findings. The dependability remained at the current level (high) for all synthesised findings, as the included studies were all rated four yes for the items. The credibility levels of the synthesised finding of being aware of cancer were downgraded two levels due to the equivocal findings. The credibility level of two synthesised findings (individual perspectives of a good death and culture and religions) was downgraded one level due to a mix of unequivocal and equivocal findings. Therefore, four synthesised findings were rated as high-level evidence, two synthesised findings were rated as moderate-level evidence and one synthesised finding was rated as low-level evidence.
ConQual summary of the findings
Discussion
Summary of the findings
To the best of our knowledge, this review is the first attempt to explore the perceptions of a good death from the perspectives of patients with advanced cancer. The findings suggested that a good death for patients with cancer was a process that was initiated with being aware of cancer and that extended beyond the demise. We developed a structural framework to elicit the process and core elements for each stage. This proposed framework would act as a source of guidance on holistic palliative care to provide physical and psychosocial support and help patients achieve a good death.
The current review found that a good death was initiated from the time of awareness of cancer. Unlike non-cancer diseases, patients with cancer usually experience sharp functional decline after diagnosis; thus, they tend to associate cancer with death.24 Receiving a diagnosis of cancer was viewed as a significant point of psychological distress in the course of their illness.25 26 Therefore, the way patients received the ‘bad news’ at the very beginning was directly related to patients’ stress, adjustment to stress, coping and satisfaction with care.27 Similarly, Hattori et al, who described the meaning of good death among the Japanese community, suggested that the boundaries for the concept of good death could start at the time of diagnosis or self-awareness of a terminal illness.8 The findings emphasise the importance of emotional and psychosocial support for patients when receiving the diagnosis. However, medical practitioners usually do not consider psychosocial support to be part of their role25; thus, early psychosocial support is not always available for patients.
Being aware of cancer was identified as the foremost element of a good death for the majority of Chinese patients. However, previous studies have suggested that the least commonly supported themes for a good death in Asian cultures were knowing what to expect in one’s future and knowing how long one had until death.6 28 Our reviews suggested that although most Chinese patients rarely talked about death and cancer and considered death taboo, they expressed the need to know the truth of the diagnosis so that they could develop an awareness of dying. Awareness of dying enabled them to make adjustments to maintain their hope, accept death and make preparations for it. Nevertheless, Chinese families often make decisions for patients and decide what the patient should know about the diagnosis and prognosis.29 30 This might deprive patients of freedom in terms of their wishes and choices, with families intervening intrusively in managing end-of-life situations. Being aware of cancer was not reported by patients in Sweden and England, but some patients valued autonomy and control according to their own preferences of dying. Being informed of death as the end approached did not increase their anxiety or symptom burden, but improved conditions for a good death.9 Therefore, whether the awareness contexts were appropriate varied from individual to individual and from culture to culture. It is worth noting that being aware of the disease might be a large difference of the notion of good death among patients with cancer and those with non-cancer. Despite the advances of anti-cancer treatment, most of patients still consider cancer synonymous with the term ‘death’ that whether to disclose the real diagnosis or disease progress to the patient was an ethical consideration and difficult decision for healthcare providers and family members. It also highlights the importance for palliative care to explore patients’ recognition of cancer and also their preferences on the contexts of awareness.
The results of this review bear some similarities to previous reviews on the topic of a good death, including pain and symptom management, dying without pain, family support and preferences for the dying process.3 6 31 32 Specifically, freedom from pain was a priority for achieving a good death. Excessive medical treatment (cure-centred therapies) and inadequate analgesia have been reported as the major causes of poor pain and symptom management. Chao22 reported that free choice of treatments without meaningless and devastating medical support for holding on to life, request for no resuscitation and requesting death in sleep were helpful in managing pain and ensuring a non-lingering death. It also reflected how patients’ autonomy and control over the dying process contributed to a good death. A worldwide, regional and national study showed that both the demand and consumption of opioid analgesics were lower in many Asian countries than in countries of Europe and North America.33 For example, the daily doses per million people per day of opioid analgesics were 91 in China, 43 879 in the USA, 22 941 in Canada and 23 352 in Germany.33 Attention is needed to identify multiple impediments from physicians, patients and policies to improve adequate analgesia and manage pain for patients. Given that half of the included studies were conducted in China, the causes of poor pain and symptom management may differ in other countries or areas that deliver better shared decision-making, advance care planning and pain medication use.
One study reported an association between a good death and aftermath concerns.9 Some patients felt uncomfortable when thinking about their existence coming to an end after death. In the theory of psychosocial development, Erikson explained that the final two stages of development focused on generativity: the desire to pass something along to future generations.34 Chochinov et al35 further described that patients could find solace and comfort when they left behind something lasting and transcendent of death. Therefore, by helping patients to ruminate on their important life stories and produce legacy documents to record their lives, some psychotherapies, such as life review36 and dignity therapy,37 38 exert positive effects on improving end-of-life experiences. Patients’ concerns about their being dead also have implications for bereavement care. Long39 reported that a good death for patients indicated that their families had done their duty to care for them and protected patients from mental and physical suffering. Integrating end-of-life and bereavement care by producing legacy documents might be helpful in achieving good death and relieving distress in family members.
Our results further support the idea that a good death is highly individual and heterogenic. Patients’ perception of a good death is strongly associated with their inner attributes, such as individual perspectives and behaviours. Whether patients led a meaningful life or viewed their life meaningful was strongly associated with their perception of a good death. Therefore, meaning-centred therapies are recommended for patients with advanced cancer to improve end-of-life care quality. Furthermore, living in the moment was an important strategy to adjust emotional distress. Some patients in Sweden expressed an increased focus on living in the moment with the prospect of imminent death.9 Chao22 related this behaviour with meditation in the Chinese cultural context and Taoism. Taoist philosophy is to let everything act by itself. Individuals would be calm and free from sorrow when they were externally free from phenomena and internally unperturbed.40 It suggested that meditation, such as mindfulness meditation, might be a good psychological intervention to relieve emotional distress and help patients achieve a good death.41 42 Although good death is highly individual and heterogenic, the synthesised findings related to individual perspectives and behaviours highlighted some common but important internal characteristics of patients that facilitate a good death, which provide implications for researchers and clinicians to improve the quality of end-of-life care by developing relevant psychosocial intervention to improve their perspectives and behaviours.
Previous reviews have demonstrated that culture and religions impacted patients’ perception of a good death.3 6 Krikorian et al reported that culture shapes the meaning of illness, suffering and dying and that differences regarding the notion of a good death may differ across cultures.6 Corresponding with previous studies, our review showed that although there is considerable agreement about concordance with others, such as pain and symptom management, dying comfortably, dying with love and caring, preparation for death and the notion of a good death might be affected by the culture and religions. However, our findings also indicated that either Chinese or Western religions may give patients a sense of hope and a source of unconditioned acceptance. Therefore, in clinical practice, exploring or discussing patients’ personal beliefs and experiences of death and dying within their cultural and religious contexts can help address realistic and unrealistic fears.9 For example, by asking the patient ‘how do beliefs or culture affect your perception of a good death?’ or ‘have you experienced the death of a family member or friend?’. However, only four studies were identified in the current review, which limited further exploration of how different cultures shaped good death.
Defining good death as a process indicates that patients’ perceptions of death may change over the course of the dying process. However, all included studies explored the notion of good death from the patients near the end of life. How patients view good death at the time of being aware of cancer and whether the notion of good death changes from the time of being aware of cancer to near death or not remains unclear. We call for in-depth interviews that take place over a rather extended time period to dynamically explore patients’ perceptions of a good death in elaborate and comprehensive detail. During the review process, we found a number of studies on good death from the perspective of families, physicians and general populations, while qualitative research focusing on patients with cancer themselves is somewhat fragmented. Hart et al expressed their considerations of the social ideology of death and dying,43 which might increase the risk of legitimisation for a form of social control over people who are dying. Increasing research to obtain an in-depth understanding of good death among patients themselves might be helpful in decreasing the risk, which could also help provide palliative care responding to the wishes of the patients.
Strengths and limitations of this review
A key strength of this systematic review is its specific focus on patients with cancer rather than heterogeneous groups compared with previous systematic reviews. The focused population enabled us to obtain an in-depth understanding of how patients with cancer view good death and to promote high-quality care for patients with cancer during the course of cancer. Our proposed framework for a good death also constitutes a strength. By carefully analysing the original studies and frequently discussing them among the research team, a detailed framework was developed to illustrate what constitutes a good death and how patients’ perspectives, behaviours, culture and religions impact their experiences of dying. The framework is important for guiding holistic palliative care and informing the development of palliative care policy.
Despite the strengths of this systematic review, several limitations must be acknowledged. First, studies involving a mix of participants with patients, families and physicians were excluded, so some important expressions by patients might be missed. Moreover, studies involving all types of terminally ill patients were excluded due to population heterogeneity. Second, only four studies with some risk of bias were identified. The included studies were conducted in China, Sweden and England; thus, the generalisability of the conclusions in other countries or cultures may be limited. Also, as the majority of the included studies were conducted in 1990s, the notion of good death might be changed over time due to the advances of anti-cancer treatment. By comparing with previous reviews, some common attributes of good death can be identified. We call for more research on the notion of good death from patients with cancer to explore whether their perception of good death changed over the years. Further, the review included Chinese database, which might have induced selection bias. However, after quality appraisal, articles identified in Chinese databases were excluded due to various quality limitations, which also indicated the relatively low quality of research in China. Our review showed that the research on the notion of good death from the perspective of patients with cancer is fragmented. The ConQual result also highlighted the importance of improving the credibility of the qualitative research on the topic. More qualitative research is required to explore the perceptions of a good death among patients from different cultures and religions. Additionally, the first author, a Chinese woman, who has long been affected by Chinese culture, may have an impact on data synthesis. To control for this impact, a rigorous data synthesis process was followed, and the synthesised findings were discussed within the team group.
Conclusions
This review synthesised qualitative evidence on the perceptions of a good death among patients with cancer and contributed to a novel structural framework for a good death. The findings suggest that a good death is a process initiated from the time of awareness of cancer and extends beyond the demise of a patient. A good death process is affected by multiple external issues, such as medical treatment, medical care, family support, policies or environment, as well as the internal attributes of patients, such as individual perspectives or behaviours related to a good death. Therefore, a holistic approach encompassing the management of physical and psychological distress along with psychosocial behavioural interventions to enhance patients’ positive perspectives and behaviours is recommended to improve their quality of life and death. Furthermore, more qualitative studies are recommended to enrich the perception of a good death from patients’ perspectives and to validate the contents of the framework and its application in different cultural and religious contexts.
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References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors All authors have made substantial contributions to the manuscript. GW and JX designed the study and drafted the manuscript. ZC was involved in the study selection, data extraction and data synthesis. CH, YD and ST were involved in data synthesis and critically revised the manuscript. All authors read and approved the final manuscript.
Funding The study was funded by Natural Science Foundation of Hunan Provincial (no. 2022JJ40650) to cover the fees for language editing.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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