A bioethical perspective on the meanings behind a wish to hasten death: a meta-ethnographic review

Abstract

Background

The expressions of a “wish to hasten death” or “wish to die” raise ethical concerns and challenges. These expressions are related to ethical principles intertwined within the field of medical ethics, particularly in end-of-life care. Although some reviews were conducted about this topic, none of them provides an in-depth analysis of the meanings behind the “wish to hasten death/die” based specifically on the ethical principles of autonomy, dignity, and vulnerability. The aim of this review is to understand if and how the meanings behind the “wish to hasten death/die” relate to and are interpreted in light of ethical principles in palliative care.

Methods

We conducted a meta-ethnographic review according to the PRISMA guidelines and aligned with Noblit and Hare’s framework. Searches were performed in three databases, Web of Science, PubMed, CINAHL, with no time restrictions. Original qualitative studies exploring the meanings given by patients, family caregivers and healthcare professionals in any context of palliative and end-of-life care were included. A narrative synthesis was undertaken. PROSPERO registration CRD42023360330.

Results

Out of 893 retrieved articles, 26 were included in the analysis, accounting for the meanings of a total of 2,398 participants. Several factors and meanings associated with the “wish to hasten death” and/or “wish to die” were identified and are mainly of a psychosocial and spiritual nature. The ethical principles of autonomy and dignity were the ones mostly associated with the “wish to hasten death”. Ethical principles were essentially inferred from the content of included articles, although not explicitly stated as bioethical principles.

Conclusions

This meta-ethnographic review shows a reduced number of qualitative studies on the “wish to hasten death” and/or “wish to die” explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. There is a need for healthcare professionals to address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members. More qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice are needed.

Background

The wish to hasten death and associated terms, such as “desire to die”, “wish to die”, or “request to hasten death”, have gained increasing interest in the medical and bioethical literature in the last two decades [1, 2]. In 2016, an international consensus definition was proposed for the “wish to hasten death”, where the terms “wish” and “desire” were used interchangeably [3]. The wish to hasten death was thus defined as a reaction to suffering, where the patient considers that accelerating death is the only way out. This wish is associated to the context of experiencing a life-threatening or life-limiting condition and may be expressed spontaneously or after being queried [3,4,5]. This concept should be distinguished from the acceptance of impending death or from a wish to die naturally, although preferably soon [3,4,5].

Evidence shows that the wish to hasten death is associated with various factors, such as physical symptoms, psychological distress (e.g., depression, fears, hopelessness), existential suffering (e.g., tiredness of life, loss of meaning of life), and/or social aspects (e.g., feeling like a burden to others) [1, 3,4,5]. According to Pestinger et al. [6], three main motivations and meanings underlying a desire to hasten death among patients with advanced disease can be thematized: self-determination, agony, and time [6]. Yet, the expression of a desire to hasten death is not necessarily a synonym for wanting healthcare professionals to practice euthanasia or physician-assisted suicide. Instead, expressing a wish to hasten death is sometimes used as an extreme coping strategy against anticipated agony or as a way to alleviate psychological distress and regain a sense of control [3, 4, 6]. In fact, what many patients who express a wish to hasten death expect from their caregivers is for them to be open so they can share and explore their ideas, emotions and perceptions [6].

The wish to hasten death raises important ethical concerns and is related to ethical principles that are intertwined within the field of medical ethics, particularly in the context of end-of-life care and decision-making. Despite the traditional relevance given to the four main pillars of bioethics and medical ethics (i.e., the ethical principles of autonomy, beneficence, non-maleficence, and justice) [7], other ethical principles, such as dignity, fidelity, and vulnerability, have shown to be paramount in end-of-life care [8, 9]. The latter ethical principles help healthcare professionals and caregivers to better understand and prioritize patients' autonomy, respecting their wishes [7, 8]. Moreover, it is important to recognize the importance of providing compassionate and holistic care, addressing physical, emotional, and spiritual needs of patients and their loved ones. This requires the establishment of a person-centered care plan that provides high-quality end-of-life care, respects patients' autonomy and dignity and offers comfort and support during difficult times [9, 10, 12]. In fact, embracing holistic clinical practices as well as human integrity are crucial when caring for patients with life-threatening and/or life-limiting diseases [7, 9,10,11,12].

Autonomy is a foremost ethical principle in healthcare and a core principle in ethical decision-making in palliative and end-of-life care [13,14,15,16]. It recognizes that patients have the right to decide about their medical treatment and care, including accepting or refusing medical therapeutics, withdrawing life-sustaining treatment, or requesting medical aid in dying based on their values and goals [10, 14,15,16,17]. Healthcare professionals should respect and support patients’ autonomy by providing them with relevant information, ensuring their understanding, and involving them in the decision-making process [14, 16, 18]. Autonomy is a cornerstone in palliative and end-of-life care ethics due to its relevance and implications, namely in terms of anticipating situations and decisions for the future in order to meet patients’ wishes and preferences for care [14, 16].

As a core ethical principle, dignity stands for intrinsic worth and respect for the equality of all individuals as human beings, regardless of their circumstances, age, gender, ethnicity, socioeconomic status, or health condition [19, 20]. Dignity encompasses the idea that everyone deserves to be treated with respect, fairness, and compassion, and raises the need to prize the unique perspectives and experiences of the patients. It ensures that patients’ physical, emotional, and psychological well-being is prioritized and honored [21].

Vulnerability generally refers to a state or condition of being susceptible to harm [22, 23]. It often stems from physical, emotional, and psychological fragility and social factors undermining individuals’ ability to protect themselves or express autonomy [23]. Defining vulnerable persons or populations has proved to be more difficult than initially expected [22,23,24]. In the context of healthcare, vulnerability can manifest itself in many ways, including individuals’ experiences of illness, injury, disability, and even emotional harm [23]. Social determinants of health, such as poverty, homelessness, or discrimination, can potentiate vulnerability and create additional barriers to accessing healthcare and support [12, 22, 24]. In some cases, the bioethical principles of vulnerability and autonomy seem opposite. However, establishing a dichotomy between these two ethical principles drives to situations where both principles cannot be reconciled [23]. In fact, vulnerability ultimately leads to the establishment of relational autonomy, where vulnerability and autonomy do not stand in opposition to each other [23].

The literature suggests that vulnerability is inherent to situations and not to specific groups of people [23,24,25]. Also, the location and context of end-of-life care have been associated with vulnerability. For instance, MacArtney et al. [25] point out that patients in palliative care inpatient units conceptualized home as their preferred place of care at the end of their lives, although they perceived a sense of bodily vulnerabilities. In these situations, institutional care was considered as a protection towards their families due to the social, emotional, and relational burdens of dying [24,25,26]. Patients receiving palliative care often experience extreme vulnerability, which may be perceived at various levels and can be categorized differently [23, 24, 26]. This is a tangible reminder of the fragility of their human condition [23, 26].

Several systematic reviews related to the wish to hasten death and/or desire to die have been performed [4, 19, 20, 27,28,29,30]. These reviews focused on different aspects of the wish to hasten death, namely: (i) the feeling of being a burden and its relation to a wish to hasten death [30]; (ii) meaning in life interventions implemented in patients with advanced diseases and their context, mechanisms, and outcomes about a wish to hasten death [5]; (iii) existing instruments for assessing the wish to hasten death [29]; (iv) stakeholders’ perspectives about the wish to hasten death [21]; and (v) reasons and meanings behind a wish to hasten death [4, 19]. Other reviews explored the wish to hasten death in specific medical conditions (e.g., amyotrophic lateral sclerosis) or care settings (e.g., long-term care facilities) [31, 32]. To the best of our knowledge, none of these reviews performed an in-depth appraisal and analysis of the meanings behind the wish to hasten death and/or desire to die in relation to or based on the above-mentioned ethical principles of autonomy, dignity, and vulnerability.

The objective of the study is to understand if and how the meanings behind the “wish to hasten death” and/or “wish to die” relate to and are interpreted in light of the ethical principles of autonomy, dignity, and vulnerability in palliative care.

Methods

This study consists of a meta-ethnographic review, which is a type of qualitative synthesis that offers a greater description of methods and provides a higher order of interpretation when compared to conventional narrative literature reviews [33,34,35]. Meta-ethnography is an inductive, interpretative approach based on interpretative qualitative synthesis methods [36]. It is the most utilized qualitative synthesis approach in healthcare research and is particularly suited to developing conceptual models and theories [37, 38]. The seven phases of Noblit and Hare’s [33] framework for the development of a meta-ethnographic review were followed and operationalized (Table 1). PRISMA was used as a reporting guideline [39]. The protocol was registered in PROSPERO (CRD42023360330) [40].

Table 1 Systematization of Noblit and Hare’s [33] seven phases of a meta-ethnographic review

Eligibility criteria

This review considered empirical and qualitative peer-reviewed articles, written in English, focusing on adults (aged above 18 years old) with a terminal illness and/or at the end of life who experienced and/or verbalized a “wish to hasten death” and/or “desire to die”. Selected studies included patients, family caregivers, and health professionals in any context of palliative and end-of-life care. In case of mixed-methods studies meeting these eligibility criteria, only their qualitative data were included in the analysis.

Studies with adults with mental disorders, pregnant women, and/or individuals with cognitive impairment were excluded. No restrictions were established in terms of the year of publication.

Search strategy and selection process

The search strategy was discussed and agreed upon among all authors and subsequently applied to three databases, Web of Science, PubMed, and CINAHL. Searches were conducted between January and May 2023. A final search was re-run just before the final analysis and before manuscript submission (October 2023). The search strategy embraced multiple combinations of MeSH and free terms (Additional file 1). Retrieved articles were imported into a reference management software (EndNote 20). Duplicates were removed and references of included studies were also screened for potential additional inclusions.

The first author (P.J.B.) independently selected the potential articles to be included in the review based on the abstracts and titles and proceeded with full-text reading of the selected articles to identify the eligible ones. To minimize bias, one researcher (P.J.B.) screened the first 25% of retrieved articles together with the two other researchers (P.H.M. and S.M.P.). Selected articles were read in full by two researchers independently (P.J.B. and S.M.P.) to identify eligible studies. Doubts were discussed among the three researchers (P.J.B., S.M.P., and P.H.M.) until reaching a consensus.

Data extraction

A data extraction table was purposively built for this study to extract data from included studies. This form was adapted from previous reviews conducted by members from this research team [41,42,43] and is based on PICOD [44, 45] as follows: P = Participants:

Patients aged above 18 years old with a terminal illness and/or at the end of life who experienced and/or verbalized a “wish to hasten death” and/or “desire to die”, family caregivers, and health professionals; I = Intervention/phenomenon of Interest: Meanings behind a “wish to hasten death/die” and associated ethical principles; C = Context: Any context of palliative and end-of-life care; O = Outcomes: Meanings and ethical principles; and D = Study Design: Qualitative studies only. Only qualitative data from mixed-methods studies were included in the analysis. Additionally, descriptive data included authors, year of publication, country where the study was conducted, and number of participants in the study (Table 2). One author (P.J.B.) extracted the data in an ongoing, iterative, and dynamic process together with the other two authors (S.M.P. and P.H.M.).

Table 2 Characteristics of included articles, using the PICOD [44, 45] framework

Quality assessment

All the articles included in the analysis were assessed for methodological quality. The quality assessment tool developed by Hawker et al. [68] was used. This is a 9-item tool where the minimum score is 9 and the maximum score is 36 [68]. This tool has been widely used in literature since its nine questions are easily scored to assess the quality of the study and can be transformed into a quantitative scale [41,42,43, 68,69,70,71,72]. All the included studies were independently assessed by the three reviewers (P.J.B., P.H.M., S.M.P.). Independent scores were averaged and discussed for consensus. Scores are presented in Table 2.

Data analysis and synthesis

A narrative synthesis was undertaken following Popay et al.’s [69] framework. One author (P.J.B.) performed an initial synthesis, which was then validated and discussed with the other two researchers (P.H.M. and S.M.P.). First, we performed a textual narrative synthesis, systematizing and reporting on study characteristics, context, quality, and findings, using the scope, differences, and similarities among the included articles. Second, we grouped and aggregated data into two main themes aligned with our research objective: (i) meanings behind the wish to hasten death and/or wish to die, and (ii) the relationship between these meanings and the ethical principles of autonomy, dignity, and vulnerability in palliative care.

Findings were organized taking three perspectives into account: (i) patients; (ii) family members; and (iii) healthcare professionals. These perspectives were grouped into five sets taking the different combinations of participants in included studies into account: (a) Patients; (b) Patients and caregivers, including family members; (c) Patients and healthcare professionals; (d) Healthcare professionals; and (e) Patients, caregivers, and health professionals. Table 2 shows the data extracted from the included articles.

Results

A total number of 893 articles were identified, and 39 full texts remained after screening titles and abstracts. 26 articles were included in the analysis, corresponding to 1,602 patients, 284 caregivers including family members, and 512 healthcare professionals, accounting for a total of 2,398 participants. Figure 1 illustrates the PRISMA flowchart.

Fig. 1

PRISMA flow diagram of the current review

Characteristics of included studies

Twenty-six (n = 26) articles were included in the analysis corresponding to twenty years of publications about this topic (2002 to 2022). Most of these studies (n = 21) were conducted with patients, although only 10 of them included patients solely [1, 6, 46,47,48,49,50,51,52,53]. Other five articles were performed with patients and caregivers, including family members [54,55,56,57,58]. Five articles included healthcare professionals (physicians, nurses, and psychosocial and spiritual carers) only [8, 11, 61, 63, 64]. Three articles accounted for a combination of the different participants (i.e., patients, caregivers, and health professionals) [56, 65, 67]. Selected studies were conducted in 14 countries, the majority of them (n = 8) European. Germany was the country with the highest number of studies (n = 6) [6, 11, 59,60,61, 64].

Main motivations and factors behind the wish to hasten death

The included studies suggest that the main motivations and factors behind expressing a wish to hasten death are: (i) physical discomfort [1, 47, 50, 54, 55, 59, 65, 67], (ii) unbearable psychological suffering [1, 47, 50, 52, 54, 59, 64, 67], (iii) feeling a burden to others [1, 51,52,53,54,55, 58, 63, 65], (iv) loss of dignity and autonomy [6, 50,51,52,53,54, 62, 65, 67], (v) demoralization and psychological distress [1, 54, 66], (vi) little social support [1, 6, 50, 63, 66], (vii) disappointment with life experiences [47, 54, 55, 63, 67], (viii) tiredness of life [46, 53], (ix) lack of medical options [61], and (x) religious, spiritual and cultural beliefs [49, 54, 56].

Meanings behind a wish to hasten death

Several meanings emerge associated to the wish to hasten death: (i) early death is preferred over severe and prolonged suffering [1, 49, 55, 59, 64,65,66], (ii) despair by a miserable exacerbation of mental or physical adversity [6, 52, 53, 55, 58, 65, 66], (iii) fear of future pain [6, 47, 59], (iv) way of escaping from an unendurable and unreasonable situation [51, 53, 55], (v) control the dying process [6, 49, 51, 52, 55,56,57], (vi) practices of pain relief [59], (vii) dying with dignity [51, 52, 55, 58, 62], (viii) way of drawing attention to him/herself needs [58, 60], (ix) manipulation to avoid abandonment [46], (x) communication strategy to seek information about the dying process [8, 46, 61, 63], (xi) gesture of altruism by ceasing being a burden to others [1, 51,52,53,54, 58, 63, 65,66,67], (xii) hopelessness for the future [11, 47, 52, 59, 61], (xiii) manifestation of the will to live (even if it seems a paradox, it corresponds to the wish to live and being alive while dying) [54, 61], (xiv) detachment, (xv) moving to another reality, and (xvi) being an example to others [55].

Ethical principles about the wish to hasten death

Ethical principles, such as autonomy, dignity, and vulnerability were not identified in eight of the 26 included articles. Autonomy and dignity were the ethical principles that emerged more frequently, even if most of the time they were inferred from the content of the studies and not explicitly mentioned as bioethical principles [50, 51, 54, 55, 62, 65, 67]. The ethical principles of vulnerability [11] and beneficence [51] as well as the principle of double effect [60] were expressed in only one article each. It was also possible to infer the ethical principle of vulnerability in four other articles [46, 54, 62, 67].

Discussion

This review shows the wide range of motivations and factors lying behind a wish to hasten death. Most of these are of a psychosocial and spiritual nature. Different meanings were also identified, highlighting the complexity underpinning a wish to hasten death and/or die. While the ethical principles of autonomy, vulnerability and dignity could be inferred from the content of the included studies, only a small number of these studies explicitly revealed the link between an ethical principle and the wish to hasten death and/or die. Autonomy and dignity were the most frequently identified ethical principles. Figure 2 illustrates the synthesis of meanings behind a wish to hasten death in relation to the ethical principles of autonomy, dignity and vulnerability.

Fig. 2

Synthesis of meanings behind a wish to hasten death in relation to the ethical principles of autonomy, dignity and vulnerability

What are the main motivations, factors, and meanings behind a wish to hasten death?

Evidence suggests that there are a series of motivations and factors behind the wish to hasten death. This is not surprising due to the complexity of experiencing a life-threatening and life-limiting condition that increases human vulnerability.

First, feeling a self-burden to others [1, 11, 46, 53, 55, 58, 59, 67], distress [6, 8, 57, 60, 67] and physical symptoms [1, 46, 49, 55, 57, 58, 64, 66, 67] were the main factors underlying a wish to hasten death. Similar results were highlighted in other studies [3,4,5] showing the relevance of developing care approaches rooted in relational autonomy and not only on individual autonomy [3,4,5, 70, 73]. Uncontrolled or severe pain, discomfort, and physical deterioration [1, 47, 50, 54, 55, 59, 65, 67] can contribute to a desire for an earlier death as a means to put an end to the patient’s suffering. In some cases, the fear of future pain can be the determinant factor and not the real feeling of pain by itself [47]. Embracing a relational approach (i.e., relational autonomy) [70] and providing truly person-centered care, where fears about the future can be openly discussed and care plans can be defined together with the patient and his/her loved ones, are thus paramount when facing thoughts about of a wish to hasten death/die.

Two key meanings were described by participants in included studies: the feeling of being a burden to oneself and the feeling of being a burden to others [53]. The first is an existential kind of suffering insofar as it contains the perception of a plight where despair can only be relieved by ending a patient’s existence. The second is an empathic concern that implies caring about the person who bears the burden of care. These two feelings can coexist. In reality, feeling a burden to oneself or of being a burden to others can affect perceptions of self-perceived dignity and control. In a sense, these feelings encompass a series of difficulties, challenges, suffering, and despair, which might be exacerbated by the perception of being a burden to others [52, 53]. As a matter of fact, patients tend to internalize these perceptions of burden and feel guilty or responsible for the emotional, financial, or physical strain their illness places on others [25, 30, 53, 55, 58, 67]. Addressing patients’ perceptions is challenging for health professionals. It requires them to embrace a comprehensive approach that includes providing emotional support and helping patients navigate their feelings of burden [1, 61, 63]. Besides, establishing support with empathic communication and counseling [63, 65, 66], involving the patient's support network in the palliative care process to alleviate these perceptions, and exploring alternative ways to find meaning in their lives can bring a sense of reassurance and support.

A second group of factors associated with a wish to hasten death is the presence of unbearable psychological fragility and suffering [1, 47, 58, 66] due to an advanced terminal illness and may result in depression [47, 52], anxiety about the future progression of the disease [47, 56, 61, 66], feelings of hopelessness (despair) [1, 46, 47, 49, 53, 59, 61, 66], and negative emotions such as guilt, shame, or feelings of worthlessness [47, 59]. This can have a powerful impact on patients’ feelings, emotions, and thoughts. In addition, higher levels of demoralization [1, 47, 53, 55], which are commonly associated to a state of hopelessness, despair, and loss of meaning in life [1, 46, 49, 52, 55, 67] psychological distress, depression, anxiety and existential suffering [1, 54, 66], are often present among patients who express a wish to hasten death. All these conditions represent situations of increased vulnerability, which require a careful assessment and ethical sensitivity from healthcare professionals [14, 16] in order to establish and foster a relationship of openness and trust.

Third, patients may also feel that their illness has eroded their dignity and sense of self-worth [50, 52,53,54, 65, 66] particularly if they are dependent on others for basic care needs resulting in undue distress or loss of bodily functions. Sometimes, patients feel that their illness has stripped them of their independence to make choices or decisions [6, 50, 51, 54, 55, 62, 65, 67]. Quite frequently, these feelings contribute to a desire of regaining control over their own life and death as a way of preserving their remaining dignity. Besides, a sense of weariness or exhaustion caused by the challenges and limitations of their illness, coupled with dissatisfaction stemming from unfulfilled goals, unmet expectations, and despair about the future, can contribute to the desire to hasten death [46, 47, 53,54,55, 63, 67].

A fourth set of factors is related to social and spiritual dimensions, where the lack of social support or spiritual care together with feelings of isolation can exacerbate loneliness and disconnection from others contributing to the desire to end one’s life [1, 50, 66]. Sometimes, caregivers may feel overwhelmed, resentful, or unable to meet the patient’s needs. This can result in inadequate support and abandonment, which can be increased if healthcare professionals also consider patients as a burden. In these complex circumstances, feelings of worthlessness, hopelessness, and a loss of agency in patients can emerge [54]. By recognizing and addressing their own biases and perceptions, healthcare professionals can create a supportive and compassionate environment that promotes honest open communication and shared decision-making [6, 54, 66].

Existential and spiritual beliefs about the meaning of life, the afterlife, or the concept of a "good death" can also influence expressions of a wish to hasten death. While patients may view death as a natural part of the human experience and wish to embrace it on their own terms, evidence suggests that patients with a high wish to hasten death reported less attachment to their religious, moral, and cultural beliefs [4, 5, 27, 54]. This suggests a shift in values or societal attitudes toward illness and aging that may influence the desire to hasten death [49, 54, 56].

Close to these social and spiritual factors, communication was also identified as a relevant factor associated with a wish to hasten death. In fact, some patients reported disappointment related to the lack of communication with their healthcare professionals. This suggests that patients value competent clinicians who have good communication competencies and offer adequate emotional support [6, 8, 46, 52, 61,62,63,64,65,66]. Open communication among patients, families and professionals is a core element of palliative and end-of-life care [6, 14, 16, 59, 63, 64, 66]. The desire-for-die conversations showed to be a proactively positive experience for healthcare professionals [60].

A final set of factors relies on clinicians’ political, cultural and ethical values and actions. For instance, the literature points out towards the influence of medico-legal imperatives coupled with clinicians’ values and religious, spiritual and philosophical beliefs when making decisions about end-of-life care practices, such as when a patient expresses a wish to hasten death [62, 63, 67, 74, 75]. It is worth mentioning that there seems to be a discordance between what healthcare professionals and ethicists consider to be the active hastening of death and what some patients and families perceive as such practices [6, 57].

In sum, while the motivations and factors behind a wish to hasten death may not be exhaustive, its meanings can be influenced by a combination of several complex factors. A wish to hasten death results from a unique multifaceted and complex personal experience. Understanding these underlying meanings can help healthcare professionals provide appropriate support and interventions to address patients’ wishes, desires and actual care needs.

How do the ethical principles of autonomy, dignity and vulnerability relate to and help to interpret meanings behind a wish to hasten death in palliative care?

As aforementioned, only a small number of studies explicitly revealed the link between an ethical principle, mostly autonomy, and the wish to hasten death. Moreover, the ethical principles of autonomy, dignity, and vulnerability could be inferred, and thus interpreted, from the content of most of the included studies. As a matter of fact, even if bioethical principles are imbricated when exploring the meanings behind a wish to hasten death, there seems to be a lack of clarity in articulating these principles within an ethical reasoning and debate framework in the empirical literature.

The ethical principle of autonomy in relation to a wish to hasten death

First, the ethical principle of autonomy, which is defined as the ability and right of individuals to make fully informed decisions about their medical treatment and care [1, 76], is closely related to a patient’s preference for a hastened death [64]. Indeed, evidence suggests that patients who express a wish to hasten death may be seeking to maintain control over their lives and their deaths [6, 47], wishing to decide how and when they would die [51]. Autonomy is also a cornerstone of person-centered care, which is particularly visible in palliative care [13, 16].

Patients who feel like a burden to others may experience a conflict between their desire to die and their desire to respect the autonomy or independence of their loved ones. While this meaning suggests individual autonomy as a core principle behind a wish to hasten death, it also highlights the relational dimension of autonomy. Relational autonomy aims to maintain the essential aspect of autonomy, namely control over one’s life, while, at the same time, incorporating insights of a socially embedded perception and reality [12, 70].

In this sense, the expression of desire for hastened death can be understood also as a communication tool for patients [46]. On the one hand, it allows patients to express their innermost thoughts and feelings and can be a way to convey the depth of their pain, despair, or desire for relief. On the other hand, the desire to hasten death can be a means for patients to draw attention to themselves and their needs within the healthcare system. By expressing a desire to hasten death, patients may hope to be seen, listened to, and understood in depth about their experiences, losses, and suffering.

In fact, respecting the right to make decisions about their care, including their expressed desire to hasten death, emphasizes patients’ autonomy by recognizing their capacity to make choices. This relates to the foundational concept of this bioethical principle [76]. It is thus paramount to reconceptualize and operationalize the ethical principle of autonomy, including relational autonomy, into end-of-life care practices, particularly those associated with a wish to hasten death.

According to the bioethical literature, true autonomy requires individuals’ choices to be free from undue influence, coercion, or external control. This condition is disputable in situations where a patient is experiencing unbearable pain or suffering. Our review suggests that some patients request anticipated death as a way to avoid prolonged suffering and to manage the fear of future pain and of perceived lack of quality of life [47, 49]. Providing adequate pain relief, palliative care, and psychological support to alleviate unnecessary suffering and improve the quality of life is inherently linked to ensuring a true expression of autonomy and is, additionally, consistent with the principles of beneficence and non-maleficence [76].

The ethical principle of dignity in relation to a wish to hasten death

Second, the ethical principle of dignity was also identified in this study as inherent to a wish to hasten death when perceived, by the patient, as being compromised. Indeed, patients may feel that their illness has eroded their dignity, particularly if they are dependent on others for basic care or if their condition causes embarrassment or loss of bodily functions [1, 77]. Witnessing their own body in decline and facing others’ reactions to their body decline is a matter of great concern for terminally ill patients [77]. The negative emotions related to having an altered physical appearance have a detrimental impact on the self-identity of these patients [77], affecting their sense of personal dignity. In addition, the perceived lack of quality of life may compromise patients’ dignity both due to their illness and to the limitations of available treatments [49].

From an ethical point of view, the principle of dignity can be framed around three fundamental facets: (i) the uniqueness value inherent in each person, conceived as an end in itself and not as a means (the Kantian concept of a categorical imperative [57]), (ii) persons’ perception of their worth, and (iii) persons’ sense of preservation of their self. Patients’ self-perceived dignity is thus a central goal in palliative care as patients may feel that their illness or condition has robbed their dignity, and they are no longer able to live a life that is meaningful or fulfilling. This can lead to feelings of hopelessness and despair and may contribute to a desire to end their life [50, 52, 53]. It is therefore not surprising that the meaning of dignity at the end-of-life has been mostly explored around the concept of dying with dignity and freedom from pain and suffering both as an ethical imperative and a human right, focusing on how to provide holistic care needs at this vulnerable time in a person’s life [78]. A dignified death includes respecting patients' values, beliefs, unique worldviews, social traditions, and cultural background [56, 58]. Life as an intrinsic good, which is inherent to the ethical principle of dignity, and a peaceful death are also important values [8, 79]. Interventions have been described in the literature to reduce psychosocial and existential distress, and promote dignity, meaning, hope, and peace of mind in patients at the end-of-life [78, 80, 81]. Hence, recognizing dignity while embracing a person-centered care approach can help professionals to identify and consequently address feelings and perceptions of compromised dignity.

The ethical principle of vulnerability in relation to a wish to hasten death

Finally, the ethical principle of vulnerability was the less referred one in the reviewed literature about the meanings behind a wish to hasten death, even if it was possible to infer its connection with the latter. In fact, terminally ill patients are often in a vulnerable state due to their physical, emotional, psychological, spiritual, and social care needs, as well as their dependence on healthcare providers and caregivers. As an ethical principle, vulnerability is a complex and multifaceted concept that can be influenced by both internal or individual factors, such as age, health status, or cognitive ability, and external or contextual factors, such as social, economic, or political conditions. Vulnerability can be defined as a substantial incapacity to protect one's interests and is a fundamental aspect of human existence, relevant to healthcare practices since vulnerable people need special protection [22,23,24, 82,83,84]. Vulnerable individuals or groups are those who are more likely to have their interests unjustly considered [84]. As an ethical principle it therefore emphasizes the need to protect and respect the rights and welfare of vulnerable persons or groups. Moreover, it requires them to be treated as autonomous agents in their decisions and to ensure that they are not subjected to undue risks, harm, or exploitation. Being dependent on others for their care and support, experiencing significant pain, and discomfort, and struggling with feelings of guilt, shame, worthlessness, or other symptoms related to their illness or condition can further increase patients’ sense of vulnerability [11, 49, 53, 55, 57, 58]. Therefore, in what refers to the expression of a wish to hasten death, vulnerability highlights the need to protect and support these individuals, ensuring that their rights, autonomy, dignity, and well-being are respected.

How can ethical principles help healthcare professionals understand the meanings behind a wish to hasten death?

In this review, healthcare professionals’ meanings and reactions towards a patient’s wish to hasten death were also identified and explored both from their perspectives and from the patients’ ones [6, 57, 62,63,64]. Findings suggest that patients expressing the desire to hasten death do not necessarily expect healthcare professionals to actively hasten their death, but rather seek understanding, support, and information about the dying process and maintain control over their lives (autonomy) [5, 6, 11]. Frequently, patients’ wish to hasten death evolves and their main preferences change over time, depending on the situation, sometimes showing dramatic changes from an explicit desire to hasten death to a newly experienced wish to live [54]. Establishing respectful communication and proactively addressing desires to die are a way to open up intimate and meaningful conversations, being thus a relevant intervention in palliative care [6, 11]. This calls for professionals to be attentive and ethically sensitive towards patients’ wishes (autonomy) and needs (vulnerability), while simultaneously reflecting on the ethical and legal questions inherent to their duty to preserve, promote and protect life [5, 6, 11, 14, 16, 49, 62, 79, 83, 84].

The importance of healthcare professionals respecting patients’ autonomy is highlighted in several studies [1, 48, 54, 59]. This can be achieved by providing patients with relevant, accurate, and clear information, ensuring their understanding, and involving them in decision-making [1, 48, 54, 59]. Indeed, adequate communication and empathy are crucial to patients with a desire to die as they empower their autonomy and address their unique needs (dignity) and preferences [6, 8, 52]. Discussing end-of-life options can reduce patients and families’ anxiety and uncertainty (which increase their vulnerability), helping them to feel empowered in making decisions (autonomy) and promoting a sense of dignity [47, 54, 56, 61, 66, 85, 86]. In fact, evidence suggests that patients and families often have ethical concerns, which they would like to openly discuss with their attending clinicians, expecting them to be receptive and attentive to having such conversations [87].

To this end, healthcare professionals can help to preserve and enhance patients' sense of self-worth and self-respect by providing personalized care plans, which may even minimize the risk of a perceived loss of dignity. This is aligned with professionals’ aspiration to minimize patients’ suffering and promote their autonomy. Nevertheless, the role of these professionals in end-of-life situations must be carefully observed since physicians' experiences with ethico-clinical decisions to hasten death are affected by a multitude of factors. Political, religious, and socio-cultural beliefs, medico-legal imperatives, personal values and beliefs, and interpersonal and intrapsychic aspects play a major role in end-of-life decision-making [14, 16, 62, 86]. Healthcare professionals sought ethical solutions that prioritized patients' well-being and autonomy, while also navigating through the complex ethical dilemmas that arise in end-of-life care [8, 14]. It is important to acknowledge the duality that the wish to die and the wish to live may rise simultaneously in the same person [11]. Within this duality, professionals may play an important role in developing trustful relationships with patients and families, allowing them to truly respect patients' autonomy and supporting them in making informed decisions consistent with their values, preferences, and concerns.

Finally, holistic and compassionate patient-centered care should be provided while taking the unique needs and perspectives of each individual into account. Divergent opinions can occur among different stakeholders on how to best deal with the desire to hasten death/die. This reflects the tension that co-exists within the triadic professional-patient-family relationship. First, by acknowledging divergent experiences (e.g., wanting to live versus having the desire to die). Second, by taking into account conflicting values (e.g., the protection of the sanctity of life versus respect for the patient’s autonomy).

What does this review add?

To the best of our knowledge, this is the first meta-ethnographic review conducting an in-depth appraisal and analysis on “if” and “how” the meanings behind a “wish to hasten death/die” relate to and are interpreted in light of the ethical principles of autonomy, dignity, and vulnerability in palliative care. According to our findings, a wish to hasten death is rooted in various motivations, factors, and meanings, which are highly subjective and inherently personal. The same individual (patient, family, healthcare professional) may experience dual thoughts and feelings about this concept, which can be related to several ethical principles. Surprisingly, while an expressed wish for hastened death is commonly anchored in the ethical principle of autonomy, the empirical literature is not framed or explicitly built around core ethical principles, such as autonomy, dignity, and vulnerability.

Strengths and limitations

The major strength of this review is that it fills a gap in research by interpreting existing evidence about the meanings evoked by participants (patients, family members, and healthcare professionals) about the “wish to hasten death” in light of the ethical principles of autonomy, dignity, and vulnerability. This tridimensionality of included participants in the original studies brings more in-depth, breadth and complementarity to the understanding of this phenomenon by grouping and combining five sets of participants: Patients; patients and caregivers, including family members; patients and healthcare professionals; healthcare professionals; and patients, caregivers, and health professionals.

Nevertheless, it is important to take some limitations into account. First, most of the articles included in our analysis focused on inpatients in hospice care, with advanced and terminal illnesses. On the one hand, this may reflect the inclusion of studies conducted with vulnerable patients. On the other hand, this also corresponds to a very specific context of care where specialized palliative care is commonly provided. Second, none of the articles focused on family caregivers only. Finally, most of the included articles were conducted in European countries that are undergoing legislative processes about different end-of-life practices (e.g., advance directives, advance care planning, euthanasia, assisted suicide).

Conclusions

This meta-ethnographic review shows a reduced number of qualitative studies on the “wish to hasten death” and/or “wish to die” explicitly stating ethical principles. This suggests a lack of bioethical reflection and reasoning in the empirical end-of-life literature and a lack of embedded ethics in clinical practice. This review also highlights that the wish to hasten death has multiple meanings and may be affected by several factors, such as physical symptoms, psychological/existential suffering, loss of dignity, and feeling a burden to others. While often not mentioned explicitly or with enough in-depth, these meanings relate to the ethical principles of vulnerability, dignity, and autonomy. That is why healthcare professionals should address these topics compassionately and ethically, taking into account the unique perspectives of patients and family members as well as their own internal tensions. Finally, this meta-ethnographic review reinforces the need for more qualitative studies on the meanings behind a wish to hasten death, their ethical contours, ethical reasoning, and implications for clinical practice.