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

Patients

Kelly et al. [1] 2002, Australia, 35

72 terminally ill patients with cancer

Factors associated with patients’ wish to hasten death

Hospice unit and a Home Palliative Care Service

Patients with a high wish to hasten death show greater concerns with physical symptoms and psychological suffering, perceive themselves as a burden to others, and experience higher levels of demoralization. They also report less confidence in symptom control, fewer social supports, less satisfaction with life experiences, and fewer religious beliefs when compared with patients who had a moderate or no wish to hasten death. 

These findings suggest that interventions to improve symptom control, address psychological distress, and enhance social support may help reduce the desire for hastened death among terminally ill cancer patients. 

Qualitative analysis using in-depth semi-structured interviews

Coyle and Sculco, [46] 2004, USA, 35

Seven patients with advanced cancer who expressed a desire for hastened death

Meanings and uses of an expressed desire for hastened death in patients with advanced cancer

Urban cancer research center where patients were followed by the Pain and Palliative Care Service

Expression of a desire for hastened death is a complex language and results from the lived experience (physical, psychological, social, spiritual, and existential) of individuals with advanced cancer. Nine distinct meanings were extrapolated from the narratives: “(1) a manifestation of the will to live (paradox); (2) the dying process itself was so difficult that an early death was preferred; (3) the immediate situation was unendurable and required instant action; (4) a hastened death was an option to extract oneself from an unendurable situation; (5) a manifestation of the last control of the dying person; (6) a way of drawing attention to itself as a unique person; (7) a gesture of altruism; (8) an attempt at manipulation of the family to avoid abandonment; and (9) a despairing cry depicting the misery of the current situation.”

A qualitative study with a phenomenological approach using a series of in-depth semi-structured interviews

Johansen et al. [47] 2005, Norway, 35

18 patients with cancer with a short life expectancy

Attitudes towards, and wishes for, euthanasia or physician-assisted suicide in patients with cancer with short life expectancy

Inpatient palliative medicine unit in the Department of Oncology and Radiotherapy of a Hospital in Norway

Wishes for euthanasia or physician-assisted suicide (PAS) are different from requests. Fear of future pain, rather than actual or perceived pain, was the predominant motivation for a possible future wish for euthanasia or physician-assisted suicide among the cancer patients interviewed. Pain was also found to be of major importance for the perceived meaning of life, quality of life, and hopes for the future. There seems to be a clear discrepancy between attitudes, wishes, and requests for euthanasia or PAS and what seems to be the characteristics and nature of wishing for these options among advanced cancer patients. Healthcare professionals should be aware of these discrepancies and take them into account when discussing end-of-life care options with terminally ill cancer patients. 

A qualitative study with semi-structured interviews that were analyzed using a grounded theory approach

Eliott and Olver, [48] 2009, Australia, 34

28 terminally ill patients with cancer

Experiences and Perspectives of Dying Cancer Patients Regarding Hope

Palliative Care Units and Hospices in Australia

Hope is a complex and multifaceted concept important to dying cancer patients; different versions of hope can coexist within the same individual. 

Participants commonly discussed three aspects of hope: (i) hope as interconnectedness: meaning interpersonal connections and relationships with others. This aspect emphasizes the importance of social support and the role that it plays in maintaining hope in the face of a terminal illness (motivation); (ii) hope as realistic optimism: refers to a realistic understanding of the situation while also acknowledging the challenges and limitations of the situation (dynamic process); and (iii) hope as acceptance: expressed through a sense of peace with the inevitability of death, finding meaning and purpose in life, and being able to let go with a sense of dignity and grace. 

Healthcare professionals should acknowledge and validate patients' hopes while helping them manage unrealistic expectations or fears. 

A qualitative approach using in-depth interviews, which were analyzed using a grounded theory approach

Nissim et al. [49] 2009, Canada, 35

27 patients with advanced cancer in ambulatory care

Experience of the desire to hasten death (DHD) in patients with advanced cancer and how it evolves over time

Outpatients from a large cancer center in Toronto, Canada

Three main categories of DHD experiences were identified: (1) contemplation of DHD as a hypothetical exit plan; (2) DHD as an expression of despair triggered by an exacerbation of mental or physical adversity; and (3) DHD as a manifestation of letting go that emerged only in the last weeks of life. These categories were not mutually exclusive, and the same participant described different types of experiences at different moments of the illness. 

A longitudinal qualitative approach using in-depth interviews that were analyzed using a grounded theory approach

Vlug et al. [50] 2011, Netherlands, 35

292 ill and impaired participants from a cohort of 5449

Development of a quantitative instrument to measure factors influencing self-perceived dignity in end-of-life care

Adults recruited through the Dutch Association for Voluntary Euthanasia (NVVE) and the Dutch Patients Association (NPV)

Identified factors that affect a patient's self-perceived dignity with an instrument developed to enhance insights into the factors that constitute dignity. The used instrument consists of 26 items and was grouped into four domains: evaluation of self about others (8 aspects), functional status (9 aspects), mental state (4 aspects), and care and situational aspects (5 aspects). 

Domains I, and IV, mainly contain elements of the categories ‘‘Dignity-conserving repertoire’’ and ‘‘Social dignity inventory’’. Domains II and III largely correspond to the themes and sub-themes of the category ‘‘Illness-related concerns’’ in the model. The instrument developed could help improve dignity-conserving care and research on end-of-life care. 

Combination of qualitative and quantitative methods. Open-ended and closed-ended questions about personal dignity were applied resulting in content labels. Only qualitative data were included in this review

Güell et al. [51] 2015, Spain, 34

69 terminally ill patients with cancer, of the 701 patients seen during the study period, succeed in the criteria of making desire-to-die statements (DDSs) to any member of the palliative care unit

Investigate the prevalence of desire-to-die statements among terminally ill cancer patients in an acute palliative care unit and compare the underlying differences between those patients who make desire-to-die comments and those who make desire-for-euthanasia comments

Acute palliative care unit at the Oncology Department of a Spanish Hospital (Barcelona)

The reasons for the desire to die and for euthanasia were mainly nonphysical. Patients who request euthanasia consider themselves less spiritual. 

Addressing psychological, emotional, and spiritual needs of terminally ill cancer patients receiving palliative care and providing adequate family support is highlighted in the study. Each patient’s life experiences, and individual notions of autonomy and beneficence need to be accounted. Qualitative studies are needed to better understand the great diversity of reasons behind a desire to die. 

One-year cross-sectional study with semi-structured interviews. Only qualitative data from this study are included in the analysis

Pestinger et al. [6] 2015, Germany, 35

12 inpatients, mentally not impaired, with an advanced incurable disease, who had made a statement or request to hasten death

Motivations of patients expressing a desire to hasten death (DHD) in a country with prohibitive legislation on euthanasia and physician-assisted suicide

Departments of palliative medicine in three hospitals in Germany

Patients expressing DHD may be motivated by a combination of three main themes: self-determination, agony, and time. The concept of time emerges as a core category. 

The study also found DHD as an extreme coping strategy to maintain control against anticipated agony. 

Other relevant topics were identified, such as expectations toward health professionals, attitudes toward death, and secureness related to the end of life. Patients expected health professionals to listen to and respect their experiences, and to provide information about the dying process. Patients also wanted their caregivers to listen to and respect their wish to hasten death but did not expect the caregivers to understand this as an order to hasten their death. Patients wished to be heard and engage in open communication about their DHD. 

A qualitative approach with a modified form of Grounded Theory using in-depth interviews

Monforte‐Royo et al. [52] 2018, Spain, 35

193 adult patients, with advanced late-stage disease, cancer that is life-limiting, and/or with a prognosis of 6 to 24 months

Factors that influence end-of-life decision-making for those with advanced cancer, focus on the role of perceived dignity and control in shaping patients' attitudes towards end-of-life care, as well as the impact of functional impairment and symptoms of depression on these attitudes

Oncology unit

The study showed that perceived dignity and control significantly shape patients' attitudes toward end-of-life care, including their desire to hasten death. Specifically, the patients who reported lower levels of perceived dignity and control were more likely to express a wish to hasten death. 

Therefore, loss of dignity and symptoms of depression are important factors to consider when assessing and intervening with advanced cancer patients, as they are the main antecedents of the wish to hasten death (WTHD). 

A mixed quantitative and qualitative approach. Only qualitative data from this study are included in the analysis

Rehmann‐Sutter, [53] 2019, Switzerland, 21

Two patients with cancer

Complex and ethically challenging topic of patients wishing to die because they do not want to be a burden to others

Not specified

Two key meanings are described as a feeling of being a burden to others when it appears as a reason for a wish to die. First, it is an existential kind of suffering insofar as it contains the perception of a plight that is so desperate that it can only be relieved by the end of the patient’s existence. Second, it is an empathic concern that implies caring about the person who bears the burden of care. It is therefore a deeply moral emotion that contains a series of difficulties and challenges, including the adequacy of the representation of the caregiver burden in the patient’s mind and the danger of underestimating the value of one’s life to oneself and others. 

Phenomenological approach

Patients and caregivers, including family members

Ohnsorge et al. [54] 2014, Switzerland, 30

30 terminally ill patients with cancer, their caregivers, and relatives

The subjective structure of the WTD statements within three aspects: intentions, motivations, and interactions, on a temporal development approach and social relatedness

Hospice and palliative care wards within the oncology department of a Swiss hospital and outpatients in a palliative care service

Patients were categorized into three groups: (i) Participants who express a WTD with no idea of hastening death; (ii) those who consider a hastened death without undertaking actions that would lead to it; and (iii) those who act towards it

WTD statements may differ in their intention through time and can be dynamic and conflicting based on religious and philosophical beliefs, moral and biographic narrative, acute moments of pain, and wishing for quality of life in the terminal phase (autonomy). 

Qualitative interviews using Grounded Theory and Interpretive Phenomenological Analysis

Ohnsorge et al. [55] 2014, Switzerland, 34

30 terminally ill patients with cancer, their caregivers, and relatives

Explore the different possible motivations and explanations of patients who express or experience a WTD

Hospice and palliative care ward in the oncology department of a general hospital and an ambulatory palliative care service

Motivations consist of three components: reasons, meanings, and functions

Reasons include physical, psychological, social, and spiritual (or existential) aspects. 

Patients report nine types of meanings: (1) to allow a life-ending process to take its course; (2) to let death put an end to severe suffering; (3) to end a situation that is seen as an unreasonable demand; (4) to spare others from the burden of oneself; (5) to preserve self-determination (autonomy) in the last moments of life; (6) to end a life that is now without value; (7) to move on to another reality; (8) to be an example to others (teaching, dignity); (9) to not have to wait until death arrives. 

Four types of functions were identified: appeal, vehicle to speak about dying, re-establishing agency, and manipulation. 

Semi-structured qualitative interviews were analyzed using a complementary grounded theory and interpretative phenomenological analysis approach

Fornehed et al. [56] 2020, USA, 29

15 patients (> = 40 years old) with a life-limiting illness and 10 family members who were dealing with or had dealt with end-of-life care (EOLC)

Ten key informants were family members. Four were family members with a loved one who already died when their interview took place, and six of them had a parent hospitalized

Culturally congruent care that contributes to people’s health and well-being and helps them face disabilities or dying

Homes, hospital rooms, and private conference rooms in Rural Appalachia of Tennessee

Four major themes were deduced from the expressions, patterns, and practices of family decision-making (FDM), accepting death as a part of life, and faith influences at the end of life (EOL): (i) EOL of FDM on the illness trajectory (diagnosis to death) moves at different rates; (ii) Communication encompassing within interdisciplinary team members and families is essential to relieving a burden on someone when making decisions at EOL; (iii) EOL FDM is influenced by a lack of knowledge about the illness trajectory or the need to choose “the lesser of two evils”; (iv) For rural Appalachian’s people, comfort for living while dying means experiencing “a sense of normalcy”. 

A qualitative ethno-nursing research method was used to analyze the interviews, guided by Culture Care Theory (CCT)

Young et al. [57] 2021, New Zealand, 34

20 participants (14 people with life-limiting illnesses and life expectancy of less than a year and 6 family members)

Perspectives of patients and relatives on end-of-life practices that hasten death; and ethical distinctions between different practices of assisted dying (AD)

Half of the participants were enrolled in hospice and palliative care in New Zealand. Interviews were carried out in various settings (homes, hospices, and hospitals)

There is limited knowledge about what patients with a life-limiting condition think about end-of-life practices. There is a clear distinction between what health professionals/ethics consider active hastening death and what some patients perceive as such practices. 

Participants consider end-of-life practices as morally equivalent. 

Most participants view current palliative care practices, such as pain relief with opioids and symptom management with palliative sedation, as hastening death. Some participants did not agree with the ‘doctrine of double effect’ and saw such practices as ‘slow euthanasia’ and ‘covert euthanasia’. Participants asserted that active and passive practices for ending life were morally equivalent and preferred to choose the time of death over other legal means for death. The study also found that participants' perspectives challenged the interpretation of legal end-of-life practices such as Assisted Dying (AD), which represents an epistemic contest to the foundation of medical knowledge, authority, and ethics. 

A qualitative study with interviews

Liu et al. [58] 2021, China, 35

15 adult patients with advanced cancer and 10 family members

Meaning of patient dignity at the end of life in traditional Chinese culture from the perspectives of advanced cancer patients and their family members

Palliative care unit in a hospital in Beijing

Highlight the meaning of dignity for palliative cancer patients and develop a conceptual framework that describes dignity from the perspectives of individuals living with advanced cancer and family members in the traditional Chinese culture. 

The study identified four categories of dignity: cultural-specific dignity, self-related dignity, family-related dignity, and care- and treatment-related dignity. 

In traditional Chinese culture, patient dignity at the end of life was relevant to the culture, the individuals, their families, and the care and treatment they received. Patient dignity is supposed to be supported by collaborative efforts from the family and healthcare professionals while considering the patient’s cultural background and personal wishes and values. 

A descriptive qualitative design with semi-structured interviews and thematic analysis

Patients and healthcare professionals

Kremeike et al. [59] 2020, Germany, 35

11 adult palliative patients and 149 international expert researchers including clinical practitioners

Development of a clinical approach to face the desire to die in patients receiving palliative care

Department of Palliative Medicine at the University Hospital of Cologne – Germany

Creation of a consensus-based semi-standardized approach for assessing and optimally responding to a desire to die is one of the accomplishments of this study. 

Eleven patients participated in face-to-face interviews, even if five of them declined to be interviewed for physical or mental deterioration reasons. 

All but one of the interviewees reported a desire to die either as a wish for hastened death or as acceptance of death without requiring to hasten it. Two interviewees preferred death to deterioration, and a desire for physician-assisted suicide was reported explicitly once. 

Isolation, feeling as a burden, hopelessness, and fear of pain were also reasons reported for a desire to die

Almost all of the interviews appreciate a proactive assessment of the desire to die by health professionals and a trustful health-professional-patient-relationship. 

Sequential mixed method design including semi-structured qualitative patient interviews. The agreement consensus was obtained through a two-round Delphi process. Only qualitative data from this study are included in the analysis

Boström et al. [60] 2022, Germany,

34

29 trained health professionals documented and 82 palliative patients

Experiences of trained palliative care providers in open desire die-conversations and identify common themes

Various palliative care settings, including hospices, hospitals, and outpatient services

Desire-to-die conversations are shown to be a positive experience for health professionals, with beneficial aspects such as feeling rewarded when the health professionals see an improvement in their patients, as well as their self-reflection about their role and performance in these conversations. 

The common main themes that emerged were the importance of an open approach to the desire-to-die conversations, the need for training and support for health professionals in this area, and the challenges associated with addressing suicide in palliative care settings. 

Qualitative data using thematic analysis and a concept-driven (deductive) approach

Voltz et al. [61] 2022, Germany, 34

43 health professionals and 85 patients with multiple diagnoses

Conversations between trained health professionals and palliative patients with the development of a desire to die

Ambulatory palliative care settings

Trained communication about the desire to die had effects on several patient-relevant outcomes, including depressiveness, hopelessness, wish to hasten death, death anxiety, patient-health professional relationship, and will to live. 

In general, the desire-to-die conversations with patients receiving palliative care seem to not lead to harmful effects, however, both risks and benefits were identified. Even if assessed carefully, some trends are pointing toward potentially relieving effects of a desire-to-die conversation in patient depressiveness. 

A mixed qualitative and quantitative approach using a three-phase sequential prospective mixed-methods cohort study. Only qualitative data is used in the analysis

Healthcare professionals

Trankle, [62] 2014, Australia, 35

13 physicians who provide end-of-life care

The complexity of influences behind hastened deaths and how physicians reason and experience them

Hospitals and hospices in Australia

Physicians' experiences and understandings of end-of-life care practices are complex and influenced by multiple factors. 

The study highlights how physicians are affected by politico-religious and cultural influences and medico-legal imperatives with their values and beliefs when making decisions about end-of-life care practices. 

Physicians regarded the principle of double effect as a simplistic and generalized guideline, that was identified as an ambiguous mechanism to protect physicians who inadvertently or intentionally hastened death. However, all physicians reported it as inadequate as a medico-legal guideline and fundamentally flawed, but sometimes it was their only protective medico-legal option. Physicians are sensitive to the patient ethical principle of autonomy. 

A qualitative approach using semi-structured in-depth interviews and thematic analysis

Endacott et al. [63] 2016, England and Israel, 34

55 nurses in intensive care units in Israel and England

Factors perceived to contribute to a “good death” and the quality of end-of-life care in two countries with different legal support and cultural context

Intensive care units in England (3) and Israel (4)

Four common themes that prevent and contribute to a good death and good quality of end-of-life care were identified in both countries. The themes are (i) timing of communication; (ii) accommodating individual behavior; (iii) appropriate care environment, and iv) achieving closure. 

Nurses have a key role in supporting physicians to communicate with families and patients. Achieve closure is usually more effective for families than for healthcare professionals, who may feel they have not done all. An appropriate care environment allows the patient to die with dignity even if it can be more challenging to the clinical team. 

A qualitative study with semi-structured individual and focus group interviews

Galushko et al. [64] 2016, Germany, 31

19 specialized palliative care (physicians, nurses, psycho-social spirituals) professionals

Response of specialized palliative care professionals (SPC) to DHD (desire for hastened death) in daily practice based on their function

Departments of specialized palliative care in four University hospitals

Established the need for better helpful relationships between specialized professionals in palliative care and their patients, through guidelines and training programs to deal with DHD. 

SPC professionals differ in their relations with the patients and within the team depending on their function. Aspects such as avoidance, understanding and assessing the requests, and evaluating the risk of suicide are some of the aspects that psycho-social spirituals better face without distancing themselves. 

Narrative interviews using the documentary method

Hold, [8] 2017, USA, 33

Six experienced hospice nurses

Ethical dilemmas during end-of-life care, resulting in not being able to accurate a good death for patients

Hospice of a metropolitan city in the South-eastern United States

The Institute of Medicine defines a good death as one that is ‘‘free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural and ethical standards’’. 

To actualize a good death, nurses need to employ an individualized preferences approach to accommodate patients’ wishes and meet their physiological, spiritual, and emotional needs. In this sense, several different ethical quandaries were identified among family members and providers. 

Nurses use a combination of formal, experiential, and intuitive knowledge to face dilemmas, and three main themes were established: Ethics within Practice, Ethical Knowledge, and Ethical Solutions. Those ethical predicaments were resolved by following either rules (accounting also with their gut feelings) or choosing acts of resistance. This strategy achieved a better understanding of how experienced hospice nurses successfully resolve ethical dilemmas culminating in better deaths for patients. 

The qualitative narrative approach is guided by Benner’s “Novice to Expert” as a Theoretical framework

Kremeike et al. [11] 2021, Germany, 35

149 experts in the field of palliative care

Expert opinions surrounding controversies in patients who express the desire to die, to support health professionals in reflecting their attitudes and provide practical conclusions concerning the handling of the desire to die

Scope of palliative care

The panelists’ expert opinions on the topic of the desire to die in palliative care provide insights and practical recommendations into how healthcare professionals should handle these issues. They also concluded that the general public, as well as some vulnerable and high-risk populations (e.g., patients with cancer), despite never having experienced an ad hoc semi-structured clinical interview, highlight the importance of proactive assessment in a persistent desire to hasten death. 

Combination of Delphi surveys and qualitative data analysis

Only qualitative data is included in the analysis

Patients, caregivers, and health professionals

Ferrand et al. [65] 2012, France, 33

783 participants with requests to hasten death (476 patients, 258 relatives/friends, and 49 nurse staff)

Requests to hasten death (RHD) among patients managed by palliative care teams in a country that widely promotes palliative care

Palliative care organizations

Requests to hasten death are frequent and usually maintained despite appropriate palliative care. 

These requests are associated with a range of factors, including physical and psychological symptoms (loss of autonomy and dignity, difficulties in feeding, incontinence), social isolation, and existential distress. 

Most patients who made RHD did not go on to hasten their death. Communication between patients and healthcare professionals was the most important factor in providing appropriate end-of-life care. The study also emphasizes the need for ongoing ethical reflection and dialogue around end-of-life care and requests to hasten death. 

Mixed-methods approach, collecting both quantitative and qualitative data

Qualitative data was used in the interpretation of the request to hasten death. Only qualitative data is included in the analysis

Ohnsorge et al. [66] 2019, Netherlands, 36

62 palliative patients, their families, and health professionals (total of 248 interviews)

Factors and patterns across dying trajectories that influence palliative patients’ wishes to die (WTD). Insights into how healthcare professionals can better support patients with WTD in palliative care settings

Palliative care facilities

WTD is a complex multifaceted and dynamic phenomenon that is influenced by various factors, including physical symptoms, psychological distress, social support, and existential concerns. 

The four different typical dying trajectories in focus are neurological diseases, organ failure, frailty due to age, and cancer. 

The study highlights differences in the experience of WTD depending on the dying trajectory. Patients with neurological diseases report more existential concerns and patients with cancer report more physical symptoms. The feeling of being a burden to others was reported in all patient groups. 

The study highlights the importance of open communication between patients, families, and healthcare professionals by providing adequate symptom management and psychosocial support about end-of-life care options. 

Qualitative semi-structured interviews using phenomenological analysis and grounded theory

Gudat et al. [67] 2019, Sweden, 32

62 patients, their caregivers, and professionals

What terminally ill patients think and intend when experiencing a wish to die (WTD) and feeling like a burden to others

Terminally ill palliative patients

A better understanding of the values and moral sensibilities behind a wish to die is needed among terminally ill patients who feel like a burden to others. 

Identification of several ethical dilemmas that arise in clinical interactions with these patients, such as balancing respect for autonomy with preventing harm to the patient or others, to provide the best possible quality of life for palliative care patients. 

Qualitative prospective approach with interview‐based study and combination of phenomenological analysis and ground theory