Experience with his 103-year-old grandfather teaches a physician-bioethicist that for people without terminal or mental illness who desire to end their life, the alternative to physician-assisted dying — to stop eating and drinking — is just too challenging.
Context: Most older adults will face threats to loss of health and social support, which can affect their perceived dignity. Although problems with perceived dignity increase in the context of cancer, the specific experience for those older compared with younger patients with advanced cancer has not been described despite its contributions to the wish to hasten death (WTHD).
Objectives: To understand the influence of age group to the perception of dignity, considering changes in quality of life and the WTHD in patients with advanced cancer.
Methods: The Patient Dignity Inventory was administered to 194 patients with advanced cancer. The data were analyzed by separating the sample into age groups younger than 65 years (N = 106) or 65 years and older (N = 88). Linear regression models were adjusted with the explanatory variables of WTHD, quality of life, as well as functional status, physical dependence, depression, anxiety, and sociodemographic variables.
Results: Older patients showed a 2.6% decrease in the total scores of perceived dignity-related distress compared to younger patients.
Conclusion: Older age could be a protective factor against the perception of loss of dignity in patients with advanced cancer, a more positive perspective of the aging experience.
Context: There is a lack of consensus about the appropriate moment to assess a potential wish to hasten death (WTHD) in patients with life-threatening illness, despite evidence of its positive appraisal among patients.
Objectives: To evaluate the practical potential and acceptability of questions about the WTHD in the first palliative care (PC) clinical encounter.
Design: A proof-of-concept single-arm unmasked trial.
Subjects: We enrolled 30 advanced cancer patients, 16 inpatients and 14 outpatients in their first PC clinical encounter.
Measurements: We assessed the WTHD using a semistructured interview guide, the Assessment of the Frequency and Extent of the Desire to Die (AFEDD) embedded in a multidimensional needs assessment carried out during the first PC encounter. Information about practical potential [patients consider the assessment (a) important and (b) helpful] and acceptability [patients (a) understand and (b) are not bothered by the questions] was obtained.
Results: Thirty-two patients were approached and 30 (94%) agreed to participate. The WTHD was present in two outpatients and eight inpatients. The question to assess WTHD were well understood by 94% of patients and was considered not bothersome by 87% and quite or very helpful by 80%, regardless of whether they had WTHD.
Conclusions: The results support that clinicians can integrate screening for the WTHD in usual clinical practice within a multidimensional needs assessment. Patient acceptability suggests that this as a part of patient-centered care including in the first PC clinical encounter. Further studies are needed to confirm efficacy and safety in larger and different populations.
Some older persons develop a persistent death wish without being severely ill, often referred to as “completed life” or “tiredness of life”. In the Netherlands and Belgium, the question whether these persons should have legal options for euthanasia or physician-assisted suicide (EAS) is intensely debated. Our main aim was to investigate the prevalence and characteristics of older adults with a persistent death wish without severe illness, as the lack of this knowledge is a crucial problem in de debate.
Physician-assisted death for patients suffering from psychiatric disorders is allowed in the Netherlands under certain circumstances. One of the central problems that arise with regard to this practice is the question of whether it is possible to distinguish between suicidality and a request for physician-assisted death. We set up this study to gain insight into how psychiatrists and general practitioners distinguish between suicidality and physician-assisted death. The data for this study were collected through qualitative interviews with 20 general practitioners and 17 psychiatrists in the Netherlands. From the interviews, we conclude that physicians distinguish three types of death wishes among patients suffering from psychiatric disorders: 'impulsive suicidality,' 'chronic suicidality,' and 'rational death wishes.' To discern between them they evaluate whether the death wish is seen as part of the psychopathology, whether it is consistent over time, and whether they consider it treatable. Some considered physician-assisted death an alternative to a 'rational suicide,' as this was perceived to be a more humane manner of death for the patient and their relatives. We argue that physician-assisted death can be justified also in some cases in which the death wish is part of the psychopathology, as the patient's suffering can be unbearable and irremediable. Physician-assisted death in these cases may remain the only option left to relieve the suffering.
Objective: Cultural backgrounds and values have a decisive impact on the phenomenon of the wish to die (WTD), and examination of this in Mediterranean countries is in its early stages. The objectives of this study were to establish the prevalence of WTD and to characterise this phenomenon in our cultural context.
Methods: A cross-sectional study with consecutive advanced inpatients was conducted. Data about WTD (Assessing Frequency & Extent of Desire to Die (AFFED) interview) and anxiety and depression (Edmonton Symptom Assessment System-revised (ESAS-r)) were collected through two face-to-face clinical encounters. Data were analysed with descriptive statistics, 2 and analysis of variance.
Results: 201 patients participated and 165 (82%) completed both interviews. Prevalence of WTD was 18% (36/201) in the first interview and 16% (26/165) in the second interview (p=0.25). After the first interview, no changes in depression (p=0.60) or anxiety (p=0.90) were detected. The AFFED shows different experiences within WTD: 11% of patients reported a sporadic experience, while 7% described a persistent experience. Thinking about hastening death (HD) appeared in 8 (22%) out of 36 patients with WTD: 5 (14%) out of 36 patients considered this hypothetically but would never take action, while 3 (8%) out of 36 patients had a more structured idea about HD. In this study, no relation was detected between HD and frequency of the appearance of WTD (p=0.12).
Conclusions: One in five patients had WTD. Our findings suggest the existence of different experiences within the same phenomenon, defined according to frequency of appearance and intention to hasten death. A linguistically grounded model is proposed, differentiating the experiences of the ‘wish’ or ‘desire’ to die, with or without HD ideation.
OBJECTIVES: The wish to die may be different in geriatric patients than in younger terminally ill patients. This study aimed to develop and validate instruments for assessing the wish to die in geriatric patients.
DESIGN: Cross-sectional study.
SETTING: Geriatric rehabilitation unit of a university hospital.
PARTICIPANTS: Patients (N = 101) aged 65 years or older with a Mini-Mental State Examination score of 20 or higher, admitted consecutively over a 5-month period.
MEASUREMENTS: The Schedule of Attitudes Toward Hastened Death (SAHD) was adapted to the older population (SAHD-Senior). A second tool was developed based on qualitative literature, the Categories of Attitudes Toward Death Occurrence (CADO). After cognitive pretesting, these instruments were validated in a sample of patients admitted to a geriatric rehabilitation unit.
RESULTS: The SAHD-Senior showed good psychometric properties and a unifactorial structure. In the studied sample, 12.9% had a SAHD-Senior score of 10 or higher, suggesting a significant wish to die. Associations were observed between high levels of the SAHD-Senior and advanced age, high levels of depressive symptoms, lower quality of life, and lower cognitive function. The CADO allowed for passive death wishes to be distinguished from wishes to actively hasten death. According to the CADO, 14.9% of the sample had a wish to die. The two instruments showed a concordance rate of 90.1%.
CONCLUSION: The wish to die in older patients admitted to rehabilitation can be validly assessed with two novel instruments. The considerable proportion with a wish to die warrants investigation into concept, determinants, and management of the wish to die.
Background: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life.
Aim: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics.
Design: A comparative cross-sectional study.
Participants: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores >= 1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale.
Results: Patients with a wish to hasten death had worse emotional functioning (p < 0.001), greater perceived loss of dignity (p < 0.001) and lower self-efficacy (p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death (p = 0.023) and marginally worse for the case group than the control group (p = 0.052).
Conclusion: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.
OBJECTIVE: Patients' desire to die (DD) is rarely discussed in palliative care (PC) due to health professionals' (HPs) feeling of uncertainty. The aim of the study was to develop and evaluate a training to increase HPs' self-confidence in responding professionally to patient's DD and to assess the feasibility of this approach.
METHODS: The training course was developed via focus groups and relevant literature and refined with an advisory board. An evaluation design was developed to evaluate training outcomes and to examine feasibility. To assess self-confidence, knowledge, skills, and attitudes: (1) standardized surveys were applied at T1 (before training), T2 (directly after), and T3 (3 months later), and were analyzed by descriptive and non-parametric statistics; and (2) participants' open feedback was summarized by content.
RESULTS: A two-day multi-disciplinary training was developed to improve self-confidence via diverse teaching methods. Twenty-four HPs from general and specialized PC were participated. Via self-rating on Likert scales at three time points, improvements were seen at T1, T2, and partly remained at T3, especially in the overall item of self-confidence in communicating with patients about their DD (means: 4.3. at T1, 5.7 at T2, and 5.9 at T3; on a 7-point scale with 1 = lowest value and 7 = highest value). Fewer improvements were found in skills (using different approaches) and attitudes (feeling less helplessness). Open feedback revealed a high appreciation for the training, especially the composition of participants, the role-play, and the overall increase of awareness of the topic.
SIGNIFICANCE OF RESULTS: The developed training on addressing DD meets a need and was perceived by the participants to be of added value. Future research should measure training effects with a validated instrument, including more participants, diverse participant groups, and a control group. Effects on patients should be assessed.
La réflexion proposée ici sur la question de la mort dans la fratrie confrontée au handicap et à la maladie, est née de l'articulation de mes recherches cliniques sur la manière dont le handicap ou la maladie peut transformer les liens fraternels, et de ma pratique de psychologue en CAMSP (centre d'action médico-sociale précoce). Il sera question ici non pas d'évoquer la mort réelle d'un frère, mais plutôt d'explorer le fantasme de mort, en partant d'une situation clinique. Un détour par un exposé théorique sur le déploiement de ce fantasme au sein du lien fraternel ordinaire permettra de comprendre ce qui peut se jouer dans les fratries comprenant un enfant en situation de handicap.
Ce chapitre montre que la question de la mort impliquant une personne en situation de handicap pose fondamentalement la question des représentations du handicap et interroge la manière dont on parvient, plus ou moins facilement, à penser le sujet en situation de handicap spécifiquement, et les enfants plus généralement, comme des êtres pensants et appréhendant, à leur manière, la réalité et/ou la perspective de la mort d'un proche et/ou celle de leur propre mort.
[Extrait de l'intro.]
Background: An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress.
Aim: To assess the opinion of hospitalized patients with advanced cancer about the proactive assessment of the wish to hasten death.
Design: Descriptive, cross-sectional study.
Setting/participants: We assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment’s importance.
Results: The wish to hasten death was reported by 46 (23.8%) patients. The majority of patients (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority of patients (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it.
Conclusions: In this study, most of the advanced cancer patients did not find the assessment of wish to hasten death to be upsetting, and a substantial proportion of patients in this study believe that it is important to routinely evaluate it in this setting. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients.
All articles in May 2019's special issue of Bioethics offer profound insights into the issue of "being a burden to others" in relation to wishes to die, which are highly relevant for ethical debates about end-of-life care and physician-assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon "being a burden" in relation to wishes to die and we will show how this analysis could benefit from a care ethical approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of "being a burden" therefore needs to take institutional and societal norms and structures into account, in addition to first-person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon "being a burden" as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on "being a burden" in relation to the practice of physician-assisted dying in the Netherlands.
The aims of this present study were to explore the use and meaning of metaphors and images about aging in older people with a death wish and to elucidate what these metaphors and images tell us about their self-understanding and imagined feared future. Twenty-five in-depth interviews with Dutch older people with a death wish (median 82 years) were analyzed by making use of a phenomenological–hermeneutical metaphor analysis approach. We found 10 central metaphorical concepts: (a) struggle, (b) victimhood, (c) void, (d) stagnation, (e) captivity, (f) breakdown, (g) redundancy, (h) subhumanization, (i) burden, and (j) childhood. It appears that the group under research does have profound negative impressions of old age and about themselves being or becoming old. The discourse used reveals a strong sense of distance, disengagement, and nonbelonging associated with their wish to die. This study empirically supports the theory of stereotype embodiment.
The article explores the underlying reasons for patients' self-perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview-based study of WTD in patients with advanced cancer and non-cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub-analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self-understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.
Patients at the end of their life who express a wish to die sometimes explain their wish as the desire not to be a burden to others. This feeling needs to be investigated as an emotion with an intrinsically dialogical structure. Using a phenomenological approach, two key meanings of the feeling of being a burden to others as a reason for a wish to die are identified. First, it is an existential suffering insofar as it contains the perception of a plight 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 those who bear the burden of caring for the person at the end of their life. It is therefore a moral emotion, encompassing a series of difficulties, including the subjective perception of a stark imbalance between giving and taking, the adequacy of the representation of the caregiver burden in the patient's mind, and the danger of diminishing the worth of one's life out of shame or self-denigration. R. D. Laing's terminology of crossed perspectives in interexperience is used to systematically distinguish the actual caregiver burden, the patient's view of the caregiver burden, the stress for the patient in feeling that s/he is a burden to the caregiver, and the caregiver's view of the patient's stress. The sense of being a burden implies the belief that the caregiver feels burdened, and the fear that this burden could become unbearable.
La fin de vie, et plus particulièrement l'euthanasie et le suicide médicalement assisté font l'objet de débats éthiques qui touchent à la fois les domaines politique, médical et juridique. Les auteures livrent leur réflexion sur l'incertitude médicale face aux demandes de morts anticipées. Après avoir décrit l'aspect législatif français sur ces questions et leur méthodologie de recherche, les auteures analysent les modalités et les motifs des demandes d'euthanasie et de suicide médicalement assisté ainsi que les différentes niveaux d'interprétation de ces demandes (désir de mort / souffrance). pour terminer, elles montrent de quelle manière la demande de hâter sa propre mort engage les patients, leurs proches et les médecins dans une temporalité particulière.
Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta-ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients' personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.
PURPOSE: Previous findings have shown that depression in advanced stages of cancer is associated with hopelessness and frequently with wishes for hastened death. The current study tries to investigate the relationship between hopelessness and desire for hastened death and if depression may be a moderator and/or mediator role in patients with advanced cancer.
METHOD: The participants were 102 patients with advanced cancer which they completed the Beck Hopelessness Scale (BHS), the Greek Schedule of Attitudes towards Hastened Death (G-SAHD), and the Greek Beck Depression Inventory (BDI).
RESULTS: Depression was highly correlated with hopelessness and desire for hastened death. Mediation analyses revealed that hopelessness influenced desire for hastened death as well as indirectly by its effect on depression. Similarly, depression was found as moderator in the relationship between hopelessness with desire for hastened death.
CONCLUSIONS: Hopelessness and desire for hastened death in patients with advanced cancer should be diagnosed and treated by taking into consideration the optimum care of depression as a priority in palliative care.
L'article 115 du Code Pénal suisse permet l'assistance au suicide (AS) lorsqu'il n'y a pas de mobile égoîste. Il offre ainsi un "droit-liberté" à chaque citoyen. Bien que la loi ne précise pas le rôle du médecin ni n'exige sa présence, l'Académie Suisse des Sciences Médicales a publié des directives éthiques. La forte augmentation du nombre d'AS depuis 2004 questionne la société et les médecins, en particulier sur leur capacité d'entendre et de dialoguer autour de cette demande en fin de vie. Le soignant se doit d'entendre et d'analyser cet appel, en respectant la volonté de chaque patient.