What About Us? Experiences of Relatives Regarding Physician-Assisted Death for Patients Suffering from Mental Illness: A Qualitative Study

Physician-assisted death (PAD) for patients suffering from mental illness is legally permitted in the Netherlands. Although patients’ relatives are not entrusted with a legal role, former research revealed that physicians take into account the patient’s social context and their well-being, in deciding whether or not to grant the request. However, these studies focussed on relatives’ experiences in the context of PAD concerning patients with somatic illness. To date, nothing is known on their experiences in the context of PAD concerning the mentally ill. We studied the experiences of relatives with regard to a PAD request by patients suffering from mental illness. The data for this study were collected through 12 interviews with relatives of patients who have or had a PAD request because of a mental illness. We show that relatives are ambivalent regarding the patient’s request for PAD and the following trajectory. Their ambivalence is characterised by their understanding of the wish to die and at the same time hoping that the patient would make another choice. Respondents’ experiences regarding the process of the PAD request varied, from positive (‘intimate’) to negative (‘extremely hard’). Some indicated that they wished to be more involved as they believe the road towards PAD should be a joint trajectory. To leave them out during such an important event is not only painful, but also harmful to the relative as it could potentially complicate their grieving process. Professional support during or after the PAD process was wanted by some, but not by all.

Wish to die and hasten death in palliative care: a cross-sectional study factor analysis

ObjectivesThe wish to die (WTD) is a complex experience sometimes accompanied by intention to hasten death. The aim of this study is to identify the predictive factors for WTD and hastening death intention (HDI) in Spanish patients with advanced illness.MethodsThis is a subanalysis of a larger cross-sectional study conducted on patients experiencing advanced illness (N=201). Sociodemographic data and data related to symptom burden (Edmonton Symptom Assessment System-Revised), depressive and anxious symptoms (Hospital Anxiety and Depression Scale), demoralisation (Spanish version of the Demoralisation Scale), perceived loss of dignity (Patient Dignity Inventory) and WTD (Assessing Frequency and Extent of Desire to Die) were collected. The analysis used univariate and multivariate logistic regression.ResultsThe prevalence of WTD in the sample was 18%, with 8 out of 36 patients reporting HDI. The independent factors predictive of WTD were (1) knowledge of approximate prognosis (OR=4.78; 95% CI 1.20 to 10.8; p=0.001); (2) symptom burden (OR=1.05; 95% CI 1.00 to 1.09; p=0.038); and (3) the Demoralisation Scale subsection ‘lack of meaning and purpose in life’ (OR=1.61; 95% CI 1.30 to 1.99; p=0.000). An independent predictive factor for HDI was the Demoralisation Scale subsection ‘patients’ distress and coping abilities’ (OR=1.47; 95% CI 1.04 to 2.08; p=0.028), while having religious beliefs was a protective factor (OR=0.13; 95% CI0.17 to 0.97; p=0.047).ConclusionsDemoralisation was found to be the only common triggering factor for WTD and HDI, although experiences share certain features. Identification of the predictive factors for WTD and HDI may contribute to their prevention and management.

The Death Wish in the Hebrew Bible

This is the first book to systematically investigate the texts in the Hebrew Bible in which a character expresses a wish to die. Contrary to previous scholarship on these texts that assumed these death wishes were simply a desire to escape suffering, Hanne Løland Levinson employs narrative criticism and conversation analysis, together with diachronic methods, to carefully hear each death-wish text in its literary context. She demonstrates that death wishes embody powerful, multi-faceted rhetorical strategies. Grouping the death-wish texts into four main rhetorical strategies of negotiation, expression of despair and anger, longing to undo one's existence, and wishing for a different reality, Løland Levinson portrays the complex reasons why characters in the Hebrew Bible wish for death. She concludes that the death wishes navigate the tension between longing for death and fighting for survival - a tension that many live with also today as they attempt to claim agency and autonomy in life.

“If Only I Could Start All over…” A Case Study of Spiritual Care Provision to a Patient with a Psychiatric Disorder Requesting Physician-Assisted Dying in The Netherlands

In a growing number of countries, legislation permits physicians—under strict conditions—to grant a request for physician-assisted dying (PAD). Legally allowing for the possibility of granting such a request is in accordance with central humanistic values such as respect for autonomy and self-determination. The Netherlands is one of few countries where severe suffering from a psychiatric illness qualifies as a ground for a request for PAD. Central in this article is a case description of spiritual care provision in the Netherlands by a humanist healthcare chaplain to a patient requesting PAD because of psychiatric suffering. We discuss what we may learn from the case description about how spiritual caregivers may support patients who express a wish to die, and about their contribution to the care for patients with a psychiatric disorder who request PAD.

Autonomy and control in the wish to die in terminally ill patients: A systematic integrative review

Background/Objective Personal autonomy and control are major concepts for people with life-limiting conditions. Patients who express a wish to die (WTD) are often thought of wanting it because of loss of autonomy or control. The research conducted so far has not focused on personal beliefs and perspectives; and little is known about patients’ understanding of autonomy and control in this context. The aim of this review was to analyze what role autonomy and control may play in relation to the WTD expressed by people with life-limiting conditions. Methods A systematic integrative review was conducted. The search strategy used MeSH terms in combination with free-text searching of the EBSCO Discovery Service (which provides access to multiple academic library literature databases, including PubMed and CINAHL), as well as the large PsycINFO, Scopus, and Web of Science library literature databases from their inception until February 2019. The search was updated to January 2021. Results After the screening process, 85 full texts were included for the final analysis. Twenty-seven studies, recording the experiences of 1,824 participants, were identified. The studies were conducted in Australia (n = 5), Canada (n = 5), USA (n = 5), The Netherlands (n = 3), Spain (n = 2), Sweden (n = 2), Switzerland (n = 2), Finland (n = 1), Germany (n = 1), and the UK (n = 1). Three themes were identified: (1) the presence of autonomy for the WTD, (2) the different ways in which autonomy is conceptualized, and (3) the socio-cultural context of research participants. Significance of results Despite the importance given to the concept of autonomy in the WTD discourse, only a few empirical studies have focused on personal interests. Comprehending the context is crucial because personal understandings of autonomy are shaped by socio-cultural–ethical backgrounds and these impact personal WTD attitudes.

Feeling Seen, Being Heard: Perspectives of Patients Suffering from Mental Illness on the Possibility of Physician-Assisted Death in the Netherlands

Physician-assisted death (PAD) for patients suffering from a mental illness is allowed in the Netherlands under certain conditions but is a very controversial topic, mainly discussed by ethicists and physicians. The voice of the patient is rarely included in the debate, so we know little about what their views on the topic are. We aim to understand the views of patients with mental illness and wish to die with regard to the possibility of PAD in the Netherlands. The data for this qualitative study were collected through 21 in-depth interviews with Dutch patients who have a wish for PAD as a result of suffering from a mental illness. We identified four themes in relation to the meaning of PAD for the patients suffering from mental illness and wish to die. These themes are (1) Autonomy and self-determination, (2) ending the suffering, (3) recognition, and (4) a dignified end-of-life. The option of PAD for patients suffering from mental illnesses was considered of great importance to the patients who have a wish to die. We highlight the importance of ‘recognition’ for the situation of the patient, as this could lead to new perspective. We argue that psychiatrists need to reflect on providing this recognition in earlier phases of treatment, taking seriously and discussing a wish for PAD in treatment is beneficial to patients. It provides space for the patient to discuss their wishes and could cause them not wanting to die anymore.

Current wishes to die; characteristics of middle-aged and older Dutch adults who are ready to give up on life: a cross-sectional study

Background Literature shows that middle-aged and older adults sometimes experience a wish to die. Reasons for these wishes may be complex and involve multiple factors. One important question is to what extent people with a wish to die have medically classifiable conditions. Aim (1) Estimate the prevalence of a current wish to die among middle-aged and older adults in The Netherlands; (2) explore which factors within domains of vulnerability (physical, cognitive, social and psychological) are associated with a current wish to die; (3) assess how many middle-aged and older adults with a current wish to die do not have a medically classifiable condition and/or an accumulation of age-related health problems. Methods Data of 2015/16 from the Longitudinal Aging Study Amsterdam were used for this cross-sectional study (1563 Dutch middle-aged and older adults aged between 57 and 99 years), obtained through structured medical interviews and self-reported questionnaires. Three experienced physicians assessed whether the participants with a current wish to die could be classified as having a medically classifiable condition and/or an accumulation of age-related health problems. Results N = 62 participants (4.0%) had a current wish to die. Having a current wish to die was associated with multiple characteristics across four domains of vulnerability, among which: self-perceived health, problems with memory, self-perceived quality of life and meaningfulness of life. Fifty-four participants with a current wish to die were assessed with having a medically classifiable condition, of which one was also assessed with having an accumulation of age-related health problems. Six people were assessed to have neither, and for two people it was unclear. Conclusion A small minority of middle-aged and older adults in the Netherlands have a current wish to die. Most of them can be classified with a medical condition and one person with an accumulation of age-related health problems. Furthermore, the findings show that having a current wish to die is multi-faceted. There is still a need for more knowledge, such as insight in to what extent suffering stemming from the medical classifiable disease contributes to the development of the wish to die.

Thinking About ‘Completed Life’ Euthanasia in the Netherlands from the Generative Perspective: A Reflexive Exploration

In this reflective essay, we explore the concept of generativity and propose it as a more positive interpretation of the experience of ‘completed life’ and its bearing on the wish to die. In 2010, more than 100,000 people in the Netherlands signed a petition requesting an extension of the existing euthanasia legislation. They asked the government to grant euthanasia to older persons who feel tired of life and who regard their lives as complete, in the absence of physical or psychic sickness. Debates about ‘completed life’ euthanasia have continued since then, but the various factions in these debates have been unable to reach consensus or conclusion. In this paper, we analyse the concept of generativity and use this to interpret statements by supporters of ‘completed life’ euthanasia. Next, we disentangle common idioms that people use when they grow older and feel that death is approaching yet still out of reach. The aim of this article is to invite readers to reflect on the wish for ‘completed life’ euthanasia as a meaningful end-of-life reaction.

Patients at high risk of suicide before and during a COVID-19 lockdown: ecological momentary assessment study

The coronavirus disease 2019 (COVID-19) outbreak may have affected the mental health of patients at high risk of suicide. In this study we explored the wish to die and other suicide risk factors using smartphone-based ecological momentary assessment (EMA) in patients with a history of suicidal thoughts and behaviour. Contrary to our expectations we found a decrease in the wish to die during lockdown. This is consistent with previous studies showing that suicide rates decrease during periods of social emergency. Smartphone-based EMA can allow us to remotely assess patients and overcome the physical barriers imposed by lockdown.