Cette réédition totalement revue et enrichie contribue à une appropriation des évolutions législatives portées par la loi du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie (droits de la personne, sédation profonde et continue, souffrance, directives anticipées opposables, etc.). Les conditions du mourir interrogent à la fois nos obligations sociales et les exigences du soin. Alors que s'instaurent une nouvelle culture de la fin de vie, de nouvelles solidarités, quelles seront les incidences sur les pratiques professionnelles au service de la personne malade et de ses proches ? Ces situations toujours singulières, irréductibles aux débats généraux portant sur "la mort dans la dignité" justifient une exigence de clarification, la restitution d’expériences et la transmission de savoirs vrais.
Dans une approche pluridisciplinaire, cet ouvrage associe les meilleures compétences pour proposer une synthèse rigoureuse et complète des réflexions et des expériences au cœur des débats les plus délicats de notre société. Il constitue une indispensable référence à destination des professionnels mais tout autant d'un large public, la concertation nationale sur la fin de vie ayant fait apparaître un important besoin d'informations dans ces domaines à la fois intimes et publics.
La souffrance est une entité universelle, multidimensionnelle, mais aussi unique et personnelle, paradoxalement sous-diagnostiquée, alors qu’elle est omniprésente dans notre pratique en milieu hospitalier. Le but de cet article est de proposer au lecteur quelques pistes pour l’exploration et l’identification de la souffrance des proches de patients en situation palliative, et surtout quelques outils d’accompagnement et de soutien.
Dr. Wakam: I’m 5 hours into my ICU shift at a community hospital in Detroit when the results of another arterial blood gas return. My patient has been hospitalized for 3 days and is Covid-19–positive. Over the past 12 hours, his treatment has progressed from intubation, to prone positioning on 100% fractional inspired oxygen, to medically induced paralysis, and finally to bilevel ventilation. The results from the arterial blood gas are dismal: pH 7.19, pCO2 70.1, pO2 63.7, HCO3 26.0. He has already experienced episodes of profound hypoxia when we try to rotate him into a supine position, and his heart has begun to show signs of strain, with periods of atrial fibrillation with rapid ventricular response and nonsustained runs of ventricular tachycardia. A request to transfer the patient for extracorporeal membrane oxygenation (ECMO) is denied. It’s 11 p.m., and I’m worried that my patient won’t survive until morning.
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In the September issue of the American Journal of Bioethics, Kious and Battin present their arguments on why physician aid-in-dying (PAD) due to severe suffering should also be allowed in non-terminal psychiatric diseases. The authors argue that a crucial aspect of PAD is the assessment of the decision-making capacity. Furthermore, they elaborate on the incompatibility of current PAD regulations and compulsory treatment because of suicidality, emphasizing differences between European, Canadian, and US-American policies. They differentiate between possible pathways the discussion about laws and policies concerning medically assisted dying could lead to. Firstly, keep the status quo, requiring a terminal illness, without considering the suffering caused by mental illness. Secondly, a change toward a partial opening of PAD for people with mental illness if their decision-making capacity is intact. This approach would require a change in policies regarding assisted dying while at the same time changing the involuntary civil commitment practices. The third approach devises a metric to measure suffering. While allowing patients who reach the threshold of unbearable suffering to access PAD, people with lower scores of suffering would fall under the policies of involuntary civil commitment and treatment. This third approach poses difficult questions concerning the nature of an instrument to determine suffering, the definition of suffering and its thresholds, and about the authority of the gatekeeper determining whether a person qualifies for PAD.
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Suffering experiences are common phenomena in palliative care. In this study, we aim to explore the different patterns of suffering in palliative care. Adult palliative care patients were recruited from the University of Malaya Medical Centre. Suffering scores were charted 3 times a day for a week. The characteristics of the suffering charts were analyzed using SPSS. The patterns of suffering were analyzed using structural pattern recognition. A total of 53 patients participated. The overall trends of suffering were downward (64%), upward (19%), and stable (17%). Median minimum and maximum suffering scores were 2/10 and 6/10, with an average of 3.6/10. Nine patterns of suffering were recognized from categorizing two key characteristics of suffering (intensity and fluctuation)—named S1 to S9. Understanding the different patterns of suffering may lead to better suffering management.
L'auteur cherche à répondre à la souffrance psychique et existentielle de ses patients. Pour se faire, il utilise les théories de Viktor Frankl car ce psychiatre a consacré toute sa carrière à une recherche empirique sur le sens de la vie.
Depuis l'Oregon Death with Dignity Act adopté en 1997, la dépénalisation de l'euthanasie aux Pays-Bas en 2001, puis en Belgique l'année suivante, de plus en plus de personnes demandent l'euthanasie ou en considèrent la possibilité.
Partant d'un cas particulier, nous esquisserons d'abord la problématique de l'euthanasie, pour exposer ensuite, sur la base des critères légaux, les différents points épineux de cette pratique, non seulement sur la forme, mais aussi sur le fond.
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Le cancer du col utérin est fréquent chez les jeunes femmes en zone rurale et vu souvent au stade tardif. La présente étude avait pour objectif de questionner les facteurs responsables des souffrances physiques et psychologiques de ces patients en fin de vie. La question de la fin de vie qui fait référence ici aux soins palliatifs reste une des perspectives non négligeable de sa prise en charge. Il s'agit d'une étude qualitative et rétrospective à visée descriptive et concerne une série de trois cas de cancer du col de l'utérus suivis à l'hôpital Saint Vincent de Paul au cours de l'année 2017. Les données ont été collectées à partir des dossiers de soins des patientes. Ces données ont été analysées selon la méthode de création et gestion de code-books et plus particulièrement le codage par catégories ontologiques. Les résultats de ce travail nous ont permis d'accuser les facteurs tels que le retard de la suspicion et du diagnostic du cancer du col utérin, la difficulté d'accès aux soins holistiques ainsi que la précarité sociale comme prétexte des souffrances physiques et psychologiques que connaissent ces patientes reçues dans le milieu éloigné des métropoles en fin de vie. Cette étude permet d'insister sur les approches de soins palliatifs comme composante incontournable de la prise en charge en milieu rural.
Palliative care has long recognized the importance of treating the whole person to address a patient's physical, mental, and spiritual suffering. To address psychological suffering, palliative care often draws upon the pharmacotherapy and psychotherapy offered by psychiatry. Several new developments have occurred in the past decade within psychiatry that impact palliative care. For example, the recent updating of the Diagnostic and Stastistical Manual of Mental Disorders has led to renewed discussions on how to best distinguish grief from depression or recognize that both may be present at the same time. In this article, we draw upon a team of psychiatric, palliative care, and dual-trained physicians to highlight the “Top 10” tips from psychiatry to provide relief for patients with chronic disease or at the end of life.
BACKGROUND: Palliative sedation for existential suffering (PS-ES) is a controversial clinical intervention. Empirical studies about physicians' perceptions do not converge in a clear position and current clinical practice guidelines do not agree either regarding this kind of intervention.
AIM: To gain deeper insight into physicians' perceptions of PS-ES, the factors influencing it, the conditions for implementing it and the alternatives to it.
DESIGN: Systematic review of qualitative, quantitative and mixed-methods studies following the Peer Review Electronic Search Strategies and Preferred Reporting Items for Systematic Reviews and Meta-analyses protocols; quality appraisal and thematic synthesis methodology.
DATA SOURCES: Seven electronic databases (PubMed, CINAHL, Embase, Scopus, Web of Science, PsycINFO, PsycARTICLES) were exhaustively searched from inception through March 2019. Two reviewers screened paper titles, abstracts and full texts. We included only peer-reviewed journal articles published in English, French, German, Dutch, Spanish, Italian or Portuguese that focused on physicians' perceptions of PS-ES.
RESULTS: The search yielded 17 publications published between 2002 and 2017. Physicians do not hold clear views or agree if and when PS-ES is appropriate. Case-related and individual-related factors that influenced physicians' perceptions were identified. There is still no consensus regarding criteria to distinguish between necessary and sufficient conditions for invoking PS-ES. Some alternatives to PS-ES were identified.
CONCLUSIONS: To date, there is still no consensus on physicians' perceptions of PS-ES. Further research is necessary to understand factors that influence physicians' perceptions and philosophical-ethical presuppositions underlying this perceptions.
BACKGROUND: Notwithstanding fears of overly permissive approaches and related pleas to refuse euthanasia for psychological suffering, some Belgian hospitals have declared that such requests could be admissible. However, some of these hospitals have decided that such requests have to be managed and carried out outside their walls.
MAIN TEXT: Ghent University Hospital has developed a written policy regarding requests for euthanasia for psychological suffering coming from patients from outside the hospital. The protocol stipulates several due care criteria that go beyond the requirements of the Belgian Euthanasia Law. For instance, the legally required first and second consulted physicians should all be psychiatrists and be affiliated with a psychiatry department of a Flemish university hospital. Moreover, euthanasia for psychological suffering can only be performed if the advices of these consulted physicians are positive. Importantly, preliminary reflection by the multidisciplinary Hospital Ethics Committee was introduced to discuss every request for euthanasia for psychological suffering coming from outside the hospital.
CONCLUSION: In this way, the protocol supports psychiatrists faced with the complexities of assessing such requests, improves the quality of euthanasia practice by ensuring transparency and uniformity, and offers patients specialised support and guidance during their euthanasia procedure. Nevertheless, some concerns still remain (e.g. relating to possible unrealistic patient expectations and to the absence of aftercare for the bereaved or for patients whose requests have been refused).
Although suffering in palliative care has received increasing attention over the past decade, the psychological processes that underpin suffering remain relatively unexplored.
Objective: To understand the psychological processes involved in the experiencing of suffering at the end phase of life.
Methods: Semistructured interviews were conducted with 20 palliative care inpatients from an academic medical centre in Kuala Lumpur, Malaysia. The transcripts were thematically analysed with NVIVO9.
Results: 5 themes of psychological processes of suffering were generated: (1) perceptions, (2) cognitive appraisals, (3) hope and the struggles with acceptance, (4) emotions and (5) clinging. A model of suffering formation was constructed.
Conclusion: The findings may inform the development of mechanism-based interventions in the palliation of suffering.
OBJECTIVE: Demoralization is an existential distress syndrome that consists of an incapacity of coping, helplessness, hopelessness, loss of meaning and purpose, and impaired self-esteem. It can affect cancer patients, and the Demoralization Scale is a valid instrument to assess it. The present study aimed to investigate the prevalence of demoralization in end-of-life cancer patients and its associations with the medical and psychosocial variables. In addition, the latent dimensions of demoralization emerging in this distinctive population were explored.
METHOD: The study is cross-sectional. The sample consisted of 235 end-of-life cancer patients with a Karnofsky performance status (KPS) lower than 50 and a life expectancy of a few weeks. For each patient, personal and medical data was gathered by a palliative physician and a set of validated rating scales, assessing demoralization, anxiety, depression, physical symptoms, pain, spiritual well-being, and dignity, was administered by a psychologist during the first consultation.
RESULT: Sixty-four participants (27.2%) had low demoralization, 50.2% (n = 118) had medium demoralization, and 22.6% (n = 53) had high demoralization. Factor analysis evidenced a five-factor solution that identified the following demoralization factors: Emotional Distress and Inability to Cope, Loss of Purpose and Meaning, Worthlessness, Sense of Failure, and Dysphoria. All the considered variables were associated with demoralization, except for pain, nausea, breathing problems, and sociodemographic and clinical variables.
SIGNIFICANCE OF RESULTS : End-of-life cancer patients showed higher levels of demoralization than has been reported in other studies with advanced cancer. These data could suggest that demoralization could increase in proximity to death and with impaired clinical condition. In particular, the five demoralization dimensions that emerged could represent the typical concerns around which the syndrome evolves in end-of-life cancer patients. Finally, spiritual well-being could play a protective role with respect to demoralization.
Background: Nurses witness pain and distress up close and consequently experience their own suffering. A narrative study of Canadian nurses’ participating in medical assistance in dying found nurses’ previous witnessing of unresolved end-of-life suffering has shaped their acceptance of medical assistance in dying. Little is known about the impact of participating in medically assisted dying on nurses’ suffering.
Purpose: To explore how nurses’ overall experience of suffering is shaped by participating in medical assistance in dying.
Methods: Qualitative secondary analysis using narrative inquiry and thematic analysis.
Results: Nurses’ narratives are chronologically organized addressing experiences of suffering before medical assistance in dying was a legal option and after its implementation. An overarching narrative before the availability of medical assistance in dying is (1) a culture of nurses’ taken-for-granted suffering: feeling terrible. After medical assistance in dying, two key narratives describe (2) transformational feelings of a beautiful death and (3) residual discomfort. Nurses found their suffering transformed when participating in medical assistance in dying; end-of-life care was satisfying and gratifying. And yet, unanswered questions due to worries of becoming desensitized and ongoing deeper questioning remain.
Conclusions: Participating in medical assistance in dying has positively impacted nurses and starkly contrasts their previous experiences caring for those with unbearable suffering. Further research is needed to explore becoming desensitized and long-term emotional impact for nurses.
Les notions fondamentales des soins palliatifs sont présentées en fiches synthétiques, avec des cas concrets et des situations cliniques. L'ouvrage aborde la douleur, les symptômes, le soin de confort, la souffrance psychique, la sédation ou encore l'éthique.
BACKGROUND: In Switzerland, people can be granted access to assisted suicide (AS) on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person's conduct is not selfishly motivated. No restrictions relating to the ground of suffering are mentioned in the act. Existential suffering as a reason for wanting to die, however, gives raise to controversial issues. Moreover, existential suffering lacks definition and no consensus exists on how to evaluate and manage it. This study explores the perspectives of care professionals and volunteers from a "right-to-die organization" on existential suffering as a motive for assisted suicide requests.
METHODS: A qualitative study based on face-to-face interviews was conducted with twenty-six participants: palliative care and primary care providers as well as EXIT right-to-die organization volunteers. Elements from the grounded theory approach were used.
RESULTS: The twenty-six participants described existential suffering in a multiplicity of individual ways. In total, sixty-three stories were recounted. Their representations were grouped into eight categories: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. According to all participants, suffering coming from the loss of self-identity was always linked to physical decline, as if one's image completely defined someone's identity. Society's perception of old people and vulnerable people were also often questioned. Another interesting point was that only four stories referring to a "pure" existential suffering were found. This suffering was related to a feeling that life has come to an end, without identification of any other related restriction or suffering.
CONCLUSIONS: Existential suffering is multifaceted. Legislators and right-to-die organisations have to address the question of what make a AS acceptable. The plurality of existential suffering implies the need of a very personalized care. A better understanding of what it is made of could provide a "toolbox" to people concerned by these requests, helping them to explore it in order to offer suffering people a wider range of alternatives.
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.
Existential suffering is commonly experienced by patients with serious medical illnesses despite the advances in the treatment of physical and psychological symptoms that often accompany incurable diseases. Palliative care (PC) clinicians wishing to help these patients are faced with many barriers including the inability to identify existential suffering, lack of training in how to address it, and time constraints. Although mental health and spiritual care providers play an instrumental role in addressing the existential needs of patients, PC clinicians are uniquely positioned to coordinate the necessary resources for addressing existential suffering in their patients. With this article, we present a case of a patient in existential distress and a framework to equip PC clinicians to assess and address existential suffering.
This paper reports the impact of a major life event-death-on the physical, psychological and social well-being of the deceased's close friends. We utilised data from a large longitudinal survey covering a period of 14 years (2002-2015) consisting a cohort of 26,515 individuals in Australia, of whom 9,586 had experienced the death of at least one close friend. This longitudinal cohort dataset comprises responses to the SF-36 (health related quality of life measure) and allowed for analysis of the short and longer-term impacts of bereavement. In order to manage the heterogeneity of the socio-demographics of respondents who did/not experience a death event, we use a new and robust approach known as the Entropy Balancing method to construct a set of weights applied to the bereaved group and the control group (the group that did not experience death). This approach enables us to match the two groups so that the distribution of socio-demographic variables between the two groups are balanced. These variables included gender, age, marital status, ethnicity, personality traits, religion, relative socio-economic disadvantage, economic resources, and education and occupation and where they resided. The data show, for the first time, a range of negative and enduring consequences experienced by people following the death of a close friend. Significant adverse physical and psychological well-being, poorer mental health and social functioning occur up to four years following bereavement. Bereaved females experienced a sharper fall in vitality, suffered greater deterioration in mental health, impaired emotional and social functioning than the male counterparts up to four years after the death. The data show that the level of social connectedness plays an important role in bereavement outcomes. Specifically, we found that less socially active respondents experienced a longer deterioration in physical and psychological health. Finally, we found evidence that the death of a close friend lowered the respondent's satisfaction with their health. Since death of friends is a universal phenomenon, we conclude the paper by reflecting on the need to recognise the death of a close friend as a substantial experience, and to offer support and services to address this disenfranchised grief. Recognising bereaved friends as a group experiencing adverse outcomes can be used internationally to prompt health and psychological services to assist this specific group, noting that there may be substantial longevity to the negative sequelae of the death of a friend. Facilitating bereaved people's support networks may be a fruitful approach to minimising these negative outcomes.