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.
Au sommaire de ce dossier sur le ressenti et les émotions des soignants dans leur activité professionnelle : "Les soignants et leurs émotions au quotidien" : les soignants doivent, devant leurs émotions, adoptés des stratégies afin d'empêcher les débordements sans, pour autant, être dans l'évitement. "Fatigue compassionnelle et traumatisme vicariant chez les soignants" : le traumatisme vicariant évoque un état de stress post-traumatique chez le soignant confronté au récit traumatique d'un patient. La fatigue compassionnelle se manifeste par une érosion graduelle de l'empathie, de l'optimisme et de la compassion. Ces troubles nécessitent une prise en compte immédiate et adaptée. "Figures de la souffrance et du deuil des soignants" : le travail de verbalisation et de symbolisation est essentiel dans ce contexte. "L'impact des situations difficiles sur les soignants" : il est important de prendre en compte ces émotions et d'identifier les ressources qui peuvent être proposées aux soignants. La solidarité entre soignants et la cohésion d'équipe sont également essentielles. "Des ressources pour soutenir les soignants" : ces ressources sont les temps d'échanges, formels ou non, les réunions d'équipe, les retours d'expérience et l'analyse des pratiques. "A l'écoute de la souffrance du corps soignant". "Les soignants face aux événements douloureux, témoignages". "Rester soignant malgré l'inconcevable.".
Origine : BDSP. Notice produite par APHPDOC R0xltID9. Diffusion soumise à autorisation
Despite of the spectacular progress of medicine, the evolutions so strongly noticed of science and scientific rationalization, that are not generally enough, on the one hand, a disease with an uncertain outcome like the cancerous disease, and on the other hand the stakes of the trajectory of an inevitable relationship that the disease presupposes between the patient and his physician, indeed, the suffering in the field of oncology would, however, require a thorough reading to understand these issues.
L’épuisement professionnel des soignants est particulièrement fréquent en cancérologie. Ses causes en sont plurifactorielles, car relevant quasiment toujours de l’association de facteurs personnels et professionnels. Ceux liés au travail peuvent être séparés en cinq catégories : le type de travail, la charge de travail, les conflits interpersonnels, les facteurs organisationnels et les facteurs managériaux. La qualité de vie au travail est un concept plus récent qui s’inscrit dans le champ de la psychologie positive. La démarche participative est un modèle organisationnel qui reposait initialement sur quatre composantes : la formation interne, les staffs pluriprofessionnels, le soutien aux équipes et la démarche projet. Récemment nous avons rajouté une cinquième composante devant le constat de la nécessité d’espaces d’échanges entre les médecins et les cadres de santé des services pour que le modèle marche. Ce modèle est un critère prioritaire HAS d’accréditation des établissements depuis la V 2010 pour la prise en charge des patients en soins palliatifs dans tous les services de soins. Dans la dernière partie de cet article nous verrons l’impact des facteurs managériaux et organisationnels mais également du modèle organisationnel de la démarche participative sur la qualité de vie au travail des soignants et sur la qualité des soins offerts aux patients et à leurs proches.
BACKGROUND: Patient death is an event that all health care workers will face at some point. Beyond the family, the greatest emotional strain is on people who work directly with the patient and family. Bereavement overload occurs after multiple losses without time for normal grief in between.
AIM: To investigate bereavement overload, its effects and related coping mechanisms of personnel working in adult medical wards.
SETTING: Four adult medical wards at National District Hospital, Bloemfontein.
METHODS: An analytical cross-sectional study design was performed with the aid of an interviewer administered questionnaire. The target population included health care providers (13 doctors and 20 nurses), eight final-year medical students, and four administrative staff working in thefour adult medical wards at National District Hospital, during August to October 2016.
RESULTS: Half (48.9%) of the 45 participants reported bereavement overload. None of the medical students reported bereavement overload compared to 60.0% of nurses, 75.0% of administrative staff and 53.9% of doctors. Nearly two-thirds (64.5%, n = 29) stated that they suffered from compassion fatigue. The majority of participants (62.2%) used only positive coping mechanisms. The use of negative coping mechanisms correlated directly with a longer duration in the medical field.
CONCLUSION: With a 49% prevalence of bereavement overload, it is important that support systems are in place to prevent the effects of negative coping mechanisms. The desirable outcome is that health care providers, who suffer from bereavement overload, experience compassion satisfaction and become more dedicated to the patients' well-being without expense to themselves.
Il était une fois deux psychanalystes qui voulaient parler de la mort autrement. Ils sont partis à la rencontre de ceux qui la côtoient tous les jours, qui l'ont rencontrée au détour d'un événement traumatique, qui ont traversé des deuils, qui ont survécu à une maladie ou à un accident. La mort se vit de manière toujours singulière. Elle mène au cimetière comme à la création, à la souffrance invivable comme à la renaissance.
Et il y a ceux qui ont approché la mort jusqu'à peut-être entrevoir ce qui se situe après... Joseph Agostini et Agnès Rouby leur ont donné la parole. Pour en finir avec la mort, c'est aussi et surtout un livre sur la vie... toujours recommencée.
L'exercice de médecin légale soulève de nombreuses réflexions éthiques et philosophiques par son rapport particulier à la mort, à la souffrance et à la violence. Ces réflexions sont développées dans ce texte.
BACKGROUND: Psychiatric research in the 1950s and 1960s showed potential for psychedelic medications to markedly alleviate depression and suffering associated with terminal illness. More recent published studies have demonstrated the safety and efficacy of psilocybin, MDMA, and ketamine when administered in a medically supervised and monitored approach. A single or brief series of sessions often results in substantial and sustained improvement among people with treatment-resistant depression and anxiety, including those with serious medical conditions. Need and Clinical Considerations: Palliative care clinicians occasionally encounter patients with emotional, existential, or spiritual suffering, which persists despite optimal existing treatments. Such suffering may rob people of a sense that life is worth living. Data from Oregon show that most terminally people who obtain prescriptions to intentionally end their lives are motivated by non-physical suffering. This paper overviews the history of this class of drugs and their therapeutic potential. Clinical cautions, adverse reactions, and important steps related to safe administration of psychedelics are presented, emphasizing careful patient screening, preparation, setting and supervision.
CONCLUSION: Even with an expanding evidence base confirming safety and benefits, political, regulatory, and industry issues impose challenges to the legitimate use of psychedelics. The federal expanded access program and right-to-try laws in multiple states provide precendents for giving terminally ill patients access to medications that have not yet earned FDA approval. Given the prevalence of persistent suffering and growing acceptance of physician-hastened death as a medical response, it is time to revisit the legitimate therapeutic use of psychedelics.
Les soignants sont confrontés à la maladie et à la mort, parfois régulièrement. Face à ces situations difficiles, les émotions qu’ils éprouvent affectent leur vie dans toutes ses composantes : corporelle, intellectuelle, spirituelle et sociale. Il est important de prendre en compte ces émotions et d’identifier les ressources qui peuvent être proposées aux soignants. La solidarité entre soignants et la cohésion d’équipe sont également essentielles.
Les deuils et émotions des soignants sont souvent considérés comme incongrus et illégitimes. Ces souffrances sont peu abordées dans les milieux de soins, comme si le poids de leur présence signait un manque de professionnalisme. Or, qu’ils soient liés à des fantasmes d’immortalité ou de toute-puissance, à un idéal du soin ou à des blessures personnelles, ces deuils témoignent unanimement des épreuves traversées collectivement par les équipes de soins.
Le travail de verbalisation et de symbolisation est essentiel dans ce contexte.
Moral distress occurs when a nurse knows the right action but is impeded from taking that right action because of institutional constraints. Caring for patients who are dying might evoke distress, including moral distress. The distress from a difficult clinical situation is likely to permeate other areas of practice. In this article, 2 cases are used as a means to distinguish moral distress from other distress arising from clinical situations. Opportunities to alleviate distress include increasing knowledge, improved communication, enhanced collaboration, and development of institutional supports.
While relieving suffering is palliative care's primary aim, how palliative care providers navigate patients' nonphysical suffering in their day-to-day work and the impact of working with nonphysical suffering on the clinician have been understudied. This exploratory study aims to begin to fill this gap in the literature. Results revealed that palliative care clinicians face several challenges in their efforts to navigate patients' nonphysical suffering in their day-to-day work, including (a) the intangible nature of nonphysical suffering, (b) systemic barriers (e.g., lack of time and adequate resources), (c) clinician helplessness or suffering, and (d) a lack of education, training, and support for clinicians specific to their work with patients' nonphysical suffering. Study outcomes have the potential to improve frontline clinical care with patients and support and education for clinicians.
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.