CONTEXT: Psychological symptoms are common among palliative care patients with advanced illness, and their effect on quality of life can be as significant as physical illness. The demand to address these issues in palliative care is evident, yet barriers exist to adequately meet patients' psychological needs.
OBJECTIVES: This article provides an overview of mental health issues encountered in palliative care, highlights the ways psychologists and psychiatrists care for these issues, describes current approaches to mental health services in palliative care, and reviews barriers and facilitators to psychology and psychiatry services in palliative care, along with recommendations to overcome barriers.
RESULTS: Patients in palliative care can present with specific mental health concerns that may exceed palliative care teams' available resources. Palliative care teams in the USA typically do not include psychologists or psychiatrists, but in palliative care teams where psychologists and psychiatrists are core members of the treatment team, patient well-being is improved.
CONCLUSION: Psychologists and psychiatrists can help meet the complex mental health needs of palliative care patients, reduce demands on treatment teams to meet these needs and are interested in doing so; however, barriers to providing this care exist. The focus on integrated care teams, changing attitudes about mental health, and increasing interest and training opportunities for psychologists and psychiatrists to be involved in palliative care, may help facilitate the integration of psychology and psychiatry into palliative care teams.
Relationships of care for those facing illness are inherent to the practice of medicine. Palliative care provides interpersonal space to patients and families that helps them face serious illness and dying. We consider therapeutic holding uniquely critical in palliative care but see it as applying in varied forms throughout medicine. Its optimization requires a deep understanding of its nature. We use theoretical foundations of psychodynamic therapy, which uses the therapeutic relationship as its sole intervention, to identify the key elements of palliative care's therapeutic holding. We draw together six major concepts to do so. Using a fairly typical case, we illustrate how a palliative care team that included a psychodynamic therapist created therapeutic holding. This article came as part of a discussion group about psychodynamic cases involving serious illness and evolved in discussion with the rest of the authors. Northwestern's Institutional Review Board (IRB) exempted this project. This case is anonymized; sociodemographic and specific illustrations are changed. This case exemplifies how psychodynamic theory discerns and describes elements of palliative care's therapeutic holding. The case further illuminates the important place of therapeutic holding in effective palliative care and shows how psychodynamic therapy can help. We urge further research on therapeutic holding in palliative care.
Background: Alexithymia, or difficulty identifying and describing emotions and sensations, contributes to an increased risk of chronic pain, and low help-seeking.
Objective: To investigate whether family caregivers of advanced cancer patients visiting a palliative care department had alexithymia, and whether this was related to their pain intensity, personalized pain goals, and help-seeking for chronic musculoskeletal pain.
Design: A single-center cross-sectional survey.
Measurements: Pain intensity was evaluated using a numerical rating scale. Pain improvement was evaluated against personal goals. Alexithymia was assessed using the Toronto Alexithymia Scale-20 (TAS-20), and anxiety and depression using the Hospital Anxiety and Depression Scale.
Setting/Subjects: Of 320 family caregivers visiting the palliative care department, 152 (47.5%) had chronic musculoskeletal pain; all 152 were included in the study.
Results: Alexithymia was observed in 36.2% of participants. Participants with higher scores on the TAS-20 tended to have higher pain intensity scores and personal pain goal scores. TAS-20 score had the strongest correlation with personal pain goals, with a correlation coefficient of 0.555 (p < 0.001).
Conclusions: Pain intensity in family caregivers with alexithymia tended to be high. These participants set higher personal pain goals (lower goals for symptom improvement) than those without alexithymia. We found no difference in personal pain goal response between family caregivers with and without alexithymia. When we examine pain in family members with alexithymia who are caring for cancer patients, we need to recognize that they may set higher personal pain goals and seek less help.
L'enfant et la mort constitue un des fils conducteurs du Petit Prince, ce conte poétique et philosophique, véritable invitation à (re)trouver l'enfant en soi, comme si, face à la mort et à son irreprésentable, il y avait urgence à retourner en enfance et à se délecter des miracles du jeu.
Ce chapitre est l'une des contributions de conférenciers intervenus lors d'une journée d'études de l'Ecole de Propédeutique à la Connaissance de l'Inconscient intitulée "Deuil et séparation". L'auteure est intervenue sur le deuil blanc d'une personne atteinte de la maladie d'Alzheimer. Elle définit ce qu'est le deuil blanc, ses répercurssions psychiques tant chez le malade que chez ses proches aidants.
L'épreuve de la maladie grave transforme la dynamique du couple. Les professionnels témoignent des ressources et des difficultés des couples à maintenir un espace intime et sécurisant. Il est important pour les accompagnants de réfléchir à leurs représentations du couple et à leur positionnement, à veiller à ne pas violenter davantage ces unions déjà fortement éprouvées.
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 AND PURPOSE: This study aimed to examine the psychometric properties of the Revised Death Attitude Profile (DAP-R) in a sample of Greek nurses and nursing students.
METHODS: A convenience sample (n = 934) was used from six National Health System hospitals, and two University Schools of Nursing in central and northern Greece completed the Greek version of the DAP-R (Gr-DAP-R).
RESULTS: Principal component analysis with varimax rotation revealed a six-factor solution, including approach acceptance, death avoidance, escape acceptance, neutral acceptance, fear of death, and after death concerns. The internal consistency for each of the subscales ranged from 0.64 to 0.88. Intercorrelations between the Gr-DAP-R subscales supported the relative independence of death attitudes dimensions.
CONCLUSIONS: The Gr-DAP-R can be used as a research and clinical tool in assessing death attitudes among Greek nurses.
Purpose: Close relationships can be strained by losses related to independence, autonomy, and separation after diagnosis of severe illness. The perceived quality of their close relationships affects individuals’ psychological adaptation in this context. We explored the level of perceived relatedness and its impact on demoralization and death acceptance. We further examined a possible protective effect of perceived relatedness on the association between tumor stage and death acceptance.
Methods: For this observational study, we consecutively recruited gynecology outpatients and general surgery inpatients at the University Cancer Center Hamburg-Eppendorf and oncological inpatients at the LungenClinic Grosshansdorf, Germany. At baseline, 307 patients (age M = 59.6, 69% female, 69% advanced cancer) participated. At 6- and 12-month (T3) follow-up, 213 and 153 patients responded, respectively. Patients completed self-report questionnaires including a modified version of the Posttraumatic Growth Inventory assessing perceived relatedness, the Life Attitude Profile-Revised assessing death acceptance, the Demoralization Scale, and the Memorial Symptom Assessment Scale assessing symptom burden. We calculated multiple linear regression analyses controlling for demographic and disease-related factors.
Results: Participants reported a stronger perceived relatedness at baseline (M = 3.04, SE = 0.03, possible range 0–4) than at T3 (M = 2.93, SE = 0.04; p = 0.02). Perceived relatedness significantly predicted lower demoralization at T3 but did not moderate the relationship between tumor stage and demoralization. Apart from male gender, none of the predictor or moderator variables had a significant impact on death acceptance at T3.
Conclusions: The strong impact of perceived relatedness on existential distress emphasizes the importance of strengthening interpersonal relationships within psychosocial interventions.
Les représentations associées aux services hospitaliers ont tendance à penser les unités de soins palliatifs comme radicalement différentes des services de réanimation. Toutefois, la réanimation reste un lieu où les patients sont susceptibles de finir leur vie et où les équipes soignantes sont très au fait des prises en charges dites "de confort". La question de la sédation notamment permet de mettre en résonance les pratiques de ces services autour du patient en toute fin de vie et du combat contre sa souffrance.
L'accompagnement en réanimation est une expérience limite, tissée d'incertitudes. Situation étrange que de marcher avec le patient sur un fil, au-dessus des possibles riches de promesses ou d'absences. Qui est-ce que j'accompagne : un patient encore vivant vers la mort ? Un patient presque mort vers la vie ? Ou s'agit-il d'autre chose encore ?
Au-delà des difficultés et exigences inhérentes à la clinique hospitalière lourde, la réanimation implique "un autre monde" propre à l'humain réanimé. Elle convoque une disposition d'esprit, une information relative aux enjeux, conditions, effets et nécessités d'une réalité interne, d'un vécu, impensable pour autrui, paradoxal parce qu'aux antipodes des apparences et du fonctionnement psychique normal, opaque et méconnu même des professionnels, soignants et réanimateurs qui la côtoient au quotidien.
La Loi du 2 février 2016 reconnaît au patient le droit de bénéficier d'une Sédation Profonde et Continue Maintenue Jusqu'au Décès (SPCMJD) associée à une analgésie. Il s'agit de qualifier les signes de souffrance vécus comme insupportables chez une personne gravement malade, dont le pronostic vital est engagé à très court terme. Si la loi promulgue ce droit, nos expériences cliniques démontrent de l'ampleur des difficultés à appréhender ce soin, notamment lorsqu'il s'agit de qualifier le caractère insupportable de la souffrance et de faire face à des subjectivités multiples. Ce sujet amène à un nécessaire recul et à des pratiques réflexives élaborées pour éclairer l'ensemble des partenaires dans l'application de la loi.
La bienveillance est un pillier de l'accompagnement, qui, poussée à l'extrême, peut porter le germe inattendu d'une grande violence. Là où la tentation de l'altruisme est forte doit se poser question de notre désir pour l'Autre. Est-il toujours congruent avec les aspirations du sujet et sur quels fondements s'érige-t-il ? Face aux phénomènes de la vie et de la mort, l'excès de bienveillance s'apparente à une quête d'apaisement personnel : velléité d'aseptiser la mort, maternage impulsif hérité du fantasme de "mère Idéale" seraient symptomatiques du besoin de maîtrise réactionnel à l'angoisse et à l'impuissance. Par ailleurs, la bienveillance poussée à son paroxysme peut être entendue comme l'expression d'un désir inconscient de réparation. Qu'il s'agisse de deuils réels ou symboliques, les équipes de soin se trouvent souvent confrontées à la réminiscence de deuils passés douloureux. Mal cautérisés, ils entrent en résonance avec les situations professionnelles éprouvantes, engendrant des attitudes ambivalentes. Ce désir de réparation témoigne aussi de la culpabilité profonde de certains. Enfin, cet excès de bienveillance peut se lire comme la traduction d'une fragile estime de soi, le surinvestissement du patient visant à une réparation narcissique. L'achernement bienveillant n'est pas sans conséquences : emprise exercée sur le patient, angoisse de régression et d'abandon et sentiment de dette impossible à régler. L'excès de bienfaisance prend sa source dans de multiples motivations, peu conscientisées. Le partage en équipe permet l'analyse de nos mouvements affectifs et la gestion de nos frustrations liées à notre Idéal du Soin Palliatif.
OBJECTIVE: Since February 2016, French Claeys-Leonetti law has recognized patients' right to confront incurable diseases with short-term prognosis and refractory physical or psychological or existential symptoms by requesting continuous deep sedation until death (CDSUD). Determining when psychological or existential distress is refractory and unbearable remains complex and controversial.This review provides a comprehensive thought on CDSUD for advanced incurable patients with refractory psychological and/or existential distress in palliative care settings. It offers guidance on psychiatric or psychological diagnosis for explaining patients' requests for CDSUD.
METHOD: A narrative literature review (2000-2019) was conducted on the MedLine search about the use of palliative sedation in cases of refractory psychological and/or existential distress.
RESULTS: (1) Definitions of "refractory symptom," "refractory psychological distress," and "refractory existential distress" are inconsistent; (2) alternative diagnoses might obscure or be obscured by psycho-existential distress; and (3) criteria on meanings, reasons for requests, decision-making processes, and functions are evolving in practice.
SIGNIFICANCE OF RESULTS: Before implementing CDSUD, palliative healthcare professionals should seek input from psycho-oncologists in palliative care. Mental health professionals should analyze and assess the reasons for psychological and/or existential distress, consider the intentionality processes of requests, and explore alternative diagnoses, such as depressive or adjustment disorders, demoralization syndrome, desire to hasten death, and desire for euthanasia. Therapeutic responses (e.g., pharmacological and psychotherapeutic) should be implemented before deciding that psycho-existential distress is refractory.
This study examined effects of a mindfulness induction on proximal and distal defense responses to mortality salience and negative affect. Three experimental conditions were included: mindfulness, mind-wandering, and worrying. Participants in the mindfulness condition underwent a mindfulness induction at the experiment’s outset, while participants in the other two conditions underwent a mind-wandering or worry induction. Inductions involved following guided audio instructions presented via headphones. All conditions (N = 77) underwent a mortality salience induction after experimental manipulation, involving a written exercise pertaining to one’s death. Results indicated fewer proximal responses in the mindfulness and mind-wandering groups, compared with the worrying group, but no differences in distal responses. Negative affect was lower in the mindfulness group than in the worrying group following mortality salience. Results suggest that mindfulness exercises effectively buffer against negative affect and some responses to mortality salience, although these effects are not different from those of mind-wandering.
Background: End-of-life dreams and visions (ELDVs) can provide both meaning and comfort to individuals nearing death. While research has examined the prevalence and content of ELDVs, little is known on how dreaming at end of life may affect psychological processes.
Objective: This study aimed to explore differences in posttraumatic growth (PTG) between hospice patients who experience ELDVs and hospice patients who do not experience this phenomenon.
Design: This is a multimethod cross-sectional comparison study.
Settings/Subjects: 70 hospice patients (35 with ELDV experiences and 35 without ELDV experiences) were recruited after being admitted to a hospice inpatient unit.
easurements: PTG was assessed using a modified version of the Posttraumatic Growth Inventory (PTGI). Demographic information, ELDV occurrence, and a brief description of ELDVs were also collected.
Results: Significant differences emerged between groups in terms of personal strength (p = 0.012), spiritual change (p = 0.002), and overall PTG (p = 0.019). Patients with ELDV experiences had higher scores on all subscales as well as overall PTG compared to nondreaming patients.
Conclusions: Dreams and visions at the end of life affect PTG of dying individuals in hospice care. Further research should be conducted between groups to examine the effects ELDVs may have on other psychological processes.
This article studies forgiveness and reconciliation (F/R) in patients with cancer. It focuses on the end of life, when family conflicts resurface and unfinished business challenges patients and causes spiritual distress. Forgiveness and reconciliation may intensify patient-family relationships and facilitate peace of mind and peaceful death. Existing forgiveness models and interventions focus on coping in life, yet no study has examined F/R processes until death. Our mixed-method exploratory study hypothesized that F/R processes occur in phases, repeatedly, and are spurred by approaching death. Three interdisciplinary units at a major Swiss hospital observed 50 dying patients with cancer experiencing severe conflicts with relatives, themselves, and/or with fate/God. Participant observation was combined with interpretative phenomenological analysis and descriptive statistical analysis. A semi-structured observation protocol was developed based on a 5-phase model. The protocol included space for notes (emotions, interventions, effects on dying processes). It was assessed by 20 professionals for 1 year. Analysis was supported by international interdisciplinary experts. We found that conflicts were complex and involved relational, biographical, and spiritual layers. In 62% of patients, F/R processes occurred repeatedly. Many patients died after finding F/R (22 within 48 hours). Patients indicated that imminent death, a mediating third party, acceptance, and experiences of hope motivated them to seek F/R. Although deep relationships may support F/R processes, our limited data on near-death experience/spiritual experiences restrict interpretation. Forgiveness and reconciliation processes oscillate between 5 phases: denial, crisis, experience of hope, decision, and finding F/R. Understanding F/R processes, empathy, hope, and a neutral third party may support patients in seeking forgiveness.