The aim of this cross-sectional study was to examine the association of supernatural beliefs and sense of coherence with death anxiety and death depression in a Romanian sample of cancer patients. We found support for the terror management theory worldview defence hypothesis postulating the presence of a curvilinear relation between death anxiety and supernatural beliefs among cancer patients. Results conformed to an inverted U-shape quadratic regression, indicating that cancer patients who scored moderately on supernatural beliefs were afraid of death the most, while death anxiety was lowest for the extreme atheists and extreme believers in supernatural entities.
Les soignants sont formés à agir et à se situer au sein d'une relation par nature asymétrique. L'auteure s'attache à montrer l'importance d'un aspect laissé dans l'ombre : la possibilité de faire vivre cette relation dans une dynamique de réciprocité. Nous avons généralement l'habitude de considérer la relation de soin dans sa structure asymétrique : d'un côté un soignant agissant, responsable, et de l'autre, un patient, passif, vulnérable.
C'est oublier de considérer toute la complexité de ce qui s'échange et se partage entre soignants et soignés. En privilégiant une mise en mot proche de son expérience d'infirmière en soins palliatifs, l'auteure formule les enjeux éthiques de la réciprocité, liés à cette façon de concevoir la relation dans l'activité du soin et de la vivre effectivement.
La bioéthique est née des progrès médicaux d'une part et de la nécessité de se prémunir contre toute répétition des horreurs pratiquées par les expérimentateurs nazies d'autre part. Cela a conduit à des règles très diversement définies dans les différents pays. La France est sous un régime éthique caractérisé par un dirigisme important et des responsabilités confiées essentiellement aux professionnels.
Dans ce livre, il est proposé d'ouvrir un peu plus le champ de la responsabilisation individuelle, de privilégier les droits du malade et d'accroître le respect de la liberté (encadrée) de chacun. En pratique, cela implique notamment moins de restriction dans la possibilité pour les malades en fin de vie de choisir la modalité de leur mort.
Les soins palliatifs restent une pratique au carrefour de plusieurs approches théoriques. L’approche palliative de l’accompagnement demande des diversités d’orientation en rapport avec la pluralité des sources d’angoisse. Ces angoisses sont à l’origine d’ambivalences, sources de difficultés existentielles. Ce travail analyse l’entretien motivationnel comme une perspective d’approche dans le processus d’accompagnement des patients souffrant de maladies chroniques évolutives afin d’améliorer leur qualité de vie.
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.
L’irruption du cancer, du fait du risque de mort qu’il évoque, confronte souvent dans un premier temps le patient à un enjeu vital, et le diagnostic d’une telle maladie peut provoquer diverses réactions psychologiques. La prise en charge médicale qui fait suite au diagnostic peut assurer un cadre sécurisant et avoir un effet contenant les angoisses, mais les effets secondaires des traitements et, plus tard, les séquelles possibles observées au décours des traitements, constituent d’autres sources de préoccupation pour le sujet concerné et souvent aussi pour ses proches.
Les maladies inflammatoires chroniques intestinales (MICI) sont
encore peu connues du grand public. Invalidantes, elles touchent
essentiellement le tube digestif et se présentent sous deux pathologies : la maladie de Crohn et la rectocolite hémorragique.
Tout d’abord, je souhaite remercier l’ASP fondatrice de son invitation
car il est important de faire témoigner les malades.
Je suis atteint d’une rectocolite hémorragique depuis l’âge de 14 ans
et ai ensuite dû faire face à trois cancers : côlon, rectum, vésicule
biliaire. J’ai été "iléostomisé" et remis en continuité un an après
et « urostomisé » avec deux sondes bilatérales.
J’ai subi des radiothérapies, chimiothérapies. Je vais vous décrire
comment j’ai vécu ma maladie et comment je suis devenu patient
Inadequate communication about serious illness care preferences affects patients, families, health care providers, and health care systems. Many patient and system barriers prevent comprehensive serious illness communication. The purpose of this evidence-based practice project was to provide a structure within a primary care clinic to facilitate conversations with seriously ill individuals about their care preferences that (a) was adaptable to clinic workflow, (b) improved providers’ perception of the care conversation experience, (c) improved documentation of care preferences, and (d) provided a comfortable and helpful experience. The Johns Hopkins Nursing Evidence-Based Practice model and Serious Illness Care Program were used to address provider and system barriers to conversations about care preferences. Program interventions included training providers and staff; identifying patients at risk for high symptom burden and mortality; integrating system interventions; and evaluating outcomes. Providers completed training, after which a 5-week pilot practice change was conducted. Provider perceptions of conversations after implementation were positive. During the pilot, 3 serious illness care conversations were initiated with additional patients prepared for future conversations using an information sheet and introduction to the conversation.
Background: Patients with heart failure (HF) have not been considered as major beneficiaries of advance directives (ADs). We analyzed factors affecting the preferences for the adoption of ADs by patients with HF and their caregivers.
Methods and Results: Seventy-one patient (mean age: 68 years)–caregiver (mean age: 55 years) dyads were enrolled during clinic visits for routine care at a single institution and completed questionnaires during in-person visits. Cohen's kappa coefficients and generalized estimating equation models were used to analyze the data. The agreement on dyadic perspectives for aggressive treatments was poor or fair, whereas agreement relative to hospice care was moderate (k = 0.42, 95% confidence interval = 0.087–0.754). Both patients and caregivers demonstrated poor knowledge of ADs and similar levels of perceived benefits and barriers to advance care planning. However, the caregivers had more positive attitudes toward ADs than patients. Patients and caregivers who were older and/or males had greater odds of preferring aggressive treatments and/or hospice care. Further, those with depressive symptoms had lower odds of preferring hospice care.
Conclusion: The dyadic agreement was moderately high only for hospice care preferences. Both patients and caregivers demonstrated knowledge of shortfalls regarding ADs. Timely AD discussions could increase dyadic agreement and enhance informed and shared decision-making regarding medical care.
BACKGROUND: There is evidence indicating that family sense of coherence predicts quality of family life and promotes family well-being. In families living with the palliative phase of cancer, low hope, anxiety and symptoms of depression are common in both persons with cancer and their family members.
AIM: To determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression, respectively, in persons with cancer in the palliative phase and their family members.
DESIGN: An observational, cross-sectional, multicentre study was conducted. Nested linear regression analyses were performed in two blocks to determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression.
SETTING/PARTICIPANTS: Persons with cancer (n = 179) and their family members (n = 165) were recruited from two oncology clinics and two palliative centres in three regions in Sweden.
RESULTS: The main findings showed that family sense of coherence was significantly and independently associated with hope, anxiety and symptoms of depression. Stronger family sense of coherence was associated with higher hope and lower anxiety and symptoms of depression levels in both persons with cancer and their family members.
CONCLUSION: Health care providers should strive to identify families with weak family sense of coherence, because of its associations with hope, anxiety and symptoms of depression, in order to offer them professional support and thereby achieve increased well-being during the palliative phase of cancer. Future studies should expand our knowledge of family sense of coherence and how to identify families at risk of lower levels of well-being.
BACKGROUND: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP.
AIM: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs.
DESIGN: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3).
PARTICIPANTS: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States.
RESULTS: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3.
CONCLUSIONS: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted. The study is registered at ClinicalTrials.gov with identifier NCT02367508 ( https://clinicaltrials.gov/ct2/show/NCT02367508 ).
Background: There is a growing preference for the use of marijuana for medical purposes, despite limited evidence regarding its benefits and potential safety risks. Legalization status may play a role in the attitudes and preferences toward medical marijuana (MM).
Objectives: The attitudes and beliefs of cancer patients in a legalized (Arizona) versus nonlegalized state (Texas) regarding medical and recreational legalization and medical usefulness of marijuana were compared.
Settings/Subjects: Two hundred adult cancer patients were enrolled from outpatient Palliative Care centers at Banner MD Anderson Cancer Center in Gilbert, AZ (n = 100) and The University of Texas MD Anderson Cancer Center in Houston, TX (n = 100).
Design and Measurements: Adult cancer patients seen by the Palliative Care teams in the outpatient centers were evaluated. Various physical and psychosocial assessments were conducted, including a survey of attitudes and beliefs toward marijuana.
Results: The majority of individuals support legalization of marijuana for medical use (Arizona 92% [85–97%] vs. Texas 90% [82–95%]; p = 0.81) and belief in its medical usefulness (Arizona 97% [92–99%] vs. Texas 93% [86–97%]; p = 0.33) in both states. Overall, 181 (91%) patients supported legalization for medical purposes whereas 80 (40%) supported it for recreational purposes (p < 0.0001). Patients preferred marijuana over current standard treatments for anxiety (60% [51–68%]; p = 0.003). Patients found to favor legalizing MM were younger (p = 0.027), had worse fatigue (p = 0.015), appetite (p = 0.004), anxiety (p = 0.017), and were Cut Down, Annoyed, Guilty, and Eye Opener-Adapted to Include Drugs (CAGE-AID) positive for alcohol/drugs (p < 0.0001).
Conclusion: Cancer patients from both legalized and nonlegalized states supported legalization of marijuana for medical purposes and believed in its medical use. The support for legalization for medical use was significantly higher than for recreational use in both states.
GPs should do more to help patients plan for their care and treatment because of a lack of awareness about advance decisions, says a report from the charity Compassion in Dying.
Advance decisions are documents that allow people to state in what circumstances they would want to refuse future treatment if they become seriously ill and cannot make or convey such decisions. Formerly known as “living wills,” advance decisions gained legal status in 2005.
BACKGROUND: Early and integrated specialized palliative care is often recommended but has still only been investigated in relatively few randomized clinical trials.
OBJECTIVE: To investigate the effect of early specialized palliative care plus standard care versus standard care on the explorative outcomes in the Danish Palliative Care Trial (DanPaCT).
METHODS: We conducted a randomized multicentre, parallel-group clinical trial. Consecutive patients with metastatic cancer were included if they had symptoms or problems that exceeded a predefined threshold according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Outcomes were estimated as the differences between the intervention and the control groups in the change from baseline to the weighted mean of the 3- and 8-week follow-ups measured as areas under the curve.
RESULTS: In total, 145 patients were randomized to early specialized palliative care plus standard care versus 152 to standard care only. Early specialized palliative care had no significant effect on any of the symptoms or problems. Of the 21 items addressing satisfaction, specialized palliative care improved the item ‘overall satisfaction with the help received from the health care system’ with 9 points (95% confidence interval 3.8 to 14.2, p = 0.0006) and three other items (all p < 0.05).
CONCLUSION: In line with the analyses of the primary and secondary outcomes in DanPaCT, we did not find that specialized palliative care, as provided in DanPaCT, affected symptoms and problems. However, patients in the intervention group seemed more satisfied with the health care received than those in the standard care group.
TRIAL REGISTRATION: NCT01348048.
CONTEXT: There is no clear definition of what constitutes a good death or its features. Patients, caregivers, physicians and relatives have different notions of a good death. Discussions have been driven by academic perspectives, with little research available on the patients' perspectives.
OBJECTIVES: To explore the notions of a good death from the patients' perspective.
METHODS: A systematic literature search was conducted up to November 2017 using Cinahl®, MEDLINE®, EMBASE®, and PsychoINFO® databases. Search terms used were 'quality of death', 'good death', 'quality of dying' or 'good dying'. Scientific empirical studies that included the exploration of the notion of a good death in adult patients with advanced and life-threatening diseases were selected separately by 2 researchers. Hawker´s et al. criteria were used to assess the quality of articles. The analysis was conducted using a thematic analysis.
RESULTS: 2652 titles were identified; after elimination of duplicates, screening and final selection, 29 relevant publications remained for analysis. Sample populations included patients with terminal diseases (AIDS, cardiovascular disease, and cancer). Core elements for a "good death" included control of pain and symptoms, clear decision-making, feeling of closure, being seen and perceived as a person, preparation for death, and being still able to give something to others; while other factors such as culture, financial issues, religion, disease, age, and life circumstances were found to shape the concept across groups. Studies agree on the individuality of death and dying while revealing a diverse set of preferences, regarding not only particular attributes but also specific ways in which they contribute to a good death.
CONCLUSIONS: Although sharing common core elements, patient´s notions of good death are individual, unique and different. They are dynamic in nature, fluctuating within particular groups and during the actual process of dying. Formal and informal caregivers should carefully follow-up and respect the patient´s individual concepts and preferences regarding death and dying, while attending to shared core elements, to better adjust clinical decisions.
OBJECTIVE: The EORTC QOL Group has recently completed the cross-cultural development and validation of a standalone measure of spiritual well-being (SWB) for cancer patients receiving palliative care: the EORTC QLQ-SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global-SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer-adjusting for other socio-demographic, clinical and function variables, including WHO performance status and EORTC QLQ-C15-PAL emotional and physical function scores.
METHODS: Cross-sectional data from the validation study were used, and chi-square, independent t tests, Mann-Whitney U tests and multiple regression analyses applied.
RESULTS: The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ-SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global-SWB. Older age was positively associated with better Relationship with Self.
CONCLUSION: The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients' spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.
Aim: Patients with cancer have varied preferences for involvement in decision-making. We sought older adults' preferred and perceived roles in decision-making about palliative chemotherapy; priorities; and information received and desired.
Methods: Patients =65y who had made a decision about palliative chemotherapy with an oncologist completed a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale. Wilcoxon rank-sum tests evaluated associations with preferred role. Factors important in decision-making were rated and ranked, and receipt of, and desire for information was described.
Results: Characteristics of the 179 respondents: median age 74y, male (64%), having chemotherapy (83%), vulnerable (Vulnerable Elders Survey-13 score = 3) (52%). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36% and matched the preferred role for 63% of patients. Associated with preference for an active role: being single/widowed (p = .004, OR = 1.49), having declined chemotherapy (p = .02, OR = 2.00). Ranked most important (n = 159) were “doing everything possible” (30%), “my doctor's recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy. Fewer had received quantitative prognostic information (49%) than desired this information (67%).
Conclusion: Older adults exhibited a range of preferences for involvement in decision-making about palliative chemotherapy. Oncologists should seek patients' decision-making preferences, priorities, and information needs when discussing palliative chemotherapy.
Background: Cancer affects millions of individuals globally, with a mortality rate of over eight million people annually. Although palliative care is often provided outside of specialist services, many people require, at some point in their illness journey, support from specialist palliative care services, for example, those provided in hospice settings. This transition can be a time of uncertainty and fear, and there is a need for effective interventions to meet the psychological and supportive care needs of people with cancer that cannot be cured. Whilst Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive.
Method: This mixed-methods study uses a single-case experimental design with embedded qualitative interviews to pilot test a novel intervention for this patient group. Between 14 and 20 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills (openness, awareness and engagement) as a way to deal effectively with challenges of transition into specialist palliative care services. Outcome measures include cancer-specific quality of life (primary outcome) and distress (secondary outcome), which are assessed alongside measures of psychological flexibility. Daily diary outcome assessments will be taken for key measures, alongside more detailed weekly self-report, through baseline, intervention and 1-month follow-up phases. After follow-up, participants will be invited to take part in a qualitative interview to understand their experience of taking part and acceptability and perceived effectiveness of the intervention and its components.
Discussion: This study is the first investigation of using ACT with terminally ill patients at the beginning of their transition into palliative treatment. Using in-depth single-case approaches, we will refine and manualise intervention content by the close of the study for use in follow-up research trials. Our long-term goal is then to test the intervention as delivered by non-psychologist specialist palliative care practitioners thus broadening the potential relevance of the approach.
Trial registration: Open Science Framework, 46033. Registered 19 April 2018.
Les personnes vivant avec le VIH sont considérées comme « âgées » dès l’âge de 50 ans en raison du vieillissement physique prématuré qu’elles subissent. Compte tenu de l’âgisme qui prévaut dans les sociétés occidentales, on peut se demander comment les personnes vivant avec le VIH de 50 ans et plus (PVVIH50+) perçoivent leur vieillissement physique. S’appuyant sur des entrevues réalisées avec 38 PVVIH50+, cet article se propose d’explorer leur expérience du vieillissement à travers trois dimensions, à savoir le vieillissement physique, le sentiment de vieillir et le rapport au vieillissement. L’analyse des données révèle que le vieillissement revêt à la fois un caractère négatif et positif pour les PVVIH50+. Si, comme la population générale, elles tentent de s’en distancier et peinent parfois à l’accepter, le parcours relié au VIH peut en revanche teinter le vieillissement d’une valeur positive, puisque vieillir signifie être encore en vie.
Although recognized as best practice, regular integration of shared decision-making (SDM) approaches between patients and oncologists remains an elusive goal. It is clear that usable, feasible, and practical tools are needed to drive increased SDM in oncology. To address this goal, we convened a multidisciplinary collaborative inclusive of experts across the health-care delivery ecosystem to identify key principles in designing and testing processes to promote SDM in routine oncology practice. In this commentary, we describe 3 best practices for addressing challenges associated with implementing SDM that emerged from a multidisciplinary collaborative: (1) engagement of diverse stakeholders who have interest in SDM, (2) development of the necessary roadmap and consideration of the infrastructure needed for engendring patient engagement in decision-making. We believe these 3 principles are critical to the success of creating SDM tools to be utilized both within and outside of clinical practice. We are optimistic that shared use across settings will support adoption of this tool and overcome barriers to implementing SDM within busy clinical workflows. Ultimately, we hope that this work will offer new perspectives on what is important to patients and provide an important impetus for leveraging patient preferences and values in decision-making.