Unclear communication of inauspicious prognoses may disorientate both patients and their relatives, drastically jeopardizing the planning of palliative care. This paper considers the issue of truth-telling in the communicative problems of nurses and students of nursing with terminally ill patients. The fundamental objective is the analysis of the difficulties related to the lack of truth-telling and how it might impact their professional and personal lives. A qualitative study was realized, involving 47 participants, both nurses (25) and nursing students (22), working in palliative care units or in associations of volunteers for the assistance of oncological patients. The exploration was focused on the way they relate to patients who are not aware of their real health conditions and their consequences. Particular attention was paid to their opinions concerning what could be done in order to manage such problematic situations in the near future.
BACKGROUND: While prognostic information is considered important for treatment decision-making, physicians struggle to communicate prognosis to advanced cancer patients. This systematic review aimed to offer up-to-date, evidence-based guidance on prognostic communication in palliative oncology.
METHODS: PubMed and PsycInfo were searched until September 2019 for literature on the association between prognostic disclosure (strategies) and patient outcomes in palliative cancer care, and its moderators. Methodological quality was reported.
RESULTS: Eighteen studies were included. Concerning prognostic disclosure, results revealed a positive association with patients' prognostic awareness. Findings showed no or positive associations between prognostic disclosure and the physician-patient relationship or the discussion of care preferences. Evidence for an association with the documentation of care preferences or physical outcomes was lacking. Findings on the emotional consequences of prognostic disclosure were multifaceted. Concerning disclosure strategies, affective communication seemingly reduced patients' physiological arousal and improved perceived physician's support. Affective and explicit communication showed no or beneficial effects on patients' psychological well-being and satisfaction. Communicating multiple survival scenarios improved prognostic understanding. Physicians displaying expertise, positivity and collaboration fostered hope. Evidence on demographic, clinical and personality factors moderating the effect of prognostic communication was weak.
CONCLUSION: If preferred by patients, physicians could disclose prognosis using sensible strategies. The combination of explicit and affective communication, multiple survival scenarios and expert, positive, collaborative behaviour likely benefits most patients. Still, more evidence is needed, and tailoring communication to individual patients is warranted.
IMPLICATIONS: Future research should examine the effect of prognostic communication on psychological well-being over time and treatment decision-making, and focus on individualising care.
Communicating a terminal prognosis is challenging for patients, families and healthcare professionals. However, positive effects have been reported when children are told about their diagnosis and prognosis, including fewer symptoms of anxiety and depression and enhanced adherence to treatment. When research about prognostic communication was first published in the 1950s and 1960s, it recommended protecting children from bad news. By the late 1960s, a more open approach was recommended and by the late 1980s the advice was to always tell children. There has been a growing awareness of the complexity of prognostic disclosure and the need to balance often competing factors, such as hope and patient and family considerations, on a case-to-case basis.
BACKGROUND: Medicine has undergone substantial changes in the way medical dilemmas are being dealt with. Here we explore the attitude of Israeli physicians to two debatable dilemmas: disclosing the full truth to patients about a poor medical prognosis, and assisting terminally ill patients in ending their lives.
METHODS: Attitudes towards medico-ethical dilemmas were examined through a nationwide online survey conducted among members of the Israeli Medical Association, yielding 2926 responses.
RESULTS: Close to 60% of the respondents supported doctor-assisted death, while one third rejected it. Half of the respondents opposed disclosure of the full truth about a poor medical prognosis, and the others supported it. Support for truth-telling was higher among younger physicians, and support for doctor-assisted death was higher among females and among physicians practicing in hospitals. One quarter of respondents supported both truth-telling and assisted death, thereby exhibiting respect for patients' autonomy. This approach characterizes younger doctors and is less frequent among general practitioners. Another quarter of the respondents rejected truth-telling, yet supported assisted death, thereby manifesting compassionate pragmatism. This was associated with medical education, being more frequent among doctors educated in Israel, than those educated abroad. All this suggests that both personal attributes and professional experience affect attitudes of physicians to ethical questions.
CONCLUSIONS: Examination of attitudes to two debatable medical dilemmas allowed portrayal of the multi-faceted medico-ethical scene in Israel. Moreover, this study, demonstrates that one can probe the ethical atmosphere of a given medical community, at various time points by using a few carefully selected questions.
CONTEXT: Women with metastatic breast cancer often receive many lines of palliative chemotherapy, which might be beneficial but also harmful. Still, little is known about the patients' perception of the patient-doctor communication regarding late lines of non-curative treatment.
OBJECTIVES: Our aim was to explore breast cancer patients' preferences and perceptions of patient-doctor communication regarding continuous late lines of palliative chemotherapy.
PATIENTS AND METHODS: A qualitative study with semi-guided face-to-face interviews with 20 women, 40-80 years old, on at least their second line of palliative chemotherapy (2nd-8th line). We used a qualitative conventional content analysis .
RESULTS: All women knew they had incurable breast cancer but expressed hope for cure. Patients' definition of a good compassionate doctor was one who gives positive news and leaves room for hope. Ongoing chemotherapy, positive news from the doctors and support from relatives encouraged hope. The women often expressed they accepted chemotherapy to please their doctor and relatives. The informants appreciated the doctor to be honest, but within positive limits. Over time they stopped asking questions afraid of getting bad news, and left more and more treatment decisions to the doctor.
CONCLUSIONS: The women's preferences for truth vs. hope in patient-doctor communication changed over time, which increase the risk for continuous late lines of palliative chemotherapy by common collusion. Doctors need to individualise information, help patients make sense of their life and allow hope to endure without further chemotherapy.
During an initial palliative care assessment, a dying man discloses that he had killed several people whilst a young man. The junior doctor, to whom he revealed his story, consulted with senior palliative care colleagues. It was agreed that legal advice would be sought on the issue of breaching the man's confidentiality. Two legal opinions conflicted with each other. A decision was made by the clinical team not to inform the police. In this article the junior doctor, the palliative medicine specialist, a medical ethicist, and a lawyer consider the case from their various perspectives.
BACKGROUND:: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life.
OBJECTIVE:: The objective was to describe family caregivers' attitudes toward death, hospice, and truth disclosure.
RESEARCH DESIGN:: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at a hospice center from April to August 2017.
PARTICIPANTS:: 140 primary family caregivers of elders with terminal cancer participated the study.
RESEARCH CONTEXT:: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers' inhibitions about disclosing information to cancer patients have not yet been the objects of research in China.
ETHICAL CONSIDERATIONS:: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China.
FINDINGS:: A questionnaire survey collected information on family caregivers' background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers' death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer.
DISCUSSION:: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers' attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure.
CONCLUSION: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers' lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers.
Comme en d'autres lieux, nous cherchons en soins palliatifs à prendre en compte le malade dans sa globalité. Aussi voulons-nous le considérer comme un sujet porteur d'une parole et d'un désir, et non comme un objet de soins.
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Lorsqu’un adolescent sent ou pense qu’il risque de mourir, il a besoin des autres, d’être en lien, de se rapprocher de ceux qui l’aiment pour lutter contre l’inéluctable sentiment de solitude et d’angoisse de séparation. Il a aussi besoin d’une personne avec qui parler de sa mort. En nous mettant à son écoute et en l’aidant à formuler ses questions, qu’elles soient pleinement élaborées ou qu’elles se cherchent, nous l’aidons à dire, à penser, à ressentir, à verbaliser ses sensations, ses sentiments ou ses émotions. Il peut nous être difficile d’entendre ses tristesses, ses angoisses, ses colères, ses impuissances, son sentiment d’injustice… Notre rôle est de l’accompagner dans son cheminement, même lorsque nous n’avons pas de réponse à lui apporter, même lorsque nous nous sentons impuissants, que nous ne parvenons pas à le rassurer ou que nous avons envie de fuir. Ce qui est important, c’est que nous soyons là afin de recueillir, et si possible, de contenir ses affects négatifs et l’aider à réaliser qu’ils ne le définissent pas. Cela lui permettra alors d’entrer dans une sorte d’acceptation du destin.
CONTEXT: Advance directive laws have influences on ethical dilemmas encountered by physicians caring for terminal cancer patients.
OBJECTIVES: To identify the prevailing ethical dilemmas among terminal care physicians fifteen years after the Natural Death Act was enacted in Taiwan.
METHODS: This study is a cross-sectional survey from April 2014 to February 2015 using the clustering sampling method and a well-structured questionnaire. Targeted participants included physicians at oncology and related wards or palliative care units where terminal cancer care may be provided in Taiwan.
RESULTS: Among the 500 physicians surveyed, 383 responded (response rate 76.6%) and 346 valid questionnaires were included in the final analysis (effective response rate 69.2%). The most frequently identified ethical dilemmas was "place of care," followed by "use of antimicrobial agents" and "artificial nutrition and hydration." The dilemma of "truth-telling," which ranked first in the 2005-2006 survey, now ranked at the 4th place. Stepwise logistic regression analysis revealed that female gender and knowledge of palliative care were negatively correlated with the extent of dilemmas regarding issues of "life and death.
CONCLUSION: The prevailing ethical dilemmas has changed in Taiwan 15 years after the enactment of the Natural Death Act, supporting that some previous strategies had worked. Our results suggest that education on the core values of palliative care, improvement of community-based hospice care program, and creating treatment guidelines with prognostication may resolve the current dilemmas. This type of survey should be adapted by individual countries to guide policy decisions on end-of-life care.
Entre 1976 et 1983, la dictature militaire argentine fait disparaître 30 000 opposants. Ce crime contre l’humanité – reconnu comme tel depuis 2010 – est encore aggravé par les atteintes aux droits des enfants : 500 bébés sont « appropriés » par les militaires et leurs complices. Leurs identités sont effacées, de nouvelles filiations fictives sont créées. Lorsque tombe la dictature en 1983, il est devenu évident que les adultes disparus qui n’ont pas été libérés des camps ont tous été assassinés. Leur disparition est une mort qui ne dit pas son nom, une mort en suspens. Les enfants, en revanche, restent des disparus vivants. Leur mort n’est pas en suspens. Leur vie, si. Leur vie est en suspens, et reste inextricablement liée, dans le réel comme dans le symbolique, à la mort de leurs parents. Je propose de me pencher sur l’espace-temps paradoxal que sont les « limbes du social » où sont confinés ces disparus. En les comprenant comme autant de « noeuds » de l’intime et du collectif, qui continuent de blesser, au présent, l’ensemble de la culture, nous interrogeons la possibilité de sortir de l’impasse symbolique – qui très vite devient une impasse politique. Nous défendons une éthique des vérités multiples, pour éclairer la nébuleuse de l’impunité.
Background: Clinical studies, with a proper scientific design, on the impact of disclosing a prognosis on a patient's psychological or physical conditions are rare. We investigated the effect of patient awareness of terminal status on survival and quality of life (QoL) in a palliative care setting.
Methods: This is a prospective cohort study of patients with terminal cancer. Patients with cancer at a palliative care unit were enrolled consecutively. The patients' awareness of their terminal status was determined using a semistructured interview. Sociodemographic and clinical characteristics, including Eastern Cooperative Oncology Group performance status, depressed mood, and QoL, were investigated. To determine the independent effects of awareness of illness on survival and QoL, multivariate Cox proportional-hazards regression and multivariate linear regression were used, respectively.
Results: For the 262 cases analyzed, the median survival time (interquartile range) was 28.5 (15.8-55.3) days, and 76 (29.0%) patients were unaware of their prognosis. Patients who were aware survived for a shorter period than did those who were unaware (HR, 1.44; 95% CI, 1.07-1.93, p = 0.015) after adjusting for clinical variables including physical status and depression. Also, patients who were aware reported lower subjective QoL compared with patients who were unaware in a multivariate linear regression analysis (B, -0.10; 95% CI, -0.17 to -0.03, p = 0.008).
Conclusions: Awareness of prognosis may negatively impact survival and QoL in terminally ill cancer patients. Therefore, the patient's preference for and individual susceptibility to receiving such information should be assessed carefully before disclosure.
Y a-t-il concept plus consensuel que celui des soins palliatifs autour de la fin de vie ?... Accompagnement, prendre soin, écoute, douceur, ... Rares sont ceux qui contestent la pertinence de cette approche, même dans les rangs des défenseurs de l'euthanasie. Chacun reconnaît le bien-fondé de la dimension altruiste et humaniste de ces soins pour qui souffre d'une maladie grave à pronostic létal. Chacun souhaite pouvoir recourir pour les siens, au moment opportun, à cette avancée de la médecine qui n'améliore pas la durée de vie mais la rend plus confortable.
Le moment opportun... c'est...
Quand la médecine aura jeté dans la bataille tous ses moyens (et Dieu sait s'ils sont nombreux...) pour me sortir de ce mauvais pas...
Quand les médecins, dont la renommée grandit sans cesse, auront prolongé davantage la maladie de mon proche...
Quand la thérapeutique que je prodigue à mon patient ne sera plus efficace de façon certaine, et, dans le cas présent, il y a encore une petite chance pour que....
Les soins palliatifs, c'est pour plus tard.
Les soins palliatifs, c'est pour les autres.
Ce travail décrit une démarche de soins palliatifs conduite en soutien à une femme dans une perspective de psychologie clinique. Cette femme, séropositive au VIH, a assisté à la mort de ses deux enfants adolescents.