OBJECTIVE: Serious illness conversations are complex clinical narratives that remain poorly understood. Natural Language Processing (NLP) offers new approaches for identifying hidden patterns within the lexicon of stories that may reveal insights about the taxonomy of serious illness conversations.
METHODS: We analyzed verbatim transcripts from 354 consultations involving 231 patients and 45 palliative care clinicians from the Palliative Care Communication Research Initiative. We stratified each conversation into deciles of "narrative time" based on word counts. We used standard NLP analyses to examine the frequency and distribution of words and phrases indicating temporal reference, illness terminology, sentiment and modal verbs (indicating possibility/desirability).
RESULTS: Temporal references shifted steadily from talking about the past to talking about the future over deciles of narrative time. Conversations progressed incrementally from "sadder" to "happier" lexicon; reduction in illness terminology accounted substantially for this pattern. We observed the following sequence in peak frequency over narrative time: symptom terms, treatment terms, prognosis terms and modal verbs indicating possibility.
CONCLUSIONS: NLP methods can identify narrative arcs in serious illness conversations.
PRACTICE IMPLICATIONS: Fully automating NLP methods will allow for efficient, large scale and real time measurement of serious illness conversations for research, education and system re-design.
The 41-item Comprehensive Assessment Tool for Cancer Caregivers (CNAT-C) is an English language survey for needs assessment developed and validated in South Korean cancer caregivers. The objective of this study was to validate both the English and a translated Chinese version of the CNAT-C in cancer caregivers in Singapore.
This was a cross-sectional survey where cancer caregivers completed the CNAT-C and World Health Organisation Quality-of-life BREF (WHOQOL-BREF) in English or Chinese. Cronbach's alpha was used to measure internal consistency. Convergent validity was assessed using Pearson correlation coefficients between CNAT-C scores and WHOQOL-BREF domains. For known groups validity, independent samples t-test was used to compare CNAT-C scores based on Karnofsky performance status.
There were 161 cancer caregivers - 80 answered the english version and 81 answered the Chinese version. For the English version, 33.8% were male and the lean age was 46.9 years. For the Chinese version, 27.2% were male and the mean age was 52.6 years. The total CNAT-C score and most domain scores showed good internal consistency, low to moderate convergent validity with WHOQOL-BREF domains and good known groups validity with performance status in both the English and Chinese versions. Domain 1 (health and psychological problems) in the Chinese version did not show convergent validity although there was evidence of known groups validity. Domain 5 (religious/spiritual support) also did not show validity in our study sample.
In summary, there was low to moderate convergent validity with the WHOQOL-BREF for both the English and translated Chinese versions. However, both language versions of CNAT-C showed good internal consistency and good known groups validity according to performance status, and both language versions of the CNAT-C can be used to assess the level of unmet needs for cancer caregivers in the Singapore context.
Discussions about resuscitation orders are often complex and emotional. Additionally, there are different contexts of code status discussions such as routine discussions with parents upon hospital admission who are at low risk of in-hospital arrest versus discussions with patients with advanced illnesses who are highly unlikely to survive an in-hospital arrest. Discussing code status can be challenging during an initial encounter with a patient because clinicians often do not have enough time or information to fully understand the underlying medical situation nor the patient's values. it is our experience that many clinicians struggle to find accurate, concise, and compassionate language when leading these discussions on an initial encounter and skip it entirely or ask euphemistic questions, which fail to educate the patient on the very basics of what is at stake (e.g., asking "Do you want us to do everything?"). This Fast Fact and Fast Fact #365 suggest language for clinicians when having these conversations. These are not meant to be verbatim scripts, but rather examples that clinicians can use for teaching or personal adaption. Additional Fast Facts that address code status discussions include #23, #24, #179, and #292.
BACKGROUND: Approximately half of decedents in Ontario, Canada, receive some palliative care, but little is known about the influence of language on the nature of these services.
OBJECTIVE: To examine differences between English- and French-speaking residents of Ontario in end-of-life care and outcomes (e.g., health care costs and location of death).
DESIGN: A retrospective cohort study using multiple linked databases.
SETTING/SUBJECTS: A population-based cohort of decedents in Ontario (2010–2013) who were living in long-term care institutions (i.e., nursing homes) or receiving home care before death (N = 25,759). Data from two regions with higher representations of Francophones were examined, with the final distribution by primary language being 75% Anglophone, 18% Francophone, and 7% other languages.
RESULTS: Compared with Anglophones, Francophones were more frequent users of long-term care (47.6% vs. 37.1%) and less frequent users of home care (71.3% vs. 76.3%). In adjusted models, the number of days spent in hospital in the last 90 days of life was similar between Anglophones and Francophones, although the odds of dying in hospital were significantly higher among the latter. The mean total health care cost in the last year of life was slightly lower among French ($62,085) compared with English ($63,814) speakers.
CONCLUSIONS: There are statistically significant differences in end-of-life outcomes between linguistic groups in Ontario, namely more institutionalization in long-term care, less home care use and more deaths in-hospital among Francophones (adjusted). Future research is needed to examine the cause of these differences. Strategies to ensure equitable access to quality end-of-life care are required.
BACKGROUND: Palliative surgical procedures are frequently performed to reduce symptoms in patients with advanced cancer, but quality is difficult to measure.
OBJECTIVE: To determine whether natural language processing (NLP) of the electronic health record (EHR) can be used to (1) identify a population of cancer patients receiving palliative gastrostomy and (2) assess documentation of end-of-life process measures in the EHR.
DESIGN/SETTING: Retrospective cohort study of 302 adult cancer patients who received a gastrostomy tube at a single tertiary medical center.
MEASUREMENTS: Sensitivity and specificity of NLP compared to gold standard of manual chart abstraction in identifying a palliative indication for gastrostomy tube placement and documentation of goals of care discussions, code status determination, palliative care referral, and hospice assessment.
RESULTS: Among 302 cancer patients who underwent gastrostomy, 68 (22.5%) were classified by NLP as having a palliative indication for the procedure compared to 71 patients (23.5%) classified by human coders. Human chart abstraction took >2600 times longer than NLP (28 hours vs. 38 seconds). NLP identified the correct patients with 95.8% sensitivity and 97.4% specificity. NLP also identified end-of-life process measures with high sensitivity (85.7%-92.9%,) and specificity (96.7%-98.9%). In the two months leading up to palliative gastrostomy placement, 20.5% of patients had goals of care discussions documented. During the index hospitalization, 67.7% had goals of care discussions documented.
CONCLUSIONS: NLP offers opportunities to identify patients receiving palliative surgical procedures and can rapidly assess established end-of-life process measures with an accuracy approaching that of human coders.
In order to shed light on how emotions surface in language, this article addresses a gap in our empirical knowledge about ‘expressive’ linguistic resources. Expressive resources are classically defined as ‘symptoms’ or ‘indices’ of the speaker’s emotional states at the time of speech, which suggests that they are essentially reflex – i.e. spontaneous and sincere. This article shows how actual expressive resources largely depart from this ideal type, by analyzing a case where they are performed and operate in a frame where sincerity remains largely irrelevant. Based on first-hand data, the study analyzes how expressivity combines with performance in a highly conventionalized prosodic contour used to express compassion in several Aboriginal languages of the Arnhem Land region in Australia. The form, semantics and pragmatics of this contour are described and analysed for the Dalabon (Gunwinyguan) and Kriol language (creole), and the study of how it is used shows that performance can channel elaborate communication around deep emotions such as grief. The article discusses how the performance of this ‘compassionate’ contour contributes to communication strategies that help the speakers deal with grief, and highlights how this performed linguistic tool channels emotional expression and management at the same time.
BACKGROUND: Trust has been identified as a vital value in the nurse-patient relationship. Although increasingly the subject of empirical inquiries, the specific processes used by nurses to foster trust in nurse-patient relationships with older immigrants of non-English speaking backgrounds hospitalised for end-of-life care have not been investigated.
AIMS: To explore and describe the specific processes that nurses use to foster trust and overcome possible cultural mistrust when caring for older immigrants of non-English speaking backgrounds hospitalised for end-of-life care.
RESEARCH DESIGN: A qualitative descriptive approach was used. Twenty-two registered nurses were recruited from four metropolitan health services in Melbourne, Australia. Ethical considerations: Research approval was granted by the Human Research Ethics Committees of the host institution and four participating health services.
FINDINGS: Thematic analysis revealed that fostering trust encompassed the following three commensurate stages: establishing trust, strengthening trust and sustaining trust. Underpinning the successful achievement of these stages was the nurses' moral commitment (reflected in their intentional, conscious and conscientious approach) to fostering trust as an essential ingredient of quality end-of-life care.
DISCUSSION: This study has shown that while professional competencies are important to providing quality end-of-life care to older immigrant patients of non-English speaking backgrounds, it is a nurse's moral commitment to fostering trust that may ultimately lay the foundations for a trusting quality care relationship to be established and sustained.
CONCLUSION: This study has captured the processes used by nurses to foster trust as an essential element of quality end-of-life care in older immigrants. The characteristics of trust and the different factors influencing its expression in diverse cultural contexts are, however, under-researched. Accordingly, gaps remain in the knowledge and understanding of the specific cultural nuances and manifestations of trust across and within different cultures. This is an area that is germane to further cross-cultural and international collaborative scholarly inquiry and research.
The hypothesis that obituary notices will be less direct/less emotional in the language used for females than for males was tested. A total of 703 consecutive obituaries were examined in a local newspaper and instances of whether the person died or passed away was noted for males and females. A 2 (gender) × 2 (died, passed away) Chi-Square analysis supported the hypothesis: X2 (1) = 8.87, p < .01. Thus, males are more likely to die, whereas females are more likely to pass away.
As a human-specific trait, language offers a unique window on human cognition. Grammatical constraints on the ways we speak about events, for instance, have long been thought to reveal the representational formats that our minds impose on the ways that we think about events. In recent research, verbs that name events of death have stood out as key counterexamples to standard theories of the grammatical constraints on possible verbs. The special status of these thanatological verbs raises two important questions: why, given the vast number of verbs in any language, is it that verbs of death hold this special status, and what do they tell us about the restrictions on the representational format for possible verbs? This paper reexamines the evidence coming from verbs of death, confirming that they are counterexamples to standard theories, but that their behaviour suggests a more revealing constraint on our mental representations-that our minds impose strict restrictions on the format of asserted meaning. Thus, the constraints on linguistic representation and the human mind offer a unique perspective on the mental representations of thanatological phenomena.This article is part of the theme issue 'Evolutionary thanatology: impacts of the dead on the living in humans and other animals'.
BACKGROUND: When attempting to share information about comfort-oriented care, many use "palliative," "supportive," and "hospice" care terminology interchangeably, but we lack evidence about the effects of using these different terms.
OBJECTIVES: This study was designed to test whether the use of "palliative," "supportive," or "hospice" terminology can improve the dissemination of information among breast cancer patients-a large and growing oncology population. Design, Setting, and Measurement: This experimental study was conducted at a major U.S. hospital serving a diverse population. Patients visiting a cancer clinic encountered opportunities to learn more about cancer care. They were offered health materials that were described as reporting on "palliative," "supportive," or "hospice" care and the primary outcome was whether a patient decided to select or reject each. As a secondary outcome, the study measured the patient's level of interest in receiving each.
RESULTS: Compared with alternatives, materials labeled as "supportive" care were most likely to be selected and considered valuable (p value <0.01).
CONCLUSIONS: In this study, the terminology used had a large effect and, compared with alternatives, the information labeled as being about "supportive" care was significantly more likely to be selected. If these effects are supported by additional research, there may be low-cost, highly feasible changes in language choice that increase the dissemination of relevant health information.
Lorsqu’une mère accouche dans un pays très éloigné de sa propre culture, puis vit l’expérience douloureuse d’une maladie grave ou de la perte de son bébé, les soignants sont confrontés à des expériences éprouvantes, tant par la gravité de l’événement que par sa survenue dans un pays d’immigration. La souffrance liée au deuil est universelle. Les soignants, dans l’univers technique contemporain qui risque d’être déshumanisant, se doivent de rester présents auprès des femmes et des familles, malgré les différences culturelles et langagières. Il faut savoir que chaque individu par son histoire familiale, par son cheminement personnel, s’inscrit différemment dans sa culture d’origine, et que les positions individuelles sont beaucoup plus variées qu’on ne l’imagine. Ce qu’il faut surtout comprendre, ce sont les difficultés accumulées par une femme qui doit vivre une grossesse puis la maladie ou la perte d’un bébé loin de sa famille, de ses parents, de son pays. Cette expérience peut néanmoins être mobilisatrice des énergies propres au travail de deuil. Les soignants doivent mesurer combien leurs paroles mais aussi leur présence silencieuse sont aptes à accompagner et à soutenir cette énergie.
The purpose of the current study was to examine understanding of end-of-life (EOL) decision-making terminology among family caregivers of African American older adults with dementia. This qualitative descriptive study was part of a larger mixed-methods study from which a subset of caregivers (n = 18) completed interviews. Data were analyzed using descriptive statistics and content analyses guided by methods of qualitative analysis. Caregiver interpretation of EOL decision-making terminology varied between associations before and/or after death. EOL decision making was most often a family decision, based on past experiences, and included reliance on resources such as faith or spirituality and health care providers. Patients and families attach meaning to health care terms that should be aligned with health care providers' understanding of those terms. Results provide insight to improve EOL decision making in this population via tailored interventions for patients, families, and health care providers.
BACKGROUND: A Massive Open Online Course (MOOC) on death and dying was conducted to open the dialogue around death and dying. In one activity, participants were asked to engage with language and to think of alternative words (or euphemisms) that are used to describe death.
AIM: To reflect from a nursing perspective how language enables and sometimes disguises important messages and conversations.
METHODS: Four hundred and seventy one participants provided 3053 euphemisms.
FINDINGS: Euphemisms were varied, with many providing commentary on their purpose and use.
DISCUSSION: As a society we have become quite creative in the use of euphemisms, but need to be mindful of misunderstandings and misinterpretations which can cause embarrassment and distress in clinical situations.
CONCLUSION: This paper describes some of the euphemisms that were provided, examining why they are used and how their use can be easily misconstrued in daily life and in clinical practice.
This article analyzes the writings of Elisabeth Kübler-Ross through the discursive lens of the phrase “dying with dignity.” For her, the phrase meant allowing someone to die comfortably his/her own death. This phrase has to be understood in relationship with the final “stage of acceptance” of her model. Describing this key part of her well-known scientific output, she often used, in the early 1970s, the phrase “dying in peace and dignity.” An evaluation of the evidence suggests that because the concept of dignity was co-opted by the pro-euthanasia movement during this decade, the language of dignity was little by little abandoned by her. In later years, only “peace” survived from her favorite expression. Although this concept of peace remains present to the end in all Kübler-Ross writings, the pro-euthanasia movement has also started to speak the language of peace.
La qualité de la relation médecin-malade est un des éléments essentiels d'une communication constructive pour le patient, en situation palliative particulièrement.
Le médecin doit s'efforcer de lui apporter les informations les plus pertinentes, les plus adaptées à sa situation donc personnalisées, éthiques et sans leurre, sur la vérité de son parcours.
L'utilisation des métaphores, plus précisément propres au patient, doit permettre d'améliorer cette communication, la complicité soigné-soignant et de le faire progresser vers un plus grand confort.
Le débat médiatique à propos de l'euthanasie a resurgi en France depuis quelques mois, avec la publication du rapport Sicard sur la fin de vie. Un médecin spécialisé en douleur et soins palliatifs s'interroge sur l'imprécision - voire l'inadéquation - des termes employés dans ce débat, et sur la confusion qui s'ensuit dans notre société.
Cette étude qualitative utilise des méthodes de recherche-action participative pour identifier les langages approuvés par l'Association des infirmières américaines que les infirmières ont trouvé pertinents pour les soins en fin de vie, et ce, en collaboration avec les patients et les familles. Les termes du langage sélectionnés seront notamment utilisés pour les plans de soins infirmiers.
Titre des articles qui composent ce dossier : - Le don : un concept énigmatique. - On ne donne jamais que la vérité. - Don et sacrifice : un point de vue théologique. - Approches anthropologique et philosophique du don et du contre-don. - Le don et son énigme.
Origine : BDSP. Notice produite par APHPDOC 8D7R0xEE. Diffusion soumise à autorisation