Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.
INTRODUCTION: Patients with haematological malignancies may not be receiving appropriate referrals to palliative care and continuing to have treatments in the end stages of their disease. This systematic review of qualitative research aimed to synthesise healthcare professionals' (HCPs) views and experiences of palliative care for adult patients with a haematologic malignancy.
METHODS: A systematic search strategy was undertaken across eight databases. Thomas and Harden's approach to thematic analysis guided synthesis on the seventeen included studies. GRADE-GRADEQual guided assessment of confidence in the synthesised findings.
RESULTS: Three analytic themes were identified: (a) "Maybe we can pull another 'rabbit out of the hat'," represents doctors' therapeutic optimism, (b) "To tell or not to tell?" explores doctors' decision-making around introducing palliative care, and (c) "Hospice, home or hospital?" describes HCPs concerns about challenges faced by haematology patients at end of life in terms of transfusion support and risk of catastrophic bleeds.
CONCLUSION: Haematologists value the importance of integrated palliative care but prefer the term "supportive care." Early integration of supportive care alongside active curative treatment should be the model of choice in haematology settings in order to achieve the best outcomes and improved quality of life.
To date, there are no specific figures on the language-related characteristics of families receiving pediatric palliative care. This study aims to gain insights into the languages spoken by parents, their local language skills and the consistency of professional assessments on these aspects. Using an adapted version of the "Common European Framework of Reference for Languages", the languages and local language skills of parents whose children were admitted to an inpatient pediatric palliative care facility (N = 114) were assessed by (a) medical staff and (b) psychosocial staff. Nearly half of the families did not speak the local language as their mother tongue. The most frequently spoken language was Turkish. Overall, the medical staff attributed better language skills to parents than the psychosocial staff did. According to them, only 27.0% of mothers and 38.5% of fathers spoke the local language at a high level while 37.8% of mothers and 34.6% of fathers had no or rudimentary language skills. The results provide important information on which languages pediatric palliative care practitioners must be prepared for. They sensitize to the fact that even within an institution there can be discrepancies between the language assessments of different professions.
CONTEXT: Language barriers contribute significantly to disparities in end-of-life (EOL) care. However, the mechanisms by which these barriers impact hospice care remains under-examined.
OBJECTIVES: To gain a nuanced understanding of how language barriers and interpretation contribute to disparities in hospice enrollment and hospice care for patients with limited English proficiency (LEP).
METHODS: Qualitative, individual interviews were conducted with a variety of stakeholders regarding barriers to quality EOL care in diverse patient populations. Interviews were audio-recorded and transcribed verbatim. Data was coded using NVivo11. Three researchers analyzed all data related to language barriers, first individually, then in group meetings, using a grounded theory approach, until they reached consensus regarding themes. IRB approval was obtained.
RESULTS: 22 participants included 6 nurses/CNAs, 5 physicians, 3 administrators, 3 social workers, 3 patient caregivers, and 2 chaplains, self-identifying from a variety of racial/ethnic backgrounds. Three themes emerged regarding language barriers: (1) structural barriers inhibit access to interpreters; (2) variability in accuracy of translation of EOL concepts exacerbates language barriers; (3) interpreters' style and manner influence communication efficacy during complex conversations about prognosis, goals of care (GOC), and hospice. Our theoretical model derived from the data suggests that theme 1 is foundational and common to other medical settings. However, theme 2 and particularly theme 3 appear especially critical for hospice enrollment and care.
CONCLUSIONS: Language barriers present unique challenges in hospice care due to the nuance and compassion required for delicate GOC and EOL conversations. Reducing disparities requires addressing each level of this multi-layered barrier.
Informed consent forms have been useful in clinical practice and they constitute a part of the shared decision making in the informed consent process. They provide information to patients about clinical procedures and techniques. They also act as a remainder of the information discussed after the medical interview. Sometimes these documents are not readable to everybody. Belgian law specifies that all information that patients receive has to be proportionate verbally, but written information is also handled. The present research analyzes the readability of the Flemish informed consent forms located in the webs of all General Hospitals using a simple random sample of 75 informed consent forms., By using the Douma tool, which bases its analysis in the length of words and sentences, the readability mean of the sample was 46, level “Difficult”. The 59% of them had a difficult level. The 11% were normal. It is a fact, then, that the 59% of the informed consent forms evaluated in this study are not suitable for everybody in Flanders, especially those people with low literacy. There were some researches made in other countries that agreed with these results. Written clinical information was poorly written so the informed consent forms were not working helping patients to recall information nor helping patients to become a part in the shared decision making about their health. The use of readability formulas represented a simple way to discriminate those informed consent forms that had normal readability scores from those that should be adapted.
BACKGROUND: Hispanics often have disparities at the end of life. They are more likely to die full code and less likely to have discussions regarding prognosis and do not resuscitate (DNR)/do not intubate (DNI), despite studies showing Hispanic values comfort over the extension of life. Barriers to patient-centered care include language,socioeconomic status and health literacy.
CONTEXT: We evaluated the impact of palliative care (PC) consults on the change of code status and hospice referrals, comparing seriously ill Hispanic and non-Hispanic white patients.
METHOD: A retrospective cohort study of all white and Hispanic patients referred to the PC service of a county hospital from 2006 to 2012. We evaluated ethnicity, language, code status at admission and after PC consult, and hospice discharge. Chi-squared tests were used to analyze characteristics among three groups: non-Hispanic white, English-speaking Hispanic, and Spanish-speaking Hispanic patients.
RESULTS: Of 925 patients, 511 (55%) were non-Hispanic white, 208 (23%) were English-speaking Hispanic, and 206 (22%) were Spanish-speaking Hispanic patients. On admission, there was no statistically significant difference in code status among the three groups (57%, 64%, and 59% were full code, respectively, p = 0.5). After PC consults, Spanish-speaking Hispanic patients were more likely to change their code status to DNR/DNI when compared with non-Hispanic white and English-speaking Hispanic patients (44% vs. 32% vs. 28%, p = 0.05). Spanish-speaking Hispanic patients were more likely to be discharged to hospice when compared with English-speaking Hispanics and non-Hispanic whites (33%, 29%, and 23%, respectively, p = 0.04).
SIGNIFICANCE OF RESULTS: Spanish-speaking Hispanic patients were more likely to change from full code to DNR/DNI compared with non-Hispanic white and English-speaking Hispanic patients, despite similar code status preferences on admission. They were also more likely to be discharged to hospice. PC consults may play an important role in helping patients to align their care with their values and may prevent unwanted aggressive interventions at the end of life.
Objective: To describe the landscape of digital resources available for grief and bereavement, and to explore cultural variations through the analysis of patterns in three languages with a multinational repartition (English, French and Spanish).
Methods: For each language, websites were collected through a systematized approach and classified according to their category (governmental, health, educational, social media, conventional media, spiritual), their country of origin, and the type of support they offered (practical support, services, peer support, informational support, resources).
Results: A total of 2587 websites (English: 1003; French 678; Spanish: 906) were analyzed. Cultural variations were observed both for the websites’ categories and the types of support. Half of the websites presented at least one type of support, informational support being the most prevalent, followed by practical support. English websites presented significantly more support than Spanish websites, with French websites in between.
Practice implications: By using an extensive survey, our results allow for a general mapping of online websites that is comparable across languages, but also unveil digital dynamics unknown to date. These results further the multicultural understanding of digital support for grief and bereavement, propose an innovative and operational typology for online support and raise awareness of the current support landscape.
BACKGROUND: The significance of metaphors for the experience of cancer has been the topic of extensive previous research, with "Battle" and "Journey" metaphors standing out as key. Adaptation to the patient's use of metaphor is generally believed to be an important aspect of person-centered care, especially in palliative care. The aim of this study was to investigate the use of metaphors in blogs written in Swedish by people living with advanced cancer and explore possible patterns associated with individuals, age and gender.
METHODS: The study is based on a dataset totaling 2,602,479 words produced some time during the period 2007-2016 by 27 individuals diagnosed with advanced cancer. Both qualitative and quantitative procedures were used, and the findings are represented as raw frequencies as well as normalized frequencies per 10,000 words. Our general approach was exploratory and descriptive. The Mann-Whitney U test was used to analyze statistical significance.
RESULTS: Our results confirm the strong foothold of "Journey" and "Battle" metaphors. "Imprisonment" and "Burden" metaphors were also used by the majority of the individuals. The propensity to use metaphors when describing the cancer experience was found to differ extensively across the individuals. However, individuals were not found to opt for one conceptualization over the other but tended to draw on several different metaphor domains when conceptualizing their experience. Socio-demographic factors such as age or gender were not found to be strong predictors of metaphor choice in this limited study.
CONCLUSIONS: Using a range of different metaphors allows individuals with advanced cancer to highlight different aspects of their experience. The presence of metaphors associated with "Journey", "Battle", "Imprisonment" and "Burden" across individuals could be explained by the fact that the bloggers are part of a culturally consistent cohort, despite variations in age, sex and cancer form. Awareness of metaphors commonly used by patients can enhance health professionals' capacity to identify metaphorical patterns and develop a common language grounded in the patients' own metaphor use, which is an important requisite for person-centered palliative care.
Face à la masse de documents disponibles, l’utilisateur peut vite se sentir perdu lorsqu’il veut trouver de l’information pertinente. Malgré des moteurs de recherche de plus en plus performants, il est nécessaire de recourir à des outils spécialisés comme les thésaurus afin de gagner en temps et en pertinence. Nous présentons dans cet article comment sont construits les thésaurus, quand et comment les utiliser pour rendre une recherche documentaire plus efficace.
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.