AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions.
METHODS: Paediatricians from six Dutch university hospitals completed a survey during May to September 2017 which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general.
RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n=39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears, and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60% it was stated that ACP has to result in a documented code status.
CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
BACKGROUND: Patients with cancer often require acute hospitalizations, many of which are unplanned. These hospitalizations have been shown to increase in frequency near the end of life. The American College of Physicians recommends that goals-of-care (GOC) discussions be initiated early for metastatic cancers. We hypothesized that discussing GOC during hospitalization could help reduce readmissions. Our aim was to examine the association between the timing of GOC discussion, length of hospital stay, and the time to readmission.
METHODS: We conducted a retrospective review of medical records of patients with stage IV cancers hospitalized between August 2017 and July 2018. We recorded timing of GOC discussion, use of palliative care services, and hospital readmissions within 90 days. 2 tests were used to identify independent associations with GOC discussion, and logistic regression was used to examine association with readmission within 90 days.
RESULTS: Of all study patients (N = 241), 40.6% were female, 46% (n = 112) had a GOC discussion, and 34% (n = 82) had a palliative care consultation. Having a palliative care consult and being admitted to critical care were independently associated with having a GOC discussion. Early timing of GOC discussion was inversely associated with admission to critical care units (P < .05). Thirty-eight percent (n = 92) had unplanned hospital readmission within 90 days. Having a GOC discussion was independently associated with a reduction in the odds of an unplanned hospital readmission within 90 days by 79% (odds ratio = 0.21, 95% confidence interval: 0.12-0.37).
CONCLUSION: Among hospitalized patients with stage IV cancer, performing an early GOC discussion has an important association with lower hospital readmission rates and increased rates of goal-congruent patient care.
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes.
Design: quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression).
Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program.
Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment.
Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.
BACKGROUND: Authors of expert guidelines and consensus statements recommend that decisions at the end-of-life (EOL) be discussed before and after implantation of an implantable cardioverter defibrillator (ICD) and include promotion of shared decision-making. The purpose of this study was to describe experiences, attitudes, and knowledge about the ICD at EOL in ICD recipients and to compare experiences, attitudes, and knowledge in ICD recipients with and without heart failure (HF). We further sought to determine factors associated with having discussions about EOL.
METHODS AND RESULTS: Using a national registry in Sweden of all ICD recipients (n=5355) in 2012, an EOL questionnaire, along with other ICD-related measures, was completed by 2403 ICD recipients. Of the participants, 1275 (n=53%) had HF. Their responses in the knowledge, experience, and attitude domains were almost identical to those without HF. Forty percent of patients with and without HF did not want to discuss their illness trajectory or deactivation of their ICD ever. In logistic regression analyses, we found that having had an ICD shock (OR, 2.05; CI, 1.64-2.56), having high levels of anxiety (OR, 1.41; CI, 1.04-1.92), and having high levels of ICD concerns (OR, 1.53; CI, 1.22-1.92) were the only significant predictors of having discussions with providers about EOL scenarios (P<0.001 for full model).
CONCLUSIONS: HF was not a predictor of having an EOL conversation. Further research is needed to determine if attitudes related to not wanting to discuss EOL interfere with good quality of life and of death, or if shared decision-making should be encouraged in these individuals.
BACKGROUND: Although national organizations advocate that health-care providers ask patients about sexual health and sexual and gender minority status-to learn, for example, about side effects of treatment and to understand patients' social support-these conversations often do not occur. This study explored health-care providers' reasons for having/not having these conversations.
METHODS: This single-institution study recruited health-care providers from medical oncology, hematology, radiation oncology, and gynecology. Face-to-face interviews were recorded, transcribed, and analyzed qualitatively.
RESULTS: Three main themes emerged: (1) patient-centric reasons for discussing/not discussing sexual health and sexual and gender minority status ("So I think just the holistic viewpoint is important"); (2) health-care provider-centric reasons for discussing/not discussing these issues ("That's going to take more time to talk about and to deal with…" or "I was raised orthodox, so this is not something we talk about…"; and (3) reasons that appeared to straddle both of the above themes (eg, acknowledgment of the sometimes taboo nature of these topics).
CONCLUSION: Although many health-care providers favor talking with patients with cancer about sexual health and sexual and gender minority status, limited time, personal reluctance, and the taboo nature of these topics appear at times to hamper the initiation of these conversations.
Objectives: Pre-emptive conversations (PCs) about end-of-life (EOL) preferences are beneficial for both elderly people and their families to understand and share the preferences. However, the factors which promote/inhibit PCs have yet to be clarified. We therefore aimed to determine the factors related to having PCs with hypothesis that age, subjective economic status and subjective health status are associated with having PC experience.
Design: A cross-sectional study administering a questionnaire and using stratified random sampling by gender and region.
Setting: Residents aged 65 years or older who were not receiving nursing care as of 1 November 2016, were extracted from the Japanese long-term care insurance system registry in Koriyama City, Fukushima Prefecture, Japan.
Participants: 1575 participants (717 males and 858 females).
Outcome: Presence or absence of PC experience with family or friends (yes/no).
Results: The mean age of the participants was 74.0 years. A multivariable logistic-regression analysis revealed that having PC experience was significantly associated with gender (OR=1.907; 95% CI=1.556 to 2.337; p<0.001), subjective economic status (OR=0.832; 95% CI=0.716 to 0.966; p=0.016) and subjective happiness (OR=0.926; 95% CI=0.880 to 0.973; p=0.003).
Conclusions: Poor subjective economic status of elderly people may result in the absence of EOL conversation experience with their families and friends, hindering the elderly from sharing and understanding the EOL preferences. To promote PCs about EOL, gerontology and public health professionals should give special consideration to the subjective economic status of elderly people.
BACKGROUND: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
METHODS: Caregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12.
RESULTS: Approximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control.
CONCLUSIONS: Through quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.
Background: Patients with blood cancers experience high-intensity medical care near the end of life (EOL) and low rates of hospice use; attributes of goals of care (GOC) discussions may partly explain these outcomes.
Methods: By using a retrospective cohort of patients with blood cancer who received care at Dana-Farber Cancer Institute and died in 2014, the authors assessed the potential relationship between timing, location, and the involvement of hematologic oncologists in the first GOC discussion with intensity of care near the EOL and timely hospice use.
Results: Among 383 patients, 39.2% had leukemia/myelodysplastic syndromes, 37.1% had lymphoma, and 23.7% had myeloma. Overall, 65.3% of patients had a documented GOC discussion. Of the first discussions, 33.2% occurred >30 days before death, 34.8% occurred in the outpatient setting, and 46.4% included a hematologic oncologist. In multivariable analyses, having the first discussion >30 days before death (odds ratio [OR], 0.37; 95% CI, 0.17-0.81), in the outpatient setting (OR, 0.21; 95% CI, 0.09-0.50), and having a hematologic oncologist present (OR, 0.40; 95% CI, 0.21-0.77) were associated with lower odds of intensive care unit admission =30 days before death. The presence of a hematologic oncologist at the first discussion (OR, 3.07; 95% CI, 1.58-5.96) also was associated with earlier hospice use (>3 days before death).
Conclusions: In this large cohort of blood cancer decedents, most initial GOC discussions occurred close to death and in the inpatient setting. When discussions were timely, outpatient, or involved hematologic oncologists, patients were less likely to experience intensive health care use near death and were more likely to enroll in hospice.
BACKGROUND: Palliative simulation is a beneficial bridge between theory and practice; however, it can be emotionally laden. Often overlooked during a debrief session of a palliative simulation is ensuring that participants have the skills to process the feelings they may experience.
METHOD: The purpose of this mixed-methods concurrent triangulation study was to understand the perceived value and usefulness of debriefing in palliative simulation process feelings and emotions.
RESULTS: The simulation modality affects the intensity of feelings. A debriefer who is skilled in both debriefing simulation and coping with emotionally stressful situations allowed students to feel prepared to cope with their own feelings about palliative care. Having other students talk about their feelings in debriefing helped students to normalize their feelings.
CONCLUSION: The debriefing in palliative-based simulations requires additional considerations regarding modality and the skill set of the debriefer to adequately assist students to process feelings and emotions.
Background: Natural language processing (NLP), a form of computer-assisted data abstraction, rapidly identifies serious illness communication domains such as code-status confirmation and goals of care (GOC) discussions within free-text notes, using a codebook of phrases. Differences in the phrases associated with palliative care for patients with different types of illness are unknown.
Objective: To compare communication of code-status clarification and GOC discussions between patients with advanced pancreatic cancer undergoing palliative procedures and patients admitted with life-threatening trauma.
Design: Retrospective cohort study.
Setting/Subjects: Patients with in-hospital admissions within two academic medical centers.
Measurements: Sensitivity and specificity of NLP-identified communication domains compared with manual review.
Results: Among patients with advanced pancreatic cancer (n = 523), NLP identified code-status clarification in 54% of admissions and GOC discussions in 49% of admissions. The sensitivity and specificity for code-status clarification were 94% and 99% respectively, while the sensitivity and specificity for a GOC discussion were 93% and 100%, respectively. Using the same codebook in patients with life-threatening trauma (n = 2093), NLP identified code-status clarification in 25.9% of admissions and GOC discussions in 6.3% of admissions. While NLP identification had 100% specificity, the sensitivity for code-status clarification and GOC discussion was reduced to 86% and 50%, respectively. Adding dynamic phrases such as “ongoing discussions” and phrases related to “family meetings” increased the sensitivity of the NLP codebook for code status to 98% and for GOC discussions to 100%.
Conclusions: Communication of code status and GOC differ between patients with advanced cancer and those with life-threatening trauma. Recognition of these differences can aid in identification in patterns of palliative care delivery.
BACKGROUND: This pilot study examined which of a patient's personal aspects should be taken into account in a hospital setting on admission to the palliative care unit (PCU) by asking patients the question "what should I know about you as a person to help me take the best care of you that I can?"
METHODS: This retrospective study used qualitative methodology to thematically analyze answers from 14 patients admitted to the PCU of the Medical University of Vienna during July and August 2018. The question "what should I know about you as a person to help me take the best care of you that I can?" was asked on the day of admission, notes were taken during the interview and the patient's answers were written out immediately afterwards. Data were analyzed using NVivo 12.
RESULTS: Results revealed four topics: characterization of one's personality, important activities, social bonding, and present and future concerns regarding the patient's illness. Data showed that this question enabled patients to describe themselves and what was important to them. This might result in an improved sense of self-esteem in patients and represents an opportunity for professionals to treat patients in a more individualized manner; however, patient reactions also revealed a reluctance to address certain personal issues within a medical context.
CONCLUSION: The study results provide insights into the benefits of paying more attention to personal life aspects of severely ill patients on admission to a PCU. Addressing individual aspects of patients' lives might improve the healthcare professional-patient relationship.
Dans cet article, l’auteur présente les bases théoriques et techniques du dispositif de médiation transculturelle mis à la disposition des équipes de soins palliatifs. Accompagner une famille dans cette épreuve est un défi pour toutes les équipes soignantes. Ce défi peut se révéler plus complexe encore lorsque soignants et parents ne partagent pas les mêmes références culturelles. Dans des situations d’impasse thérapeutique, la prise en compte du fait culturel – considéré non plus comme un frein, mais au contraire comme un catalyseur formidablement actif – peut non seulement enrichir l’interprétation médicale, mais aussi rendre possible une réelle rencontre entre le patient et son médecin.
L’hypnose est une pratique de plus en plus courante en milieu hospitalier. Ainsi, en oncologie pédiatrique cette technique est efficace pour la gestion de l’anxiété et de la douleur liée à la maladie, aux traitements ou à des procédures invasives. L’hypnose et l’autohypnose améliorent aussi le confort et de bien-être des enfants malades et de leurs familles. L’hypnose est une approche centrée sur le vécu subjectif du patient et de son propre ressenti au niveau corporel. Elle permet également d’accéder à des souvenirs agréables tout en activant les modalités sensorielles liées à ceux-ci. Nous décrivons comment, dans notre service d’oncologie pédiatrique, nous utilisons l’hypnose avec une attention particulière pour les soins palliatifs.
In recent years, the common and mundane dying has begun to take place in the public space of the Internet. Among the blogs about food, fashion, travel, and other joyful aspects of life, blogs about severe disease and dying have appeared. The aim of this article is to describe some characteristic features of a sample of cancer blogs and to discuss them in the light of Zygmunt Bauman’s theory of the rationalization of death in modernity and theories about networked media, especially the theories about “affective labor” and “ambient intimacy” by McCosker, Darcy, and Pfister. It will then be argued that an affective communication is performed in and through these cancer blogs, where not only language but also the deficiencies of language—and what is called shared ineffability—might be valuable and meaningful (although not unproblematic) as part of a late modern approach to death, and in the practicing of the art of dying.
In literature, obituaries from different cultures and languages have been studied on different levels and from different perspectives. One of the popular research topics is the use of metaphors, since metaphors help to cope with death, which in modern society is still a taboo. This article presents a bottom-up, primarily qualitative analysis of the metaphors in 150 obituaries of sportspeople, published in online versions of newspapers/magazines and on the Internet. As expected, the obituaries contain the traditional metaphors of death. Also more original, creative metaphors are introduced to describe death in a euphemistic way. Some of those have a link to sports but not systematically to the sport practiced by the deceased.
The new technologies have changed the rituals related to death: Creation of memorial webpages and of virtual tombs, celebration of death anniversaries are now common currency on the Internet. In spite of their disappearance among the living, the deceased continue to exist on the Web. They still receive messages from their relatives but also from strangers and are at the heart of discussions, prolonging their presence. New technologies have led to a new concept of time and of “where life ends.” Through the analysis of Facebook’s accounts devoted to Turkish martyrs, this article aimed to describe the new funeral rituals seen on the Internet.
Background: Although blood cancers are accompanied by a high level of prognostic uncertainty, little is known about when and how hematologic oncologists discuss prognosis.
Objectives: Characterize reported practices and predictors of prognostic discussions for a cohort of hematologic oncologists.
Design: Cross-sectional mailed survey in 2015.
etting/Subjects: U.S.-based hematologic oncologists providing clinical care for adult patients with blood cancers.
Measurements: We conducted univariable and multivariable analyses assessing the association of clinician characteristics with reported frequency of initiation of prognostic discussions, type of terminology used, and whether prognosis is readdressed.
Results: We received 349 surveys (response rate = 57.3%). The majority of respondents (60.3%) reported conducting prognostic discussions with “most” (>95%) of their patients. More than half (56.8%) preferred general/qualitative rather than specific/numeric terms when discussing prognosis. Although 91.3% reported that they typically first initiate prognostic discussions at diagnosis, 17.7% reported routinely never readdressing prognosis or waiting until death is imminent to revisit the topic. Hematologic oncologists with =15 years since medical school graduation (odds ratio [OR] 0.51; confidence interval (95% CI) 0.30–0.88) and those who considered prognostic uncertainty a barrier to quality end-of-life care (OR 0.57; 95% CI 0.35–0.90) had significantly lower odds of discussing prognosis with “most” patients.
onclusions: Although the majority of hematologic oncologists reported discussing prognosis with their patients, most prefer general/qualitative terms. Moreover, even though prognosis evolves during the disease course, nearly one in five reported never readdressing prognosis or only doing so near death. These findings suggest the need for structured interventions to improve prognostic communication for patients with blood cancers.