Nous ferons d'abord dans ce chapitre un travail de précision sémantique qui apparaît nécessaire avant d'entrer dans le questionnement sur le suicide. Nous aborderons ensuite la question du rapport entre maladie grave et suicide, puis entre fin de vie et suicide et enfin entre suicide et soins palliatifs. Nous mènerons une réflexion spécifique sur le suicide à la fin de la vie des personnes âgées tant cette question doit être traitée spécifiquement.
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Nous proposons une réflexion autour de l'accompagnement éducatif de personnes affectées par une maladie grave incurable accueillies en Maison d'accueil spécialisée. Dans l'objectif de problématiser la rencontre entre deux champs professionnels, celui des soins palliatifs et celui du handicap, nous proposons quelques repères nécessaires pour penser et construire la pratique professionnelle dans ce contexte.
L'épreuve de la maladie grave transforme la dynamique du couple. Les professionnels témoignent des ressources et des difficultés des couples à maintenir un espace intime et sécurisant. Il est important pour les accompagnants de réfléchir à leurs représentations du couple et à leur positionnement, à veiller à ne pas violenter davantage ces unions déjà fortement éprouvées.
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.
BACKGROUND: Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers.
METHODS: In a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data.
RESULTS: Four themes were identified in the context of participants' understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members.
CONCLUSION: The findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life.
Context: Research shows an increased symptom burden in young adult (YA) cancer patients compared with their older adult counterpart.
Objectives: The purpose of this study was to identify differences in clinical characteristics and related outcomes between YA and older adult cancer patients admitted for cancer-related pain.
Materials and Methods: We retrospectively identified 190 hospitalized patients in a single academic center with admissions for cancer-related pain. Patients were grouped into either "young adult" (18-39) or "older adult (>40) cohorts. We compared differences in patient characteristics and pain regimens.
Results: Median oral morphine equivalent per 24 hours was higher in the YA group (194 mg vs. 70 mg, p = 0.010). Younger patients received patient-controlled analgesia (PCA) more frequently (p = 0.023). The number of palliative care consults and adjuvants prescribed did not differ between groups (p > 0.05), althoughYAs more frequently had an inpatient pain anesthesia consult (p = 0.047).
Conclusion: Findings show increased opioid requirements and PCA use in YAs being treated for malignancy compared with their older adult counterpart.
Palliative care has long recognized the importance of treating the whole person to address a patient's physical, mental, and spiritual suffering. To address psychological suffering, palliative care often draws upon the pharmacotherapy and psychotherapy offered by psychiatry. Several new developments have occurred in the past decade within psychiatry that impact palliative care. For example, the recent updating of the Diagnostic and Stastistical Manual of Mental Disorders has led to renewed discussions on how to best distinguish grief from depression or recognize that both may be present at the same time. In this article, we draw upon a team of psychiatric, palliative care, and dual-trained physicians to highlight the “Top 10” tips from psychiatry to provide relief for patients with chronic disease or at the end of life.
OBJECTIVES: The need to empower Ambulance Service staff at the point of delivery of end of life care (EoLC) is crucial. We describe the delivery, outcomes and potential impact of the Serious Illness Conversation project delivered to Welsh Ambulance Service Trust (WAST) staff. Over an 18-month period, 368 WAST staff attended face-to-face teaching, which included serious illness conversation communication skills, symptom control and 'shared decision making'.
METHOD: Data collected from WAST staff were used to gain insight on perception of their role and challenges within the context of EoLC, understand the impact of teaching on self-confidence and identify impact on the wider service. A mixed methods approach was used for data analysis.
RESULTS: WAST staff view themselves in several important roles, acting as 'facilitators' to patient-centred, seamless care, providing support, liaison between services and practical help in patient care at the end of life. The difficult questions and situations pertaining to EoLC were related to discussions on death and dying and managing expectation. The predominant barriers identified related to communication. Quantitative outcomes on the six communication domains indicate statistically significant improvement in self-assessed confidence. The overall impact to the wider ambulance service suggests a trend towards better use of resources.
CONCLUSION: The perceived roles and challenges identified by paramedics can help in customising training objectives. The initial outcomes from the ongoing project with WAST demonstrate increased confidence in handling communication issues. Initial successive surveys suggest teaching is making a real life impact on patient care at end of life.
Background: Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients.
Objective: We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results: We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions: Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.
BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown.
AIM: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom.
DESIGN: Content analysis of committee meeting minutes, decision letters and researcher response letters.
SETTING/PARTICIPANTS: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents.
RESULTS: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved.
CONCLUSION: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.
Importance: Although advance care planning is known to increase patient and caregiver satisfaction, its association with health care utilization is not well understood.
Objective: To examine the association between billed advance care planning encounters and subsequent health care utilization among seriously ill patients.
Design, Setting, and Participants: This retrospective cohort study conducted from October 1, 2015, to May 31, 2018, used a national commercial insurance claims database to retrieve data from 18 484 Medicare Advantage members 65 years or older who had a claim that contained a serious illness diagnosis.
Exposure: A claim that contained an advance care planning billing code between October 1, 2016, and November 30, 2017.
Main Outcomes and Measures: Receipt of intensive therapies, hospitalization, emergency department use, hospice use, costs, and death during the 6-month follow-up period.
Results: The final study sample included 18 484 seriously ill patients (mean [SD] age, 79.7 [7.9] years; 10 033 [54.3%] female), 864 (4.7%) of whom had a billed advanced care planning encounter between October 1, 2016, and November 30, 2017. In analyses adjusted for patient characteristics and a propensity score for advance care planning, the presence of a billed advance care planning encounter was associated with a higher likelihood of hospice enrollment (incidence rate ratio [IRR], 2.52; 95% CI, 2.22-2.86) and mortality (hazard ratio, 2.27; 95% CI, 1.79-2.88) compared with no billed advance care planning encounter. Although patients with billed advance care planning encounters were also more likely to be hospitalized (IRR, 1.37; 95% CI, 1.26-1.49), including in the intensive care unit (IRR, 1.25; 95% CI, 1.08-1.45), they were less likely to receive any intensive therapies (IRR, 0.85; 95% CI, 0.78-0.92), such as chemotherapy (IRR, 0.65; 95% CI, 0.55-0.78). Similar results were observed in a propensity score–matched analysis (99% matched) and in a decedent analysis of patients who died during the 6-month follow-up period.
Conclusions and Relevance: Patients with billed advance care planning encounters were more likely than those without these encounters to receive hospice services and less likely to receive any intensive therapies, such as chemotherapy. However, they were also hospitalized more frequently than patients without billed advance care planning encounters. Although these findings were robust to multiple analytic methods, the results may be attributable to residual confounding because of a higher unmeasured severity of illness in the advance care planning group. Additional evidence appears to be needed to understand the effect of advance care planning on these outcomes.
Dans cette enquête ethnographique, l'auteure donne la parole aux détenus en fin de vie pour interroger l'expérience de la maladie grave et le sens de la punition. L'analyse du soin, de la mort et de la peine fondée sur des observations et des entretiens menés auprès des détenus et des professionnels de la surveillance et du soin font émerger deux dimensions fondamentales : l'espace et le temps.
Background: Although community-based serious-illness care (CBSC) is an innovative care model, it is unclear to what extent CBSC addresses palliative care needs, particularly for those patients near death.
Objectives: To evaluate palliative care services of a CBSC program.
Design: Retrospective chart reviews.
Setting/Subjects: Patients enrolled in a CBSC program in central North Carolina.
Measurement: Descriptive statistics of palliative care needs and services, such as symptom management, psychosocial support, and advance care planning (ACP), for survivors and decedents.
Results: Patients were seen in an 18-month time frame (n = 159). Mean enrollment in the program was 261.1 days (standard deviation 180.6). Patients' average age was 70 years, 56% were female, and 33% were black. Patients' most frequent comorbidities were dementia (32%), heart failure (32%), and diabetes (28%). Fifty patients (31%) died during the study period. Clinicians most frequently screened for pain (70%), constipation (57%), and dyspnea (57%). Of those screened positive, clinicians most frequently treated pain (92%), anxiety (84%), and constipation (83%). Among the 54% who screened positive for psychosocial distress, 82% received support. Clinicians screened 22% for spiritual needs; 4% received spiritual care. Among decedents, 66% were enrolled in hospice; 14% died in in-hospital. Decedents were more likely than survivors to have ACP (34% vs. 18%, p = 0.03) and a primary goal of comfort (40% vs. 12%, p < 0.01).
Conclusions: A CBSC program provided palliative care services comparable with other home-based palliative care programs. Although the CBSC program does not address all domains of palliative care, it provided most with symptom management, psychosocial support, and ACP.
Opioids are often the foundation of pain management in seriously ill patients. Unfortunately, even experienced providers carry with them information that they consider "fact", when this information is not based on scientific evidence, but on "myth". Several topics were elicited based on common beliefs and misconceptions in clinical practice. These were identified via a survey of pharmacist pain and palliative care providers. Pearls from these topics were chosen that were based on evidence and would have the greatest bearing on clinical practice. The pearls address topics such as not using opioids as first-line analgesics for all types of pain, opioid-induced hyperalgesia, opioid risk management in cancer patients, use of buprenorphine in hospice and palliative care settings and use of naloxone in seriously ill patients. The pearls are supported by clinical evidence extracted from several references. They are intended to make readers give thought to opioid therapy which is strictly evidence-based, and not historical or anecdote-based. Practical recommendations are provided to give readers a starting point to base clinical decisions going forward. Readers may discover that "facts" they once learned about opioid use in seriously ill patients are actually "myths" that are a figment of the past.
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.
With various serious illness, patients experience high levels of functional loss, deconditioning, and dependency for activities of daily living (ADLs). This can lead to social isolation, depression, caregiver breakdown, and institutionalization. This fast fact wil review the benefits and challenges of palliative rehabilitation.
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Introduction: Patients with serious illness often have pain, uncontrolled symptoms, and poor quality of life. Evidence continues to evolve regarding the role of cannabis to treat chronic pain, nausea, and anorexia. Little is known about how patients with serious illness perceive its benefits and harms. Given that an increasing number of clinicians across the United States are treating patients with medical cannabis, it is important for providers to understand patient beliefs about this modality. We assessed patient perceptions of benefits and harms of cannabis who obtained a medical cannabis card within an ambulatory palliative care (APC) practice.
Methods: We recruited patients with a medical cannabis card, allowing for legal possession of cannabis oil, from an APC practice in Georgia. All participants reported using cannabis products. Patients completed an online survey that included questions about their cannabis use, concurrent opiate or controlled medication use, and perceptions of benefits and harms of cannabis.
Results: All 101 patients invited to participate completed the survey. A majority had cancer (76%) and were married (61%), disabled or retired (75%), older than 50 years of age (64%), and men (56%). Most patients ingested (61%) or vaporized (49%) cannabis products. A majority of respondents perceived cannabis to be important for their pain (96%) management. They reported that side effects were minimally bothersome, and drowsiness was the most commonly reported bothersome harm (28%). A minority of patients reported cannabis withdrawal symptoms (19%) and concerns for dependency (14%). The majority of patients were using concurrent prescription opioids (65%). Furthermore, a majority of cancer patients reported cannabis as being important for cancer cure (59%).
Conclusion: Patients living with serious illnesses who use cannabis in the context of a multidisciplinary APC practice use cannabis for curative intent and for pain and symptom control. Patients reported improved pain, other symptoms, and a sense of well-being with few reported harms.
Context: Older and seriously ill Australians are often admitted to hospital in the last year of their life. The extent to which these individuals have considered important aspects of end-of-life (EOL) care, including location in which care is provided, goals of care, and involvement of others in decision making, is unclear.
Objectives: To determine, in a sample of older and seriously ill Australian inpatients, preferences regarding location in which they receive EOL care and reasons for their choice; who is involved in EOL decisions; disclosure of life expectancy; goals of care; and voluntary-assisted dying.
Methods: Cross-sectional face-to-face survey interviews conducted with 186 (80% consent) inpatients in a tertiary referral center aged 80 years and older; or aged 55 years and older with progressive chronic disease(s); or with physician-estimated life expectancy of less than 12 months.
Results: Home care was preferred (69%), given the perceived availability of family/friends, familiarity of environment, and likelihood of having wishes respected. If unable to make decisions themselves, inpatients wanted family to decide care alone (31%) or with a doctor (49%). Of those who had not discussed life expectancy, 23% wished to. Most (76%) preferred care that maintained quality of life and relieved symptoms. There was some agreement for being sedated at the EOL (63%) and able to access medication to end life (43%).
Conclusion: Most inpatients would prefer EOL care that maintains quality and relieves suffering compared with life extension and to receive this care at home. Family involvement in resolution and documentation of EOL decisions should be prioritized.
Background: Failure to initiate discussions about patients' values and goals in serious illness remains a common problem. Many clinicians are inadequately trained for these discussions.
Objective: Evaluate whether a novel train-the-trainer model results in high-quality training that improves clinicians' self-reported competencies in serious illness communication.
Design: Multimethod evaluation of an educational program.
Setting/Context: In 2016, three faculty at Ariadne Labs (AL) conducted three train-the-trainer courses to equip faculty trainers at each of the three institutions to teach serious illness communication to clinicians.
Measures: As collected by a post-training questionnaire, primary evaluation measure is clinicians' self-reported change in skills after the training compared with before. Secondary measures include a course evaluation and qualitative learnings.
Results: From 2016 to 2018, AL trained 22 trainers (19/22 were palliative care specialists) in three systems, who trained 297 clinicians (49% physicians; 35% advanced practice clinicians; 12% registered nurses, social workers, or chaplain; 4.0% Other) spanning subspecialties (48%); primary care (28%); palliative care (17%); and other (7.1%). Clinicians reported statistically significant improvement in all skills for two of the systems, with a third system demonstrating improvement in all skills with two reaching statistical significance (p < 0.0001). Participants rated the quality of the training highly (95% mostly/extremely effective) and shared a diverse array of takeaways that reflect positive shifts in knowledge, attitudes, and skills.
Conclusion: Serious illness communication training, delivered through a train-the-trainer model, was highly acceptable and resulted in significant self-reported improvements in competencies of clinicians. This may be a viable method for health systems seeking to train their clinical workforce.
BACKGROUND: Patient-centered care for older adults with CKD requires communication about patient's values, goals of care, and treatment preferences. Eliciting this information requires tools that patients understand and that enable effective communication about their care preferences.
METHODS: Nephrology clinic patients age = 60 years with stage 4 or 5 nondialysis-dependent CKD selected one of four responses to the question, "If you had a serious illness, what would be important to you?" Condensed versions of the options were, "Live as long as possible;" "Try treatments, but do not suffer;" "Focus on comfort;" or "Unsure." Patients also completed a validated health outcome prioritization tool and an instrument determining the acceptability of end-of-life scenarios. Patient responses to the three tools were compared.
RESULTS: Of the 382 participants, 35% (n=134) selected "Try treatments, but do not suffer;" 33% (n=126) chose "Focus on comfort;" 20% (n=75) opted for "Live as long as possible;" and 12% (n=47) selected "Unsure." Answers were associated with patients' first health outcome priority and acceptability of end-of-life scenarios. One third of patients with a preference to "Focus on comfort" reported that a life on dialysis would not be worth living compared with 5% of those who chose "Live as long as possible" (P<0.001). About 90% of patients agreed to share their preferences with their providers.
CONCLUSIONS: Older adults with advanced CKD have diverse treatment preferences and want to share them. A single treatment preference question correlated well with longer, validated health preference tools and may provide a point of entry for discussions about patient's treatment goals.