Cette étude présente un patient atteint d’une sclérose latérale amyotrophique (SLA) bulbaire en phase palliative symptomatique. Le Projet de Vie du patient était de participer à un hommage sportif organisé en son honneur dans les 10 jours. Lors de l’hospitalisation, le patient a présenté une détresse respiratoire aiguë sur pneumonie impliquant une démarche décisionnelle collégiale. L’adaptation des interventions thérapeutiques a permis de réaliser le Projet de Vie malgré une fin de vie proche. Le décès est survenu deux jours après l’hommage. Ce cas clinique permet d’illustrer l’interdisciplinarité au sein des équipes, et de discuter l’intrication synergique entre technique et relation.
Les soins palliatifs visent à améliorer la qualité de vie des patients atteints de maladies évolutives graves ou mortelles, au moyen d’une prise en charge globale et pluridisciplinaire. La notion de qualité de vie est multidimensionnelle et propre à chaque patient, faisant de lui l’acteur majeur de ses soins. La prise en compte des différentes dimensions de la qualité de vie d’un patient est nécessaire afin de proposer un projet de soins personnalisé et pertinent.
Chaque année, en France, 1200 Adolescents et Jeunes adultes
(AJA) entre 15 et 25 ans sont diagnostiqués pour un cancer. Ses
formes les plus fréquentes sont les lymphomes, les sarcomes, les
tumeurs germinales, les leucémies aiguës et les tumeurs du
système nerveux central.
Dans cette classe d'âge, de nombreuses études ont mis en corrélation le risque plus élevé de mauvaise observance des traitements
associés à celui de rechute de la maladie.
En plus des problématiques adolescentes, ils sont à la fois confrontés
à une maladie grave avec risque vital, et à des traitements
prolongés sur plusieurs mois qui vont interférer avec leurs projets
d’études, de travail et leurs relations familiales et sociales. L’adolescent ou le jeune adulte à qui l’on annonce un diagnostic de cancer va connaître, en plus des transformations corporelles liées à la maladie et aux traitements, nombre de bouleversements sur les liens familiaux, amicaux et amoureux, sur la scolarité et la ormation professionnelle, la recherche d'un premier emploi…
La création d’unités ou d’équipes multidisciplinaires AJA avec un
personnel spécifiquement formé, permet de créer un cadre favorable
à une observance thérapeutique adaptée, et un accompagnement médical et humain au plus près des besoins des patients, tout en soutenant leurs projets de vie.
Nous proposons, par cet article, de présenter la prise en charge AJA en oncologie, et plus spécifiquement celle de l’Institut Curie.
L'apport du bénévolat à l'approche palliative est essentiel et non négligeable. Cela dit, suite à des discussions avec des bénévoles, nous avons constaté que bien que la majorité des acteurs du milieu reconnaissent leur contribution aux soins palliatifs, leur place dans l'équipe soignante peut paraître difficile à cerner. Les objectifs de la présente réflexion sont donc de s'interroger sur le rôle du bénévole en soins palliatifs, sur ce qui peut influencer ce rôle et contribuer à la construction de l'identité de bénévole, ainsi que sur les besoins qui peuvent accompagner un tel rôle. En nous basant sur nos discussions avec des bénévoles, les publications scientifiques disponibles et nos propres expériences cliniques et de recherche, nous proposons de décrire le bénévole comme une extension de l'équipe professionnelle et un représentant d'une culture de soin distincte. Le bénévolat en soins palliatifs serait également caractérisé par une part d'ambiguïté inhérente au rôle de bénévole. Nous discutons également de l'apport des identités professionnelles dans le développement de l'identité du bénévole et des variations dans les besoins associés à ce rôle de bénévole ; notamment en ce qui a trait aux besoins d'informations, de formation et de participation à la prise de décisions. Nous espérons que cette réflexion pourra favoriser une meilleure compréhension de la place du bénévole dans nos équipes soignantes et un plus grand respect pour son rôle auprès des personnes malades, de leurs proches et des professionnels.
Dans cet article nous faisons d’abord une brève présentation de notre établissement, puis nous décrivons l’histoire d’un enfant atteint d’une dystrophie neuroaxonale. Après l’accueil de cet enfant en situation de maladie grave et évolutive, les professionnels de l’établissement dans lequel nous exerçons ont souhaité mener un travail et une réflexion visant à favoriser la démarche palliative. Au-delà de la prise en charge symptomatique, notamment douloureuse, les professionnels de l’établissement ont élaboré un projet d’accueil personnalisé de l’enfant où les compétences de chaque corps professionnel ont été mobilisées. En collaboration avec l’équipe ressource de soins palliatifs pédiatriques d’Île-de-France, le projet de soins raisonnables a permis d’anticiper les situations d’urgence, et les réponses à y apporter, au sein même de l’établissement. La collaboration avec des équipes extérieures, l’équipe ressource de soins palliatifs pédiatriques et l’équipe d’hospitalisation à domicile, a été une piste de travail concrète pour poursuivre l’accueil de cet enfant, malgré tout rendu difficile par la complexité de la situation, notamment médicale.
Background: End-of-life (EOL) care is an important aspect of practice in the intensive care unit (ICU), where approximately one of every five patients may die.
Objective: The objective of this study was to describe clinicians' experiences with the 3 Wishes Project (3WP) and understand the influence of the project on care in the ICU.
Design: The 3WP is a palliative care intervention in which clinicians elicit and implement final wishes for patients dying in the ICU; it had been implemented for seven months at the time of this study. This mixed-methods study includes quantitative data from clinician surveys and qualitative data from clinician focus groups.
Setting: A 24-bed medical ICU in a tertiary academic center.
Subjects: Perspectives of 97 clinicians working in the ICU during the study period were obtained by self-administered surveys. Five focus groups with 25 nurses and 5 physicians were held, digitally recorded, transcribed, and analyzed.
Measurements and Results: During the 7-month period, 67 decedents and their families participated in the 3WP. The overarching concept identified through analysis of the survey and focus group data is that the 3WP improves EOL care in the ICU, which was supported by three main themes: (1) The 3WP facilitates meaningful EOL care; (2) The 3WP has a positive impact on nurses and physicians; and (3) clinicians observe a positive influence of the 3WP on families.
Conclusions: This patient-centered and family-partnered intervention facilitates meaningful EOL care, favorably impacting the ICU team and positively influencing family members.
Objectives: As key team members caring for people with advanced illness, nurses teach patients and families about managing their illnesses and help them to understand their options. Our objective was to determine if nurses' personal healthcare experience with serious illness and end-of-life (EOL) care differs from the general population as was shown for physicians.
Design: Observational propensity-matched cohort study.
Setting: Fee-or-service Medicare.
Participants: Nurses' Health Study (NHS) and a random 20% national sample of Medicare beneficiaries aged 66 years or older with Alzheimer's disease and related dementias (ADRD) or congestive heart failure (CHF) diagnosed in the hospital.
Measurements: Characteristics of care during the first year after diagnosis and the last 6 months of life (EOL).
Resuts: Among 57 660 NHS participants, 7380 had ADRD and 5375 had CHF; 3227 ADRD patients and 2899 CHF patients subsequently died. Care patterns in the first year were similar for NHS participants and the matched national sample: hospitalization rates, emergency visits, and preventable hospitalizations were no different in either disease. Ambulatory visits were slightly higher for NHS participants than the national sample with ADRD (13.1 vs 12.5 visits; P < .01) and with CHF (13.7 vs 12.5; P < .001). Decedents in the NHS and national sample had similar acute care use (hospitalization and emergency visits) in both diseases, but those with ADRD were less likely to use life-prolonging treatments such as mechanical ventilation (10.9% vs 13.5%; P = .001), less likely to die in a hospital with a stay in the intensive care unit (10.4% vs 12.1%; P = .03), and more likely to use hospice (58.9% vs 54.8%; P < .001). CHF at the EOL results were similar.
Conclusions: Nurses with newly identified serious illness experience similar care as the general Medicare population. However, at EOL, nurses are more likely to choose less aggressive treatments than the patients for whom they care.
Background: Care teams are increasingly expected to attend to the needs of patient's personal caregivers (e.g., family members). Improving communication among oncologists, patients with advanced cancer, and their personal caregivers might enhance caregivers' experiences of end-of-life (EoL) cancer care and bereavement outcomes.
Objective: To explore the effects of the Values and Options in Cancer Care intervention on caregivers' experiences of EoL care and bereavement outcomes.
Design: We developed a brief behavioral intervention to improve communication among oncologists, patients with advanced cancer, and their personal caregivers. The intervention was designed to help patients/caregivers ask questions, express concerns, and help oncologists respond effectively. We randomly assigned oncologists (and their patients/caregivers) to the intervention or usual care.
Setting/Subjects: Medical oncologists in NY and CA; patients/personal caregivers with advanced cancer.
Measurements: Two months after the patient's death, caregivers completed three instruments assessing their experiences of EoL care. Seven months after the patient's death, caregivers completed the Prolonged Grief Disorder-13 (PG-13; primary prespecified outcome), the Purpose-in-Life scale, and scales assessing mental health function, depression, and anxiety.
Results: The intervention did not significantly improve caregivers' scores on the PG-13 (p = 0.21), mental health function, depression, or anxiety, but it did improve purpose-in-life scores (p = 0.018). Cohen's d (95% confidence interval) for all three experiences of EoL care outcomes were promising, ranging from 0.22 (-0.19 to 0.63) to 0.39 (-0.07 to 0.86) although none was statistically significant.
Conclusion: Preliminary findings show promise that scalable interventions in cancer care settings may improve caregiver experiences with cancer care and some bereavement outcomes.
Background: There is no consensus approach to describe the process or components of goals of care (GOC) conversations.
Objective: The objective was to review the utilization of the phrase “GOC” in PubMed-indexed literature to contextualize the use of the phrase. Secondary aim was to describe the use of this phrase within journals focused on palliative care.
Methods: A review of articles in the PubMed-indexed literature published during a single year utilizing the phrase “goals of care.”
Results: A total of 191 articles were reviewed after exclusions. Few articles included an operant definition for GOC (n = 27, 14%). It was often used to describe conversations focused on determining intent for treatment (n = 57, 30%), talks about death or dying (n = 52, 27%), or simply vague discussions (n = 39, 20%). The agenda was focused on the outcomes of the conversation (n = 169, 88%) compared with factors such as hopes, worries, values, and personhood (n = 22, 12%). The majority did not utilize the phrase “palliative care” (n = 77, 40%); those who did frequently used “palliative care” incorrectly (n = 72, 38%).
Conclusions: The definition of the phrase GOC is most often assumed with its context centered on the needs of the health care system and linked to a specific medical topic. It is most commonly used to describe determinations of the patient's therapy intent, second most commonly to describe end-of-life conversations. The use of the phrase GOC within the palliative literature does not differ notably from its use in the broader literature.
Opioid errors are a leading cause of patient harm. Active failures in opioid dose conversion can contribute to error. Conversion is complex and is currently performed manually using tables of approximate equivalence. Apps that offer opioid dose double-checking are available but there are concerns about their accuracy and clinical validation. This study evaluated a novel opioid dose conversion app, The Safer Prescription of Opioids Tool (SPOT), a CE-marked Class I medical device, as a clinician decision support (CDS) platform. This single-centre prospective clinical utility pilot study followed a mixed methods design. Prescribers completed an initial survey exploring their current opioid prescribing practice. Thereafter prescribers used SPOT for opioid dosage conversions in parallel to their usual clinical practice, then evaluated SPOT through a survey and focus group. SPOT matched the Gold Standard result in 258 of 268 (96.3%) calculations. The 10 instances (3.7%) when SPOT did not match were due to a rounding error. Users had a statistically significant increase in confidence in prescribing opioids after using SPOT. Focus group feedback highlighted benefits in Quality Improvement and Safety when using SPOT. SPOT is a safe, reliable and validated CDS that has potential to reduce harms from opioid dosing errors.
Goals-of-care discussions at end-of-life are associated with increased patient satisfaction and reduced treatment burdens, reduced family and healthcare worker distress and healthcare costs, while achieving equal life-expectancy. It is unclear how goals-of-care discussions should occur. The objective of the study was to determine which patients could benefit, requirements, content, documentation, and harms and benefits of emergency medicine goals-of-care discussions. We sought primary evidence on goals-of-care discussions in EDs with adult patients nearing end-of-life, published in English after 1989. Data sources included Medline, Embase, PsycINFO, CINAHL, Web of Science and reference lists of included articles. One thousand nine hundred and twenty abstracts were screened, five articles selected. There was no consensus on the meaning of goals-of-care, which is often confused with advanced care planning and treatment limitation. Emergency clinicians can identify most patients needing discussions following training. There was no evidence for how to involve stakeholders, nor how to adapt conversations to meet cultural and linguistically diverse needs. Expert panels have suggested requirements and content for conversations with little supporting evidence. There was no evidence for how emergency conversations differ to those in other settings, nor for harms or benefits for holding goals-of-care conversations in EDs. Increased ED goals-of-care conversations increased hospice referral and reduced in-patient admissions. Most studies were of moderate quality only, outcomes were not standardised and sample sizes were small. 'Goals-of-care' is used inconsistently across the literature. This is the first systematic review regarding goals-of-care discussions in EDs. Further research is needed on all aspects of these conversations.
CONTEXT: Hospitalized patients with advanced cancer often face complex, preference-sensitive decisions. How clinicians and patients engage in shared decision-making during goals-of-care discussions is not well understood.
OBJECTIVE: To explore decision-making by patients and clinicians during inpatient goals-of-care discussions.
METHODS: A qualitative study of audio-recorded goals-of-care discussions between hospitalized patients with advanced cancer and their clinicians. Grounded theory was used to analyze transcripts.
RESULTS: Sixty-two patients participated in goals-of-care discussions with 51 unique clinicians. Nearly half of patients (n=30) were female and their mean age was 60.1 years (SD=12.7). A palliative care attending or fellow was present in 58 of the 62 discussions. Decisions centered on three topics: 1) disease-modifying treatments 2) hospice; and 3) code status. Clinicians' approach to decision-making included the following stages: "information exchange," "deliberation," "making a patient-centered recommendation," and "wrap-up: decisional status." Successful completion of each stage varied by the type of decision. When discussing code status, clinicians missed opportunities to engage patients in information exchange and to wrap up decisional status. In contrast, clinicians discussing disease-modifying treatments and hospice failed to integrate patient preferences. Clinicians also missed opportunities to make patient-centered recommendations when discussing treatment decisions.
CONCLUSION: Clinicians missed opportunities to facilitate shared decision-making regarding goals of care, and these missed opportunities differed by type of decision being discussed. Opportunities for clinician communication training include engagement in collaborative deliberation with patients and making patient-centered recommendations in situations of high medical uncertainty.
Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition.
Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans.
Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data.
Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty.
Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.
Background: Community-dwelling adults with serious illness benefit from conversations about their goals for care.
Objective: We undertook a project to increase the number of serious illness conversations occurring in an accountable care organization (ACO) using a script delivered telephonically by nurse care managers.
Design: Working with nurses previously trained in the basics of geriatric assessment and goals-of-care conversations, we used a quality improvement framework to modify the Ariadne Laboratories Serious Illness Conversation Guide to a six-question script.
Subjects: Our target population was a subset of patients enrolled in a program within the ACO for patients who are high health care utilizers.
Measures: After testing and modifying the script, we imbedded it into the initial nursing assessment in the electronic medical record. The electronic medical record prompts the nurses to ask the questions every three months to track changes in goals of care over time.
Results: We have increased documentation of goals-of-care conversations from 33% of patients in the subpopulation during the first month of this project to 86% at the end of the first year. Nurse care managers' report that clinical outcomes are improved by these conversations.
Conclusions: This project demonstrates a unique way to modify the Serious Illness Conversation Guide for use by nurses as part of a health care team. This project can be adapted by other health care organizations trying to increase goals-of-care conversations in their patient population.
BACKGROUND/OBJECTIVES: The Optimizing Patient Transfers, Impacting Medical Quality, Improving Symptoms: Transforming Institutional Care (OPTIMISTIC) project is a successful, multicomponent demonstration project to reduce potentially avoidable hospitalizations of long-stay nursing facility residents. Systematic advance care planning (ACP) is a core component of the intervention, based on research suggesting ACP is associated with decreased hospitalizations of nursing facility residents. The purpose of this study was to describe associations between ACP documentation resulting from the OPTIMISTIC intervention and hospitalizations.
DESIGN: Specially trained project nurses were embedded in 19 nursing facilities and systematically engaged in ACP as part of a larger demonstration project.
PARTICIPANTS: Residents (n = 1482) enrolled in the demonstration project for a minimum of 30 days between January 1, 2015, and June 30, 2016.
MEASUREMENTS: ACP status: (1) Physician Orders for Scope of Treatment (POST) comfort measures or do not hospitalize (DNH) orders; (2) ACP orders with no hospitalization limit (eg, code status only); and (3) no ACP (potentially avoidable and all-cause hospitalizations per 1000 resident days).
RESULTS: Residents with POST comfort measures/DNH orders (33.2% or n = 493) were less likely than residents with no ACP (14.7% or n = 218) to experience a potentially avoidable hospitalization (P = .001) or all-cause hospitalization (P = .001). These differences became statistically nonsignificant after adjusting for age, functional status, and cognitive functioning.
CONCLUSION: In this successful multicomponent demonstration project to reduce potentially avoidable hospitalizations, ACP outcomes were not associated with hospitalization rates of nursing facility residents after adjusting for resident characteristics. These findings highlight the challenge of measuring the contributions of individual components of complex, multicomponent interventions. Associations between lower hospitalization rates and ACP completion may be influenced by contextual factors, such as clinical expertise and resources to manage acute conditions leading to hospitalization, in addition to interventions to increase ACP.
Il est temps de proposer une nouvelle approche personnalisée de l’accompagnement de nos résidents vers leur fin de vie plus à l’écoute de leur vécu, de leur contexte spécifique, de leurs convictions, de leurs attentes, de leurs valeurs personnelles, des situations qu’ils sont prêts à vivre ou à ne pas supporter. Il est temps de les écouter se raconter, de les voir autonomes dans leurs choix de vie comme de fin de vie, de les aider à préparer leurs proches sur leur disparition et sur leur "après".
Experts estimate that over 25 million Americans are in recovery from addiction to alcohol and other drugs. Many will be confronted with a serious progressive illness necessitating palliative care or hospice services. In current literature, substance use disorder has mostly been examined in relation to appropriate symptom assessment and management, opioid risk screening, and controlled substance prescribing practices. However, as hospice and palliative care (HPC) clinicians strive to provide whole person care for the seriously ill, awareness and facilitation of healthy psychosocial-spiritual coping strategies for recovering addicts should enhance such care. One of the more common support mechanisms to support recovery is the 12-step program, based on Alcoholics Anonymous. Twelve-step programs have been shown to provide effective coping strategies, not only to help facilitate ongoing abstinence but also to support other psychosocial-spiritual crises. The HPC providers may help to serve those living with addiction disorders better by assessing not only patient histories of substance use/abuse and other addictive behaviors but by facilitating their ongoing support recovery efforts. Here, we use 2 HPC cases to illustrate the value of 12-step recovery programs in patient support and provide recommendations for enhancing such healthy coping in HPC clinical settings.
BACKGROUND: Conversations with seriously ill patients about their values and goals have been associated with reduced distress, a better quality of life, and goal-concordant care near the end of life. Yet, little is known about how such conversations are conducted.
OBJECTIVE: To characterize the content of serious illness conversations and identify opportunities for improvement.
DESIGN: Qualitative analysis of audio-recorded, serious illness conversations using an evidence-based guide and obtained through a cluster randomized controlled trial in an outpatient oncology setting. Setting/Measurements: Clinicians assigned to the intervention arm received training to use the "Serious Illness Conversation Guide" to have a serious illness conversation about values and goals with advanced cancer patients. Conversations were de-identified, transcribed verbatim, and independently coded by two researchers. Key themes were analyzed.
RESULTS: A total of 25 conversations conducted by 16 clinicians were evaluated. The median conversation duration was 14 minutes (range 4-37), with clinicians speaking half of the time. Thematic analyses demonstrated five key themes: (1) supportive dialogue between patients and clinicians; (2) patients' openness to discuss emotionally challenging topics; (3) patients' willingness to articulate preferences regarding life-sustaining treatments; (4) clinicians' difficulty in responding to emotional or ambiguous patient statements; and (5) challenges in discussing prognosis.
CONCLUSIONS: Data from this exploratory study suggest that seriously ill patients are open to discussing values and goals with their clinician. Yet, clinicians may struggle when disclosing a time-based prognosis and in responding to patients' emotions. Such skills should be a focus for additional training for clinicians caring for seriously ill patients.
BACKGROUND: Shared decision making is a collaborative process that allows patients, or their surrogates, and clinicians to make health care decisions together. There is an imperative to teach young physicians early in their training the importance of engaging in a shared decision-making process to define overall goals of care (GOC). The PERSON mnemonic proposes a structured format that allows providers to evaluate GOC across the spectrum of serious illnesses, outside of breaking bad news or end-of-life planning.
OBJECTIVES: This study evaluated the utility of the PERSON mnemonic in training residents to have GOC with their patients, and investigated if these skills translated to the bedside with real patient encounters.
METHODS: First-year residents were divided into groups to participate in an in-depth education session. A pre-/postbaseline survey was administered immediately after the education intervention and approximately seven months later to assess retention and utility.
RESULTS: Thirty first-year residents were eligible for this study; 30 attended the educational sessions and completed the immediate baseline pre-/postsurvey and the seven-month follow-up survey, resulting in 100% retention rate throughout study. Residents found sustained utility in the mnemonic. It was significantly successful in increasing the knowledge and confidence level in exploring GOC. Patient-centered outcomes could not be analyzed due to low response rates and limited granularity of hospital-level data.
CONCLUSION: The PERSON mnemonic is a feasible and useful format for teaching residents how to have a GOC discussion.
BACKGROUND: Goal-concordant care (GCC)-care aligned with a patient's known goals and values-is a measure of the quality of end-of-life (EOL) care that can be assessed by surveying family members after a patient's death. It is unknown whether patient characteristics affect this measure.
OBJECTIVE: The objective of the article was to examine family report of GCC and its associations with patient characteristics.
METHODS: Using the Health and Retirement Study, which is a nationally representative, longitudinal cohort of adults over age 50, we sampled decedents whose family completed the 2014 postdeath interview. Families reported frequency of GCC at the EOL. A multivariable regression model assessed the associations between family report of GCC and decedent characteristics.
RESULTS: Of 1175 respondents, 76% reported that the decedent "usually" or "always" received GCC. Proxy report of GCC was independently associated with age (adjusted odds ratio [AOR] 1.02, 95% confidence interval [CI] 1.01-1.03), having three or more chronic medical conditions (AOR 1.34, CI 1.02-1.77), the presence of written or verbal advance care planning (ACP) (AOR 1.38, CI 1.02-1.88), and an interaction term of race and ability to participate in EOL decision making (AOR 3.83, CI 1.02-14.40). African American race was not independently associated with GCC (AOR 0.73, CI 0.5-1.06).
CONCLUSION: Family's report of GCC is associated with ACP, age, and multimorbidity. Being African American and perceived as able to participate in EOL decision making was significantly associated with report of GCC. Bringing the patient's voice into EOL care discussions through upstream ACP with likely surrogates may be particularly important to improving GCC for African Americans.