Context: Older adults with advanced lung cancer experience high symptom burden at end of life (EOL), yet hospice enrollment often happens late or not at all. Receipt of medications to manage symptoms in the outpatient setting, outside the Medicare hospice benefit, has not been described.
Objectives: We examined patterns of symptom management medication receipt at EOL for older adults who died of lung cancer.
Methods: This retrospective cohort used the Surveillance, Epidemiology, and End Results—Medicare database to identify decedents diagnosed with lung cancer at age 67 years and older between January 2008 and December 2013 who survived six months and greater after diagnosis. Using Medicare Part B and D claims, we identified monthly receipt of outpatient medications for symptomatic management of pain, emotional distress, fatigue, dyspnea, anorexia, and nausea/vomiting. Multivariable logistic regression estimated associations between medication receipt and patient demographic characteristics, comorbidity, and concurrent therapy.
Results: Of the 16,246 included patients, large proportions received medications for dyspnea (70.7%), pain (62.5%), and emotional distress (49.4%), with lower prevalence for other symptoms. Medication receipt increased from six months to one month before death. Women and dual Medicaid enrolled were more likely to receive medications for pain, emotional distress, dyspnea, and nausea/vomiting. Receipt of symptom management medications decreased with increasing age and racial/ethnical minorities.
Conclusion: Symptom management medication receipt was common and increasing toward EOL. Lower use by males, older adults, and nonwhites may reflect poor access or poor patient-provider communication. Further research is needed to understand these patterns and assess adequacy of symptom management in the outpatient setting.
L'entretien entre un professionnel de santé et un patient ou son proche est à la fois le coeur et l'outil de la relation.
Si un échange peut soutenir les personnes, la seule présence du clinicien ne suffit pas, pas plus que la simple conversation.
Pour que l'entretien ait valeur d'acte thérapeutique, il importe que le professionnel adopte une écoute et une attitude spécifiques afin de favoriser l'expression du patient ou de son proche.
Les auteurs, médecins, soignants, psychologues cliniciens, ne livrent pas des trames d'entretiens valables en toutes circonstances, mais des approches applicables à la singularité de chacun.
Ils partagent la richesse de leur pratique quotidienne d'entretiens, qu'ils exercent dans des services de réanimation, de médecine, ou dans le champ psychosocial.
Ils détaillent la diversité de leurs rencontres avec des patients, leur entourage ou toute personne en besoin d'aide et de soutien, que ce soit dans le cadre d'une consultation dédiée ou de façon plus informelle.
Les situations cliniques abordées permettent de saisir les enjeux de l'annonce concernant une évolution défavorable en réanimation, la limitation ou l'arrêt de thérapeutiques actives, le prélèvement d'organes, ou la nécessité d'une dialyse.
Les psychologues sont aussi conduits à intervenir dans des situations de soutien à la parentalité, face à des personnes âgées, en fin de vie, migrantes, des victimes d'abus sexuel, etc.
Cet ouvrage fournit à l'ensemble des professionnels de la santé des repères pour veiller à ce que l'entretien soit un acte thérapeutique.
Il s'agit de contribuer à une avancée vers un mieux-être du patient ou de ses proches, qui vivent des expériences générant des émotions intenses.
Background: A multilevel quality improvement program was implemented at an urban community hospital, serving a racially and ethnically pluralistic patient population, to increase participation in advance care planning (ACP).
Measures: Number of eligible patients who completed an ACP form.
Intervention: Projects were implemented over the course of two years that targeted patients, health care providers, the organization, and the community.
Outcomes: The intervention resulted in increased completion of four unique ACP forms. Completion of the Living Will increased by 60%, Health Care Proxy increased by 9%, Medical Orders for Life-Sustaining Treatment increased by 5%, and Do-Not-Resuscitate/Do-Not-Intubate orders increased by 3%.
Conclusion: Multilevel interventions can increase ACP participation in a racially and ethnically pluralistic patient population.
Context: Evidence-based resource allocation is receiving increasing attention as we strive for equity, transparency, and cost-effectiveness across health care. In the context of finite resources, which of our patients with terminal illness should be prioritized for urgent palliative care?
Objectives: To develop the scoring system for the novel Responding to Urgency of Need in Palliative Care triage tool.
Methods: Online international discrete choice experiment involving palliative care clinicians to establish the relative importance of seven key attributes of palliative care triage identified during an earlier qualitative study.
Results: Participants (n = 772) were mainly female (79.9%) with a decade of clinical experience. All attributes contributed significantly (all P-values < 0.001) and independently to clinician assessment of urgency. This study found physical suffering (coefficient 3.45; 95% confidence interval: 3.24 to 3.66) was the most important determinant of urgency, followed by imminent dying (coefficient 1.56; 1.43 to 1.69), psychological suffering (coefficient 1.49; 1.37 to 1.60), caregiver distress (coefficient 1.47; 1.35 to 1.59), discrepancy between care needs and care arrangements (coefficient 1.14; 1.02 to 1.26), mismatch between current and desired site of care (coefficient 0.94; 0.85 to 1.03), and unmet communication needs (coefficient 0.84; 0.76 to 0.92).
Conclusion: Palliative care triage, which is complex and contextual, has been made more transparent through this discrete choice experiment. The Responding to Urgency of Need in Palliative Care triage tool provides an important step toward evidence-based assessment of priority for palliative care. Further research is underway to determine the validity of the tool in clinical practice and its impact on patient and caregiver outcomes.
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral intervention for oncology teams we explored how uncertainty might influence palliative care referrals.
Objectives: To describe distinct meanings of the term “uncertainty” that emerged during the qualitative evaluation of the development and implementation of an intervention to help oncologists overcome barriers to palliative care referrals.
Methods: We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members in discussions, group activities and semistructured interviews regarding the introduction of palliative care.
Results: We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care.
Conclusion: Various types of uncertainty arise in the care of pediatric patients with advanced cancer. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.
Context: Researchers, hospices, and government agencies administer standardized questionnaires to caregivers for assessing end-of-life care quality. Caregiving experiences may influence end-of-life care quality reports, which have implications for caregiver outcomes, and are a clinical and policy priority.
Objectives: This study aims to determine whether and how caregivers' end-of-life care assessments depend on their burden and benefit perceptions.
Methods: This study analyzes data from 391 caregivers in the 2011 National Study of Caregiving and their Medicare beneficiary care recipients from the 2011–2016 National Health and Aging Trends Study. Caregivers assessed five end-of-life care aspects for decedents. Logistic regression was used and predicted probabilities of caregivers positively or negatively assessing end-of-life care based on their burden and benefit experiences calculated. Analyses adjusted for caregiver and care recipient demographic and health characteristics.
Results: No or minimal caregiving burden is associated with =0.70 probability of caregivers reporting they were always informed about the recipient's condition and that the dying person's care needs were always met, regardless of perceived benefits. High perceived caregiving benefit is associated with =0.80 probability of giving such reports, even when perceiving high burden.
Conclusion: Caregiver burden and benefit operate alongside one another regarding two end-of-life care evaluations, even when years elapse between caregiver experience reports and care recipient death. This suggests that caregiver interventions reducing burden and bolstering benefits may have a positive and lasting impact on end-of-life care assessments.
Context: Patients with end-stage renal disease undergoing dialysis experience multiple concurrent symptoms. These symptoms cluster together and have negative impacts on patient outcomes. However, information on changes in symptom clusters over time is limited.
Objectives: This longitudinal study examined the stability of symptom clusters and their impacts on health-related quality of life and functional status over a period of one year.
Methods: Eligibility criteria were patients diagnosed with end-stage renal disease; had received dialysis consecutively for at least three months; and had given written informed consent. Dialysis Symptom Index, Kidney Disease Quality of Life 36, and Karnofsky Performance Status Scale were used to evaluate the impacts of symptom clusters and outcomes. Exploratory factor analyses and multiple regression analyses were used to determine symptom clusters and their associations with patient outcomes.
Results: Among the 354 recruited patients, 271 completed the 12-month assessment. Four symptom clusters were identified across the three assessments, namely, uremic, gastrointestinal, skin, and emotional. Within each cluster, the specific symptoms were varied. The uremic symptom cluster accounted for the largest amount of variability. Across the three assessments, a higher uremic cluster factor score was associated with poorer physical well-being, whereas a higher emotional cluster factor score was consistently associated with poorer mental well-being.
Conclusion: Symptoms in patients on dialysis clustered in relatively stable patterns. The four symptom clusters identified had consistent negative effects on various aspects of patients' well-being. Our findings suggest the need for ongoing symptom assessment and early recognition of symptoms that may contribute to adverse patient outcomes.
Context: High-quality advance care planning (ACP) discussions are important to ensure patient receipt of goal-concordant care; however, there is no existing tool for assessing ACP communication quality.
Objectives: The objective of this study was to develop and validate a novel instrument that can be used to assess ACP communication skills of clinicians and trainees.
Methods: We developed a 20-item ACP Communication Assessment Tool (ACP-CAT) plus two summative items. Randomized rater pairs assessed residents' performances in video-recorded standardized patient encounters before and after an ACP training program using the ACP-CAT. We tested the tool for its 1) discriminating ability, 2) interrater reliability, 3) concurrent validity, 4) feasibility, and 5) raters' satisfaction.
Results: Fifty-eight pre/post-training video recordings from 29 first-year internal medicine residents at Mount Sinai Hospital were evaluated. ACP-CAT reliably discriminated performance before and after training (median score 6 vs. 11, P < 0.001). For both pre/post-training encounters, interrater reliability was high for ACP-CAT total scores (intraclass correlation coefficient or ICC = 0.83 and 0.82) and the summative items Overall impression of ACP communication skills (ICC = 0.73 and 0.80) and Overall ability to respond to emotion (ICC = 0.83 and 0.82). Concurrent validity was shown by the strong correlation between ACP-CAT total score and both summative items. Raters spent an average of 4.8 minutes to complete the ACP-CAT, found it feasible, and were satisfied with its use.
Conclusion: ACP-CAT provides a validated measure of ACP communication quality for assessing video-recorded encounters and can be further studied for its applicability with clinicians in different clinical contexts.
The practice of medically assisted dying has long been contentious, and the question of what to call it has become increasingly contentious as well. Particularly among U.S. proponents of legalizing the practice, there has been a growing push away from calling it “physician-assisted suicide,” with assertions that medically assisted dying is fundamentally different from suicide. Digging deeper into this claim about difference leads to an examination of the difference between two kinds of suffering—suffering from physical conditions and suffering from psychological conditions—and therefore leads also toward an examination of whether requests for medical assistance in dying by those suffering from psychological conditions and those suffering from physical conditions should be painted with the same brush .
In this article, I aim both to illuminate some of the considerations that ought to be included in discussions related to medically assisted dying and to shed light on what the indirect effects of such discussions can be. I consider some of the reasons commonly given for holding that suicide and medically assisted dying differ fundamentally and then whether the conclusion that medically assisted dying should not be called “suicide” follows from the premises. I ask what else might justify the conclusion that the two acts ought to be called by different names, and I examine possible justifications for accepting this premise, as well as what justifications might exist for emphasizing how the acts are alike. Finally, I argue that we should be cautious before concluding that medically assisted dying should not be called “suicide.” We need more evidence either that the two acts are fundamentally different or that emphasizing differences between them is not likely to do more harm than good .
Dealing with death and bereavement in the context of the Covid-19 Pandemic will present significant challenges for at least the next three months. The current situation does not allow for families andbcommunities to be involved in the process of death in ways in which they would normally hope or expect to be. In addition, mortality rates will disproportionately affect vulnerable households. The government has identified the following communities as being at increased risk: single parent households; multi-generational Black and Minority Ethnic groups; men without degrees in lone households and/or in precarious work; small family business owners in their 50s; and elderlyhouseholds. Our study focused on these groups. This report presents a summary of findings and key recommendations by a team of anthropologists from the London School of Economics who conducted a public survey and 58 cross-community interviews between 3 and 9 April 2020. It explores ways to prepare these communities and households for impending deaths with communications and policy support. More information on the research methodology, data protection and ethical procedures is available in Appendix 1. A summary of relevant existing research can be found in Appendix 2. A list of key contacts across communities for consultation is available on request. Research was focused on “what a good death looks like” for people across all faiths and for vulnerable groups. It examined how communities were already adapting how they dealt with processes of dying, burials, funerals and bereavement during the pandemic, and responding to new government regulations. It specifically focused on five transitions in the process of death, and what consultation processes, policies and communications strategies could be mobilised to support communities through these phases.
Ischaemic heart disease (IHD), in particular acute coronary syndrome (ACS), comprising ST-elevation myocardial infarction, non-ST-elevation myocardial infarction and unstable angina, is the leading cause of death worldwide. Age is a major predictor of adverse outcome following ACS. COVID-19 infection seems to escalate the risk in older patients with heart disease. Increasing odds of in-hospital death is associated with older age following COVID-19 infection. Importantly, it seems older patients with comorbidities such as cardiovascular disease (CVD), in particular IHD, diabetes and hypertension, are at the highest risk of mortality following COVID-19 infection. The evidence is sparse on the optimal care of older patients with ACS with lack of robust randomised controlled trials. In this setting, with the serious threat imposed by the COVID-19 pandemic in the context of rapidly evolving knowledge with much unknown, it is important to weigh the risks and benefits of treatment strategies offered to older patients. In cases where risks outweigh the benefits, it might not be an unreasonable option to treat such patients with a conservative or a palliative approach. Further evidence to elucidate whether invasive management is beneficial in older patients with ACS is required out-with the COVID-19 pandemic. Though it is hoped that the actual acute phase of COVID-19 infection will be short lived, it is vital that important clinical research is continued, given the long-term benefits of ongoing clinical research for patients with long-term conditions, including CVD. This review aimed to evaluate the challenges and the management strategies in the care of older patients presenting with ACS in the context of the COVID-19 pandemic.
On March 28, 2020, the Office of Civil Rights at the Department of Health and Human Services (HHS) opened investigations into recently released critical care crisis triage protocols. Disability rights advocates are urging Congress to prohibit crisis triage based on “anticipated or demonstrated resource-intensity needs, the relative survival probabilities of patients deemed likely to benefit from medical treatment, and assessments of pre- or post-treatment quality of life.”
Many critically ill patients with COVID-19 need specialty level palliative care to manage symptoms, conduct goals of care conversations, and facilitate medical decision making in ethically and emotionally charged situations. During the apex of the COVID-19 crisis in New York, the Adult Palliative Care Service at Columbia University Irving Medical Center (CUIMC)/NewYork-Presbyterian (NYP) received a 7-fold increase in consultation requests. This unprecedented increase in demand outpaced the palliative care team's ability to respond. We describe the rapid development and implementation of a scalable virtual consultation model staffed by out-of-state palliative care specialist volunteers.
There is a concern that as a result of COVID-19 there will be a shortage of ventilators for patients requiring respiratory support. This concern has resulted in significant debate about whether it is appropriate to withdraw ventilation from one patient in order to provide it to another patient who may benefit more. The current advice available to doctors appears to be inconsistent, with some suggesting withdrawal of treatment is more serious than withholding, while others suggest that this distinction should not be made. We argue that there is no ethically relevant difference between withdrawing and withholding treatment and that suggesting otherwise may have problematic consequences. If doctors are discouraged from withdrawing treatment, concern about a future shortage may make them reluctant to provide ventilation to patients who are unlikely to have a successful outcome. This may result in underutilisation of available resources. A national policy is urgently required to provide doctors with guidance about how patients should be prioritised to ensure the maximum benefit is derived from limited resources.
Je me sens en grande santé. Pourtant, quand le diagnostic de SLA est posé, toute ma vie est modifiée. Mon corps, lentement, me trahit. Par la musique, la littérature et la pratique de la peinture, j'ai trouvé une nouvelle façon de vivre. Bob Dylan, Kafka... Je replonge dans mes souvenirs de jeunesse, les confronte à l'ici et maintenant. J'ai décidé de faire un bon usage de ma maladie.
Essai d'une approche comparative entre le droit français et le droit sénégalais. L'une des particularités du 21e siècle durant ces dernières décennies est indéniablement le progrès scientifique qui a réalisé de grandes prouesses dans plusieurs domaines, comme celui de la médecine. La personne humaine est au coeur de ces bouleversements scientifiques et la question de sa vulnérabilité se pose lorsqu'il s'agit plus particulièrement de l'enfant malade.
Au-delà des traitements médicaux, la protection de l'enfant malade implique une prise en compte de la recherche médicale et comporte dès lors des enjeux internationaux qui méritent une étude comparative notamment entre le droit français et le droit sénégalais.
"Papa, Maman, Faustine, ne vous inquiétez pas pour moi, je n'ai pas peur. Prenez soin de vous. Je vous aime." Ces mots sont ceux d'Emilie. Elle les écrit lorsqu'elle apprend qu'après deux années de combat contre le cancer, plus aucun traitement ne peut prolonger sa vie. A travers ces quelques mots, elle donne une leçon de vie à sa famille et à ses proches : elle fait le choix d'être heureuse pendant le peu de temps qui lui reste à vivre.
Elle souhaite partager son enjouement, son courage et sa force avec ceux qui l'ont toujours aimée et soutenue. Jusqu'où ira-t-elle dans le combat qu'elle mène contre la maladie ? Comment vivra-t-elle ses derniers instants ? Ses proches réussiront-ils à accepter la situation et à surmonter cette douloureuse épreuve ?
Cet ouvrage aborde la nécessité de réfléchir ensemble au sens du prendre soin et du fait d'être soigné pour mettre en valeur l'importance d'une implication personnelle de chacun dans la relation en vue de soins de qualité.
[Extrait Résumé éditeur]
Un guide pratique et parfaitement à jour pour répondre à toutes vos questions : Comment embaucher une aide à domicile ? Comment aménager son logement et bénéficier de la téléassistance ? Comment choisir l'établissement d'accueil le mieux adapté ? Quel est le coût d'un EHPAD ? Quelles sont les aides financières ? Quels congés pour aider un proche dépendant ? Quelle protection juridique pour une personne fragilisée ?