BACKGROUND: Accessible indicators of aggressiveness of care at the end-of-life are useful to monitor implementation of early integrated palliative care practice. To determine the intensity of end-of-life care from exhaustive data combining administrative databases and hospital clinical records, to evaluate its variability across hospital facilities and associations with timely introduction of palliative care (PC).
METHODS: For this study designed as a decedent series nested in multicentre cohort of advanced cancer patients, we selected 997 decedents from a cohort of patients hospitalised in 2009-2010, with a diagnosis of metastatic cancer in 3 academic medical centres and 2 comprehensive cancer centres in the Paris area. Hospital data was combined with nationwide mortality databases. Complete data were collected and checked from clinical records, including first referral to PC, chemotherapy within 14 days of death, >=1 intensive care unit (ICU) admission, >=2 emergency department visits (ED), and >= 2 hospitalizations, all within 30 days of death.
RESULTS: Overall (min-max) indicator values as reported by facility providing care rather than the place of death, were: 16% (8-25%) patients received chemotherapy within 14 days of death, 16% (6-32%) had >=2 admissions to acute care, 6% (0-15%) had >=2 emergency visits and 18% (4-35%) had >=1 intensive care unit admission(s). Only 53% of these patients met the PC team, and the median (min-max) time between the first intervention of the PC team and death was 41 (17-112) days. The introduction of PC > 30 days before death was independently associated with lower intensity of care.
CONCLUSIONS: Aggressiveness of end-of-life cancer care is highly variable across centres. This validates the use of indicators to monitor integrated PC in oncology. Disseminating a quality audit-feedback cycle should contribute to a shared view of appropriate end-of-life care objectives, and foster action for improvement among care providers.
Les soins palliatifs sont encore souvent mal connus tant du grand public que des professionnels de santé. Sous un abord psychanalytique, cet ouvrage propose d'en dessiner les contours. Il en pose les jalons, décrit la fonction d'accompagnant de la personne en fin de vie et offre des pistes de compréhension des principales problématiques par l'exposé d'une clinique variée. Illustré de nombreux exemples, il offre les outils à tous les intervenants pour une meilleure prise en charge du patient, et de son entourage.
The recent controversy around the hospital end of life care has highlighted the vulnerability of dying patients and their families. However, little is known about how social workers provide support and intervention around the end of life in the hospital. Eight hospital social workers provided qualitative descriptions of their clinical practice for adult patients and their families. Highlighting a theoretical orientation towards a person-in-environment approach, social workers develop unique interventions to contribute to multidisciplinary care. Findings emphasize the need to prepare social work students and clinicians for the reality of working with end of life issues.
The patient who enters at the intensive care unit (ICU) usually does because of health conditions that are sometimes irreversible and lead to death, and the care at the end of life becomes the main factor of this situation; therefore, the aim of this article was to understand the meaning of the experience of giving care to families at the end of life in an ICU. For this reason, a qualitative, hermeneutic phenomenological research was carried out. For the data collection, a semi-structured interview was conducted to 18 participants, and the results were returned to each of the participants in order to validate each of the categories and interpretations. Among these results, two main categories were identified: emotional response of the nurse to the family and nursing care to the family of patients at the end of life. It was concluded that the nurses working at the ICU are facing aspects related to the end of life that generates emotional and psychological burden; additionally, they do not have specific training in this subject, especially in relation to the care of the families in this situation, for which they provide this care based on empiricism.
BACKGROUND: The use of noninvasive ventilation (NIV) in the emergency setting to reverse hypercapnic coma in frail patients with end-stage chronic respiratory failure and do-not-intubate orders remains a questionable issue given the poor outcome of this vulnerable population. We aimed to answer this issue by assessing not only subjects' outcome with NIV but also subjects' point of view regarding NIV for this indication.
METHODS: A prospective observational case-control study was conducted in 3 French tertiary care hospitals during a 2-y period. Forty-three individuals who were comatose (with pH < 7.25 and PaCO2 > 100 mm Hg at admission) were compared with 43 subjects who were not comatose and who were treated with NIV for acute hypercapnic respiratory failure. NIV was applied by using the same protocol in both groups. They all had a do-not-intubate order and were considered vulnerable individuals with end-stage chronic respiratory failure according to well-validated scores.
RESULTS: NIV yielded similar outcomes in the 2 groups regarding in-hospital mortality (n = 12 [28%] vs n = 12 [28%] in the noncomatose controls, P > .99) and 6-month survival (n = 28 [65%] vs n = 22 [51%] in the noncomatose controls, P = .31). Despite poor quality of life scores (21.5 ± 10 vs 31 ± 6 in the awakened controls, P = .056) as assessed by using the VQ11 questionnaire 6 months to 1 y after hospital discharge, a large majority of the survivors (n = 23 [85%]) would be willing to receive NIV again if a new episode of acute hypercapnic respiratory failure occurs.
CONCLUSION: In the frailest subjects with supposed end-stage chronic respiratory failure that justifies treatment limitation decisions, it is worth trying NIV when acute hypercapnic respiratory failure occurs, even in the case of extreme respiratory acidosis with hypercapnic coma at admission.
Delivering comprehensive end-of-life care to dying patients must involve addressing physical symptoms and psychosocial concerns. Care pathways have been introduced to support health care teams in delivering this care. This retrospective chart review explores the contributions of the Spiritual Care Team in the care of dying patients. They offer a range of interventions which include supportive care, religious and spiritual support. This study was one step towards appreciating the contributions of the Spiritual Care Team.
BACKGROUND: Research demonstrates that the attitudes of religious physicians toward end-of-life care treatment can differ substantially from their nonreligious colleagues. While there are various religious perspectives regarding treatment near the end of life, the attitudes of Muslim physicians in this area are largely unknown.
OBJECTIVE: This article attempts to fill in this gap by presenting American Muslim physician attitudes toward end-of-life care decision-making and by examining associations between physician religiosity and these attitudes.
METHODS: A randomized national sample of 626 Muslim physicians completed a mailed questionnaire assessing religiosity and end-of-life care attitudes. Religiosity, religious practice, and bioethics resource utilization were analyzed as predictors of quality-of-life considerations, attitudes regarding withholding and withdrawing life-sustaining treatment, and end-of-life treatment recommendations at the bivariate and multivariable level.
RESULTS: Two-hundred fifty-five (41% response rate) respondents completed surveys. Most physicians reported that religion was either very or the most important part of their life (89%). Physicians who reported consulting Islamic bioethics literature more often had higher odds of recommending active treatment over hospice care in an end-of-life case vignette. Physicians who were more religious had higher odds of viewing withdrawal of life-sustaining treatment more ethically and psychologically challenging than withholding it and had lower odds of agreeing that one should always comply with a competent patient's request to withdraw life-sustaining treatment.
DISCUSSION: Religiosity appears to impact Muslim physician attitudes toward various aspects of end-of-life health-care decision-making. Greater research is needed to evaluate how this relationship manifests itself in patient care conversations and shared clinical decision-making in the hospital.
BACKGROUND: Little is known about the patterns of end-of-life (EOL) health care for older Mexican-Americans with or without a diagnosis of Alzheimer's disease and related dementias (ADRD). Our objective was to investigate the frequency of acute hospital admissions, intensive care unit (ICU) use, and ventilator use during the last 30-days of life for deceased older Mexican-American Medicare Beneficiaries with and without an ADRD diagnosis.
METHODS: We used Medicare claims data linked with survey information from 1,090 participants (mean age of death 85.1 years) of the Hispanic EPESE. Multivariable logistic regression models were used to estimate the odds for hospitalization, ICU use, and ventilator use in the last 30-days of life for decedents with ADRD compared to those without ADRD. Generalized linear models were used to estimate risk ratio for length of hospital stay (LOS).
RESULTS: Within the last 30-days of life, 64.5% of decedents had an acute hospitalization (59.1% ADRD, 68.3% no ADRD), 33.9% had an ICU stay (31.3% ADRD, 35.8% no ADRD), and 17.2% used a ventilator (14.9% ADRD, 18.8% no ADRD). ADRD was associated with significantly lower hospitalizations (OR=0.67, 95% CI=0.50-0.89) and shorter LOS (RR=0.77, 95% CI=0.65-0.90).
CONCLUSION: Hospitalization, ICU stay, and ventilator use are common at the end of life for older Mexican-Americans. The lower hospitalization and shorter LOS of decedents with ADRD indicate a modest reduction in acute care use. Future research should investigate the impact of EOL planning on acute-care use and quality of life in terminally ill Mexican-American older adults.
To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.
BACKGROUND: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.
OBJECTIVE: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.
METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.
RESULTS: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.
CONCLUSIONS: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
OBJECTIVE: Terminally ill patients at their end-of-life (EOL) phase attending the emergency department (ED) may have complex and specialized care needs frequently overlooked by ED physicians. To tailor to the needs of this unique group, the ED in a tertiary hospital implemented an EOL pathway since 2014. The objective of our study is to describe the epidemiological characteristics, symptom burden and management of patients using a protocolized management care bundle.
METHODS: We conducted an observational study on the database of EOL patients over a 28-month period. Patients aged 21 years and above, who attended the ED and were managed according to these guidelines, were included. Clinical data were extracted from the hospital's electronic medical records system.
RESULTS: Two hundred five patients were managed under the EOL pathway, with a slight male predominance (106/205, 51.7%) and a median age of 78 (interquartile range 69-87) years. The majority were chronically frail (42.0%) or diagnosed with cancer or other terminal illnesses (32.7%). The 3 most commonly experienced symptoms were drowsiness (66.3%), dyspnea (61.5%), and fever (29.7%). Through the protocolized management care bundle, 74.1% of patients with dyspnea and/or pain received opiates while 59.5% with copious secretions received hyoscine butylbromide for symptomatic relief.
CONCLUSION: The institution of a protocolized care bundle is feasible and provides ED physicians with a guide in managing EOL patients. Though still suboptimal, considerable advances in EOL care at the ED have been achieved and may be further improved through continual education and enhancements in the care bundle.
As the Medicare program struggles to control expenditures, there is increased focus on opportunities to manage patient populations more efficiently and at a lower cost. A major source of expense for the Medicare program is beneficiaries at end of life. Estimates of the percentage of Medicare costs that arise from patients in the last year of life differ, ranging from 13% to 25%, depending on methods and assumptions. We analyze the most recently available Medicare Limited Data Set to update prior studies of end-of-life costs and examine different methods of performing this calculation. Based upon these findings, we conclude that higher estimates that take into account the spending over the 12 months leading up to death more accurately reflect the full cost of a patient's last year of life. Comparing current year costs of decedents with Medicare's current year costs understates the full budgetary impact of end-of-life patients. Because risk-taking entities such as Medicare Advantage plans and Accountable Care Organizations (ACOs) need to reduce costs while improving the quality of care, they should initiate programs to better manage the care of patients with serious or advanced illness. We also calculate costs for beneficiaries dying in different settings and conclude that more effective use of palliative care and hospice benefits offers a lower cost, higher quality alternative for patients at end of life.
INTRODUCTION: Systematic integration of palliative care in a surgical setting is important, but has yet to be achieved. Despite evidence of early palliative care improving patients' quality of life, hospice utilization remains low. Through an integrated palliative care-urology clinic, we aim to assess the effect of early outpatient palliative care on hospice utilization, health-related quality of life (HRQOL) and satisfaction in patients with advanced urological cancers.
METHODS: Participants were recruited from 2012 through 2016 in the Greater Los Angeles Veterans Affairs Hospital. We partnered with palliative care clinicians to develop an integrated urology-palliative care clinic, where participants were seen by the palliative care team on the same day as their urological visit. The 12-item Short-Form Survey, Patient Satisfaction Questionnaire Short-Form, Patient Health Questionnaire, and Brief Pain Inventory were administered at initial and subsequent visits. Follow-up questionnaire results were compared between baseline and the 2 follow-up visits, and hospice utilization rates were assessed.
RESULTS: Fifty-three participants completed baseline questionnaires. Of those 22 (42%) patients completed at least one follow-up assessment. The median time for the first and second follow-up visits was 2.9 and 7.8 months, respectively. There were no significant differences in HRQOL and satisfaction between baseline and subsequent follow-up visits. A total of 36 (68%) of 53 participants who were enrolled at the start of the study were deceased. Of those, 29 (81%) expired within a home or inpatient hospice.
CONCLUSIONS: Rates of hospice use were high in an integrated palliative care-urology model. Health-related quality of life and satisfaction did not worsen over time.
Despite the frequency, complexity, and intensity of communication that occurs between nurses, patients, and families, palliative care nurses often struggle with end-of-life communication. The primary goal of this quality improvement project was to increase nurse confidence and satisfaction engaging in end-of-life communication following the implementation of the COMFORT model; the secondary goal was to improve patient-family satisfaction with care provided in the palliative care unit. Fourteen palliative care nurses attended a 4-hour course to learn the tenets of the COMFORT model and practice through role-play exercises. A repeated-measures design was used to measure nurse confidence and satisfaction precourse, postcourse, and 3 months postcourse. A between-subjects pre-post design was used to compare family satisfaction survey scores in the 3-month period before versus the 3 months after implementation. Analysis revealed a statistically significant increase in all measures of nurse confidence and satisfaction from precourse to postcourse and from precourse to 3 months postcourse. There was no statistical difference between the family satisfaction survey scores before versus after training, although survey results were generally high at baseline and most respondents rated palliative services with the best possible response. This project demonstrates that COMFORT model training increased confidence and satisfaction of palliative care nurses engaged in end-of-life communication and demonstrates potential for use in other clinical areas that do not specialize in end-of-life nursing (eg, critical care) but find themselves in need of the communications skills to address end-of-life care.
La question du transfert nourrit abondamment la littérature des soins. Face à un patient en fin de vie, les soignants, ébranlés affectivement, perdent parfois leurs repères thérapeutiques. En s’appuyant sur les principes du contre-transfert, ils peuvent espérer accompagner ces patients avec toute l’empathie requise, sans se perdre dans la complexité des enjeux transférentiels.
Nurses have unique clinical responsibilities and opportunities with patients that require strong communication skills. However, many nurses lack effective communication skills and often receive inadequate palliative care communication training and education. To promote communication education for palliative care nurses, the End-of-Life Nursing and Education Consortium created a Communication Curriculum for nurses and developed an in-person train-the-trainer course. Organized by the 8 domains of the National Consensus Project Guidelines for Quality Palliative Care, a 1-day course was provided in August 2018 to 46 nurses representing 38 institutions. Completion of precourse surveys demonstrated participants’ institutional resources for palliative care communication education and their greatest communication challenges. Immediate postcourse evaluations demonstrated that the course improved nurses’ knowledge and confidence in communication and their ability to educate others. Palliative care nurses can incorporate communication skills into their practice and provide communication skills training to their institution.
Patients often affirm the goal to pursue comfort at the end of life, although clinicians may struggle with how best to provide comfort and face the ethical dilemma of treating or allowing a suspected infection to unfold. Treating an infection at the end of life does not allow for uniform improvement in symptoms and more time with family and friends. Additionally, there is potential for burden to the patient or health care system and treatment may occur to the exclusion of other comfort measures. Currently, the practice of providing or forgoing antibiotics at the end of life is variable, and literature supporting best practices can be contradictory. Data to support the use or withholding of treatment have been scant and vary across settings and patient populations. We review common obstacles providers face, prognostication tools that may assist in clinical decision making, the ethical support for withholding therapy, and how to factor in potential burdens of treatment. We propose that nurses, whether at the bedside in an acute care or nursing facility or in the home setting as a member of the interdisciplinary home hospice team, are uniquely qualified to help patients and families navigate this challenging clinical decision.
Effective communication between clinicians, patients, and families at end of life is associated with better clinical outcomes. A large body of literature describes the key skills needed for effective communication. We believe that clinicians could also benefit from communication skills more commonly associated with business or law negotiations. We will demonstrate via analogy (i.e. buying a house) how four key business/law negotiation techniques – 1. Determine your Reservation and Aspiration Value; 2. Separate People from their Positions; 3. Separate Positions from Interests; and 4. Logrolling of Interests – can be applied to a difficult family meeting in a home hospice patient.
La prise en charge d’un patient en fin de vie à son domicile demande une réflexion pluridisciplinaire de tous les intervenants. L’information de la personne et de ses proches ainsi que la prise en compte de tous les aspects de l’accompagnement doivent mener à des prises de décision collégiales. La prise en charge est alors globale autour d’un projet de soins concerté.