Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships.

Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .

Implementation of a Perinatal Hospice Program.

BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHODS: The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULTS: The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.

Limitación de soporte vital. Cuidados paliativos y final de vida en UCI / Limitation of life support. Palliative care and end of life in ICU / Limitació de suport vital. Cures pal·liatives i final de vida a l' UCI

La misión de los cuidados intensivos es restaurar la situación basal de salud libre de discapacidad severa atendiendo al principio bioético de beneficencia, respetando la dignidad y voluntad del paciente de ser tratado lo que vendría a ser atender al principio bioético de autonomía, y realizando todo esto de una forma adecuada a la mejor evidencia actual, justa y sostenible atendiendo a los principios de no maleficencia y de justicia. Cuando no es posible es cuando los profesionales tienen la obligación ética de iniciar un diálogo de manera respetuosa y prudente con el  paciente y/o la familia y el resto de profesionales implicados (atención primaria, enfermería, especialistas...etc.) de cara a llegar a un consenso sobre limitar los tratamientos de soporte vital y/o adecuar  los cuidados y continuar el tratamiento con un plan terapéutico de cuidados dirigidos al confort, control de síntomas y a mejorar la calidad de vida (Plan de cuidados paliativos) para preservar la dignidad del paciente, evitar el sufrimiento y proporcionar un tratamiento compasivo de soporte y acompañamiento durante el proceso de muerte si se diera el mismo atendiendo al paciente y a la familia con el máximo cuidado y respeto en un marco de humanización de la salud. Atender de forma excelente el final de la vida significa dignificar a las personas que están pasando por ese proceso, aportar un valor extraordinario de humanidad y debe ser un objetivo prioritario actual en nuestro quehacer diario en las unidades de cuidados intensivos

The mission of intensive care is to restore the baseline health situation free of severe disability by following the bioethical principle of beneficence, respecting the dignity and willingness of the patient to be treated what would be to attend to the bioethical principle of autonomy, and doing all this in a manner appropriate to the best current, fair and sustainable evidence, taking into account the principles of non-maleficence and justice. When it is not possible, it is when professionals have the ethical obligation to initiate a dialogue in a respectful and prudent manner with the patient and / or the family and the rest of the professionals involved (primary care, nursing, specialists ... etc.) Face to reach a consensus on limiting life support treatments and / or adapt care and continue treatment with a therapeutic plan of care aimed at comfort, symptom control and improving the quality of life (Palliative Care Plan) to preserve the dignity of the patient, avoid suffering and provide a compassionate support and support during the death process if the same were given to the patient and the family with the utmost care and respect in a framework of humanization of health. Addressing the end of life in an excellent way means dignifying the people who are going through this process, providing an extraordinary value of humanity and must be a current priority in our daily work in the intensive care units

La finalitat de la vigilància intensiva és restaurar la situació basal de salut lliure de discapacitat severa atenent al principi bioètic de beneficència, respectant la dignitat I voluntat del pacient de ser tractat, cosa que vindria a ser atendre al principi bioètic d'autonomia, I realitzant tot això d'una forma adequada a la millor evidència actual, justa I sostenible, atesos els principis de no maleficència I de justícia. Quan tot això no és possible és quan els professionals tenen l'obligació ètica d'iniciar un diàleg de manera respectuosa I prudent amb el pacient i/o la família I amb la resta de professionals implicats (atenció primària, infermeria, especialistes...etc.) de cara a arribar a un consens sobre limitar els tractaments de suport vital i/o adequar les cures I continuar el tractament amb un pla terapèutic de cures dirigides al confort, el control de símptomes I a millorar la qualitat de vida (Pla de Cures Pal·liatives) per a preservar la dignitat del pacient, evitar el sofriment I proporcionar-li un tractament compassiu de suport I acompanyament durant el procés de mort, atenent el pacient I a la família amb la màxima cura I respecte en un marc d'humanització de la salut. Atendre de forma excel·lent el final de la vida significa dignificar les persones que están passant per aquest procés, aportar un valor extraordinari d'humnaitat I ha de ser un objectiu prioritari actual en el nostre qufer diari en les unitats de vigilancia intensiva

A morte como o melhor interesse da criança: uma proposta a partir dos casos Charlie Gard e Alfie Evans / La muerte como el mejor interés del niño: una propuesta a partir de los casos Charlie Gard y Alfie Evans / Death as the best interest of the child: A proposal from Charlie Gard and Alfie Evans cases / La mort com el millor interès del nen: una proposta a partir dels casos Charlie Gard i Alfie Evans

Os recentes casos envolvendo a morte de crianças em razão da suspensão do suporte vital, mesmo com a oposição dos pais, demonstram a necessidade de um debate transdisciplinar sobre o conteúdo do princípio do melhor interesse da criança e a extensão dos poderes-deveres decorrentes da autoridade parental. Poderia a morte, em determinadas situações, representar o melhor interesse da criança? Partindo dos casos de Charlie Gard e Alfie Evans, este artigo tem por objetivo a busca de parâmetros para a tomada de decisões voltadas à terminalidade da vida infantil. Por meio de uma revisão bibliográfica interdisciplinar, buscam-se fundamentos para confirmar ou refutar a hipótese de que a morte pode ser configurada como o melhor interesse da criança em contextos específicos

Los recientes casos que involucran la muerte de niños en razón de la suspensión del soporte vital, incluso con la incisiva oposición de los padres, demuestran la necesidad de un debate transdisciplinario sobre el contenido del principio del mejor interés del niño y la extensión de los poderes-deberes derivados de la autoridad parental. ¿Podría la muerte, en determinadas situaciones, representar el mejor interés del niño? A partir de los casos Charlie Gard y Alfie Evans, este artículo objetiva la búsqueda de parámetros para la toma de decisiones dirigidas a la terminalidad de la vida infantil. Por medio de una revisión bibliográfica interdisciplinaria, se buscan fundamentos para confirmar o refutar la hipótesis de que la muerte puede ser configurada como el mejor interés del niño en contextos específicos

The recent cases involving the death of children due to the suspension of life support, even with the strong opposition of their parents, demonstrate the need for a transdisciplinary debate on the content of the principle of the best interests of the child and the extension of the powers-duties arising from the parental authority. Could death, in certain situations, represent the best interest of the child? Based on the cases of Charlie Gard and Alfie Evans, this article aims to search for parameters for the decision-making in situations of terminally ill infants. Through an interdisciplinary bibliographical review, it is sought the confirmation or refutation of the hypothesis that death can be configured as the best interest of the child in specific contexts

Els recents casos que involucren la mort de nens a causa de la suspensió del suport vital, fins i tot amb l'enèrgica oposició dels pares, demostren la necessitat d'un debat transdisciplinar sobre el contingut del principi del millor interès del nen i l'extensió dels poders-deures derivats de l'autoritat parental. Podria la mort, en determinades situacions, suposar el millor interès del nen? A partir dels casos Charlie Gard i Alfie Evans, aquest article objectiva la recerca de paràmetres per a la presa de decisions dirigides al final de vida infantil. Per mitjà d'una revisió bibliogràfica interdisciplinària, es pretèn confirmar o refutar la hipòtesi que la mort pot ser configurada com el millor interès del nen en contextos específics

Palliative care clinicians' knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS).

OBJECTIVES: To examine palliative care clinicians' level of knowledge of the law regarding the use of the Deprivation of Liberty Safeguards (DoLS). METHODS: Regional postal survey of palliative care clinicians working in hospices in the East of England, undertaken in April 2015. Clinicians' level of knowledge was assessed by their response to 7 factual questions. Data regarding self-reported levels of confidence in applying the Safeguards was collected, alongside information regarding the number of times they had used DoLS in practice. A free-text section invited additional comments from participants. RESULTS: There were 47 responses from 14 different organisations; a response rate of 68%. Respondents included consultants, specialty and associate specialists, registrars, nurses and social workers. Higher self-reported confidence and training in the use of DoLS was associated with higher factual knowledge. Consultants had the highest level of knowledge, training and experience. Doctors of other grades, nurses and social workers recorded less knowledge and experience and scored lower in the knowledge sections. The free-text comments revealed difficulty applying the Safeguards in practice, particularly among the consultant responses, based around several themes: insufficient guidance on how to use the Safeguards, process after death, uncertainty as to relevance to palliative care and delays in assessments. CONCLUSIONS: Clinicians working in palliative care have good levels of knowledge of the DoLS. Despite this concerns were raised, particularly by consultants; uncertainty as to when they should be used and the relevance of the Safeguards in clinical practice. Further guidance should be given to clinicians working in this specialty to ensure that clinical practice is both lawful and in the patients' best interests.

El cuidado humanizado en la muerte por COVID-19: a propósito de un caso / Humanized care in a death for covid-19: a case study

La población mundial está sufriendo una pandemia por infección del virus SARS-Cov-2, que provoca la enfermedad COVID-19. En España, la tasa de crecimiento de la epidemia es del 6,79% desde la activación del estado de alarma y un porcentaje de defunciones del 9,07% del total de infectados. Las recomendaciones del Ministerio de Sanidad para profesionales de la salud en contacto con personas infectadas, o sospecha de ello, incluyen la colocación de dispositivos de protección individual (mascarilla FPP2, guantes, bata impermeable, gorro, y gafas protectoras o pantalla). Una vez colocado todo el material, es necesario reflexionar acerca de la humanización de los cuidados enfermeros a las personas en situación agónica infectadas porCOVID-19, a propósito de un caso. La pretensión es la puesta en valor del pensamiento enfermero para salvar esa distancia, y mantener unos cuidados lo más humanos y cercanos posibles, al final de la vida

The world population is experiencing a pandemic due to infection with the SARS-Cov-2 virus, which causes the COVID-19 disease. In Spain, the growth rate of the epidemic is 6.79% since the alarm activation with 9,1% of deaths of the total infected. Recommendations of the National Government to prevent health professional contagion include the placement of personal protection devices (FPP2 mask, gloves, waterproof gown, hat, and protective glasses or screen). Once all the material is in place, it is necessary to argue about the humanization of nursing caring in people suffering dying situation, who are infected with COVID-19, regarding a clinical case. The aim is to enhance nursing thinking to bridge that distance, and maintain care as human and close as possible, at the end of life

"Death is inevitable - a bad death is not" report from an international workshop.

Palliative care is an approach meant to improve the quality of life of patients facing life-threatening illness and to support their families. An international workshop on palliative care took place in Caesarea, Israel under the auspices of the National Institute for Health Policy Research on July 4-5th, 2018, with the goal of discussing challenges to the development and integration of palliative care services in Israel. At the workshop, both national and international figures in the field of palliative care and health policy addressed several issues, including truth telling, religious approaches to end of life care, palliative care in the community, pediatric palliative care, Israel's Dying Patient Act, the Ministry of Health's National Plan for palliative care, and challenges in using advance directives. We summarize the topics addressed, challenges highlighted, and directions for further advancement of palliative care in the future, emphasizing the critical role of the Ministry of Health in providing a framework for development of palliative care.

Evaluación de la atención sanitaria en el proceso de muerte de pacientes con patologías respiratorias / An evaluation of health care in the dying process of patients with respiratory disease

ANTECEDENTES Y OBJETIVO: A pesar del elevado número de fallecimientos, en las instituciones sanitarias no siempre se alcanzan estándares de calidad en el proceso de la muerte. El propósito de este estudio fue evaluar la calidad de la atención sanitaria al final de la vida en pacientes ingresados por patología respiratoria en un hospital de agudos. MATERIAL Y MÉTODO: Estudio transversal descriptivo de periodo en el que se analizaron 80 pacientes fallecidos. Las variables se establecieron atendiendo las disposiciones recogidas en la Ley 2/2010, de 8 de abril, de Derechos y Garantías de la dignidad de la Persona en el Proceso de la Muerte aprobada por el Parlamento Andaluz. RESULTADOS: Alto grado de cumplimiento en la evaluación y tratamiento del dolor (95 %) y en la posibilidad de estar acompañado (93,8 %), frente al bajo cumplimiento en la oferta para el seguimiento domiciliario (3,8 %) e información sobre cuidados paliativos (7,5 %). Mayor calidad en la atención global recibida en pacientes más jóvenes. El género y tipo de patología no arrojó diferencias significativas. CONCLUSIONES: Se detectan áreas de mejoras en la atención al final de la vida que requieren estrategias de implementación multicomponentes que favorezcan cambios en la práctica sanitaria

BACKGROUND AND OBJECTIVE: Although a high proportion of seriously ill patients die in hospital, they do not always receive the high standard of care they require. The purpose of this study was to assess the quality of palliative care provided to seriously ill patients hospitalized for respiratory disease. Study population and methods: A cross-sectional, descriptive study was performed on 80 deceased patients. Variables were established in accordance with the Spanish Law 2/2010, of April 8th, on Personal Rights and Guarantees to Die in Dignity, approved by the Parliament of Andalusia. RESULTS: High adherence to protocols was observed in relation to pain assessment and relief (95 %), and to enabling family members to accompany the patient (93.8 %). In contrast, palliative home care was rarely offered (3.8 %), and scarce information was provided on palliative care (7.5 %). General palliative care improved when patients were younger. No significant differences were observed based on patient gender or type of disease. CONCLUSIONS: Areas for improvement were identified in end-of-life care, which require multicomponent implementation strategies favoring changes in health practice

REALIZATION OF THE HUMAN RIGHT TO PALLIATIVE CARE IN UKRAINE: PROBLEMS AND LEGAL ISSUES (REVIEW).

The aim of the study is to analyze individual legal problems of the implementation of the human right to palliative care. To achieve this goal, statistical data on the number of palliative patients, their access to medical services were analyzed. The absence of reasons for limiting the patient's right to receive palliative care, as such a right is a fundamental human right, is substantiated. An analysis of the understanding of the legal construction of "palliative care" in the scientific literature, national and international legal documents was carried out. It was revealed that the terms "hospice care", "end-of-life-care", "respite care" are components of a precise definition - "palliative care". Two groups of subjects that ensure the human right to this type of medical care are identified, their powers are indicated. In the course of the research it was established that palliative patients, more often than other patients, need medical care, including children. This category of patients faces the following problems: incomplete providing of high-quality free medical palliative care; insufficient number of palliative and hospice departments for such patients; palliative care does not meet international standards (logistical support for palliative departments, there are no specialists of a multidisciplinary team); there is no special training for medical personnel working with incurable patients; painkillers (non-narcotic and narcotic) drugs for relieving pain syndrome of such patients are not provided in full volume; there is no cooperation of state authorities in the field of palliative care with public and charitable organizations; palliative patients do not have access to free legal services (pensions, inheritance).

Face-to-Face Documentation Using the FACE-2-FACE Method.

Nurse practitioners play an integral part of the face-to-face visit. The face-to-face visit requirement came into effect on January 11, 2011, for hospice patients entering their third or later benefit period. The face-to-face requirement was created because of concerns regarding high numbers of hospice patients with lengths of stay greater than 180 days, in addition to concerns the physician was not as active in the care of the hospice patient as required. Face-to-face visits can be completed by the hospice physician or nurse practitioner employed by the hospice agency. The face-to-face narrative includes a clear title, date, clinical findings demonstrating continued hospice eligibility and a signature of the individual completing the face-to-face visit. In addition, an attestation statement stating that the encounter was completed with the patient and the clinical findings were provided to the certifying physician is also a requirement of the narrative. Documenting clinical findings that demonstrate hospice eligibility can be challenging. Using the FACE-2-FACE method can help clarify the clinical findings necessary to demonstrate the patient's continued hospice eligibility.

State Legislation to Prevent Diversion of Opioids in Hospice Programs: A Deeper Look Into Ohio Law.

The problem of opioid diversion and its contribution to the opioid epidemic are well known nationally, existing even within hospice care. Proper disposal of opioids may be a critical factor in reducing diversion. In 2014, Ohio implemented legislation requiring a hospice employee to destroy or witness disposal of all unused opioids within a patient's plan of care. The purpose of this study was to determine the impact of Ohio Revised Code 3712.062 on hospice programs' policies and procedures to prevent opioid diversion in the home. Directors of Ohio-licensed hospices were surveyed to assess the percentage of programs with a written policy in place for disposal of opioids and to calculate a compliance score based on responses to survey questions assessing compliance with legislation components. Fifty-two surveys were completed (39.4%). All survey respondents reported having a written policy in place. A 95.5% average compliance score was calculated, with the largest disparity occurring with timing of opioid disposal. While Ohio Revised Code 3712.062 requires opioid disposal at the time of patient's death or when no longer needed by the patient, only 84% of respondents report disposing opioids upon discontinuation. Overall, a high compliance rate was seen among hospice programs indicating such regulation is manageable to meet.

A Farewell to Falsity: Shifting Standards in Medicare Fraud Enforcement.

For the better part of a decade, Americans have had a front-row seat to a fervent and turbulent debate over the future of their health care system. The passage of the Patient Protection and Affordable Care Act of 2010 (ACA), the most comprehensive health reform effort since the mid-1960s, ushered in a new era in health law and policy, granting millions of Americans access to health care. After multiple legal challenges and congressional efforts that ultimately failed to slay the law, the ACA had become entrenched by the end of the Obama administration, even though pieces of the law had failed to work exactly as planned. Now, with the surprising election of President Donald Trump, reenergized Republicans are targeting the law once more, and it suddenly appears more vulnerable than ever. Dynamic uncertainty again permeates the national debate. Although most powerful protections of the ACA may evaporate--no small event, to be sure--the value-based era which it unleashed seems here to stay. Indeed, this era--focused on efficiency, standardization, and quality within American medicine--has just begun to bear fruit. Illustrated prominently by recent changes to Medicare that alter how the program pays its doctors for services they provide to its beneficiaries, America is moving away from the old strictures of fee-for-service medicine. At the same time, traditional legal tools, and particularly the federal government's most prominent anti-fraud tool, the civil federal False Claims Act (FCA), seem to be facing new limits. This has been recently evident in medical necessity-based fraud cases, and particularly highly publicized fights that have targeted the burgeoning industry of hospice care. This Article tracks this development, ultimately arguing that the move to "reimbursement-based regulation" may be a positive step in finally reining in the worst excesses of American health care. But it also cautions against the deceptive simplicity of allowing medical heterogeneity and clinical complexity to prevent application of America's most powerful anti-fraud tools to its medical industry. Just because reimbursement policy has shifted to shoulder some of the regulatory burden of overtreatment does not mean that health care fraud--like fee-for-service medicine--should be confined to the past. In the end--and regardless of whatever legislation the national debate surrounding American health care produces--American medicine must adequately address its susceptibility to overtreatment, its incentives toward financial excess and waste, and its inability to push providers and entities into adopting more efficient practices. Medicare is finally moving quickly to bring about effective changes, and the program is seeking clarity in the midst of a period of tremendous uncertainty for American health care.

Tracey judgement and hospice DNACPR orders: steady as she goes or seismic change?

OBJECTIVES: The 2014 Court of Appeals decision with respect to Tracey vs Cambridge University Hospital ('the Tracey judgement') changed the requirements for discussing Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions with patients. This study is a retrospective case note review aiming to identify any changes in practice around discussing DNACPR decisions in hospices following the judgement. METHODS: 150 case notes from 2013 (before the Tracey judgement) were compared with 150 case notes from 2015 (following the Tracey judgement). These notes came from five hospices in the West Midlands. The notes were analysed to determine if the judgement resulted in changes to how frequently DNACPR decisions were discussed with patients and their families, as well as whether there were any changes in the documentation of reasons for not discussing such decisions. RESULTS: Discussions with patients around DNACPR decisions increased from 31% to 60% and with relatives from 29% to 59% following the Tracey judgement. Prior to the judgement the most frequently documented reason for not discussing was to avoid distress (23%), whereas after judgement it was patients lacking capacity to engage in such a discussion (40%). There was a lack of consistency and clarity in defining the concept of 'physical or psychological harm'. CONCLUSIONS: Although DNACPR decisions are being discussed more frequently with patients and families following the Tracey judgement, clarity on what constitutes 'physical or psychological harm' caused by these discussions is still required. Future research must examine whether the judgement is delaying or preventing DNACPR decisions being made.

Obstinación terapéutica en pacientes geriátricos: estudio fenomenológico de experiencias de médicos en Jalisco, México / Therapeutic obstinacy in geriatric patients: Phenomenological study of physician's experiences from Jalisco, Mexico

OBJETIVO: Comprender las experiencias de médicos en torno a la obstinación terapéutica en pacientes geriátricos en Jalisco, México. MÉTODO: Se realizó un estudio fenomenológico en médicos de hospitales públicos y privados de segundo nivel, ubicados en Jalisco, México, durante 2015. Se estudió una muestra propositiva conseguida mediante técnica de bola de nieve, con la que se obtuvieron 7 participantes con experiencia clínica en pacientes geriátricos y casos de obstinación terapéutica. Se realizaron entrevistas semiestructuradas, que fueron grabadas, transcritas manualmente y analizadas con apoyo del software Atlas. ti(C)6, conforme al método fenomenológico propuesto por Husserl. RESULTADOS: Emergieron 5 categorías: concepto de obstinación terapéutica, proceso de toma de decisiones, facilitadores microsociales, facilitadores macrosociales y concepto de buen morir. Los participantes conceptualizaron la obstinación terapéutica como un evento negativo y fútil. La toma de decisiones en torno a este fenómeno se vio influida por facilitadores microsociales como los deseos del paciente y las relaciones familiares, y por facilitadores macrosociales como el significado negativo de la muerte como consecuencia del quehacer médico y como indicador de desempeño hospitalario, así como la falta de entrenamiento de los médicos para comprender a sus pacientes y comunicar sus ideas con respecto al buen morir. El buen morir fue referido como un proceso natural, ligado a la familia, consistente en evitar el dolor durante el fallecimiento. CONCLUSIONES: Los médicos que han experimentado obstinación terapéutica con pacientes geriátricos la perciben como indeseable y reconocen que es facilitada por elementos micro y macrosociales, que interfieren con el buen morir

OBJECTIVE: To understand the experiences of physicians with regard to therapeutic obstinacy in geriatric patients from Jalisco, Mexico. METHOD: A phenomenological research study of physicians of public and private second level hospitals from Jalisco, Mexico, during 2015. A purposive sample obtained by snowball technique was studied, obtaining seven participants with clinical experience in geriatric patients and therapeutic obstinacy cases. Semi-structured interviews were performed and recorded, manually transcribed and analysed with Atlas. ti(C)6 software, according to the phenomenological method proposed by Husserl. RESULTS: Five categories emerged: concept of therapeutic obstinacy, decision-making process, microsocial facilitators, macrosocial facilitators and the concept of dying well. The participants conceived therapeutic obstinacy as a negative and useless event. Decision-making around this phenomenon is influenced by microsocial facilitators as well as the wishes of the patients and their relatives, and by macrosocial facilitators such as the negative meaning of death as a consequence of medical tasks and as an indicator of hospital performance, and the lack of training for doctors to understand their patients and to communicate their ideas around dyingwell. Dying well was referred to as a natural process, linked to family, and entailed preventing pain during death. CONCLUSIONS: The physicians who experienced therapeutic obstinacy with geriatric patients perceived this phenomenon as undesirable and recognised that it is facilitated by micro and macrosocial factors that interfere with dying well

Medicare Program; FY 2019 Hospice Wage Index and Payment Rate Update and Hospice Quality Reporting Requirements. Final rule.

This final rule updates the hospice wage index, payment rates, and cap amount for fiscal year (FY) 2019. The rule also makes conforming regulations text changes to recognize physician assistants as designated hospice attending physicians effective January 1, 2019. Finally, the rule includes changes to the Hospice Quality Reporting Program.

Hospice Underutilization in the U.S.: The Misalignment of Regulatory Policy and Clinical Reality.

After three and a half decades of experience with the Medicare hospice benefit in the U.S., despite excellent quality outcomes in symptom management, patient and family satisfaction, and reduction in health care costs, only 12%-15% of beneficiaries' days during the last year of life are spent being cared for within the highly cost-effective interdisciplinary coordinated advanced illness care model known as hospice. Although there are many reasons for this, including difficulties in acknowledging mortality among patients, their families, and physicians, a significant cause of low overall hospice utilization and intractably low median lengths of stay, reflective of late admissions, can be attributed to increasingly difficult and highly variable prognostic determinations for most of the leading causes of death among Medicare beneficiaries. Medicare is the payer for most hospice care in the U.S. and requires certification of a prognosis of six months or less for a beneficiary to access hospice support. At the time of admission to hospice, two physicians must predict that a patient is more likely to die in the next six months than survive, based on clinical status. In addition to prognostic uncertainty constituting a barrier to timely hospice referral, the Centers for Medicare and Medicaid Services and its payer contractors have developed a robust and expensive retrospective review process that penalizes hospices when patients outlive their expected prognosis. The administratively burdensome and financially punitive review practices further delay or limit access to care for eligible patients as certifying physicians and agencies, fearful of the financial and legal repercussions of reviews and audits, are hesitant to take patients under care unless they are clearly in the dying process. This article will review pertinent history and address the core problem of access to a health care benefit built on a policy that requires far greater prognostic certainty than any clinician can reasonably ascertain and fails to take into consideration the favorable impact hospice care has on terminally ill patients in improving prognosis. This clinical conundrum that limits access of seriously ill people to high-value quality care is of profound importance to the U.S. Medicare population and also one with potential relevance to all complex and regulated health systems and to other models of care whose eligibility criteria are based on prognostication.

Medical assistance in dying in Québec and Canada: legislative context and implementation issues / Asistencia médica para morir en Quebec y Canadá: contexto legislativo y problemas de implementación

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Tratamiento potencialmente inapropiado en oposición a futilidad y otras cuestiones éticas del caso de Charlie Gard / Potentially inappropriate treatment as opposed to futility and other ethical issues in the Charlie Gard case / Tractament potencialment inadequat en oposició a futilitat i altres qüestions ètiques del cas Charlie Gard

Durante los primeros 6 meses de 2017 se desarrolló un encendido debate sobre el caso de un niño inglés con una enfermedad rara y muy grave. Charlie Gard permaneció 9 meses en una unidad de cuidados intensivos paralizado, sometido a ventilación mecánica y con una función neurológica en constante deterioro. Mientras, en la prensa especializada y en los medios de comunicación general se desarrollaba un debate sobre quien tenía que tomar la decisión de retirar o continuar con los tratamientos de soporte vital y cuáles eran los criterios que había que utilizar para tomarla. En este artículo, analizamos estos y otros problemas éticos y sugerimos que, para tomar las mejores decisiones, se ha ido evolucionando de los intentos de definir la futilidad y determinar quién decide, hacia el concepto de tratamientos potencialmente inapropiados y el recurso a estrategias de toma de decisiones compartidas

In the first 6 months of 2017, there was a heated debate about the case of an English child with a rare and serious illness. Charlie Gard spent 9 months in an Intensive Care Unit paralyzed, undergoing mechanical ventilation and with a deteriorating neurological function. Meanwhile, a debate took place in the specialized press and general media about who had to make the decision to withdraw or continue with life support treatments, and on the criteria necessary to make that decision. In this article, we analyze these and other ethical problems, and suggest that in order to make the best decisions, attempts to define futility, and determine who decides has evolved into the concept of potentially inappropriate treatments and shared decision-making strategies

Durant els primers 6 mesos de 2017 es va desenvolupar un encès debat sobre el cas d'un nen anglès amb una malaltia rara i molt greu. Charlie Gard va romandre 9 mesos en una unitat de vigilància intensiva paralitzat, sotmès a ventilació mecànica i amb una funció neurològica en constant deterioració. Mentre, en la premsa especialitzada i en els mitjans de comunicació generals, tenia lloc un debat sobre qui havia de prendre la decisió de retirar o de continuar amb els tractaments de suport vital i quins eren els criteris que calia utilitzar per prendre-la. En aquest article analitzem aquests i altres problemes ètics i suggerim que, a fi de prendre les millors decisions, s'ha anat evolucionant dels intents de definir la futilitat, i determinar qui decideix, cap al concepte de tractaments potencialment inadequats i el recurs a estratègies de presa de decisions compartides