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Updated: 3 hours 37 min ago

Padres con hijos muy enfermos encuentran consuelo y esperanza en la ayuda de hospicio en el hogar

September 22, 2022

Pomona, California.- Cuando conoces por primera vez a Aaron Martinez, de 17 meses, no es evidente que algo está catastróficamente mal.

Lo que ves es un hermoso niño pequeño con piel suave y brillante, abundante cabello castaño y una sonrisa cautivadora. Lo que escuchas son arrullos y gritos que no indican de inmediato que hay algo  mal.

Pero sus padres, Adriana Pinedo y Héctor Martínez, saben bien la dolorosa verdad.

Aunque los médicos y la partera de Adriana habían descrito el embarazo como “perfecto” durante los nueve meses, Aaron nació con la mayoría de las células cerebrales muertas, como resultado de dos accidentes cerebrovasculares y una hemorragia masiva que sufrió mientras estaba en el útero.

Los médicos no están seguros de qué causó las anomalías que dejaron a Aaron prácticamente sin función cognitiva ni movilidad física. Su voluminosa cabellera esconde una cabeza cuya circunferencia es demasiado pequeña para su edad. Tiene epilepsia, lo que desencadena múltiples convulsiones al día, y su sonrisa no siempre es lo que parece. “Podría ser una sonrisa; podría ser una convulsión”, dijo su madre.

Poco después del nacimiento de Aaron, los doctores le dijeron a Adriana, de 34 años, y a Héctor, de 35, que no había esperanza y que debían “dejar que la naturaleza siguiera su curso”. Meses después se enterarían de que los médicos no esperaban que el niño viviera más de cinco días. El día 5, sus padres lo pusieron bajo cuidados paliativos en el hogar, lo que ha continuado hasta su segundo año de vida.

La familia recibe visitas semanales de enfermeras de cuidados paliativos, terapeutas, trabajadores sociales y un capellán en el pequeño apartamento de una habitación que alquilan en una casa de familia, en una tranquila calle residencial en esta ciudad del Inland Empire.

Uno de los criterios principales para el cuidado de hospicio, establecido por Medicare principalmente para personas mayores pero que también aplica a niños, es un diagnóstico de seis meses o menos de vida. Sin embargo, en el transcurso de 17 meses, el equipo médico de Aaron ha vuelto a certificar repetidamente su elegibilidad para cuidados paliativos.

Según una disposición de la Ley de Cuidado de Salud a Bajo Precio (ACA) de 2010, a los niños inscritos en Medicaid o en el Programa de Seguro Médico Infantil (CHIP) se les permite, a diferencia de los adultos, estar en cuidados paliativos mientras continúan recibiendo atención curativa, o para prolongar la vida. Las aseguradoras comerciales no están obligadas a cubrir esta “atención concurrente”, como se la denomina, pero ahora muchas la cubren.

A más de una década de su creación, se reconoce ampliamente que la atención concurrente ha mejorado la calidad de vida de muchos niños con enfermedades terminales, aliviado el estrés de la familia y, en algunos casos, mantenido la esperanza de una cura. Pero el acuerdo puede contribuir a un doloroso dilema para padres como Adriana y Héctor, quienes se debaten entre su feroz compromiso con su hijo y la futilidad de saber que su condición lo deja sin esperanza en un futuro.

“Podríamos perder una vida, pero si sigue viviendo así, perderemos tres”, dijo Adriana. “No hay calidad de vida para él ni para nosotros”

Los médicos de Aaron ahora dicen que posiblemente podría vivir por años. Su cuerpo no ha dejado de crecer desde que nació. Está en el percentil 96 de estatura para su edad y su peso está en el promedio.

Sus padres han hablado sobre “graduarlo” del hospicio. Pero nunca está estable por mucho tiempo, y agradecen las visitas del equipo de cuidados paliativos. Las convulsiones, a veces 30 al día, son un asalto persistente a su cerebro y, a medida que crece, se deben cambiar los medicamentos para controlarlas o recalibrar las dosis. Está en riesgo continuo de problemas gastrointestinales y acumulación de líquido potencialmente mortal en sus pulmones.

Adriana, que trabaja desde casa para una organización de salud pública sin fines de lucro, pasa gran parte de su tiempo con Aaron, mientras Héctor trabaja como paisajista. Dijo que ha elegido vivir el momento, porque de lo contrario su mente divaga hacia un futuro en el que “él podría morir, o no, y terminaré cambiando los pañales de un hombre de 40 años”.  Cualquiera de eso, dijo, “va a ser terrible”.

Si bien el cáncer es una de las principales enfermedades que afectan a los niños en cuidados paliativos, muchos otros, como Aaron, tienen defectos congénitos raros, deficiencias neurológicas graves o deficiencias metabólicas poco comunes.

“Tenemos enfermedades que las familias nos dicen que son uno de los 10 casos en el mundo”, dijo el doctor Glen Komatsu, director médico de TrinityKids Care, con sede en Torrance, que brinda servicios de hospicio en el hogar a Aaron y a más de 70 niños en los condados de Los Ángeles y Orange.

En los años previos a la implementación de ACA, defensores de la salud pediátrica presionaron mucho por la provisión de atención concurrente. Sin la posibilidad de cuidados para prolongar la vida o la esperanza de una cura, muchos padres se negaban a llevar a sus hijos con enfermedades terminales a un hospicio, pensando que equivalía a darse por vencidos.

Eso significaba que toda la familia perdía el apoyo que el hospicio puede brindar, no solo alivio del dolor y consuelo para el niño moribundo, sino atención emocional y espiritual para los padres y hermanos bajo presión extrema.

TrinityKids Care, administrado por Providence, el gran sistema nacional de salud católico, no solo envía enfermeras, trabajadores sociales y capellanes a los hogares. Para los pacientes participantes y sus hermanos, también ofrece proyectos de arte y ciencia, clases de ejercicios, películas y música. Durante la pandemia, estas actividades se llevaron a cabo a través de Zoom y voluntarios llevaban los suministros necesarios a los hogares de los niños.

La capacidad de obtener tratamientos que prolonguen sus vidas es una de las principales razones por las que los niños en cuidados concurrentes tienen más probabilidades que los adultos de sobrevivir al diagnóstico de seis meses de vida requerido para el hospicio.

“La atención concurrente, por su propia intención, muy claramente extenderá sus vidas, y al extender sus vidas ya no serán elegibles para cuidados paliativos si se utiliza el criterio de expectativa de vida de seis meses”, dijo el doctor David Steinhorn, médico de cuidados intensivos pediátricos en Virginia, que ha ayudado a desarrollar numerosos programas de cuidados paliativos infantiles en el país.

Otro factor es que los niños, incluso los enfermos, son simplemente más fuertes que muchas personas mayores.

“Los niños enfermos suelen estar sanos, excepto por un órgano”, dijo la doctora Debra Lotstein, jefa de la división de confort y cuidados paliativos del Children’s Hospital Los Angeles. “Pueden tener cáncer en el cuerpo, pero sus corazones y sus pulmones están bien, en comparación con una persona de 90 años que, de base, no es tan resistente”.

Todos los órganos vitales de Aaron Martinez, excepto su cerebro, parecen estar funcionando. “Ha habido momentos en los que lo traemos, y la enfermera mira el expediente y lo mira, y no puede creer que sea ese niño”, dijo Héctor, su padre.

Cuando los niños superan la expectativa de vida de seis meses, se les debe volver a certificar para permanecer en el hospicio. Steinhorn dijo que, en muchos casos, está dispuesto a volver a certificar a sus pacientes pediátricos indefinidamente.

Incluso con médicos que los defienden, no siempre es fácil para los niños recibir cuidados paliativos. La mayoría de los hospicios atienden principalmente a adultos y son reacios a aceptar niños.

“El hospicio dirá: ‘No tenemos la capacidad para tratar niños. Nuestras enfermeras no están capacitadas. Es diferente. Simplemente no podemos hacerlo’”, dijo Lori Butterworth, cofundadora de Children’s Hospice and Palliative Care Coalition of California en Watsonville. “La otra razón es no querer, porque es existencialmente devastador, triste y duro”.

Las finanzas también juegan un papel. El cuidado de hospicio en el hogar se paga a una tarifa diaria establecida por Medicare (un poco más de $200 por día durante los primeros dos meses, alrededor de $161 por día después) y generalmente es la misma para niños y adultos. Los niños, en particular aquellos con enfermedades raras, a menudo requieren cuidados más intensivos e innovadores, por lo que el pago no alcanza tanto.

La provisión de atención concurrente ha hecho que el cuidado de pacientes pediátricos sea más viable para las organizaciones de cuidados paliativos, dijeron Steinhorn y otros. Según ACA, muchos de los gastos de ciertos medicamentos y servicios médicos pueden trasladarse al seguro primario del paciente, dejando a los hospicios responsables por el alivio del dolor y la atención de confort.

Aún así, la cantidad relativamente pequeña de niños que mueren cada año por dolencias prolongadas difícilmente hace que el hospicio pediátrico sea una línea de negocios atractiva en una industria que anhela crecer, especialmente una en la que los inversores de capital privado están activos y buscan pagos grandes.

En California, solo 21 de 1,336 hospicios informaron tener un programa de cuidados paliativos pediátricos especializado, y 59 dijeron que atendían al menos a un paciente menor de 21 años, según un análisis de datos estatales de 2020 realizado por Cordt Kassner, director ejecutivo de Hospice Analytics en Colorado Springs, Colorado .

Los proveedores de cuidados paliativos que atienden a niños a menudo se enfrentan a un desafío más básico: incluso con la posibilidad de atención concurrente, muchos padres aún equiparan el cuidado de hospicio con la aceptación de la muerte.

Ese fue inicialmente el caso de Matt y Reese Sonnen, residentes de Los Ángeles cuya hija, Layla, nació con un trastorno convulsivo que no tenía nombre: su cerebro simplemente no se había desarrollado en el útero y una resonancia magnética mostró que “líquido había ocupado el espacio en donde no estaba el cerebro”, dijo su madre.

Cuando el equipo de Layla mencionó por primera vez el hospicio, “estaba en el auto hablando por teléfono y casi choco”, recordó Reese. “El primer pensamiento que me vino a la mente fue: ‘Es el final’, pero sentimos que ella no estaba cerca de eso, porque era fuerte, era poderosa. Era mi niña. Iba a superar esto”.

Aproximadamente tres meses después, cuando el sistema nervioso de Layla se deterioró y se retorcía de dolor, sus padres acordaron inscribirla en un hospicio con TrinityKids Care. Murió a las pocas semanas, poco después de su segundo cumpleaños. Estaba en los brazos de su madre, con Matt cerca.

“De repente, Layla exhaló una gran bocanada de aire. La enfermera me miró y dijo: ‘Ese fue su último aliento’. Literalmente estaba respirando su último aliento”, relató Reese. “Nunca quise volver a respirar, porque ahora sentía que la tenía en mis pulmones. No me hagas reír, no me hagas exhalar”.

Los padres de Layla no se arrepienten de su decisión de internarla en un hospicio. “Fue la decisión absolutamente correcta y, en retrospectiva, deberíamos haberlo hecho antes”, dijo Matt. “Estaba sufriendo y nosotros teníamos puestas anteojeras”.

Adriana Pinedo dijo que está “infinitamente agradecida” por el cuidado de hospicio, a pesar de la angustia por la condición de Aaron. A veces, la trabajadora social se detiene, dijo, solo para saludar y dejar un café con leche, un pequeño gesto que puede sentirse muy alentador. “Han sido nuestro salvavidas”, dijo.

Adriana habla de una amiga suya que tiene un bebé sano, también llamado Aaron, que está embarazada de su segundo hijo. “Están viviendo todas las cosas que estaban en nuestra lista. Y los quiero mucho”, dijo Adriana. “Pero es casi difícil de mirar, porque es como mirar las cosas que no obtuviste. Es como el día de Navidad, mirando a través de la ventana a la casa del vecino, y estás sentado allí en el frío”.

Sin embargo, parece palpablemente dividida entre ese remordimiento sombrío y el amor incondicional que los padres sienten por sus hijos. En un momento, Adriana se interrumpió a media frase y se volvió hacia su hijo, que estaba en los brazos de Héctor: “Sí, papi, eres tan lindo y sigues siendo mi sueño hecho realidad”.

Esta historia fue producida por KHN, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Pruebas genéticas crean oportunidades de tratamiento, pero también confusión, entre las pacientes de cáncer de mama

September 21, 2022

La última década ha sido testigo de una rápida expansión de las pruebas genéticas, que incluyen nuevos instrumentos para informar a las pacientes, a las que se les ha diagnosticado cáncer de mama, sobre el riesgo de recurrencia y para orientar su tratamiento.

Pero la relevancia clínica de muchas de las mutaciones hereditarias que ahora pueden identificarse sigue sin estar clara, y los expertos no se ponen de acuerdo sobre cuándo y cómo desplegar las nuevas pruebas disponibles. A veces, los pacientes tienen que pagar de su bolsillo por exámenes que todavía no son el estándar de atención, e incluso los oncólogos más actualizados pueden no estar seguros de cómo incorporar la avalancha de nueva información a lo que solían ser los protocolos de tratamiento estándar.

Hace un cuarto de siglo, Myriad Genetics introdujo la primera prueba genética del cáncer de mama para las mutaciones BRCA, dos genes asociados a un riesgo elevado de padecer cáncer de mama, abriendo la puerta a una nueva era en las pruebas genéticas.

Las mutaciones en los genes BRCA1 y BRCA2 son responsables de hasta la mitad de los cánceres de mama hereditarios, y las personas con una mutación problemática en uno de esos genes tienen entre un 45% y un 72% de probabilidades de desarrollar cáncer de mama a lo largo de su vida. También pueden tener un mayor riesgo de padecer cáncer de ovario, y otros tipos de cáncer, que las personas sin mutaciones dañinas en el BRCA.

Pero el significado clínico es menos claro para muchas otras pruebas genéticas.

Las pruebas de los genes BRCA1 y BRCA2 solían costar miles de dólares. Ahora, por una fracción de ese precio, los médicos pueden pedir a los laboratorios comerciales paneles de pruebas multigénicas que buscan mutaciones en docenas de genes. Algunas empresas de venta directa al consumidor ofrecen paneles de detección por unos pocos cientos de dólares, aunque su fiabilidad varía.

Cuando Jen Carbary fue diagnosticada con cáncer de mama en 2017 a la edad de 44 años, las pruebas genéticas identificaron una mutación en un gen llamado PALB2 que aumenta significativamente el riesgo de desarrollar cáncer de mama. Las directrices sugieren que las pacientes con cáncer de mama con una mutación PALB2, al igual que las que tienen mutaciones BRCA1 y BRCA2, consideren someterse a una mastectomía para reducir la posibilidad de una recurrencia del cáncer.

“Ojalá las pruebas genéticas fueran el estándar de atención médica”, dijo Carbary, que no debía nada por la prueba porque su aseguradora la cubrió.

Carbary, que vive en Sterling Heights (Michigan), contó que los resultados de las pruebas la reafirmaron en su decisión de someterse a una doble mastectomía y proporcionaron información importante a los miembros de su familia, entre ellos a su hija de 21 años y su hijo de 18, que probablemente se someterán a las pruebas a mediados de los 20 años o al iniciar los 30.

Pero a algunos expertos en cáncer de mama les preocupa que la generalización de las pruebas pueda identificar también mutaciones genéticas cuyo impacto no esté claro, lo que crearía ansiedad y llevaría a realizar más pruebas y tratamientos de dudoso valor que podrían aumentar los costos para el sistema sanitario.

También puede confundir al paciente.

“Ocurre a menudo que las pacientes acuden a nosotros después de obtener resultados confusos en otros lugares”, indicó el doctor Mark Robson, jefe del servicio de medicina mamaria del Memorial Sloan Kettering Cancer Center de Nueva York. Robson explicó que el centro oncológico cuenta con un servicio de genética clínica, formado por médicos y asesores genéticos, que ayuda a las personas a tomar decisiones sobre cómo gestionar los resultados de este tipo de pruebas.

Para las personas diagnosticadas con cáncer de mama, muchos grupos profesionales, incluida la influyente National Comprehensive Cancer Network (NCCN), recomiendan limitar las pruebas a ciertas personas, incluidas las que tienen factores de alto riesgo, como antecedentes familiares de cáncer de mama; las que tienen 45 años o menos cuando son diagnosticadas; y las que tienen ascendencia judía asquenazí.

Pero en 2019, la Sociedad Americana de Cirujanos de Mama (ASBrS) recomendó un enfoque diferente: Ofrecer pruebas genéticas a todas las pacientes que sean diagnosticadas o tengan antecedentes personales de cáncer de mama. La recomendación fue controvertida.

“Las directrices de la NCCN cubren a la mayoría de las mujeres que necesitan pruebas, pero nosotros queríamos hacerlas a todas”, señaló el doctor Eric Manahan, cirujano general en Dalton, Georgia, y miembro de la junta directiva de la ASBrS.

Las mutaciones en otros genes que se asocian al cáncer de mama son mucho menos comunes que las mutaciones en el BRCA1 y el BRCA2 y, por lo general, no aumentan tanto el riesgo de desarrollar cáncer de mama. El impacto de estos genes en el cáncer puede ser menos claro que el de los genes BRCA, cuya detección se lleva a cabo desde mediados de los años noventa.

Y la respuesta adecuada a las mutaciones menos comunes —ya sea una mastectomía para reducir el riesgo o un cribado intensivo— a menudo no está clara.

“Las cosas se vuelven cada vez más confusas cuando se examinan otros genes”, afirmó el doctor Steven Katz, profesor de medicina y políticas sanitarias de la Universidad de Michigan. “Los riesgos tienden a ser menores para diferentes tipos de cáncer, y menos seguros y más variables. Puede que llegues a preguntarte: ‘¿Por qué tengo que saber esto?”.

Una vez diagnosticado el cáncer de mama, las pruebas genéticas pueden ayudar a tomar decisiones sobre el tipo de cirugía que se debe realizar; por ejemplo, un alto riesgo de recurrencia o un nuevo cáncer de mama puede hacer que algunas personas opten por una cirugía más extensa, como una doble mastectomía. Las pruebas también pueden proporcionar información importante a los miembros de la familia sobre su posible riesgo de cáncer.

(Este tipo de pruebas genéticas, llamadas “de línea germinal”, examina las mutaciones en los genes que las personas heredan de sus padres. Es diferente de las pruebas genómicas de los tumores, que examinan genes o proteínas específicos de las células cancerosas y pueden ayudar a los médicos a entender el ritmo de división de las células cancerosas, por ejemplo, y la probabilidad de que el cáncer reaparezca).

Cada vez más, las pruebas genéticas de la línea germinal también pueden ayudar a orientar otras decisiones de tratamiento. Algunas pacientes con cáncer de mama metastásico que presentan mutaciones en los genes BRCA1 o BRCA2 pueden ser buenas candidatas para los inhibidores de PARP, fármacos contra el cáncer que atacan a los tumores con mutaciones en esos genes.

Pero las pruebas genéticas que descubren mutaciones heredadas en muchos otros genes arrojan una información menos clara, aunque los resultados positivos pueden alarmar a las personas.

En el Memorial Sloan Kettering, los especialistas en cáncer se centran en la “capacidad de acción terapéutica”, afirmó Robson. ¿Ayudarán las pruebas a alguien a decidir si debe someterse a una doble mastectomía o le proporcionarán otra orientación importante? “Una política de pruebas para todo el mundo identificará muy pocas mutaciones mamarias BRCA adicionales, pero costará mucho”, añadió.

En consecuencia, los médicos debaten cuál es la mejor manera de desplegar e incorporar los nuevos conocimientos genéticos. Y las aseguradoras tratan de averiguar qué es lo que deben pagar.

Hay una subutilización de las pruebas que la ciencia dice que son relevantes y una sobreutilización de las pruebas que, según los expertos, proporcionan información que no puede interpretarse con ninguna certeza científica.

El resultado puede ser la confusión de las pacientes a las que se les acaba de diagnosticar un cáncer de mama, ya que se enfrentan a los gastos de las pruebas genéticas y, en ocasiones, a una escasa orientación sobre el tratamiento adecuado.

Algunos médicos afirman que el primer paso es asegurarse de que el pequeño grupo de personas que se beneficiaría claramente se someta a las pruebas genéticas cuyo significado se entiende con claridad. Solo el 15% de las pacientes con cáncer de mama que cumplían con las directrices de pruebas selectas de la NCCN para el cáncer hereditario recibieron pruebas genéticas, según un estudio de 2017 que examinó los datos de una encuesta nacional de salud entre 2005 y 2015.

“Yo diría que nuestro enfoque debe estar en las personas con alto riesgo de cáncer de mama que ni siquiera están identificadas todavía”, expresó la doctora Tuya Pal, directora para las disparidades de salud del cáncer en el Centro de Cáncer Vanderbilt-Ingram y vicepresidenta del panel de directrices de la NCCN para la evaluación genética/familiar de alto riesgo de cáncer de mama, ovario y páncreas.

Los pacientes pueden caer en el olvido porque nadie les dice que deben hacerse la prueba. En un análisis, el 56% de las pacientes con cáncer de mama de alto riesgo que no se sometieron a pruebas genéticas afirmaron que sus médicos no se lo recomendaron.

Incluso si los médicos recomiendan las pruebas genéticas, pueden carecer de la experiencia necesaria para determinar qué pruebas se necesitan y cómo interpretar los resultados. Esa es la función de los asesores genéticos, pero no hay muchos disponibles.

Las consecuencias pueden ser graves. En un estudio de 666 pacientes con cáncer de mama que se sometieron a pruebas genéticas, la mitad de las que tenían un riesgo medio de padecer un cáncer hereditario se sometieron a una doble mastectomía por haber encontrado “variantes de significado incierto“, que no requieren acción clínica. Hasta la mitad de los cirujanos informaron de que trataban a estas pacientes del mismo modo que a las que tenían mutaciones cancerígenas.

“El grueso de nuestra investigación diría que aún hay margen de mejora en lo que respecta a que los médicos obtengan la formación que necesitan”, afirmó la doctora Allison Kurian, directora del programa de genética clínica del cáncer femenino de la Universidad de Stanford y coautora del estudio.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Experts Question the Role of White Mulberry in the Death of Congressman’s Wife

September 14, 2022

SACRAMENTO, Calif. — Scientists, doctors, and pathologists are questioning the Sacramento County coroner’s conclusion that Lori McClintock’s death was related to white mulberry, a plant that has been used as an herbal remedy for centuries — and one that the coroner’s botanical consultant called “not toxic” in a letter to her office.

McClintock, the wife of U.S. Rep. Tom McClintock (R-Calif.), died suddenly in December from dehydration due to gastroenteritis — an inflammation of the stomach and intestines — that was caused by “adverse effects of white mulberry leaf ingestion,” according to a report from the Sacramento County coroner. The coroner ruled the death an accident.

But Sacramento County Coroner Kimberly Gin has not explained — nor provided records that explain — why she determined white mulberry leaf led to the dehydration that killed McClintock at age 61, fueling skepticism among a variety of experts.

A “partially intact” white mulberry leaf was found in Lori McClintock’s stomach, according to the autopsy report. But there is no other reference to her use of white mulberry leaves, supplements, extracts, powders — or any other method of ingesting the plant — in the documents the coroner’s office has released relating to the case.

“It would take literally bushel baskets of white mulberry leaves to cause some type of untoward effect. And even then, you don’t see anything lethal,” said Bill Gurley, principal scientist at the University of Mississippi’s National Center for Natural Products Research, which collaborates with academic, government, and industry officials to research and develop natural products.

Gurley, an expert in herb and drug interactions, called white mulberry leaf — which has been used for a variety of ailments, including diabetes, high blood pressure, and obesity — “probably one of the safest leaves in the world” and said “its track record for safety is unsurpassed.”

“I’m just scratching my head as to how in the world they could jump to the conclusion that this lady passed away by ingesting, at least as far as we know, only one mulberry leaf,” he said.

Dr. Mary Hardy, who founded the integrative medicine clinic at Cedars-Sinai Medical Center in Los Angeles and researched the safety of some alternative medicines and therapies for the now-closed UCLA Center for Dietary Supplements Research in Botanicals, said the coroner’s conclusion is “not convincing.”

“The proximate cause of death is not supported” by the available records, Hardy said.

Gin, contacted through Sacramento County spokesperson Kim Nava, repeatedly declined interview requests from KHN and has refused to provide information that explains how her office concluded that a partial white mulberry leaf contributed to McClintock’s death.

The leaves and fruit of the white mulberry tree, native to China, have been used for centuries in traditional medicine. Academic studies over the past decade have found that the extract from its leaves can lower blood sugar levels and help with weight loss. People take it in capsule or pill form, as an extract or powder. They can also eat the young leaves raw or brew leaves as an herbal tea.

It’s unclear how McClintock ingested the white mulberry leaf — whether she ate it raw or drank it in a tea — and where she got it.

Tom McClintock, a Republican who represents a district that spans multiple counties in central and Northern California, found his wife unresponsive at their Elk Grove, California, home on Dec. 15, 2021, according to the coroner’s report. He has not responded to repeated requests for comment.

At his wife’s funeral in January, Tom McClintock told mourners she was fine when he spoke with her the day before she died. But according to the coroner’s report, the day before her death “she had complaints of an upset stomach.”

McClintock also told mourners that “she was carefully dieting” and that “she just joined a gym.”

KHN obtained the coroner’s report, dated March 10, in addition to the autopsy report and death certificate, in July and reported the findings in August.

The coroner’s office tested McClintock’s body for the flu, other respiratory viruses, and covid-19. None were detected. It also commissioned independent lab tests that showed McClintock’s body had elevated levels of urea nitrogen, sodium, and creatinine — all signs of dehydration, according to five pathologists interviewed by KHN. Just one of them said it was plausible that white mulberry leaf could have contributed to the dehydration.

All the pathologists said that the coroner’s publicly released documents didn’t provide a complete picture of how McClintock died and that it didn’t include key details such as what the coroner’s office found at the house, and whether McClintock might have been taking any medications or supplements.

“The indication that there may be some dehydration is true. They don’t really have much else to go with,” said Dr. Gregory G. Davis, director of the forensic division of the University of Alabama-Birmingham’s Department of Pathology and chief coroner-medical examiner for Jefferson County, Alabama.

“I don’t know that mulberry leaf necessarily played any role in the death,” Davis said, adding, as other experts did, that it’s not considered toxic.

“She seemed, looking at her autopsy results, like she was reasonably healthy, and you wouldn’t have really expected her to die at this time. So that’s already made it a difficult case because it’s not obvious.”

Dr. James Gill, chair of the College of American Pathologists’ Forensic Pathology Committee and chief medical examiner of Connecticut, added it can take days for someone to die of dehydration. One leaf alone, which hadn’t been fully digested, a process that usually takes only a couple of hours, would not “have contributed to death,” he said.

“It takes about at least a week or so for someone to die from not drinking from dehydration,” Gill said. Based on the available records, “there are some things that really don’t fit.”

Gill said he would have ruled McClintock’s death a natural death of unknown causes, which happens in about 5% of his death investigations.

No deaths from the white mulberry plant have been reported to poison control officials in the past 10 years, according to the American Association of Poison Control Centers. Two cases of people who may have been sickened by mulberry supplements have been reported to the FDA since 2002, according to its database that tracks “adverse events.” FDA spokesperson Lindsay Haake declined to say whether the agency is looking into the case because it does not disclose investigations.

After KHN broke the story about McClintock’s cause of death, the coroner’s office released a couple of additional documents, including a Dec. 29, 2021, letter from Alison Colwell, curator of the University of California-Davis Center for Plant Diversity. The coroner had asked Colwell to identify the 1 1/8-inch-by-1 7/8-inch leaf fragment found in McClintock’s stomach during the autopsy.

Colwell identified it as white mulberry and concluded, based on its flexibility and “some green color,” that it “was likely ingested when fresh,” her letter said.

Although white mulberry trees are common in the Sacramento region, she noted that their leaves in December are “tough, yellowing and have mostly fallen off of the trees.”

Colwell also stated simply: “White mulberry is not toxic.”

“I compared the specimen to lethally toxic species that are known to be planted or are native in the Sacramento area and found no matches,” her letter said. Colwell declined an interview request.

The herbal products industry, the dietary supplements industry, and their allies have chafed at the possibility that McClintock may have died after ingesting supplements containing white mulberry leaf — let alone a white mulberry leaf itself.

“It’s been used as a food, used as a medicine,” said Rick Kingston, a clinical professor at the University of Minnesota’s College of Pharmacy. He’s also co-founder of SafetyCall International, a company that helps the supplements industry and other clients log and track adverse events related to their products.

The American Herbal Products Association, which represents herbal growers and manufacturers, commissioned Kingston to review McClintock’s case. “I see a lot of autopsy reports,” Kingston said. “I have to admit this was pretty sparse in terms of supporting data.”

Several plant specialists also question whether the leaf found in McClintock’s stomach was white mulberry. Élan Sudberg, CEO of California-based Alkemist Labs, which conducts botanical plant testing for the supplements industry and other clients, said Colwell’s letter lacks details of her assessment of the leaf that would help others reading the report definitively identify it as white mulberry. Either that, he said, or the leaf wasn’t white mulberry.

He said the coroner should release more information, reopen the case, and conduct more rigorous tests.

“I’d love to see a reexamination and understand why they went to the conclusion that she died from a basically inert leaf,” Sudberg said.

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Did the US Jump the Gun With the New Omicron-Targeted Vaccines?

September 12, 2022

Last month, the FDA authorized omicron-specific vaccines, accompanied by breathless science-by-press release and a media blitz. Just days after the FDA’s move, the Centers for Disease Control and Prevention followed, recommending updated boosters for anyone age 12 and up who had received at least two doses of the original covid vaccines. The message to a nation still struggling with the covid-19 pandemic: The cavalry — in the form of a shot — is coming over the hill.

But for those familiar with the business tactics of the pharmaceutical industry, that exuberant messaging — combined with the lack of completed studies — has caused considerable heartburn and raised an array of unanswered concerns.

The updated shots easily clear the “safe and effective” bar for government authorization. But in the real world, are the omicron-specific vaccines significantly more protective — and in what ways — than the original covid vaccines so many have already taken? If so, who would benefit most from the new shots? Since the federal government is purchasing these new vaccines — and many of the original, already purchased vaccines may never find their way into taxpayers’ arms — is the $3.2 billion price tag worth the unclear benefit? Especially when these funds had to be pulled from other covid response efforts, like testing and treatment.

Several members of the CDC advisory committee that voted 13-1 for the recommendation voiced similar questions and concerns, one saying she only “reluctantly” voted in the affirmative.

Some said they set aside their desire for more information and better data and voted yes out of fear of a potential winter covid surge. They expressed hope that the new vaccines — or at least the vaccination campaign that would accompany their rollout — would put a dent in the number of future cases, hospitalizations, and deaths.

That calculus is, perhaps, understandable at a time when an average of more than 300 Americans are dying of covid each day.

But it leaves front-line health care providers in the impossible position of trying to advise individual patients whether and when to take the hot, new vaccines without complete data and in the face of marketing hype.

Don’t get us wrong. We’re grateful and amazed that Pfizer-BioNTech and Moderna (with assists from the National Institutes of Health and Operation Warp Speed) developed an effective vaccine in record time, freeing the nation from the deadliest phase of the covid pandemic, when thousands were dying each day. The pandemic isn’t over, but the vaccines are largely credited for enabling most of America to return to a semblance of normalcy. We’re both up-to-date with our covid vaccinations and don’t understand why anyone would choose not to be, playing Russian roulette with their health.

But as society moves into the next phase of the pandemic, the pharmaceutical industry may be moving into more familiar territory: developing products that may be a smidgen better than what came before, selling — sometimes overselling — their increased effectiveness in the absence of adequate controlled studies or published data, advertising them as desirable for all when only some stand to benefit significantly, and in all likelihood raising the price later.

This last point is concerning because the government no longer has funds to purchase covid vaccines after this autumn. Funding to cover the provider fees for vaccinations and community outreach to those who would most benefit from vaccination has already run out. So updated boosters now and in the future will likely go to the “worried well” who have good insurance rather than to those at highest risk for infection and progression to severe disease.

The FDA’s mandated task is merely to determine whether a new drug is safe and effective. However, the FDA could have requested more clinical vaccine effectiveness data from Pfizer and Moderna before authorizing their updated omicron BA.5 boosters.

Yet the FDA cannot weigh in on important follow-up questions: How much more effective are the updated boosters than vaccines already on the market? In which populations? And what increase in effectiveness is enough to merit an increase in price (a so-called cost-benefit analysis)? Other countries, such as the United Kingdom, perform such an analysis before allowing new medicines onto the market, to negotiate a fair national price.

The updated booster vaccine formulations are identical to the original covid vaccines except for a tweak in the mRNA code to match the omicron BA.5 virus. Studies by Pfizer showed that its updated omicron BA.1 booster provides a 1.56 times higher increase in neutralizing antibody titers against the BA.1 virus as compared with a booster using its original vaccine. Moderna’s studies of its updated omicron BA.1 booster demonstrated very similar results. However, others predict that a 1.5 times higher antibody titer would yield only slight improvement in vaccine effectiveness against symptomatic illness and severe disease, with a bump of about 5% and 1% respectively. Pfizer and Moderna are just starting to study their updated omicron BA.5 boosters in human trials.

Though the studies of the updated omicron BA.5 boosters were conducted only in mice, the agency’s authorization is in line with precedent: The FDA clears updated flu shots for new strains each year without demanding human testing. But with flu vaccines, scientists have decades of experience and a better understanding of how increases in neutralizing antibody titers correlate with improvements in vaccine effectiveness. That’s not the case with covid vaccines. And if mouse data were a good predictor of clinical effectiveness, we’d have an HIV vaccine by now.

As population immunity builds up through vaccination and infection, it’s unclear whether additional vaccine boosters, updated or not, would benefit all ages equally. In 2022, the U.S. has seen covid hospitalization rates among people 65 and older increase relative to younger age groups. And while covid vaccine boosters seem to be cost-effective in the elderly, they may not be in younger populations. The CDC’s Advisory Committee on Immunization Practices considered limiting the updated boosters to people 50 and up, but eventually decided that doing so would be too complicated.

Unfortunately, history shows that — as with other pharmaceutical products — once a vaccine arrives and is accompanied by marketing, salesmanship trumps science: Many people with money and insurance will demand it whether data ultimately proves it is necessary for them individually or not.

We are all likely to encounter the SARS-CoV-2 virus again and again, and the virus will continue to mutate, giving rise to new variants year after year. In a country where significant portions of at-risk populations remain unvaccinated and unboosted, the fear of a winter surge is legitimate.

But will the widespread adoption of a vaccine — in this case yearly updated covid boosters — end up enhancing protection for those who really need it or just enhance drugmakers’ profits? And will it be money well spent?

The federal government has been paying a negotiated price of $15 to $19.50 a dose of mRNA vaccine under a purchasing agreement signed during the height of the pandemic. When those government agreements lapse, analysts expect the price to triple or quadruple, and perhaps even more for updated yearly covid boosters, which Moderna’s CEO said would evolve “like an iPhone.” To deploy these shots and these dollars wisely, a lot less hype and a lot more information might help.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Many Preventive Medical Services Cost Patients Nothing. Will a Texas Court Decision Change That?

September 09, 2022

A federal judge’s ruling in Texas has thrown into question whether millions of insured Americans will continue to receive some preventive medical services, such as cancer screenings and drugs that protect people from HIV infection, without making a copayment.

It’s the latest legal battle over the Affordable Care Act, and Wednesday’s ruling is almost certain to be appealed.

A key part of the ruling by Judge Reed O’Connor of the U.S. District Court for the Northern District of Texas says one way that preventive services are selected for the no-cost coverage is unconstitutional. Another portion of his ruling says a requirement that an HIV prevention drug therapy be covered without any cost to patients violates the religious freedom of an employer who is a plaintiff in the case.

It is not yet clear what all this means for insured patients. A lot depends on what happens next.

O’Connor is likely familiar to people who have followed the legal battles over the ACA, which became law in 2010. In  2018, he ruled that the entire ACA was unconstitutional. For this latest case, he has asked both sides to outline their positions on what should come next in filings due Sept. 16.

After that, the judge may make clear how broadly he will apply the ruling. O’Connor, whose 2018 ruling was later reversed by the U.S. Supreme Court, has some choices. He could say the decision affects only the conservative plaintiffs who filed the lawsuit, expand it to all Texans, or expand it to every insured person in the U.S. He also might temporarily block the decision while any appeals, which are expected, are considered.

“It’s quite significant if his ruling stands,” said Katie Keith, director of the Health Policy and the Law Initiative at the O’Neill Institute for National and Global Health Law at the Georgetown University Law Center.

We asked experts to weigh in on some questions about what the ruling might mean.

What does the ACA require on preventive care?

Under a provision of the ACA that went into effect in late 2010, many services considered preventive are covered without a copayment or deductible from the patient.

A recent estimate from the U.S. Department of Health and Human Services found that more than 150 million people with insurance had access to such free care in 2020.

The federal government currently lists 22 broad categories of coverage for adults, an additional 27 for women, and 29 for children.

To get on those lists, vaccines, screening tests, drugs, and services must have been recommended by one of three groups of medical experts. But the ruling in the Texas case centers on recommendations from only one group: the U.S. Preventive Services Task Force, a nongovernmental advisory panel whose volunteer experts weigh the pros and cons of screening tests and preventive treatments.

Procedures that get an “A” or “B” recommendation from the task force must be covered without cost to the insured patient and include a variety of cancer screenings, such as colonoscopies and mammograms; cholesterol drugs for some patients; and screenings for diabetes, depression, and sexually transmitted diseases.

Why didn’t the ACA simply spell out what should be covered for free?

“As a policymaker, you do not want to set forth lists in statutes,” said Christopher Condeluci, a health policy attorney who served as tax and benefits counsel to the U.S. Senate Finance Committee during the drafting of the ACA. One reason, he said, is that if Congress wrote its own lists, lawmakers would be “getting lobbied in every single forthcoming year by groups wanting to get on that list.”

Putting it in an independent body theoretically insulated such decisions from political influence and lobbying, he and other experts said.

What did the judge say?

It’s complicated, but the judge basically said that using the task force recommendations to compel insurers or employers to offer the free services violates the Constitution.

O’Connor wrote that members of the task force, which is convened by a federal health agency, are actually “officers of the United States” and should therefore be appointed by the president and confirmed by the Senate.

The decision does not affect recommendations made by the other two groups of medical experts: the Advisory Committee on Immunization Practices, which makes recommendations to the Centers for Disease Control and Prevention on vaccinations, and the Health Resources and Services Administration, a part of the Department of Health and Human Services that has set free coverage rules for services aimed mainly at infants, children, and women, including birth control directives.

Many of the task force’s recommendations are noncontroversial, but a few have elicited an outcry from some employers, including the plaintiffs in the lawsuit. They argue they should not be forced to pay for services or treatment they disagree with, such as HIV prevention drugs.

Part of O’Connor’s ruling addressed that issue separately, agreeing with the position taken by plaintiff Braidwood Management, a Christian, for-profit corporation owned by Steven Hotze, a conservative activist who has brought other challenges to the ACA and to coronavirus mask mandates. Hotze challenged the requirement to provide free coverage of preexposure prophylaxis (PrEP) drugs that prevent HIV. He said it runs afoul of his religious beliefs, including making him “complicit in facilitating homosexual behavior, drug use, and sexual activity outside of marriage between one man and one woman,” according to the ruling.

O’Connor said forcing Braidwood to provide such free care in its insurance plan, which it funds itself, violates the federal Religious Freedom Restoration Act.

What about no-copay contraceptives, vaccines, and other items that are covered under recommendations from other groups not targeted by the judge’s ruling?

The judge said recommendations or requirements from the other two groups do not violate the Constitution, but he asked both parties to discuss the ACA’s contraceptive mandate in their upcoming filings. Currently, the law requires most forms of birth control to be offered to enrollees without a copayment or deductible, although courts have carved out exceptions for religious-based employers and “closely held businesses” whose owners have strong religious objections.

The case is likely to be appealed to the 5th U.S. Circuit Court of Appeals.

“We will have a conservative court looking at that,” said Sabrina Corlette, co-director of Georgetown University’s Center on Health Insurance Reforms. “So I would not say that the vaccines and the women’s health items are totally safe.”

Does this mean my mammogram or HIV treatment won’t be covered without a copayment anymore?

Experts say the decision probably won’t have an immediate effect, partly because appeals are likely and they could continue for months or even years.

Still, if the ruling is upheld by an appellate court or not put on hold while being appealed, “the question for insurers and employers will come up on whether they should make changes for 2023,” said Keith.

Widespread changes next year are unlikely, however, because many insurers and employers have already drawn up their coverage rules and set their rates. And many employers, who backed the idea of allowing the task force to make the recommendations when the ACA was being drafted, might not make substantial changes even if the ruling is upheld on appeal.

“I just don’t see employers for most part really imposing copays for stuff they believe is actually preventive in nature,” said James Gelfand, president of the ERISA Industry Committee, which represents large, self-insured employers.

For the most part, Gelfand said, employers are in broad agreement on the preventive services, although he noted that covering every type or brand of contraceptive without a patient copayment is controversial and that some employers have cited religious objections to covering some services, including the HIV preventive medications.

Religious objections aside, future decisions may have financial consequences. As insurers or employers look for ways to hold down costs, they might reinstitute copayments or deductibles for some of the more expensive preventive services, such as colonoscopies or HIV drugs.

“With some of the higher-ticket items, we could see some plans start cost sharing,” said Corlette.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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When Does Life Begin? As State Laws Define It, Science, Politics, and Religion Clash

September 06, 2022

As life-preserving medical technology advanced in the second half of the 20th century, doctors and families were faced with a thorny decision, one with weighty legal and moral implications: How should we define when life ends? Cardiopulmonary bypass machines could keep the blood pumping and ventilators could maintain breathing long after a patient’s natural ability to perform those vital functions had ceased.

After decades of deliberations involving physicians, bioethicists, attorneys, and theologians, a U.S. presidential commission in 1981 settled on a scientifically derived dividing line between life and death that has endured, more or less, ever since: A person was considered dead when the entire brain — including the brainstem, its most primitive portion — was no longer functioning, even if other vital functions could be maintained indefinitely through artificial life support.

In the decades since, the committee’s criteria have served as a foundation for laws in most states adopting brain death as a standard for legal death.

Now, with the overturning of Roe v. Wade and dozens of states rushing to impose abortion restrictions, American society is engaged in a chaotic race to define the other pole of human existence: When exactly does human life begin? At conception, the hint of a heartbeat, a first breath, the ability to survive outside the womb with the help of the latest technology?

That we’ve been able to devise and apply uniform clinical standards for when life ends, but not when it begins, is due largely to the legal and political maelstrom around abortion. And in the two months since the U.S. Supreme Court issued its opinion in Dobbs v. Jackson Women’s Health Organization, eliminating a long-standing federal right to abortion, state legislators are eagerly bounding into that void, looking to codify into law assorted definitions of life that carry profound repercussions for abortion rights, birth control, and assisted reproduction, as well as civil and criminal law.

“The court said that when life begins is up to whoever is running your state — whether they are wrong or not, or you agree with them or not,” said Mary Ziegler, a law professor at the University of California-Davis who has written several books on the history of abortion.

Unlike the debate over death, which delved into exquisite medical and scientific detail, the legislative scramble to determine when life’s building blocks reach a threshold that warrants government protection as human life has generally ignored the input of mainstream medical professionals.

Instead, red states across much of the South and portions of the Midwest are adopting language drafted by elected officials that is informed by conservative Christian doctrine, often with little scientific underpinning.

A handful of Republican-led states, including Arkansas, Kentucky, Missouri, and Oklahoma, have passed laws declaring that life begins at fertilization, a contention that opens the door to a host of pregnancy-related litigation. This includes wrongful death lawsuits brought on behalf of the estate of an embryo by disgruntled ex-partners against physicians and women who end a pregnancy or even miscarry. (One such lawsuit is underway in Arizona. Another reached the Alabama Supreme Court.)

In Kentucky, the law outlawing abortion uses morally explosive terms to define pregnancy as “the human female reproductive condition of having a living unborn human being within her body throughout the entire embryonic and fetal stages of the unborn child from fertilization to full gestation and childbirth.”

Several other states, including Georgia, have adopted measures equating life with the point at which an embryo’s nascent cardiac activity can be detected by an ultrasound, at around six weeks of gestation. Many such laws mischaracterize the flickering electrical impulses detectible at that stage as a heartbeat, including in Georgia, whose Department of Revenue recently announced that “any unborn child with a detectable human heartbeat” can be claimed as a dependent.

The Supreme Court’s 1973 decision in Roe v. Wade that established a constitutional right to abortion did not define a moment when life begins. The opinion, written by Justice Harry Blackmun, observed that the Constitution does not provide a definition of “person,” though it extends protections to those born or naturalized in the U.S. The court majority made note of the many disparate views among religions and scientists on when life begins, and concluded it was not up to the states to adopt one theory of life.

Instead, Roe created a framework intended to balance a pregnant woman’s right to make decisions about her body with a public interest in protecting potential human life. That decision and a key ruling that followed generally recognized a woman’s right to abortion up to the point medical professionals judge a fetus viable to survive outside the uterus, at about 24 weeks of gestation.

In decisively overturning Roe in June, the Supreme Court’s conservative majority drew on legal arguments that have shaped another contentious end-of-life issue. The legal standard employed in Dobbs — that there is no right to abortion in the federal Constitution and that states can decide on their own — is the same rationale used in 1997 when the Supreme Court said terminally ill people did not have a constitutional right to medically assisted death. That decision, Washington v. Glucksberg, is mentioned 15 times in the majority opinion for Dobbs and a concurrence by Justice Clarence Thomas.

Often, the same groups that have led the fight to outlaw abortion have also challenged medical aid-in-dying laws. Even after Dobbs, so-called right-to-die laws remain far less common than those codifying state abortion rights. Ten states allow physicians to prescribe lethal doses of medicine for terminally ill patients. Doctors are still prohibited from administering the drugs.

James Bopp, general counsel for the National Right to Life Committee who has been central to the efforts to outlaw abortion, said that both abortion and medically assisted death, which he refers to as physician-assisted suicide, endanger society.

“Every individual human life has inherent value and is sacred,” said Bopp. “The government has the duty to protect that life.”

Both issues raise profound societal questions: Can the government keep a patient on life support against his wishes, or force a woman to give birth? Can states bar their own residents from going to other states to end a pregnancy, or prohibit out-of-state patients from coming in to seek medically assisted death? And who gets to decide, particularly if the answer imposes a singular religious viewpoint?

Just as there are legal implications that flow from determining a person’s death, from organ donation to inheritance, the implied rights held by a legally recognized zygote are potentially vast. Will death certificates be issued for every lost pregnancy? Will miscarriages be investigated? When will Social Security numbers be issued? How will census counts be tallied and congressional districts drawn?

Medical professionals and bioethicists caution that both the beginning and end of life are complicated biological processes that are not defined by a single identifiable moment — and are ill suited to the political arena.

“Unfortunately, biological occurrences are not events, they are processes,” said David Magnus, director of the Stanford Center for Biomedical Ethics.

Moreover, asking doctors “What is life?” or “What is death?” may miss the point, said Magnus: “Medicine can answer the question ‘When does a biological organism cease to exist?’ But they can’t answer the question ‘When does a person begin or end?’ because those are metaphysical issues.”

Ben Sarbey, a doctoral candidate in Duke University’s department of philosophy who studies medical ethics, echoed that perspective, recounting the Paradox of the Heap, a thought experiment that involves placing grains of sand one on top of the next. The philosophical quandary is this: At what point do those grains of sand become something more — a heap?

“We’re going to have a rough time placing a dividing line that this counts as a person and this does not count as a person,” he said. “Many things count as life — a sperm counts as life, a person in a persistent vegetative state counts as life — but does that constitute a person that we should be protecting?”

Even as debate over the court’s abortion decision percolates, the 1981 federal statute that grew out of the presidential committee’s findings, the Uniform Determination of Death Act, is also under review. This year, the Uniform Law Commission, a nonpartisan group of legal experts that drafts laws intended for adoption in multiple states, has taken up the work to revisit the definition of death.

The group will consider sharpening the medical standards for brain death in light of advances in the understanding of brain function. And they will look to address lingering questions raised in recent years as families and religious groups have waged heated legal battles over terminating artificial life support for patients with no brain wave activity.

Bopp, with the National Right to Life Committee, is among those serving on advisory panels for the effort, along with an array of doctors, philosophers, and medical ethicists. The concept of “personhood” that infuses the anti-abortion movement’s broader push for fetal rights is expected to be an underlying topic, albeit in mirror image: When does a life form cease being a person?

Magnus, who is also serving on an advisory panel, has no doubt the commission will reach a consensus, a sober resolution rooted in science. What’s less clear, he said, is whether in today’s political environment that updated definition will hold the same sway, an enduring legal standard embraced across states.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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