Lu Spinney writes, “I’m standing in the acute neurosurgery ward of Innsbruck University Hospital. The senior consultant has asked me to tell him about my son Miles, who is lying motionless on the bed beside us.”

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In April, Gundy’s child, who is on private insurance, began getting the drug Spinraza, which costs $750,000 for the initial year of treatment. Chaffin’s child — a Medicaid enrollee — was not receiving the drug, as his state regulators debated whether to offer it to children like him who use ventilators to breathe

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For the analysis, published in the July issue of Health Affairs, researchers reviewed 150 studies published from 2011 to 2016 that reported on the proportion of adults who completed advance directives, focusing on living wills and health care power-of-attorney documents

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The agency is proposing new rules that could save millions of lives

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Chris Gard and Connie Yates want permission to take the 11-month-old home for his final days. But Great Ormond Street Hospital (GOSH) said it was not practical to provide the level of life-support treatment to Charlie at the couple’s London home. It says a hospice would be a more appropriate place for him

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Frederick Bannon Jr. was by his mother’s side in intensive care as she fought a rare form of muscle cancer in late 2014. She was heavily sedated, but he felt confident making medical decisions for her, thanks to his family’s advance care planning

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Sam, your newborn son, has been suffocating in your arms for the past 15 minutes. You’re as certain as you can be that he is going to die in the next 15. He was born two days ago with “trisomy 18,” a disease that proved no obstacle to his cementing himself immediately and forevermore as the love of your life

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There can’t be many people in the UK who haven’t heard of Charlie Gard. He’s a little boy with mitochondrial disease who is on life support. His parents want to send him to the US for experimental treatment; the UK courts have ruled on medical advice that the treatment does not show sufficient promise. Medics think Charlie can’t be helped. His desperate parents claim otherwise, citing the support of 7 international doctors and a 350,000 strong petition

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