Literature Review

$4.25 million gene therapy for kids becomes world's priciest drug NBC LEX18, by Alex Arger; 3/20/24 A lifesaving gene therapy for children born with a rare and debilitating disease has just been approved by the U.S. Food and Drug Administration. The catch? Its wholesale cost has been set at $4.25 million, making it the most expensive medicine in the world. Orchard Therapeutics announced the hefty price for Lenmeldy Wednesday, two days after the FDA approved the therapy as the only treatment for kids with metachromatic leukodystrophy, or MLD. 

Survey: Nearly half of healthcare workers witness discrimination against patientsMcKnights Long-Term Care News, by Foster Stubbs; 2/20/24Healthcare workers (HCWs) are likely to witness discrimination in their workplaces, according to a new report from the Commonwealth Fund and the African American Research Collaborative. This can contribute to negative health outcomes for patients as well as emotional distress for both patients and healthcare workers.Editor's Note: What Policies and Procedures do you have in place for your hospice interdisciplinary teams,  volunteers, and non-clinical staff? What diversity education and competencies do you regularly require and update? 

Does morphine speed up death at the end of life? What we knowHealthDigest, by Jennifer Anandanayagam; 1/17/24... [Hospice care workers often hear a common concern], if giving morphine to your dying loved actually brings about their death sooner.Quotes from Elisabeth Smith, Hospice of the Chesapeake's Director of Education and Emergency Management

Should patients be allowed to die from anorexia?DNYUZ; 1/3/24The doctors told Naomi that she could not leave the hospital. She was lying in a narrow bed at Denver Health Medical Center. Someone said something about a judge and a court order. Someone used the phrase “gravely disabled.” Naomi did not think she was gravely disabled. Still, she decided not to fight it. She could deny that she was mentally incompetent — but this would probably just be taken as proof of her mental incompetence. Of her lack of insight. She would, instead, “succumb to it.” [Read more of Naomi's story, followed by this examination of palliative care.]The field of palliative care was developed in the 1960s and ’70s, as a way to minister to dying cancer patients. Palliative care offered “comfort measures,” like symptom management and spiritual guidance, as opposed to curative treatment, for people who were in pain and would never get better. Later, the field expanded beyond oncology and end-of-life care — to reach patients with serious medical illnesses like heart disease, H.I.V. and AIDS, kidney failure, A.L.S. and dementia. Some people who receive palliative care are still fighting their diseases; in these cases, the treatment works to mitigate their suffering. [Read more of this discussion of emerging issue.]