Along with potential benefits to healthcare delivery, machine learning healthcare applications raise a number of ethical concerns. Ethical evaluations of ML-HCAs will need to structure th...
Some children living with life-shortening medical conditions may wish to attend school without the threat of having resuscitation attempted in the event of cardiopulmonary arrest on the school premises. Despite recent attention to in-school do-not-attempt-resuscitation (DNAR) orders, no assessment of state laws or school policies has yet been made. We therefore sought to survey a national sample of prominent school districts and situate their policies in the context of relevant state laws. Most (80%) school districts sampled did not have policies, (...) regulations, or protocols for dealing with student DNARs. A similar majority (76%) either would not honor student DNARs or were uncertain about whether they could. Frequent contradictions between school policies and state laws also exist. Consequently, children living with life-shortening conditions who have DNARs may not have these orders honored if cardiopulmonary arrest were to occur on school premises. Coordinated efforts are needed to harmonize school district, state, and federal approaches in order to support children and families' right to have important medical decisions honored. (shrink)
What is the future of genetic testing during pregnancy likely to look like? Given that the patterns of use of genetic testing in neonatology tend to precede, and thus predict, patterns of prenatal...
Since the early 1980’s, with the clinical advent of in vitro fertilization resulting in so-called “test tube babies,” a wide array of ethical considerations and concerns regarding artificial womb technology (AWT) have been described. Recent breakthroughs in the development of extracorporeal neonatal life support by means of AWT have reinitiated ethical interest about this topic with a sense of urgency. Most of the recent ethical literature on the topic, however, pertains not to the more imminent scenario of a physiologically improved (...) method of neonatal care through AWT, but instead to the remote scenario of “complete ectogenesis” that imagines human gestation occurring entirely outside of the womb. This scoping review of the ethical literature on AWT spans from more abstract concerns about complete ectogenesis to more immediate concerns about the soon-to-be-expected clinical life support of what we term the fetal neonate or fetonate. Within an organizing framework of different stages of human gestational development, from conception to the viable premature infant, we discuss both already identified and newly emerging ethical considerations and concerns regarding AWT and the care of the fetonate. (shrink)
Machine learning is fundamental to multiple visions of health care’s future, from precision medicine 2020) to a model of health delivery and research...
... and the baby has a large VSD. Otherwise appears well, gaining weight, smiling. No apnea, never been on ventilator. Local cardiac surgeon refused to operate, saying that surgery would be inappropriate. Have reached out to other centers, and some state that they never perform what they said was “futile” heart surgery on children with Trisomy 18, while other sites say they have and will continue to perform these operations. Can someone explain to me what is going on? In the (...) realm of medical care—given enough patients, clinicians, and time—conflict is inevitable. Someone will want to do something, such as give a drug or start a new form of technologic support, and someone else will think that this is a... (shrink)
Hope is like water, existing in different states, exhibiting different properties.In the solid form, hope is manifest as specific hopes: I hope for this, I hope for that. In these concrete forms, solidified hope can become firm and fixed, for better and for worse. Dogged determination aimed at achieving a fixed hope is a very good characteristic—that is, until the continued pursuit of this specific solid hope becomes foolish, harmful, unwise. At the other end of the spectrum, in the gaseous (...) form, hope is amorphous, a glowing feeling that one has to tune into to detect, akin to optimism. In between these two states, hope is liquid. Flowing. Assuming the shape of whatever holds it. Carving, eroding, even dissolving.. (shrink)
Background While prenatal surgery historically was performed exclusively for lethal conditions, today intrauterine surgery is also performed to decrease postnatal disabilities for non-lethal conditions. We sought to describe physicians' attitudes about prenatal surgery for lethal and non-lethal conditions and to elucidate characteristics associated with these attitudes. Methods Survey of 1200 paediatric surgeons, neonatologists and maternal–fetal medicine specialists. Results Of 1176 eligible physicians, 670 responded. In the setting of a lethal condition for which prenatal surgery would likely result in the child (...) surviving with a severe disability, most respondents either disagreed or strongly disagreed that they would recommend the surgery. Male physicians were twice as likely to recommend surgery for the lethal condition, as were physicians who believe that abortion is morally wrong. Older physicians were less likely to recommend surgery. For non-lethal conditions, most respondents agreed that they would recommend prenatal surgery, even if the surgery increases the risk of prematurity or fetal death. Compared with MFMs, surgeons were less likely to recommend such surgery, as were physicians not affiliated with a fetal centre, and physicians who were religious. Conclusion Physician’s attitudes about prenatal surgery relate to physicians’ beliefs about disability as well as demographic, cultural and religious characteristics. Given the variety of views, parents are likely to receive different recommendations from their doctors about the preferable treatment choice. (shrink)
In her classic 1969 book, On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families (Kübler-Ross 2014), Kübler-Ross identified many short-comings in the care...
My colleagues and I had been asked by a member of a clinical team to help sort through the ethics of stopping a life-sustaining intervention for a very ill child. We had already talked with the parents, the physicians, and the folks from nursing, social work, and chaplaincy. Terms like “suffering,” “cruel,” “compassion,” and “moral distress” had been uttered, as had terms like “inappropriate,” “unethical,” “neglectful,” and “risk-management.” The group had now stuffed all of these polarizing thoughts and feelings into (...) this cramped room with only one door. And everyone was looking at me. What skill, competency, or inner capacity must one possess to hold and manage such tension? (shrink)
