BB 3 (but first finish BB 2... and see Radiolab post below)1. Chapter 3 begins by asking if our bioethical perspective ("vision") is skewed by _____... (a) cultural assumptions, (b) gender bias, (c) religious faith, (d) all of the above
2. What's the leading global cause of death among women of reproductive age?
3. (T/F) The "feminist critique" says bioethics has been dominated by culturally masculine thinking.
4. What ethical perspective did Nel Noddings (supported by Carol Gilligan's research) describe as the "feminine approach"?
5. What's a furor therapeuticus?
6. Does Campbell consider the outlawing of female genital mutilation culturally insensitive?
7. What's allegedly distinctive about "Asian bioethics"?
8. What western ethical preconception is "somewhat alien" in the eastern dharmic traditions?
9. What gives Buddhists and Hindus a "whole new perspective" on bioethical issues?
10. What does Campbell identify as a "tension in the Christian perspectives" on bioethics?
DQs:
- How do you think your own attitudes and assumptions about gender, religion, etc. influence your Bioethical perspective?
- What do Plato's Euthyphro and the Biblical story of Abraham & Isaac suggest to you about the place of religion in addressing biotethical issues? (61-2)
- What is Buddhism's bioethical relevance? (69)
- How should medical professionals treat and care for children whose parents object to medical intervention on religious grounds?
- Is it best for caregivers to try and limit their personal knowledge of patients' particular perspectives, beliefs, identities (religious, political, cultural etc.) so as to avoid conscious or unconscious bias in treatment, or does this unduly sacrifice the humane dimension of medical practice?
- Post your DQs
Quiz Feb 1 BB 4 - Clinical Ethics
1. (T/F) Dignity, respect, and confidentiality are among the aspects of the clinical relationship which emphasize the importance of trust.
2. What (according to most recognized oaths and conventions) must always be the deciding factor guiding professional decisions?
3. The idea that the doctor always knows best is called what?
4. Is a diagnosis of mental illness grounds for establishing a patient's lack of capacity to render competent consent to treatment?
5. What general principle allows breach of confidentiality?
6. What term expresses the central ethical concern about "designer babies"? What poet implicitly expressed it?
7. Why have organizations like the WHO opposed any form of organ trading?
8. Besides the Kantian objection, what other major ethical issue currently affects regenerative medicine?
9. What does palliative medicine help recover?
10. What would most of us consider an unwelcome consequence of not retaining the acts/omissions distinction with respect to our response to famine (for example)?
7. Why have organizations like the WHO opposed any form of organ trading?
8. Besides the Kantian objection, what other major ethical issue currently affects regenerative medicine?
9. What does palliative medicine help recover?
10. What would most of us consider an unwelcome consequence of not retaining the acts/omissions distinction with respect to our response to famine (for example)?
DQ
- How do you generally go about establishing trust in a new relationship? Do such general considerations apply equally to the clinical relationship? How does "professionalism" relate to trust?
- Considering the "demented professor" (81) and other instances of patients whose expressed "best interests" may conflict with a clinician's therapeutic impulses: how important is the patient's present happiness, in influencing your clinical evaluation?
- What's wrong, if in fact the doctor does possess more accurate information and more relevant experience, with treating the patient after the analogy of parent and child?
- What would Dr. House do about patients who make (in his opinion) foolish decisions regarding their care? Would you hire him to work in your hospital?
- Under what circumstances would you NOT violate confidentiality and inform a patient's partner that they were HIV positive?
- What concept is more relevant in evaluating the ethical status of abortion: viability, humanity, personhood, maternal rights, or... ?
- What do you think of Thomson's violinist analogy (91-2)?
- Can a baby really have five parents (as opposed to five co-progenitors)? How do you define parenthood?
- Should surrogacy, organ trafficking, and transplant tourism be regulated? How, and by whom?
- Do you think our society has a healthy attitude towards mental illness? Is it possible to declare a politically and ideologically neutral standard of sanity?
- How would you counsel patients who insist they no longer value their "quality of life" and refuse potentially effective treatment and medication?
- Can the medical profession ever fully embrace the concept of ars moriendi, the art of dying?
- Can you imagine ever facilitating a suicide, professionaly or personally?
- Is there anything wrong with displaying cadavers in a museum exhibit (as in "Bodies: The Exhibition")? What guidelines should be followed?
Also of interest:
Drug Shortages Forcing Hard Decisions on Rationing Treatments...In a survey of cancer doctors conducted in 2012 and 2013, 83 percent of respondents who regularly prescribed cancer drugs reported having been unable to provide the preferred chemotherapy agent at least once during the previous six months. More than a third of them said they had to delay treatment “and make difficult choices about which patients to exclude,” according to a letter published in The New England Journal of Medicine.
The threat of future shortages in children’s treatments is serious enough that Dr. Peter Adamson, who leads the Children’s Oncology Group, the largest international group of children’s cancer researchers, assigned his organization to set priorities. “We’ve been forced into what we think is a highly unethical corner,” he said in an interview...
- "Why I Want a 3-parent Baby"
- http://www.nytimes.com/2015/
02/01/us/medical-costs-rise- as-retirees-winter-in-south. html?smid=nytcore-iphone- share&smprod=nytcore-iphone Data suggests that many doctors, especially those in states known as winter getaways, increase their revenues by expanding the volume of diagnostic exams. - http://www.nytimes.com/2015/
02/01/opinion/sunday/frank- bruni-disneyland-measles-and- madness.html?smid=nytcore- iphone-share&smprod=nytcore- iphone For the sake of children’s health, let’s face facts and repudiate fiction. - Where is the public outrage over needless suffering at the end of life?
- Promise And Problems In Personalized Medicine, WBUR On Point. Precision medicine, tailored to your genes. President Obama announces a big push. We’ll take a look at the track record and potential. Plus: we’ll look at the growing measles outbreak around the United States...
- A note from Michael Pollan: The food ethics guru notes his return to a theme he explored in Botany of Desire, ... bit.ly/1tXibIA
==
Scientists create a part-human, part-pig embryo — raising the possibility of interspecies organ transplants
http://wapo.st/2k85Wt3
http://www.nytimes.com/2017/
Human stem cells could be implanted in an early pig embryo, making a chimera with human organs suitable for transplant.
http://www.nytimes.com/2017/
The president has greatly expanded a policy restricting federal aid to health organizations abroad that talk to women about abortion.
==http://wapo.st/2k85Wt3
http://www.nytimes.com/2017/
Human stem cells could be implanted in an early pig embryo, making a chimera with human organs suitable for transplant.
http://www.nytimes.com/2017/
The president has greatly expanded a policy restricting federal aid to health organizations abroad that talk to women about abortion.
The Struggle to Conceive With Frozen Eggs
Brigitte Adams caused a sensation four years ago when she appeared on the cover of Bloomberg Businessweek under the headline, “Freeze your eggs, Free your career.” She was single and blond, a Vassar graduate who spoke fluent Italian, and was working in tech marketing for a number of prestigious companies. Her story was one of empowerment, how a new fertility procedure was giving women more choices, as the magazine noted provocatively, “in the quest to have it all.” (continues, WaPo)
==
Does living forever sound ideal? These 5 new books will change your mind.Aside from Betty White, the examples of immortality are not encouraging. The ancient Greeks — who, by the way, are all dead now — sang a particularly harrowing tale of Tithonus. He was that prince who got to live forever but kept aging, which is why you should try to stay out of the sun as much as possible when you are young. Centuries later, Christianity promised everybody eternal life, but where and how you might be spending it was a matter of fiery debate. (continues, WaPo)==
The Men Who Want to Live Forever by Dara Horn
Would you like to live forever? Some billionaires, already invincible in every other way, have decided that they also deserve not to die. Today several biotech companies, fueled by Silicon Valley fortunes, are devoted to “life extension” — or as some put it, to solving “the problem of death.”
It’s a cause championed by the tech billionaire Peter Thiel, the TED Talk darling Aubrey de Gray, Google’s billion-dollar Calico longevity lab and investment by Amazon’s Jeff Bezos. The National Academy of Medicine, an independent group, recently dedicated funding to “end aging forever.”
As the longevity entrepreneur Arram Sabeti told The New Yorker: “The proposition that we can live forever is obvious. It doesn’t violate the laws of physics, so we can achieve it.” Of all the slightly creepy aspects to this trend, the strangest is the least noticed: The people publicly championing life extension are mainly men.
Not all of them, of course. In 2009, Elizabeth Blackburn received the Nobel Prize for her work on telomeres, protein caps on chromosomes that may be a key to understanding aging. Cynthia Kenyon, the vice president for aging research at Calico, studied life extension long before it was cool; her former protégée, Laura Deming, now runs a venture capital fund for the cause. But these women are focused on curbing age-related pathology, a concept about as controversial as cancer research. They do not appear thirsty for the Fountain of Youth.
Professor Blackburn’s new book on telomeres couldn’t be clearer. “Does our research show that by maintaining your telomeres you will live into your hundreds?” it says. “No. Everyone’s cells become old and eventually we die.” Ms. Kenyon once described her research’s goal as “to just have a healthy life and then turn out the lights.” Even Ms. Deming, a 23-year-old prodigy who worked in Ms. Kenyon’s lab at age 12, points out that “aging is innately important to us.”
Few of these experts come close to matching the gaudy statements of the longevity investor and “biohacker” Dave Asprey, who has told journalists, “I decided that I was just not going to die.” Or those of Brian Hanley, a microbiologist who has tested an anti-aging gene therapy he developed on himself, who claimed: “There’s a bunch of things that will need to be done to achieve life spans into at least hundreds of years. But we’ll get there.” Or of the 74-year-old fashion mogul Peter Nygard, who during a promotional clip receives injections of his own stem cells to reverse his aging while declaring: “Ponce de León had the right idea. He was just too early. That was then. This is now.”
I came across Mr. Nygard’s ode to human endurance three years ago while beginning research on a novel about a woman who can’t die, and watching that video allowed me to experience something close to life extension. As Mr. Nygard compared himself to Leonardo da Vinci and Benjamin Franklin while dancing with a bevy of models — or as a voice-over explained, “living a life most can only dream of” — nine minutes of YouTube expanded into a vapid eternity, where time melted into a vortex of solipsism.
At that time I was immersed in caring for my four young children, and this paean to everlasting youth seemed especially stupid. I recall thinking that if this was eternal life, death didn’t seem that bad.
But now, as powerful men have begun falling like dominoes under accusations of sexual assault, that video with its young women clustered around an elderly multimillionaire has haunted me anew. As I recall my discomfort with the proclamations of longevity-driven men who hope to achieve “escape velocity,” I think of the astonishing hubris of the Harvey Weinsteins of the world, those who saw young women’s bodies as theirs for the taking.
Much has been said about why we allowed such behavior to go unchecked. What has remained unsaid, because it is so obvious, is what would make someone so shameless in the first place: These people believed they were invincible. They saw their own bodies as entirely theirs and other people’s bodies as at their disposal; apparently nothing in their lives led them to believe otherwise.
Historically, this is a mistake that few women would make, because until very recently, the physical experience of being a woman entailed exactly the opposite — and not only because women have to hold their keys in self-defense while walking through parking lots at night. It’s only very recently that women have widely participated in public life, but it’s even more recently that men have been welcome, or even expected, to provide physical care for vulnerable people.
Only for a nanosecond of human history have men even slightly shared what was once exclusively a woman’s burden: the relentless daily labor of caring for another person’s body, the life-preserving work of cleaning feces and vomit, the constant cycle of cooking and feeding and blanketing and bathing, whether for the young, the ill or the old. For nearly as long as there have been humans, being a female human has meant a daily nonoptional immersion in the fragility of human life and the endless effort required to sustain it.
Obviously not everyone who provides care for others is a saint. But engaging in that daily devotion, or even living with its expectation, has enormous potential to change a person. It forces one to constantly imagine the world from someone else’s point of view: Is he hungry? Maybe she’s tired. Is his back hurting him? What is she trying to say?
The most obvious cure for today’s gender inequities is to put more women in power. But if we really hope to create an equal society, we will also need more men to care for the powerless — more women in the boardroom, but also more men at the nurses’ station and the changing table, immersed in daily physical empathy. If that sounds like an evolutionary impossibility, well, it doesn’t violate the laws of physics, so we can achieve it. It is surely worth at least as much investment as defeating death.
Perhaps it takes the promise of immortality to inspire the self-absorbed to invest in unsexy work like Alzheimer’s research. If so, we may all one day bless the inane death-defiance as a means to a worthy end.
But men who hope to live forever might pause on their eternal journey to consider the frightening void at invincibility’s core. Death is the ultimate vulnerability. It is the moment when all of us must confront exactly what so many women have known all too well: You are a body, only a body, and nothing more.
Dara Horn is the author, most recently, of the novel “Eternal Life.”
==
Bioethics today is about the ways our vision of issues and outcomes may be occluded, blurred, or otherwise compromised by our respective points of view or perspectives. Of course this is not unique to bioethics, all human comprehension is subject to bias by the attenuation of culture, gender, religion, ideology, experience, the absence of experience, greed, egoism, and on our list could go. It is in our nature to see what we've seen, to see what we want to see, to see through a glass darkly. Without corrected vision the people perish.
Our native tendency to frame experience incorrectly, conformable to our own pre-vision and hence occlusive of other ways of seeing and clinically intervening, is a constant challenge to the fair-minded ethicist. Bioethical philosophers across the perspectival spectrum presume to prescribe corrective frames, but inattention to the varieties of sight is a constant hazard. Here's a link to a good little essay on the subject, from esteemed bioethicist Arthur Caplan: "When Religion Trumps Medicine."
We should play with this metaphor. As a lifetime wearer of framed corrective lenses, I can attest to the temporary excitement of a new prescription, or even just a stylish new frame to house the old set of lenses. The trick is always to find frames that hold up through every season of wear, that don't grow tiresome, and that justify the expense of change. (My wife returned from Costco one day reporting that the same frames she'd found at the Eye Doc's were $100s cheaper there.) Sometimes new lenses in the old frame suffice, sometimes you just need a new look.
So, some of the perspectives we'll try to focus and reframe today: attitudes and assumptions around HIV/AIDS, especially as occluded by miseducation; violence as a public health issue; "feminist critiques" of contingently-drawn, historically-conditioned categories of masculinity and femininity, locked into patriarchal institutions and practices that discriminate against women; misogyny; marginalization; advocacy; embodiment; empowerment; relational autonomy; metaphysical dualism; care; furor therapeuticus; female genital mutilation; "Asian bioethics"; Plato's Euthyphro; Abraham & Isaac; Buddhism; and more.
How do you get that "new look"? I always like to suggest trying the John Rawls Original Position/Veil of Ignorance frames. Some of us can wear them.
One more indulgence, before discussion: the snarly TV doc Gregory House was suggested by a student last semester as a good example of how some practitioners seem driven less by the patient's best care than by their own egoism. But, getting the diagnosis and treatment right regardless of motive and ego still seems the most important thing. Doesn't it? Maybe you can find & share links to other YouTube moments illustrative of good and bad medical-ethical practice.
Also of interest:
HHS nominee skirts questions about impact of Drumpf’s executive order on ACA
finished plan to replace the law.
At a testy Senate confirmation hearing on his nomination to lead the Department of Health and Human Services, Rep. Tom Price (R-Ga.) sought to play down the influence he would have on reshaping the health-care system along conservative lines, while attempting to deflect accusations from Democrats about his ethics.
He repeatedly flashed his long-standing distaste for federal insurance standards and other government strategies to guide medical care. And although he embraced certain policies popular within the GOP, such as special insurance pools for patients with preexisting medical conditions, he steered clear of other ideas he has supported, including the transformation of Medicaid from an entitlement program for lower-income people to a set of block grants to states.
By the time the hearing ended after four hours, the Senate Finance Committee’s partisan divisions appeared as bitter as they had at the beginning, with the Republicans aligned solidly behind the nominee despite sharp Democratic attacks on his investment and legislative practices.
Chairman Orrin G. Hatch (R-Utah) praised Price as a singularly qualified nominee and took broad swipes at Senate Democrats, saying they were tearing at the fabric of the chamber as an institution with their attempts to undercut Drumpf’s Cabinet choices.
The committee’s ranking Democrat, Sen. Ron Wyden (Ore.), countered that Price, if confirmed, would “take America back to the dark days when health care was for the healthy and the wealthy.” Focusing on the private investments in health-care companies that could have benefited from bills Price sponsored, Wyden said that “it is hard to see this as anything but a conflict of interest and an abuse of position.”
[Who is Tom Price?]
A fresh allegation Tuesday was that Price underreported to the committee and the Office of Government Ethics the value of shares he holds in an Australian company, Innate Immunotherapeutics. Price, who purchased some of that stock through a discounted, private offering, attributed the underreporting to “a clerical error” and a misunderstanding of the question.
“The reality is that everything that I did was ethical, aboveboard, legal and transparent,” Price said — a message Republicans sought to reinforce throughout the hearing.
Democrats targeted most of their questioning on the direction that Price, if confirmed, would try to take the health-care system. Price demurred repeatedly.
For instance, he sidestepped a series of questions about the effects of the sweeping order Drumpf issued just hours after his swearing-in that directed agencies to lift or soften federal rules implementing aspects of the ACA. Price declined to commit that no one would be harmed, that no one would lose insurance coverage or that the regulations would be rewritten only after a plan exists to replace the 2010 health-care law.
He similarly deflected a question about whether the new administration would try to stop enforcement of the ACA’s individual insurance requirement prior to a replacement plan.
See how your coverage could be impacted by four prominent plans proposed by RepublicansVIEW GRAPHIC
“I commit to working with you,” Price finally told Wyden after reiterating that his goal is to ensure all Americans have an opportunity for access to health insurance. The ACA’s goal is universal coverage.
“We didn’t get an answer,” Wyden retorted.
Price also skirted questions by Sen. Sherrod Brown (D-Ohio) about Drumpf’s statements the weekend before his inauguration that the health-care plan he was completing would provide “insurance for everybody.”
Brown asked: “President Drumpf said he’s working with you on a replacement plan for the ACA, which is nearly finished and will be revealed after your confirmation. Is that true?”
Price replied: “It’s true that he said that, yes.”
The packed hearing room broke into laughter.
Brown persisted: “Did the president lie about this, that he’s not working with you?”
The nominee gave an oblique answer, saying, “I’ve had conversations with the president about health care.”
[HHS nominee’s mix of investments, donations, legislations keeps raising questions]
Tuesday’s hearing was the more significant of two appearances Price has made in the past week on Capitol Hill because the Finance Committee has jurisdiction to vote on his nomination. A date has not been set.
Democrats’ numerous attacks on Price in the past week prompted Sen. Johnny Isakson (R-Ga.), who officially introduced Price to his Finance Committee colleagues, to say, “I feel like I’ve been asked to be a character witness in a felony trial in the sentencing phase of a conviction.” WaPo
==
Faith-Based Decisions: Parents Who Refuse Appropriate Care for Their Children
Adam Lovell*, an active 2 ½ -year-old boy, was healthy until the day his parents took him to the local emergency department for vomiting and a suspected case of acute gastroenteritis. To the physicians, Adam appeared lethargic and was responsive only to painful stimulus. A blood culture was obtained, and other laboratory tests were performed. The blood culture later grew a meningococcus. Within hours "purple splotches" appeared on his face, legs, and trunk. Adam was diagnosed with meningococcemia and was started on appropriate antibiotics and steroids administered intravenously. Adam was intubated to stabilize his airway and transported to the County Memorial Hospital. On arrival, his perfusion was poor and blood pressure low. The tips of all his digits were dark blue; purpura (purple splotches) were present over most of his trunk, feet, and hands in a "stocking-glove" distribution. Intravenous fluid boluses and vasoactive drug infusions were administered. Adam's parents consented to multiple blood component therapy to treat a coagulopathy. Adam was also treated for respiratory failure related to meningococcal sepsis with both conventional and high frequency mechanical ventilation for the first 11 days of hospitalization.
At 10 days, Adam had well demarcated patches of dry, devitalized tissue (dry gangrene) on both of his feet, his left hand, and the fingers of his right hand. An eschar was present on the posterior surface of his right thigh. Ulcerated areas of skin were present in the perineal region. Consulting surgeons talked to his parents about the risks, benefits, and alternatives of amputation and debridement of portions of both of Adam's feet, his left hand, and the fingers of his right hand. The Lovells consented to the debridement and surgical treatment and signed the consent form. Shortly thereafter the family's minister came to the hospital and prayed with Adam's parents for God to restore life to the devitalized tissues. Soon afterward, the Lovells rescinded consent to surgical treatment and communicated that they wished to allow time to elapse so that God could heal Adam's dead and injured tissues. When the physician and the surgeon told Adam's parents that infection and sepsis would be inevitable without treatment, they agreed verbally that, in the event of sepsis, amputation should be performed.
Over the ensuing 2 ½ weeks, physicians met with the Lovells and vigorously attempted to persuade them to proceed with Adam's amputation and debridement of dead tissues. Mr. and Mrs. Lovell remained adamant that an expectant approach be maintained. During this time neither sepsis nor wet gangrene, which would have offered absolute indication for surgical intervention, occurred. Despite the best efforts of the family and staff, many hours elapsed where Adam remained quiet and alone in his bed. He would cry and appeared to be sad. At times he cried out "hand" while gazing at his outstretched and mummified hands. During visits, the Lovells read the Bible to Adam and assured him that God would direct his hands and feet to re-grow. The Lovells asserted to the staff that Jesus had arisen from the dead and shown himself to believers, and that God would revitalize Adam's dead tissues. Both family-associated and hospital-based clergy were regularly present to expand opportunities for mutual understanding of religious and medical issues. Adam's parents were repeatedly confronted with the ever-present and increasingly imminent reality that Adam needed amputations to prevent new onset of sepsis and to avoid possible death from sepsis.
After almost a month in the pediatric intensive care unit, Adam began to experience fevers and his white blood cell counts increased; both signs were indicative of developing infection. Therapy with topical and systemic antibiotics was continued and modified. His parents were informed of the changes and of the increasing need to consent to surgical therapy. In an effort to reinforce the inescapable need for surgical therapy, the physicians consulted with a burn surgeon at a neighboring institution by telemedicine. The surgeon confirmed that amputation was unavoidable. These communications were shared with the Lovells, who nevertheless, were not dissuaded from insisting upon further observation. Despite considerable effort to understand and support the parents by their own family members, by the medical staff, by social service, by psychology and by clergy (hospital and family), a clear impasse had been reached. The Division of Social Services (DSS) was engaged to evaluate the case for a possible claim of medical neglect against Adam's parents. With the possibility of the child's custody being assumed by DSS, the parents signed consent for amputation and debridement. The mother signed consent because "only death would take my baby from me." The family requested that a "hands-on" surgical evaluation be performed at another medical facility. This request was granted. Expedited transfer was made, surgical intervention was deemed necessary by the receiving surgeon and amputation and debridement followed within 2 days.
“I commit to working with you,” Price finally told Wyden after reiterating that his goal is to ensure all Americans have an opportunity for access to health insurance. The ACA’s goal is universal coverage.
“We didn’t get an answer,” Wyden retorted.
Price also skirted questions by Sen. Sherrod Brown (D-Ohio) about Drumpf’s statements the weekend before his inauguration that the health-care plan he was completing would provide “insurance for everybody.”
Brown asked: “President Drumpf said he’s working with you on a replacement plan for the ACA, which is nearly finished and will be revealed after your confirmation. Is that true?”
Price replied: “It’s true that he said that, yes.”
The packed hearing room broke into laughter.
Brown persisted: “Did the president lie about this, that he’s not working with you?”
The nominee gave an oblique answer, saying, “I’ve had conversations with the president about health care.”
[HHS nominee’s mix of investments, donations, legislations keeps raising questions]
Tuesday’s hearing was the more significant of two appearances Price has made in the past week on Capitol Hill because the Finance Committee has jurisdiction to vote on his nomination. A date has not been set.
Democrats’ numerous attacks on Price in the past week prompted Sen. Johnny Isakson (R-Ga.), who officially introduced Price to his Finance Committee colleagues, to say, “I feel like I’ve been asked to be a character witness in a felony trial in the sentencing phase of a conviction.” WaPo
==
Faith-Based Decisions: Parents Who Refuse Appropriate Care for Their Children
Adam Lovell*, an active 2 ½ -year-old boy, was healthy until the day his parents took him to the local emergency department for vomiting and a suspected case of acute gastroenteritis. To the physicians, Adam appeared lethargic and was responsive only to painful stimulus. A blood culture was obtained, and other laboratory tests were performed. The blood culture later grew a meningococcus. Within hours "purple splotches" appeared on his face, legs, and trunk. Adam was diagnosed with meningococcemia and was started on appropriate antibiotics and steroids administered intravenously. Adam was intubated to stabilize his airway and transported to the County Memorial Hospital. On arrival, his perfusion was poor and blood pressure low. The tips of all his digits were dark blue; purpura (purple splotches) were present over most of his trunk, feet, and hands in a "stocking-glove" distribution. Intravenous fluid boluses and vasoactive drug infusions were administered. Adam's parents consented to multiple blood component therapy to treat a coagulopathy. Adam was also treated for respiratory failure related to meningococcal sepsis with both conventional and high frequency mechanical ventilation for the first 11 days of hospitalization.
At 10 days, Adam had well demarcated patches of dry, devitalized tissue (dry gangrene) on both of his feet, his left hand, and the fingers of his right hand. An eschar was present on the posterior surface of his right thigh. Ulcerated areas of skin were present in the perineal region. Consulting surgeons talked to his parents about the risks, benefits, and alternatives of amputation and debridement of portions of both of Adam's feet, his left hand, and the fingers of his right hand. The Lovells consented to the debridement and surgical treatment and signed the consent form. Shortly thereafter the family's minister came to the hospital and prayed with Adam's parents for God to restore life to the devitalized tissues. Soon afterward, the Lovells rescinded consent to surgical treatment and communicated that they wished to allow time to elapse so that God could heal Adam's dead and injured tissues. When the physician and the surgeon told Adam's parents that infection and sepsis would be inevitable without treatment, they agreed verbally that, in the event of sepsis, amputation should be performed.
Over the ensuing 2 ½ weeks, physicians met with the Lovells and vigorously attempted to persuade them to proceed with Adam's amputation and debridement of dead tissues. Mr. and Mrs. Lovell remained adamant that an expectant approach be maintained. During this time neither sepsis nor wet gangrene, which would have offered absolute indication for surgical intervention, occurred. Despite the best efforts of the family and staff, many hours elapsed where Adam remained quiet and alone in his bed. He would cry and appeared to be sad. At times he cried out "hand" while gazing at his outstretched and mummified hands. During visits, the Lovells read the Bible to Adam and assured him that God would direct his hands and feet to re-grow. The Lovells asserted to the staff that Jesus had arisen from the dead and shown himself to believers, and that God would revitalize Adam's dead tissues. Both family-associated and hospital-based clergy were regularly present to expand opportunities for mutual understanding of religious and medical issues. Adam's parents were repeatedly confronted with the ever-present and increasingly imminent reality that Adam needed amputations to prevent new onset of sepsis and to avoid possible death from sepsis.
After almost a month in the pediatric intensive care unit, Adam began to experience fevers and his white blood cell counts increased; both signs were indicative of developing infection. Therapy with topical and systemic antibiotics was continued and modified. His parents were informed of the changes and of the increasing need to consent to surgical therapy. In an effort to reinforce the inescapable need for surgical therapy, the physicians consulted with a burn surgeon at a neighboring institution by telemedicine. The surgeon confirmed that amputation was unavoidable. These communications were shared with the Lovells, who nevertheless, were not dissuaded from insisting upon further observation. Despite considerable effort to understand and support the parents by their own family members, by the medical staff, by social service, by psychology and by clergy (hospital and family), a clear impasse had been reached. The Division of Social Services (DSS) was engaged to evaluate the case for a possible claim of medical neglect against Adam's parents. With the possibility of the child's custody being assumed by DSS, the parents signed consent for amputation and debridement. The mother signed consent because "only death would take my baby from me." The family requested that a "hands-on" surgical evaluation be performed at another medical facility. This request was granted. Expedited transfer was made, surgical intervention was deemed necessary by the receiving surgeon and amputation and debridement followed within 2 days.
(continues)
==
Letting them die: parents refuse medical help for children in the name of Christ
“Yes, I would like to see my parents prosecuted.”
Why?
“They deserve it.” She pauses. “And it might stop others.”
Mariah is 20 but she’s frail and permanently disabled. She has pulmonary hypertension and when she’s not bedridden, she has to carry an oxygen tank that allows her to breathe. At times, she has had screws in her bones to anchor her breathing device. She may soon have no option for a cure except a heart and lung transplant – an extremely risky procedure.
All this could have been prevented in her infancy by closing a small congenital hole in her heart. It could even have been successfully treated in later years, before irreversible damage was done. But Mariah’s parents were fundamentalist Mormons who went off the grid in northern Idaho in the 1990s and refused to take their children to doctors, believing that illnesses could be healed through faith and the power of prayer.
As she grew sicker and sicker, Mariah’s parents would pray over her and use alternative medicine. Until she finally left home two years ago, she did not have a social security number or a birth certificate.
Had they been in neighboring Oregon, her parents could have been booked for medical neglect. In Mariah’s case, as in scores of others of instances of preventible death among children in Idaho since the 1970s, laws exempt dogmatic faith healers from prosecution, and she and her sister recently took part in a panel discussion with lawmakers at the state capitol about the issue. Idaho is one of only six states that offer a faith-based shield for felony crimes such as manslaughter.
Some of those enjoying legal protection are fringe Mormon families like Mariah’s, many of whom live in the state’s north. But a large number of children have died in southern Idaho, near Boise, in families belonging to a reclusive, Pentecostal faith-healing sect called the Followers of Christ... (continues)
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Letting them die: parents refuse medical help for children in the name of Christ
The Followers of Christ is a religious sect that preaches faith healing in states such as Idaho, which offers a faith-based shield for felony crimes – despite alarming child mortality rates among these groupsMariah Walton’s voice is quiet – her lungs have been wrecked by her illness, and her respirator doesn’t help. But her tone is resolute.
“Yes, I would like to see my parents prosecuted.”
Why?
“They deserve it.” She pauses. “And it might stop others.”
Mariah is 20 but she’s frail and permanently disabled. She has pulmonary hypertension and when she’s not bedridden, she has to carry an oxygen tank that allows her to breathe. At times, she has had screws in her bones to anchor her breathing device. She may soon have no option for a cure except a heart and lung transplant – an extremely risky procedure.
All this could have been prevented in her infancy by closing a small congenital hole in her heart. It could even have been successfully treated in later years, before irreversible damage was done. But Mariah’s parents were fundamentalist Mormons who went off the grid in northern Idaho in the 1990s and refused to take their children to doctors, believing that illnesses could be healed through faith and the power of prayer.
As she grew sicker and sicker, Mariah’s parents would pray over her and use alternative medicine. Until she finally left home two years ago, she did not have a social security number or a birth certificate.
Had they been in neighboring Oregon, her parents could have been booked for medical neglect. In Mariah’s case, as in scores of others of instances of preventible death among children in Idaho since the 1970s, laws exempt dogmatic faith healers from prosecution, and she and her sister recently took part in a panel discussion with lawmakers at the state capitol about the issue. Idaho is one of only six states that offer a faith-based shield for felony crimes such as manslaughter.
Some of those enjoying legal protection are fringe Mormon families like Mariah’s, many of whom live in the state’s north. But a large number of children have died in southern Idaho, near Boise, in families belonging to a reclusive, Pentecostal faith-healing sect called the Followers of Christ... (continues)
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