Facing up to face transplants: Pioneering transplants and their pioneering patients

The history of transplantation involves not only pioneering surgeons, but also pioneering patients.  Face transplants are yet another complex case. 

 The Guardian has this (skeptical) story:

Face transplants promised hope. Patients were put through the unthinkableTwenty years after the first face transplant, patients are dying, data is missing, and the experimental procedure’s future hangs in the balance   Fay Bound Alberti 

"On 27 November 2005, Isabelle received the world’s first face transplant at University Hospital, CHU Amiens-Picardie, in northern France. The surgery was part of an emerging field called vascularized composite allotransplantation (VCA), that transplants parts of the body as a unit: skin, muscle, bone and nerves.

...

"The case for face transplants seemingly made, several teams scrambled to perform their nation’s first. The US saw the first partial face transplant (2008), then the first full one (2011); the first African American recipient (2019); the first face and double hand transplant combined (2020); the first to include an eye (2023). There have been about 50 face transplants to date, and each milestone brought new grants, donations and prestige for the doctors and institutions involved.

...

"Add to this picture a set of ethical challenges: face transplants take otherwise healthy people with disfigured faces and turn them into lifetime patients.

...

"In the US, now the world’s leader in face transplants, the Department of Defense has bankrolled most operations, treating them as a frontier for wounded veterans while private insurers refuse to cover the costs.

"With insurance unwilling to pay until the field proves its worth, surgeons have been eager to show results. A 2024 JAMA Surgery study reported five-year graft survival of 85% and 10-year survival of 74%, concluding that these outcomes make face transplantation “an effective reconstructive option for patients with severe facial defects”.

"Yet patients like Dallas tell a different story. The study measures survival, but not other outcomes such as psychological wellbeing, impact on intimacy, social life and family functioning, or even comparisons with reconstruction. 

...

"It’s a double-bind. Without proof of success, face transplants are experimental. And because the procedures are experimental, patients’ long-term needs aren’t covered by grants, leaving patients to carry the burden

...

"Which path will face transplants take? The numbers are already slipping – fewer procedures since the 2010s as outcomes falter and budgets shrink. And unless the field raises its standards, enforces rigorous follow-up, and commits to transparent, systematic data sharing that actually includes patients and their families, there’s no way to demonstrate real success. Without that, face transplants aren’t headed for evolution or stability; they’re headed straight for the dustbin of medical history." 

The job description of intimacy coordinator (for sex scenes in films and plays)

 There's a new profession being practiced, akin to what stunt coordinators have long done in films, to try to keep the actors and stuntmen and women safe.  Intimacy coordinators coordinate sex scenes. 

Here's the story in the New Yorker:

How I Learned to Become an Intimacy Coördinator
At a sex-choreography workshop, a writer discovered a world of Instant Chemistry exercises, penis pouches, and nudity riders to train for Hollywood’s most controversial job.  By Jennifer Wilson 

" It is a new job—so new, in fact, that the union offers a definition on its website: “an advocate, a liaison between actors and production, and a movement coach and/or choreographer” of sex scenes. 

...

"Intimacy coördinators are one of the most visible “wins” of the #MeToo movement. It’s no surprise that the public has begun to perceive a director’s or a star’s attitude toward them as a proxy for his or her attitude about consent and abuse of power.

...

"Intimacy coördinators are part of the gig economy and thus susceptible to the same forces they are hired to mitigate. “We talk about the power dynamics that actors are under,” Jessica Steinrock, the C.E.O. of Intimacy Directors and Coordinators, the largest training program in the industry, said. “We are also under a significant amount of power dynamics.” She went on, “At the end of the day, sticking up for an actor and saying, ‘Hey, no, we can’t film this’—there’s a real chance that we’re going to get fired, and there’s really nothing we can do about it.”

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And the business of coordinating portrayals of intimacy has it's own journal: The Journal of Consent-Based Performance

Informed consent and mortal sin, in the case of Medical Aid in Dying

 Studying morally contested transactions doesn't always suggest paths by which consensus might be reached. It often suggests that conflicting views may be irreconcilable. 

That seems to be the case for the growing legalization of Medical Aid in Dying (MAID, also called medically assisted suicide), about which I've recently blogged several times.  

MAID laws face determined religious opposition.  When Hawaii legalized MAID in 2018, the Catholic Diocese of Honolulu issued some guidance to clergy pointing out that the law's requirements for informed consent seemed to coincide with the requirements for a sin to be a mortal sin.

 Diocese of Honolulu November 5, 2018: Instruction Regarding Sacraments and Funerals In Situations Involving Physician Assisted Suicide for Clergy, Parish Staff and Ministers to the Sick and Homebound
“Everyone is responsible for his life before God who has given it to him. It is God who remains the sovereign Master of life. We are obliged to accept life gratefully and preserve it for his honor and the salvation of our souls. We are stewards, not owners, of the life God has entrusted to us. It is not ours to dispose of” (Catechism of the Catholic Church [CCC], no. 2280)

...

7."For a sin to be a mortal sin, three conditions must be fulfilled:

•  the matter must be grave,
•  the person must have knowledge of the gravity of the matter, and
•  the person must freely choose the matter after sufficient deliberation (see CCC, nos. 1857-1859).

8."The process required by the State of Hawaii for a person seeking medically assisted suicide is meant to guarantee that he or she is fully informed and has made a deliberate consent, thus likely fulfilling the requirements for mortal sin.

9." If a person dies in mortal sin without contrition, such final impenitence results in the “exclusion from Christ's kingdom and the eternal death of hell, for our freedom has the power to make choices for ever, with no turning back” (CCC, no. 1861; see no. 1864)

 

HT: Julio Elias

Informed consent laws, memorialized in an obituary

The NY Times has the obituary, which recalls a long ago medical tragedy (he was left paralyzed by a surgery he had when he was 19) that gave rise to laws about informed consent:
Jerry Canterbury, Whose Paralysis Led to Informed Consent Laws, Is Dead at 78

"Yet by the time of his death, that surgery — with its horrific outcome — had taken its place in the annals of medical law. It had led to a landmark court ruling that fundamentally transformed how doctors deal with patients in evaluating the risks of potential treatment.

“This is probably one of the handful of most significant medicolegal cases in United States history,” said Jacob M. Appel, a doctor and bioethicist.

"The ruling, by a federal appeals court in Washington in 1972, declared that before a patient provided informed consent to surgery or other proposed treatment, a doctor must disclose the risks, benefits and alternatives that a reasonable person would consider relevant.

"Previously, the onus of soliciting that information had rested with the patient, and any description of risks was provided at the doctor’s discretion. A doctor had been considered negligent only when treatment was administered against the patient’s wishes.

“It would not be an exaggeration to say that the opinion is the cornerstone of the law of informed consent” to medical treatment, “not only in the United States, but in other English-speaking countries, too,” said Prof. Alan Meisel, who teaches law and psychiatry at the University of Pittsburgh School of Law."