Health Care

In an article in the Journal of Medical Ethics — one of the field’s most influential publications — an independent researcher argues that transgender people should be granted access to AI-generated “digital twins” to allow them to “design” themselves before undergoing transition interventions. From “Designing Inclusive Digital Twins: Ethical and Practical Considerations for Trans Healthcare”: DTs combine AI, big data analytics and sensor technology to create dynamic, patient-specific models that enhance diagnosis, prognosis and treatment planning. For trans individuals, DTs could transform gender-affirming care by offering precise simulations of HRT effects, such as changes in body composition or emotional well-being, or visualising surgical outcomes tailored to individual goals. This means a lot of reprogramming of AI software: Current datasets often Read More ›

There is a move afoot among bioethicists to allow written directives by dementia patients, signed before the patients have become incompetent, to force caregivers to withhold spoon-feeding and liquids from those patients. Now, one of the country’s most notable and oft-quoted bioethicists, Arthur Caplan, has taken a position in favor of such a policy, in an article in the online publication Medscape.

First, Caplan discusses the potential withholding of feeding tubes (artificial hydration and nutrition, or AHN, in medical parlance), which is unquestionably legal because AHN is a medical treatment that involves surgery and medically prepared nutrients and — like other treatments, ranging from surgery to chemotherapy — can be ordered through advance directives to be withheld or withdrawn. Right or wrong, that’s a done deal. (He brings up the Terri Schiavo case, about which he and I significantly disagree, but let’s not relitigate that here.)

Then, however, Caplan takes the next step — which is currently on the cutting edge of bioethical discourse. From “Artificial Hydration and Nutrition in Dementia: Ethicist Weighs In”:

Is feeding by spoon the same as medical intervention with artificial forms of hydration and nutrition? I believe it is. I believe that when you say “no more food and nutrition,” it isn’t just the equipment. I’ll put it simply: It’s who’s on the end of the spoon. If nurses or doctors are feeding, it’s medical. It’s professional care, and you should be able to say no to that.

Good motives sometimes lead to terrible places. Such is the case with the understandable desire to increase the organ supply, which for years has tempted some bioethicists to stretch the ethics of transplant medicine beyond the breaking point.

Now, in the New York Times, three doctors promote the idea of “redefining death” to allow patients to be killed for their organs. First, the authors lament the difficulty of obtaining healthy organs from people whose hearts stop irreversibly after the removal of life support. They also bemoan the shortage of “brain-dead” donors. Then, after discussing a controversial approach that restarts circulation after cardiac arrest (but not to the brain) — which I have posted about before — they get down to the nitty-gritty of redefining death. From “Donor Organs Are Too Rare. We Need a New Definition of Death“:

The solution, we believe, is to broaden the definition of brain death to include irreversibly comatose patients on life support. Using this definition, these patients would be legally dead regardless of whether a machine restored the beating of their heart.

So long as the patient had given informed consent for organ donation, removal would proceed without delay. The ethical debate about normothermic regional perfusion would be moot. And we would have more organs available for transplantation.

The “dead donor rule” is the cement that binds the public’s trust in organ transplant medicine. Under the DDR (other than in living donations, such as of one kidney) organs cannot be procured unless donors, in the words of the Munchkins, are not merely dead but really most sincerely dead.

There are two means of declaring death. Let’s call the first “heart death,” that is an irreversible cessation of all cardio/pulmonary function. The other is popularly known as “brain death,” (death declared by neurological criteria) in which function in the whole brain and each of its constituent parts have irreversibly ceased. The key word in both means of declaring death is “irreversible.”

But something appears to have gone badly off the rails in the field of procuring organs after heart death. A long New York Times expose found cases of patients who were clearly alive when organ procurement began. At the same time, a very disturbing report by the Department of Health and Human Services contained similar findings.

First, the NYT. From “A Push for More Organ Transplants Is Putting Donors at Risk”:

Last spring at a small Alabama hospital, a team of transplant surgeons prepared to cut into Misty Hawkins.…Days earlier, she had been a vibrant 42-year-old with a playful sense of humor and a love for the Thunder Beach Motorcycle Rally. But after Ms. Hawkins choked while eating and fell into a coma, her mother decided to take her off life support and donate her organs. She was removed from a ventilator and, after 103 minutes, declared dead.

A surgeon made an incision in her chest and sawed through her breastbone. That’s when the doctors discovered her heart was beating. She appeared to be breathing. They were slicing into Ms. Hawkins while she was alive.

The horror! Why are such awful things happening?

The New England Journal of Medicine is at it again. It just published a dire warning that deporting illegal aliens will hobble our healthcare system. First, the authors give a dubious example of the kind of calamity that will supposedly happen to our most vulnerable patients without illegal immigrant workers. From, “Who Will Care for America?“: As physicians, we have witnessed firsthand the harms that such policies pose to patients and health care workers alike. In one case we know of, an older patient with metastatic cancer fell at home and lay on the floor for days before being found by a family member; he died shortly after being admitted to a local hospital. Though it’s uncertain whether he would Read More ›

Last month, I wrote about Adriana Smith, the pregnant young mother who tragically experienced blood clots in the brain and was declared dead by neurological criteria. Adriana’s body was maintained with mechanical support to allow her baby to be gestated. I thought that was the right decision. Here is how I analyzed the situation in my post: That column was quite controversial — something new for me (eye roll) — and I received many angry responses (as well as expressions of support). Most of my critics claimed that it was somehow undignified to force a dead woman to gestate a baby. I heard the trite Handmaid’s Tale trope more than once. Well, time has passed, and thankfully Adriana’s baby was Read More ›

As established by the great medical humanitarian, the late Dame Cecily Saunders, hospice was designed to treat “total pain” of patients — whether physical, emotional, or spiritual — to the end of ensuring that the care offered is about living, not just death. When it works as intended, as it did for both my parents, the beneficence offered to patients and their families cannot be quantified.

Alas, the hospice movement is in serious trouble. I can’t tell you how often now people approach me after a speech or call in on talk radio to tell me that they do not trust hospice to properly care for their loved ones.

Why has this happened? My friend Ira Byock, the great palliative doctor and author of Dying Well, has noted that the for-profit sector of the industry too often does not live up to the hospice promise of profoundly personal and compassionate care. Also, there is a problem with fraud and abuse, about which, Byock insists, there must be institutional “zero tolerance.” In addition, the integration of palliative care within the American health system has stalled, despite demonstrating that quality care for seriously ill and dying people is both feasible and affordable.

And from my perspective — not Byock’s — the assisted suicide movement has been a body blow to the hospice movement. Partly this is because the media is so besotted with “aid in dying” propaganda that there is little room left to tell good hospice stories. But I also blame institutional hospice organizations, which pretend that assisted suicide isn’t a mortal threat to the hospice philosophy. As a consequence of this institutional cowardice, all one hears from hospice organizations about legalizing assisted suicide is the proverbial sound of silence, further diminishing the importance of the sector.

What a tragedy. A Georgia woman named Adriana Smith was two months pregnant when she suffered blood clots to the brain and was later declared deceased by neurological criteria, i.e., “brain dead.” Under the law, that means Adriana’s body is a cadaver. The medical team has kept her body functioning so that her baby can continue to gestate. The baby is now at 21-weeks gestation, which is close to viability. (Whether a true corpse can gestate for months is a different question that I won’t address here.) From the AP story: Smith’s family says Emory doctors have told them they are not allowed to stop or remove the devices that are keeping her breathing because state law bans abortion after cardiac activity Read More ›

“Futile care” is a bioethics theory in which doctors are authorized to refuse wanted life-sustaining treatment based on their belief about the quality of a patient’s life. It can be cruel — and on occasion, mistaken. Prominent medical journals usually support futile-care theory. But the New England Journal of Medicine just published a contrary column by a compassionate doctor who rejected that approach in order to keep hope alive for his terminally ill patient and her family. The oncologist, Dr. David N. Korones, placed a young terminally ill cancer patient named Zoha in an experimental drug trial. At first all seemed well, then her condition worsened. From, “The Last Dose”: Although the rules of the trial allowed Zoha to remain Read More ›

There are some 91,000 people with severe kidney disease waiting for transplants. Alas, cadaver and living donors are insufficient to fill the need. That has some well-meaning activists pushing to increase the number of available kidneys by legalizing organ-selling. The psychiatrist and American Enterprise Institute senior fellow Sally Satel is probably the premier proponent of this approach. She has skin in the game, having received two living-donor organs. Writing in the Free Press, Satel promotes a bill that would allow kidney suppliers to become vendors and receive a tax credit. From, “I Had Two Kidney Transplants: I Want Donors to Get Paid.” But now, legislation is on the table that would save these patients’ lives while eliminating those concerns. On Read More ›