Medical Futility Blog

Unwanted Medical Treatment Harms Patients: Taxonomy of Healthcare Consent Infractions

2026-05-01T00:30:00.000-05:00

My latest article on the sad state of informed consent in U.S. healthcare is now available here from the University of Illinois Chicago Law Review.

In Unwanted Medical Treatment Harms Patients: Taxonomy of Healthcare Consent Infractions, I describe four common ways in which clinicians administer treatment that patients do not want.

Minimal Comfort Feeding to Avoid Late-Stage Dementia

2026-04-30T09:25:08.984-05:00

Today's New York Times describes minimal comfort feeding to avoid living into and with late-stage dementia.

MCF is an attractive alternative to VSED by advance directive or surrogate. We first described MCF in JPSM last year. We describe VSED advance directives here.

NY Hospital Finally Determines BD/DNC for Anthony Gestone

2026-04-30T07:40:51.580-05:00

For weeks, the family of Anthony Romeo Gestone pushed Nassau University Medical Center to delay brain death evaluations. But on Tuesday, they agreed a 24-hour deadline to transfer to another medical facility.

NUMC contacted more than a dozen medical facilities to explore transfer options. But each declined. The family also abandoned their plan to transfer to New Beginnings, which provides long-term rehabilitation services to survivors of traumatic brain injury.

Since Gestone was not transferred, NUMC conducted testing for BD/DNC. Those tests were positive. The family was given one hour to pay their final respects before clinicians removed technologic support.

Brain Death Tests - India Court Orders Reconsideration

2026-04-30T00:30:00.000-05:00

For some time, Kerala-based medic and activist S. Ganapathy has been challenging the legitimacy of brain death determination. For example, he alleges that Form 10, which certifies a patient as brain dead, is sent to doctors' rooms for signature, who sign the same without so much as seeing the patient.

This week, Ganapathy achieved some measure of success. The Supreme Court of India indicated that it will seek expert opinion on whether brain angiogram and electroencephalogram (EEG) are better modes to determine if a person is brain dead, compared to the apnea test followed currently.

A bench of Justices Vikram Nath and Sandeep Mehta said it would ask the All India Institute of Medical Sciences (AIIMS) Neurology Department to constitute the committee which can provide its views on the safety and viability of these tests.

Hastings Center Sadler Scholar - Call for Applications

2026-04-29T12:03:46.212-05:00

Apply here by June 5 to become a 2026-2027 Hastings Center Sadler Scholar.

Open to advanced doctoral students with a career focus on scholarly research and education in AI ethics, ethical, legal, and social implications of human genomics, or health care ethics/health humanities. Sadler Scholars with ELSI-focused research interests also become CERA Fellows, with additional opportunities for mentoring and collaboration.

Brain Death - Hospital May Conduct Tests Over Parental Objections

2026-04-29T06:36:31.924-05:00

Anthony Gestone was admitted to Nassau University Medical Center on April 9, 2026. His parents have prevented clinicians from conducting brain death testing for the past few weeks. But unless Gestone's parents transfer him by 5:00PM today, NUMC clinicians may then finally conduct those tests.

Like just a handful of states, New York affirmatively clarifies that clinicians do NOT need consent to conduct brain death tests. But that rule is complicated by a separate New York regulation that requires religious accommodation not only after determination of death but also in the determination itself.

The intersection of the "no consent" rule and the "religious accommodation" rule is now moot in the instant case. Religious accommodations in brain death cases are usually measured in terms of hours. This case, now weeks old, has already exceeded the bounds of reasonable accommodation.

One City Talks about Death - La Crosse, WI

2026-04-29T00:30:00.000-05:00

I only go to La Crosse, Wisconsin once per year as part of an annual bike ride. But I should visit more often. They have better paved the way to value congruent care for incapacitated patients.

More than 90 percent of the people who die there have an advance directive or similar plan for end-of-life care – that’s three times higher than the national average." As this Wisconsin Public Radio story puts it: "One City Talks about Death."

Brain Death - Must NY Hospitals Delay Testing

2026-04-28T00:30:00.000-05:00

23-year-old Anthony Romeo Gestone was seriously injured in a car accident on April 9, 2026. In this 22-minute video, Anthony's parents discuss their interactions with clinicians at Nassau University Medical Center.

Despite Anthony's parents' objections, the hospital still planned to proceed with brain death testing. So, on April 17, 2026, the parents obtained a TRO prohibiting NUSM from administering brain death tests.

The parties will be back in court today (April 28, 2026) to argue whether N.Y. religious accommodation regulations require the hospital to delay testing. Apparently, the parents are not seeking complete abstention from testing. They just want a delay for 14 days or until May 1, 2026.

MAID, VSED, and VSED Advance Directives in Ohio

2026-04-27T00:30:00.000-05:00

State Rep. Eric Synenberg has introduced legislation that would permit medical aid in dying (MAID) in Ohio. But because it is patterned on the classic "U.S. model," even if this bill passes, many seriously ill Ohioans will not be eligible.

Consequently, Ohio clinicians and families should better familiarize themselves with VSED and VSED by advance directive. I discussed both these Ohio-legal options in this presentation at the Cleveland Clinic.

VSED - All Star Panel in Bellingham, WA

2026-04-26T00:30:00.000-05:00

This recent panel presentation includes serious experts on VSED:

Wendy Brown: Producer/Co-Director/Death Doula/Daughter of Cheryl Hauser
Kate Christie: Author of The VSED Handbook: A Practical Guide to Voluntarily Stopping Eating and Drinking
Erin Glass: Partner and Attorney at Chuckanut Law Group, specializing in estate planning, elder law, and VSED
Phyllis Shacter: Author of Choosing to Die
Sarah Longacre: Co-Director/Birth Doula/Daughter of Cheryl Hauser

These women all have significant experience with VSED: Phyllis with her husband and Kate with both her parents. Each then wrote a book and did other education on VSED. Erin has counseled her estate planning clients. Wendy and Sarah with their mother. They have already done much education and are now producing a film.

Assisted Suicide Defendant Gets No Jail Time in Colorado

2026-04-25T18:50:48.908-05:00

Every U.S. state criminally prohibits assisted suicide. Kim Roller violated that law when she helped her mother obtain equipment to hasten her death from inert gas asphyxiation.

While Final Exit Network guides advise individuals nationwide on how to do this, they would never physically help. Roller did. But as in most assisted suicide prosecutions, the penalties were light. Roller accepted a plea deal with no jail time. She will serve two years of unsupervised probation, pay $25,000 to a medical aid in dying charity, and complete 80 hours of community service.

VSED - Information Sessions from Talk VSED

2026-04-24T06:05:24.022-05:00

Talk VSED is working to raise awareness of Voluntarily Stopping Eating and Drinking (VSED) with several upcoming information sessions.

The information sessions are on:

Tuesday 5 May 10-11am (1 hour information session)
Thursday 7 May 7-8pm (1 hour information session)
Saturday 9 May: 10-11am (1 hour information session) & 11am-12noon - video of people's reflections on VSED & discussion

They are especially pleased that the Saturday session will be followed, from 11am to 12 noon, by the premiere (!) of a short video Talk VSED put together featuring several of our supporters sharing their reflections on VSED as an end of life choice. This will be followed by an informal discussion.

The Talk VSED website will be updated from Monday 4 May, where they will provide additional, comprehensive and useful information for people considering VSED.

NYU Transplant Ethics & Policy Conference

2026-04-23T00:30:00.000-05:00

I am delighted to participate in the NYU Transplant Ethics & Policy Conference on October 22, 2026. I had been invited to participate in previous years but had conflicts. The agenda is available here.

The 2026 NYU Transplant Ethics and Policy Conference convenes leading voices across clinical care, research, law, and patient advocacy to examine the most urgent ethical and policy questions shaping the future of transplantation. From evolving national legislation and potential updates to the Uniform Anatomical Gift Act, to the lived experiences of donor families, this meeting centers the complex human and societal dimensions of organ donation and transplantation.

The program will explore critical issues at the forefront of the field, including the ethics of donation after circulatory death and emerging perfusion strategies, as well as the rapidly advancing frontier of xenotransplantation and its implications for clinical trials, pediatric populations, and broader access. Anchored by multidisciplinary dialogue and diverse perspectives, the conference is designed not only to interrogate today’s challenges—but to define actionable, ethically grounded pathways for the next era of transplantation.

Brain Death - New York Court Enjoins Testing

2026-04-22T06:45:08.947-05:00

23-year-old Anthony “Tony” Gestone was gravely injured in car accident on April 9, 2026. Clinicians at Nassau University Medical Center now suspect he is brain dead. But the family has obtained a court order blocking the hospital from performing clinical tests.

No statute or regulation in the United States requires clinicians to obtain family consent for brain death testing. But courts in California, Montana, Kansas, Virginia, and other states have issued at least temporary restraining orders temporarily prohibiting such testing.

End-of-Life Healthcare - Plan for Smooth Landing, Not a Crash

2026-04-21T00:30:00.001-05:00

In this brief video, physician Pete Reagan helpfully analogizes end-of-life healthcare to landing a glider or plane.

"Dealing with the end of life is a lot like setting up for a good landing after a long flight. It's better to land well in a good field than to crash into the farthest tree we can reach."

Advance Directive Pregnancy Exclusions Struck in Michigan

2026-04-20T00:30:00.003-05:00

Like dozens of other states, Michigan limits the effects of an advance directive when the patient is pregnant.

MCL 700.5507(5)(3) (“This patient advocate designation cannot be used to make a medical treatment decision to withhold or withdraw treatment from a patient who is pregnant that would result in the pregnant patient’s death.”)
MCL 700.5509(l)(d) (“The designation cannot be used to make a medical treatment decision to withhold or withdraw treatment from a patient who is pregnant that would result in the pregnant patient’s death.”)
MCL 700.5512(1) (“A patient advocate cannot make a medical treatment decision ... to withhold or withdraw treatment from a pregnant patient that would result in the pregnant patient’s death.”).

But on April 16, 2026 (coincidentally National Healthcare Decisions Day), the Michigan Court of Claims ruled that all pregnancy-related exclusions are unconstitutional and invalid. The Court directed they be struck and given no force or effect. Koskenoja v. Whitmer, No. 25-000165-MM (Mich. Ct. Claims 2026).

Judge Sima Patel

Clinical Ethics Training - Core Documents

2026-04-19T00:30:00.001-05:00

A new special edition of Health Care Ethics USA addresses various models and modes for transmitting ethics education. It is delightful to see two of my own articles listed as curriculum documents for a template clinical ethics fellowship.

Erroneous Brain Death Determination - Mississippi Supreme Court Rules

2026-04-18T00:30:00.003-05:00

The Mississippi Supreme Court has issued its judgment in Denison v. Mississippi Organ Recovery Agency. 57-year-old Denison was determined dead on neurologic criteria (brain dead) at Anderson Regional Medical Center. But she later was determined NOT to be dead at MORA's organ recovery center.

Denison's family brought several claims against hospital physicians and MORA. The trial court granted summary judgment to MORA, citing the immunity in the Uniform Anatomical Gift Act. The Supreme Court reversed and remanded on procedural grounds. It declined to rule on the immunity question.

UK Medical Futility / NBT / PIT Disputes - Must They All Go to Court?

2026-04-17T00:30:00.007-05:00

Last month, I blogged about a UK Court of Appeal judgment in Townsend v Epsom & Helier University Hospitals NHS Trust. That case will now be reviewed by the UK Supreme Court.

The Court of Appeal clarified that all decisions about incapacitated adults must be made in the patient’s best interests. If all parties are in agreement that it is not in the patient’s best interests to continue life-sustaining treatment, then this can be withdrawn without application to court.

But if there is disagreement between any of the parties that cannot be resolved by discussion and/or mediation, then the matter should be referred to the Court of Protection. There is no carve out for “clinical decisions.” The hospital cannot pre-empt court proceedings by unilaterally withholding or withdrawing treatment on “clinical” grounds. A decision whether or not to withdraw treatment must be a best interests decision.

Australasian Association of Bioethics and Health Law Conference 2026

2026-04-16T08:46:00.000-05:00

The 2026 Australasian Association of Bioethics and Health Law (AABHL) conference will be hosted by the Centre for Health Law and Policy, University of Western Australia in Perth from 29 November to 2 December 2026. Submit your abstract by the end of May.

Long Shadow of Thaddeus Mason Pope

2026-04-15T09:30:00.001-05:00

Perhaps if I keep working hard, I will cast a shadow on bioethics and patient rights as long as this one.

Australian Centre for Health Law Research (QUT) at ICEL5

2026-04-14T22:57:00.001-05:00

Here is both core staff and adjunct faculty of the Australian Centre for Health Law Research (QUT) at ICEL5 in April 2026.

Here is just one example of the scope and depth of expertise. Most of the expert evidence in the recent South Africa constitutional petition on MAID/VAD was submitted by people in this photo.

Death Doula - New Job for Nicole Kidman

2026-04-13T16:01:00.006-05:00

I have so benefitted from my exchanges with death doulas over the past few years (especially regarding VSED).

Death doulas are nonmedical companions who provide personalized and compassionate support to individuals, families, and their circles of care as they encounter and navigate death, loss, and mortality. Doulas advocates self-determination and impart psychosocial, emotional, spiritual, and practical care to empower dignity throughout the dying process.

Now, the profession is likely to get a big boost. One of the most famous people on Earth is working to become a death doula: Nicole Kidman.

Granada Conference on End of Life 2027

2026-04-13T02:17:00.004-05:00

The Granada Conference on End-of-Life will be May 10-11, 2027 in Granada, Spain. Abstracts are due September 30, 2026.

The conference welcomes international scholars, clinicians, legal experts, and policy-makers interested in empirical analysis and regulatory aspects related to medical aid in dying (MAID) and other end-of-life practices, including:

Oversight and data reporting on MAID and other end-of-life practices
Eligibility criteria for MAID
Issues related to non-conventional MAID: children, dementia, psychiatry, prisoners, tired-of living
Withdrawal/withholding of life-sustaining treatment and medical futility
Palliative care and palliative sedation
Respect for autonomy in end-of-life, and advance directives
Conscientious objection
Allocation of potentially life-sustaining treatment
End-of-life and organ donation

James Downar - Fresh, Informed Takes on MAID, Palliative Care, Critical Care

2026-04-12T02:30:00.007-05:00

One of the true highlights of ICEL5 was the active participation of James Downar. Here are two reasons.

First, Downar has a rare combination of being experienced and articulate in palliative care, critical care, and MAID. Second, he cuts through many confounding conventions and norms in how most writers and speakers frame these issues. His fresh take makes you approach the material in fresh light, in the way that artists challenge viewers.

Check out his publications and presentations and advocacy work here.