Medical Futility Blog

Better Informed Consent Technology: New Tools to Protect Patient Autonomy

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Mon, 08 Jun 2026 16:21:06 +0000

Join me at ICCEC on Thursday, June 11, 2026, at 2:00PM for Better Informed Consent Technology: New Tools to Protect Patient Autonomy.

My presentation shows how we should use technology better to improve informed consent.

Informed consent is the most fundamental issue in clinical ethics. Since its 1970s origins, clinicians have mostly conducted informed consent through lengthy polysyllabic discourse. But outcomes from this approach are poor. Fortunately, change is afoot. Increasingly, new technologies are facilitating better informed consent. This session reviews five new tools and colorfully explains how they improve patient understanding.

1. Virtual Reality - Virtual reality delivers information in highly immersive and realistic ways. This helps patients better appreciate the nature of their treatment options.

2. AI Translation – Despite legal mandates, clinicians regularly fail to use qualified interpreters when talking to patients with limited English proficiency. The latest real-time speech-to-text transcription robots enable accurate communication across language barriers.

3. Ambient AI – Patient adherence/compliance remains low across treatment settings. Ambient AI reduces this by facilitating plain language visit summaries. It records the visit and uses generative AI to create usable documentation.

4. Consent-GPT – Some clinicians are even more fully delegating consent to artificially intelligent systems. This addresses limits of human-only processes. Consent-GPT provides more systematic and up-to-date information. And it avoids time pressures because patients can consult Consent-GPT for as long as they want and whenever they want.

5. Patient Decision Aids – Multiple Cochrane and other systematic reviews of hundreds of studies shows that these highly visual, evidence-based educational tools dramatically improve patient understanding.

Unfortunately, adoption of these new technologies is slow. Clinical ethicists must explore ways to increase clinician uptake. It is not enough to design communication materials and best practices. To ensure patient safety and protect patient rights, we must also ensure that they get adopted and assimilated into clinician-patient encounters. It is not 1975. We must stop communicating with patients as if it were.

Medical Aid in Dying in Colorado

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Sun, 07 Jun 2026 12:52:58 +0000

It's been a rewarding and enjoyable weekend discussing MAID, VSED, and related issues other at the Colorado End of Life Options annual conference.

Psychiatric VSED (Iris Dekker)

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Sun, 07 Jun 2026 06:30:00 +0000

Like patients using MAID, patients using VSED typically have serious physical illnesses such as cancer and ALS. But just as an increasing number of patients seek MAID for psychiatric reasons, an increasing number of patients seek VSED for psychiatric reasons.

Rupa Subramanya offers the compelling case of 19-year-old Iris Dekker. While tragic, both VSED and MAID are justified responses to prolonged, treatment-resistant suffering of any kind.

VSED Remains Key End-of-Life Option Even as MAID Spreads

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Sat, 06 Jun 2026 06:30:00 +0000

Patients with ALS in Massachusetts, like patients elsewhere, are disproportionately interested in controlling the timing and manner of their death. Because MAID is not available in Massachusetts, Chuck Abdalian used VSED.

Few dispute the advantages of MAID over VSED. It is faster: minutes instead of days. It is far less expensive: hundreds of dollars instead of tens of thousands. But advocates for MAID must be careful to not overly denigrate VSED.

VSED remains an important options for many patients who live in the 42 U.S. jurisdictions where MAID is not authorized. And VSED remains an important option even in the 14 jurisdictions where MAUID is authorized because many patients there either cannot qualify or cannot access MAID there.

Terry & Chuck Abdalian

Robot Surrogates - for Unrepresented and Other Incapacitated Patients

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Fri, 05 Jun 2026 21:47:33 +0000

Join me at ICCEC next Friday, June 12, 2026, at 11:30AM in Room 3 for Robot Surrogates: AI’s Growing Role in Both Guiding and Making Healthcare Decisions for Unrepresented and Other Incapacitated Patients.

My presentation shows how to use "robot surrogates" for unrepresented and other incapacitated patients.

Surrogates. Substantial evidence shows that surrogates exercise substitute judgment unsatisfactorily. They are poor at making the same treatment decisions for incapacitated patients that those patients would have made for themselves. In response, clinical ethicists have engaged in substantial discussion about Patient Preference Predictors and similar models. Proponents argue that PPPs can guide surrogates to make decisions that better accord with the incapacitated patient’s goals, preferences, and values. Now, pervasive use of AI and large language models in healthcare has exponentially expanded these discussions. Using both personal and demographic data, robot surrogates can predict how this patient would decide in this situation.

Unrepresented Patients. Using robot surrogates can be even more helpful with one of the biggest and most persistent problems in clinical ethics: decision making for unrepresented patients. Different jurisdictions and different healthcare systems take variable approaches. For example, the decision maker for an unrepresented patient might be a hospital committee, a single physician, or a public guardian. But as strangers to the patient, all are even less likely than an appointed agent or default surrogate to make value congruent treatment decisions. Consequently, the relative value of AI/LLM robot proxies is even greater for unrepresented patients than for incapacitated patients with surrogates. And we confront even bigger questions. Should robot proxies merely “guide” the decision maker? Can they establish default choices? Or even “be” the decision maker.

How to Use Robot Surrogates. This presentation describes and illustrates three new roles for robot surrogates: (1) resolving conflicts between family members, (2) resolving surrogate uncertainty about what the patient would want, and (3) guiding decision making for unrepresented patients. This presentation summarizes the extent to which robot surrogates are already being used for these roles and obstacles to wider implementation.

Clinical Ethics Unconference 2027

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Fri, 05 Jun 2026 05:30:00 +0000

Submit your abstract for the 2027 Clinical Ethics Unconference. It will be in Denver, Colorado, on Monday and Tuesday, March 8-9, 2027.

Consistent with the interactive and practice-oriented spirit of the Unconference, organizers welcome multiple submission formats designed to support a variety of presentation styles, project stages, and discussion goals. Some formats are intended for emerging ideas, collaborative problem-solving, and works in progress, while others are better suited for implemented initiatives, practical skill-building, or more developed projects with actionable outcomes and lessons learned.

After the Unconference, later the same week, is the Annual Children's Hospital Colorado Pediatric Ethics Conference. The Children's Ethics Team welcomes proposals to be featured during the two-day conference.

Brain Death - Texas Court Prohibits Hospital from Performing Tests

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Thu, 04 Jun 2026 19:05:55 +0000

I recently blogged about a New York court that issued an injunction prohibiting the hospital from conducting brain death testing. This is one of the most frequent types of disputes involving brain death.

Now a Texas court has issued a similar injunction. Annelise Camp v. Texas Children's Hospital, No. 202635830 (Harris County, Tex. June 2026). The parties go back to court next week.

Hospices, Medicare, and MAID - CMS Urged to Investigate

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Thu, 04 Jun 2026 05:30:00 +0000

Almost all 30,000 U.S. patients who received a MAID prescription have been on hospice. And hospices receive almost all of their income from Medicare. Yet, the Assisted Suicide Funding Restriction Act of 1997 (ASFRA) prohibits federal money from being spent on MAID. How can these facts be reconciled?

Hospices are careful to avoid billing for services related to MAID. So, there have been no violations of ASFRA. But some groups are pushing CMS to more closely scrutinize and regulate ASFRA compliance.

Medical Aid in Dying in New Jersey - What Happened?

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Wed, 03 Jun 2026 11:36:23 +0000

The first of three-part newspaper series examines medical aid in dying in New Jersey. The subtitle captures the problem: "Assisted death has been legal in N.J. for years. But terminal patients still have almost nowhere to turn."

International Shared Decision Making Conference (ISDM 2026)

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Wed, 03 Jun 2026 11:20:23 +0000

Registration is open for the 2026 International Shared Decision Making Conference (ISDM 2026), taking place July 7–10, 2026 in Hanover, New Hampshire and virtually.

This year’s conference theme, A Wider Lens, will bring together clinicians, researchers, patient partners, health system leaders, educators, trainees, and implementation professionals from around the world to explore advances in shared decision making and patient-centered care.

Conference highlights include:
• 5 Continuing Education (CE) credits available through plenary sessions
• Pre-conference workshops on July 7
• Conference dinner add-on tickets (available through June 6)
• Full agenda and scientific programming now available online

Medical Aid in Dying - Back to U.S. Supreme Court

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Wed, 03 Jun 2026 05:30:00 +0000

In 1997, the U.S. Supreme Court left the legality of medical aid in dying to the "laboratory of the states." Today, fourteen states permit MAID. Other do not.

But some litigants are planning to return to the U.S. Supreme Court in the next few years. This time, the issue is not about constitutional protection. It is about constitutional prohibition.

United Spinal and other groups have filed identical lawsuits in California, Colorado, and Delaware. They argue that MAID violates the federal ADA and the Equal Protection clause. They lost all three cases at the district court level.

But this was apparently the plan all along. One of the plaintiffs explained: "this is a litigation strategy we’ve developed to ultimately get to the Supreme Court.” Plaintiffs have already appealed the California and Delaware losses to the Third, and Ninth Circuits. They will surely appeal the Colorado loss to the Tenth Circuit. One or more losses there will give them grounds to seek certiorari.

Advance Directives for Dementia - VSED + MCF

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Tue, 02 Jun 2026 22:14:47 +0000

It was an honor to collaborate with the National VSED Advance Directive Committee to create an improved Advance Directive for Voluntary Stopping Eating and Drinking (AD for VSED).

This advance directive allows people who who will eventually lose both capacity and the ability to eat and drink without manual assistance (due to progressive dementia and other conditions) to shorten the natural dying process by the legal options of either completely stopping eating drinking or, if that isn’t possible, to significantly reduce it, called Comfort Feeding Only.

Here are key bullet points about this new dementia VSED advance directive:

The AD for VSED is available in both downloadable (fill-out-by-hand) and fill-out-online (recommended for ease of use) formats.
A recent journal article in The Journal of Law, Medicine & Ethics article (open source) authored by the National VSED Advance Directive Committee explains why this directive is the now the best available and includes a table that compares all the available advance directives for stopping manually assisted eating and drinking.
A Journal of Pain and Symptom Management article, Mr. Smith Has No Mealtimes: Minimal Comfort Feeding for Patients with Advanced Dementia explains an alternative to VSED
A recent New York Times article also addresses this newer alternative to VSED: Comfort Feeding Only, She didn’t want to live with advanced dementia; so why was she being kept alive?
A related document, T he Living With Dementia Advance Directive, allows people who still have capacity to address issues such as where they want to live, who they want to provide their care, when to stop driving, etc. Elder law attorney, Lisa Brodoff, and Robb Miller created this directive many years ago and recently updated and improved it. Like the AD for VSED this directives is available in both downloadable (fill-out-by-hand) and fill-out-online (recommended) formats.

Brain Death Quiz

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Tue, 02 Jun 2026 05:30:00 +0000

This is a solid question on brain death from a service that helps medical students prepare for the USMLE. I bet that many clinicians select incorrect answers.

VSED Book - Now in Chinese

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Mon, 01 Jun 2026 05:30:00 +0000

I just received a Chinese paperback version of our Oxford University Press book on VSED. Interest in this end-of-life option has been growing exponentially in the United States and across the world.

On Death & Dying - Radio Show

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Sun, 31 May 2026 05:30:00 +0000

There are now dozens of podcasts from geriatricians, palliative care clinicians, and death doulas. But at least on radio station has a regular broadcast show, On Death & Dying.

KGNU airs this quarterly program hosted by certified thanatologist Kim Mooney. At least a few episodes have focused on MAID.

Nearly a Third of Americans Live in States With Legal Aid in Dying

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Sat, 30 May 2026 13:26:27 +0000

It was a pleasure to be a part of today's New York Times story on the state of medical aid in dying in the United States.

National Aging & Law Conference

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Sat, 30 May 2026 05:30:00 +0000

Submit your proposal here for the 2026 National Aging & Law Conference by June 15, 2026.

The theme is The Right to Age Well: Advancing Law, Equity, and Human Dignity. The conference is October 9-10, 2026, at Syracuse University College of Law, Syracuse, New York.

Hospitals Must Resolve NBT/PIT Cases Faster

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Fri, 29 May 2026 05:30:00 +0000

The UK Court of Protection has again criticized a hospital for failing to timely bring an application to withdraw life-sustaining treatment.

The latest case concerns OQD, who suffered a 2013 assault that resulted in hypoxic brain damage. He has had a prolonged disorder of consciousness for the last 12 years with no material neurological improvement.

Therefore, it's remarkable that the hospital only now claims that it is in OQD's best interest to withdraw clinically assisted nutrition and hydration. If that is true now, then it was equally true years ago. After all, OQD's condition has not changed.

The Court writes that the hospital failed to consider OQD’s best interests in a “timely and effective manner.” Clinicians abused OQD by continuously administering treatment inconsistent with the patient's best interest.

Deceased Donation Decline - Largest in United States History

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Thu, 28 May 2026 05:30:00 +0000

Apparently in response to high-profile media stories criticizing the fairness, safety, and transparency of the U.S. transplant system, combined with broader decreased trust in medicine; deceased donation dropped every month in the second half of 2025.

Empowering End of Life Care: Medical Aid in Dying Second Annual Conference

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Wed, 27 May 2026 17:47:03 +0000

In 10 days I will be in Denver, Colorado for Empowering End of Life Care: Medical Aid in Dying Second Annual Conference. I am looking forward to this meeting of experts on different aspects of MAID.

Patients Need Pictures - Better Healthcare Communcation

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Wed, 27 May 2026 05:30:00 +0000

The latest in a long line of studies confirms that combining graphical and textual information, as opposed to text only, improves communication and reduces decisional conflict when choosing across multiple competing medical interventions.

The authors recommend that organizations involved in disseminating scientific evidence should consider endorsing a combined graphical and textual approach and adopting more intuitive and accessible communication methods.

Canadian Journal of MAID - New Issue

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Tue, 26 May 2026 06:00:00 +0000

The latest issue of the Canadian Journal of MAiD has been published. This journal is published twice yearly in English and French. It features peer-reviewed articles that present robust clinical perspectives and practical insights on the approach to medical assistance in dying. Articles include:

MAiD Research Forum 2026: Research to Inform Practice and Policy: Abstracts
Navigating End-of-Life Choices: Perspectives of Individuals Living with Multiple Sclerosis on Medical Assistance in Dying in Various Hypothetical Situations
Dementia and MAiD
Disrupting Death and Medical Assistance in Dying (MAiD): Podcasting as Public Scholarship and Knowledge Mobilization

MAID Approaches 2% of Deaths in Three U.S. States

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Mon, 25 May 2026 13:38:52 +0000

Medical aid in dying is authorized in 14 U.S. states. But usage rates vary tremendously.

Rates remain low in most states, and especially low in New Jersey and Washington, DC.

On the other hand, rates have been rising significantly in Colorado, Oregon, and Vermont. In those three states, MAID now comprises between 1% and 2% of all deaths. One big factor in Oregon and Vermont is a huge number of out-of-state patients.

Dead Donor Rule - More Calls for Compliance

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Mon, 25 May 2026 13:30:56 +0000

As I have explained, for example in this University of Chicago video, clinicians across the country violate the dead donor rule every single day. These violations take at least four different forms. One of them is getting more attention.

The UDDA requires that brain death be determined according to accepted medical standards. Those are most probably the guidelines issued by the AAN. But a huge fraction of U.S. hospitals fail to determine BD/DNC in accordance with those guidelines.

Nevada, New York, New Jersey, and a few other states have statutes or regulations specifically requiring use of those guidelines. Now advocates in other states, like Kansas, are pushing for the same clarity.

Legal Update 2026: Top 10 Legal Developments in Bioethics & Public Health

noreply@blogger.com (Thaddeus Mason Pope, JD, PhD, HEC-C) — Sun, 24 May 2026 07:30:00 +0000

Join us in Indianapolis from October 14-17, 2026, at ASBH - the biggest bioethics meeting in the United States.

We continue our decade-plus popular series Legal Update 2026: Top 10 Legal Developments in Bioethics and Public Health. Plus, we will again add an extra session after the panel for extended discussion.