Basil Baccouche has a forthcoming book, which I found pretty thrilling:
The End of Death: A Surgeon, a Heart Transplant, and the Fight to Change What It Means to Die
Here's my blurb for the book:
“Basil Baccouche is a new star in the constellation of physicians who write. The End of Death tells the gripping story of a tireless doctor (Norman Shumway), a drug (cyclosporine), and a law (recognizing brain death) that combined to make heart transplants one of the miracles of modern medicine.”
Here's a review paper concentrating primarily on transplantation of organs (primarily kidneys) from deceased donors. It closes with a set of open research questions.
Organ Allocation and Transplantation by Itai Ashlagi and Alvin E. Roth, Annual Review of Economics, Volume 18, 2026, Vol. 18:613-645, August 2026, https://doi.org/10.1146/annurev-economics-092425-123425
ABSTRACT: There is a large shortage of solid organs for transplants. This survey reviews the allocation of organs (particularly kidneys), with an emphasis on how deceased donor organs are obtained and allocated in the United States but with pointers to related issues involving living donors and transplantation around the world. We review some of the key institutional details and theoretical and empirical studies and describe some open questions that we hope will continue to attract attention from researchers interested in the economic and operational aspects of organ allocation.
1. INTRODUCTION
"Since at least the turn of the century, organ transplants have attracted considerable interest from economists. This is due both to their importance in modern medicine and to the fact that organ transplantation deals directly with some of the most basic questions of economics—namely, how to efficiently allocate scarce resources and how to make them less scarce. "
...
OPEN QUESTIONS AND RESEARCH DIRECTIONS
This section highlights research opportunities, some of which have been raised above.
1. Can we design allocation rules free of justified envy that place hard-to-match organs quickly enough so that they remain transplantable? A large number of recovered organs that might be transplanted are discarded. How can we increase utilization of marginal-quality organs and get them accepted after fewer offers and less CIT? How can we do this in a transparent and equitable way? How can we use the information about organ quality that arrives during the offering process? 91 How can we use offer refusals in real time? How should we design allocation rules in the presence of social learning and potential information cascades (Zhang 2010, Doval et al. 2024)? How should the variability in centers’ willingness to accept marginal organs be accounted for?
2. How to design priorities to balance efficiency and equity? How can priorities be designed to account for both longevity and urgency (Zhang et al. 2024, Lazenby et al. 2025)? How can priorities depend on patients’ treatments, taking into account that treatment decisions may in turn depend on priorities (Sweat 2023)? Countries use different priority rules, and there is a need to compare these to better understand trade-offs between these rules. The OPTN is seeking to implement continuous distribution allocation policies for hearts and kidneys, which will assign priority points smoothly across patient and match features. There are not yet studies that offer guidance to the resulting (in)efficiencies. 92
3. How should organ quality be measured and reported? The KDPI is currently used for both acceptance decisions by surgeons and prioritization in the allocation system. As supply changes over time, percentiles correspond to different qualities. For example, a KDPI of 85% (which is the threshold for requiring patient consent to receive an offer) in 2018 corresponds to (i.e., has the same underlying nonnormalized KDRI risk measure as) a KDPI of 75% in 2024 due to the recovery of more organs and therefore the higher availability of organs of marginal quality. Would the use of the nonnormalized KDRI substantially change behavior and outcomes?
4. How should surgeons’ and patients’ preferences be elicited? The OPTN allows transplant centers to express preferences via filters that screen organ offers. Despite this, many organs are still declined hundreds and even thousands of times (Agarwal et al. 2021, Guan et al. 2025). How can we better design these filters? Can we use AI to help recommend filters or to predict organ refusals in real time? More broadly, how should waitlist mechanisms be designed given incomplete patient and center preferences?
5. How should transplant centers’ performance be measured? Should transplant centers be incentivized to accept marginal organs, for example, for patients facing many years of dialysis? How should we regulate transplant centers? Are new incentive schemes useful in increasing utilization? For example, how will the acceptance rate and pre-transplant mortality rate metrics impact centers’ behavior? The CMS has also launched the Increasing Organ Transplant Access model, 93 using a long-term field experiment that offers monetary incentives based on the number of transplants performed, graft survival, and percentage of accepted offers (Chan & Roth 2026.) How should we incorporate the huge role that transplant centers play in acceptance/rejection decisions when studying organ allocation mechanisms (Chan & Roth 2024, Ashlagi et al. 2025a)? There is a need for research on designing centers’ performance measures that include outcomes for patients on the waiting list.
6. How should OPO performance be measured? OPOs vary in performance in terms of organ recovery and utilization, and incentive schemes remain controversial. How effective is the new tier system for monitoring OPOs based on donation and age-adjusted transplant rates? How should OPOs be incentivized to improve performance and transparency and to coordinate with transplant centers (see Chan & Roth 2024, Bae et al. 2026, Skowronski et al. 2026)?
7. What should we incorporate in transplant centers’ preferences? Most theoretical models treat patients as the decision makers who accept or reject organ offers. In practice, however, transplant centers exercise substantial discretion over acceptance decisions, listing practices, and setting filters. How do equilibrium outcomes reflect centers’ preferences? There is a need for empirical and theoretical studies of how centers’ characteristics and incentives shape outcomes.
8. Can we design simulation tools that account for equilibrium behavior? Simulations and historical data have been instrumental to the study and design of allocation policies. Existing simulations apply myopic acceptance models that are invariant to the allocation rules. There is a need for simple modern simulation tools that account for the incentives of patients and centers. 94 It would be interesting to create tools that generate not only better equilibrium predictions but also short-term equilibration effects. 95
9. What kinds of experiments should the OPTN conduct? The OPTN conducts very few controlled experiments, despite facing ongoing allocation policy decisions. While simulation tools are useful to inform policy, field experiments offer another approach. Experiments can generate useful data to evaluate different approaches (e.g., for expediting placements). The size and heterogeneity of the United States present opportunities to test different approaches; but they also raise questions about whether different approaches would work differently in different regions, and about how to overcome the reluctance to conduct experiments.
10. How can countries with low transplant rates be helped? Many countries have low living and/or deceased donation rates. Understanding the underlying barriers (organization structure, population preferences, etc.) would be fruitful in making progress toward increasing transplant rates (see, e.g., Okubo et al. 2026).
11. What can be done to increase incentives for organ donation in ways that attract social support? What accounts for the widespread reluctance to increase organ donation by compensating donors? How can economists better explain the value of incentives in addressing scarcity and gather persuasive evidence to engage in a productive dialog with those who fear that this will increase rather than decrease black markets, or who feel there are fundamental religious or ethical objections to compensating organ donation? [For some thoughts on this, readers are referred to Roth (2026b)].
I've written about the determination of death prior to deceased-donor organ donation, but it turns out that there are other hard cases. Submersion in icy water is one, hence the rule "they aren't dead till they're warm and dead."
Medpage Today has the story:
Declaring Death Is Not So Simple
by Judy Melinek, MD
" Hypothermia -- especially in children rescued from drowning -- can deliver us patients in a state of suspended animation, all their metabolic systems so slowed by cold that advanced cardiovascular life support and emergency medicine training teaches that "they aren't dead till they're warm and dead." Get that patient warmed to normal human body temperature, then check again for signs of life."
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Earlier:
A column in the Washington Post conveys the story:
"In the decade since Canada legalized euthanasia, known there as medical assistance in dying, or MAID, its physician-assisted death regime has developed into one of the most permissive in the world. Between 2016 and 2024, 76,475 Canadians received lethal doses from doctors or nurse practitioners. The 16,499 cases in 2024 accounted for 1 out of 20 deaths in Canada. In some regions of Quebec, the rate is 13 out of 100.
"Now, however, Canada might finally be maxing out on MAID. On June 17, a special parliamentary committee recommended that the government “indefinitely exclude” patients whose only medical condition is a psychiatric one such as depression or schizophrenia. Pro-euthanasia activists had urged that MAID eligibility be expanded to include them, but “safe and equitable implementation” of MAID in such cases is simply not possible, the committee said.
...
"The committee also took the testimony of doctors from the Netherlands, one of two countries (Belgium is the other) where psychiatric euthanasia has long been allowed as part of a broader MAID regime — and where it has recently gone from rare exception to troublingly frequent occurrence. Nearly 850 people have received lethal injections for psychiatric suffering there since 2020, including teenagers as young as 16.
In fact, at roughly the same time as the Canadian commission issued its report, the Dutch themselves were tapping the brakes on psychiatric euthanasia. The Netherlands’ main professional organization for psychiatrists has issued new guidelines requiring stricter prior scrutiny for euthanasia requests."
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Here is the Canadian parliamentary report:
"Ultimately, the committee makes the following recommendation:
Recommendation 1
That the Government of Canada amend the Criminal Code to indefinitely exclude persons whose sole underlying medical condition is a mental illness from eligibility for medical assistance in dying. "
Transplantation of deceased-donor organs has made us rethink the notion of death itself. What does it mean that a person is dead, while organs are still sufficiently alive to be transplanted? In particular, if death is declared due to cessation of heartbeat, what does it mean if the heart can be transplanted and re-started in another patient's body? Does it mean the donor wasn't really dead?
These questions were very front of mind when heart transplants first began in the late 1960's. Those debates were resolved by the legal recognition of brain death, so that a patient could be recognized as dead while still having a heartbeat. And for years, most deceased donation occurred after brain death. But these issues are once again controversial, as transplants of all organs are growing not just after brain death, but increasingly from Donation after Circulatory Death (DCD).
Vox has the (long but very clearly written) story:
"In the last decade, DCD has gone from a rare practice to something that now accounts for nearly half of all organ donors who have died in the United States. In 2000, DCD donors supplied just 219 organs (kidneys, livers, lungs, hearts, and pancreas combined) to the transplantation system in the US. In 2025, DCD brought in close to 17,000 organs. (Most transplanted organs, about 85 percent, come from dead donors, though some organs, most often kidneys, can also come from living donors.)
"That growth has saved lives, but it has also pushed transplant medicine into an unusually sensitive moment: the time after a family has decided to let their loved one die but before death has actually occurred.
"In brain-death donation, a patient has already been declared dead before the possibility of donation is raised with the family. Because most brain-dead donors are on ventilators, with machines supplying oxygenated blood to their organs, transplant teams can take their time with the donation process.
"DCD doesn’t offer that same cushion. Because organs deteriorate so quickly after circulation ceases, the work of donation — the testing, matching, surgical teams flying in — has to be set in motion once the family has decided to withdraw life support but before the patient has died.
"This is where the tension in DCD begins. The process pushes transplantation into the narrow interval between that decision to let someone die and the moment death occurs. It creates a situation with almost no parallel in medicine: one set of hands caring for the dying, even as another prepares to recover and transplant their organs."
Medical aid in dying and hospice care are now available for pets too.
The New Yorker has the story:
When Should You Say Goodbye to a Pet?
Across the country, the booming industry of pet hospice is teaching people how to face the loss of their beloved companions.
By Sunita Puri
" In the nineteen-seventies, hospice care evolved as more people resisted the compulsion to extend life at all costs, preferring instead to focus on dying comfortably, often at home. Now caring for a sick pet involved the same questions: What is a good quality of life? How much suffering is too much? And when is the right time to let go?
...
"The concept of pet hospice emerged in the eighties and nineties. In 1994, Amir Shanan, a Chicago-based veterinarian, was asked by a couple to euthanize their beloved dog at home. He started to advertise his work, and more people began calling. Their desire to give their pets a graceful end was so strong that they were willing to invite a stranger into their homes to do it. Shanan was astounded.
"Eventually, pet owners began to tell Shanan that they needed his help well before it was time for euthanasia. “With euthanasia, the focus is on the time of death, and grief after the loss, but there is so much more that happens in the time between a bad diagnosis and death,” Shanan told me.
...
" In 2009, he founded the International Association for Animal Hospice and Palliative Care, which now has more than fifteen hundred veterinarian-members around the world. Shanan recruited a team that helped him develop guidelines, create a training program for veterinarians, and write an early textbook on the subject, which was published in 2017. The organization believes that dying is “a normal process,” and that its work allows pets and their families “to attain a degree of mental and spiritual preparation for death.”
"Although pet hospice is modelled on human hospice, there are fundamental differences between the two. Human hospice, which is covered by most insurance, involves treating the emotional, spiritual, and physical suffering caused by a terminal illness as it unfolds naturally. Enrollment requires a prognosis of less than six months to live, and euthanasia is never considered. (Some states have legalized medical aid-in-dying, in which patients self-administer a life-ending medication, but euthanasia, in which the medication is administered intravenously by a health-care provider, is illegal in the United States.) "
Pain experienced while dying may be partly spiritual.
National Geographic has the story:
These drugs could be a game changer for end-of-life care
Certain psychoactive substances can improve the mental health of terminally ill cancer patients—but few patients can currently access them. By Meryl Davids Landau
"Several years ago in Vancouver Island, Canada, a 32-year-old mother with advanced metastatic cancer was so wracked with pain and a fear of dying she constantly wept in bed. Through a targeted Canadian government program, the woman accessed psilocybin, the main psychedelic ingredient in magic mushrooms. The day after taking a dose of the drug she was pain-free, able to joke with family members and reconnect with old friends before she died the following week.
...
"The drugs can help with “the existential component of pain that is tied in with spiritual and psychological experiences,” something conventional medicine has few tools to address, says Masuda, a physician with SATA Centre for Conscious Living, who has since facilitated dozens of psychedelic sessions for similar patients.
"Some 400 terminal patients in Canada have legally accessed psilocybin in the past five years via its special programs, and several countries already allow for similar uses. Due to federal drug laws, terminally ill people in the U.S. cannot currently take psilocybin outside of a handful of clinical trials.
"But this may finally change, as government agencies are evaluating whether to allow its use for end-of-life care—thanks to pressure from physicians and years of research. Many palliative care doctors in the U.S. say the change can’t come soon enough."
Here's an article pointing out that "slow codes" often constitute resuscitation theater, i.e. they are a way to follow bureaucratic directives requiring attempted resuscitation after cardiac arrest in hospitals, when the physicians don't think that would be in the patient's best interest, i.e. when resuscitation would only prolong dying and suffering. I think this should be part of the discussion of the kinds of "covert" medical aid in dying that takes place even in jurisdictions that don't legally authorize physicians to help shorten the dying process.
McLennan S, Bak M, Knochel K. Slow Codes are symptomatic of ethically and legally inappropriate CPR policies. Bioethics. 2025 May;39(4):327-336. doi: 10.1111/bioe.13396.
Abstract: Although cardiopulmonary resuscitation (CPR) was initially used very selectively at the discretion of clinicians, the use of CPR rapidly expanded to the point that it was required to be performed on all patients having in‐hospital cardiac arrests, regardless of the underlying condition. This created problems with CPR being clearly inadvisable for many patients. Do Not Resuscitate (DNR) orders emerged as a means of providing a transparent process for making decisions in advance regarding resuscitation, initially by patients and later also by clinicians. Under hospital policies in many countries, however, CPR remains the default position for all patients having cardiac arrest in the hospital if there is no DNR order in place, regardless of whether CPR is medically indicated or in the patient's best interests. “Slow Codes” are the delayed or token efforts to provide CPR when clinicians feel CPR is futile or inappropriate. After giving a historical overview of the development and the changing use of CPR, we argue that more attention needs to be given to the cause of slow codes, namely, policies requiring CPR to be performed as the default action while simultaneously lacking implementing interventions such as advance care planning as a routine policy. This is ethically and legally inappropriate, and hospital policies should be modified to allow clinicians to consider whether CPR is appropriate at the time of arrest. Such a change requires a stronger emphasis on early recognition of patients for whom CPR is not in their best interests and to improve hospital emergency planning.
" Proponents of the ‘slow code’ find that intentionally delaying CPR might, in some cases, be a more compassionate alternative to aggressive and potentially futile interventions.
...
"Cardiopulmonary resuscitation is indicated for the patient who, at the time of cardiopulmonary arrest, is not in the terminal stage of an incurable disease. Resuscitative measures on terminal patients will, at best, return them to the dying state. The physician should concentrate on resuscitating patients who were in good health preceding the arrest, and who are likely to resume a normal existence"
During our visit to Prague in May we visited the Old Jewish Cemetery, crowded with the dead from the historic Jewish Ghetto.
We also visited the Pinkas synagogue, whose walls are covered with the names of those murdered in the Shoah, with their birth dates and death dates. The birth dates reveal a vibrant community, from small children to senior citizens. The dates of death are all from 1942 to 1944.
Yesterday the NY State Senate took the next step in making medical aid in dying legal in NY. Now the bill goes to the governor...
The NYT has the story:
"Eleven states and the District of Columbia have passed laws permitting so-called medical aid in dying. The practice is also available in several European countries and in Canada, which recently broadened its criteria to extend the option to people with incurable chronic illnesses and disabilities.
The bill in New York is written more narrowly and would apply only to people who have an incurable and irreversible illness, with six months or less to live. Proponents say that distinction is key.
“It isn’t about ending a person’s life, but shortening their death,” said State Senator Brad Hoylman-Sigal, a Manhattan Democrat and one of the sponsors of the bill. It passed on Monday night by a vote of 35 to 27, mostly along partisan lines.
...
"The bill was first introduced a decade ago by Assemblywoman Amy Paulin, a Westchester Democrat who leads the body’s Health Committee, at a time when few states were considering such measures.
...
"The bill has earned the support of a range of powerful interest and advocacy groups, including the New York State Bar Association, the New York State Psychiatric Association, the Medical Society of the State of New York and the New York Civil Liberties Union.
"While it was also backed by some religious groups, including Congregation B’nai Yisrael, a Westchester synagogue, and Catholics Vote Common Good, it was staunchly opposed by the New York State Catholic Conference."
Deceased donation of organs mostly occurs after potential donors suffer brain death, which, roughly speaking, means the loss of all organized brain activity, including the automatic activities that control breathing and heartbeat. If the deceased died while on a ventilator, their organs continue to get oxygen, and may be able to save other lives through organ donation.
But sometimes the patient appears to be dead, but there's still enough brain activity to potentially support breathing and heartbeat. If the decision is made to remove the patient from the ventilator, breathing and heartbeat may cease very quickly, and the patient dies (including brain death which follows the loss of blood circulation). In some cases the patient can be reconnected to the ventilator and become a potential organ donor. This is called Donation after Circulatory Death (DCD). But sometimes the patient doesn't die right after being removed from the ventilator, and might remain alive, for some time, and even posssibly recover.
Today's NYT reports cases in Kentucky in which the Organ Procurement Organization (OPO) apparently tried to press physicians to declare death prematurely,.
Doctors Were Preparing to Remove Their Organs. Then They Woke Up. A federal investigation found a Kentucky nonprofit pushed hospital workers toward surgery despite signs of revival in patients. By Brian M. Rosenthal June 6, 2025,
"[A federal] investigation examined about 350 cases in Kentucky over the past four years in which plans to remove organs were ultimately canceled. It found that in 73 instances, officials should have considered stopping sooner because the patients had high or improving levels of consciousness.
...
"Most of the patients eventually died, hours or days later. But some recovered enough to leave the hospital, according to an investigation by the federal Health Resources and Services Administration, whose findings were shared with The New York Times.
"The investigation centered on an increasingly common practice called “donation after circulatory death.” Unlike most organ donors, who are brain-dead, patients in these cases have some brain function but are on life support and not expected to recover. Often, they are in a coma.
"If family members agree to donation, employees of a nonprofit called an organ procurement organization begin testing the patient’s organs and lining up transplant surgeons and recipients. Every state has at least one procurement organization, and they often station staff in hospitals to help manage donations.
"Typically, the patient is taken to an operating room where hospital workers withdraw life support and wait. The organs are considered viable for donation only if the patient dies within an hour or two. If that happens, the procurement organization’s team waits five more minutes and then begins removing organs. Strict rules are supposed to ensure that no retrieval begins before death or causes it."
Repugnance to medical aid in dying is sharpest when death isn't otherwise imminent. Canada allows patients with irremediable pain to qualify for MAID (qualifying in this way is called Track 2). Here's a thoughtful article in the NYT about some of the issues.
"While a Track 1 patient could technically apply for and receive MAID within a day, the process for Track 2 was slower; there had to be at least 90 days from the start of the assessment to the patient’s death. Each patient was assessed by two independent clinicians, and if neither of the assessing clinicians had expertise in the patient’s medical condition, they had to consult with a clinician who did. The patient requesting assisted death also had to be informed of “the reasonable and available means” to relieve the suffering — and to give “serious consideration” to those means.
"By law, a MAID patient had to be suffering in some way. The suffering could come either directly from the medical condition or indirectly from the condition’s follow-on effects. It could be either physical or psychological, as long as it was “enduring.” The law did not define exactly what it meant to suffer, or exactly how a medical professional was meant to evaluate the suffering. It was up to individual clinicians to figure out, in conversation with their patients. In a “Model Practice Standard” published by Health Canada, the country’s federal health regulator, MAID assessors were instructed to “respect the subjectivity of suffering.”
"For other clinicians, the concern about Track 2 was more philosophical. Dr. Madeline Li, a cancer psychiatrist who developed the MAID program for Toronto’s University Health Network and who has personally overseen hundreds of Track 1 patients, told me that she was hesitant to involve herself in Track 2 because it didn’t fit with her larger understanding of medicine and its purpose. “If you want to allow people to end their lives when they want to, then put suicide kits in hardware stores, right?” Li told me. It was not “assistance in dying” if the patient was not actually dying.
...
"The most organized critique of Canada’s law came from disability rights advocates. In September 2024, two people with disabilities and several nonprofit organizations announced a legal challenge to Bill C-7. Their case argues that, by definition, all Track 2 MAID patients are disabled — people with medical conditions that limit daily functioning — and thus, that the law is discriminatory. If a nondisabled person is suffering and wants to die, her desire will be understood as pathological, and she will be offered suicide prevention. If a disabled person is suffering and wants to die, her doctor will hand her the proverbial gun.
...
“I’m certainly not going to argue that the system is in good shape,” Wonnacott said. He tended to receive criticism of MAID with equanimity. Of course the system was broken. Of course people ended up on the wrong side of it. And of course the government should work urgently to improve it. But then again, it was the system. There was no other system on offer. “And to force people to continue suffering as we wait an indefinite amount of time to fix it is unfair.” Sure, in any given MAID assessment, Wonnacott could allow himself to get caught up in the past conditional of what should have been done, what could have been. But there was the suffering patient sitting in front of him, here and now, wanting an answer.
"Wonnacott also disagreed with the solution that the critics offered: to shut it all down. Fundamentally, he didn’t think the best way to protect poor and marginalized patients was to force them to stay alive, because in some counterfactual version of events, in which the world was a better and more just place, they might have chosen differently. That wasn’t how anything in medicine worked; a doctor always treated the patient as she was. How could it be otherwise? If only those who were rich or well connected were recognized to have autonomy and allowed to choose?
...
"The critics seemed to imply that a few hundred Track 2 deaths each year were, together, taking the pressure off government officials to improve the system. And that, inversely, if enough people who wanted to die were instead forced to live, their suffering would create the moral imperative for a wide-reaching social-welfare revolution. Wonnacott and his colleagues thought this seemed unlikely. As it was, Canada had more publicly funded health care than many other countries."
JAMA has a viewpoint by several palliative care physicians reflecting on why they are sometimes "fired" by their patients, i.e. why patients with (potentially) terminal illnesses may stop talking to them. The reasons range from not necessarily agreeing that their illness is terminal (their other physicians may be conveying more optimistic messages), to finding that the patient's thoughts about ending their lives are documented in their medical record.
Why Good Palliative Care Clinicians Get Fired by Abby R. Rosenberg, MD, MS, MA1,2; Elliot Rabinowitz, MD1,2; Robert M. Arnold, MD JAMA. Published online April 14, 2025. doi:10.1001/jama.2025.4353
"Even the most seasoned palliative care clinician gets fired. In the past year, one of us was fired after asking whether a patient endorsing suicidal ideation had access to a gun; the patient requested not to see the palliative care team because we asked intrusive questions and documented the encounter. One of us was fired after supporting a family’s decision to discontinue life-sustaining therapies for their loved one with multisystem organ failure; the primary intensivist suggested palliative care overstepped in discussing options for which the family (and clinical teams) was not ready. And one of us was fired after sharing the impression that a patient with cancer was dying; the family suggested they preferred the oncologist’s version of a more hopeful future.
Although many health care clinicians have been fired by a patient or family, palliative care clinicians may be at increased risk for dismissal.1,2 We invite difficult conversations, confront people with news they prefer to avoid, and encourage otherwise taboo topics such as human frailty and death. Our focus on what may go wrong differs from other clinicians’ optimism and may be unwelcome to patients and health care teams alike. We acknowledge emotional vulnerability, explore uncertainty, uncover fears, and describe a future in which patients make difficult choices about how they live and how they die."
I've recently posted about Medical Aid in Dying (MAID), which is quite controversial. An alternative model of end of life care is a hospice, which offers palliative care to patients with terminal diagnoses. But it turns out that Medicare only covers very limited hospice care, so that most patients who qualify medically have to be cared for by relatives at home.
Slate has the story, by a hospice doctor.
“But They Are Dying.” Hospice physicians like me can’t usually offer patients the care they need.
By Charlotte Grinberg
"A patient qualifies for hospice when they have a terminal illness with a prognosis of six months or less based on the natural progression of their disease. Hospice does not usually provide 24/7 private care or the physical place of residence for the dying; typically, people with a terminal diagnosis who opt against further medical interventions die at home, and with significant caregiving duties provided by someone in their family or hired privately. The only place where people receive 24/7 care by hospice-trained professionals are inpatient hospice facilities.
...
"I also work with patients who are under routine care at home or in an assisted living or a nursing facility. To me it’s clear that continuous attention provides a better experience, for patients and their loved ones. But most hospice patients will never be able to access inpatient hospice care. In fact, most hospices across America don’t even have inpatient hospice facilities because they are expensive to build, staff, and maintain, and ultimately depend heavily on philanthropy to both build and cover ongoing operations. Instead, dying patients only see a hospice nurse approximately once per week and are able to call a hospice triage nurse 24/7. They rarely—or never—see a hospice physician.
"The average cost of routine hospice at an inpatient hospice facility is $350 a day. Medicare will only cover inpatient hospice care under very specific circumstances. Families can request “respite care” for five days at a time to get temporary relief from serving as caregivers. Patients can also meet a General Inpatient Hospice level of care. The GIP level of care is intended to cover the time it takes to stabilize a crisis of acute symptoms that cannot be managed in any care setting other than a Medicare-certified inpatient hospice facility (or a contracted hospital or nursing facility). Once a patient’s symptoms are stabilized, the payment for room and board ceases, and the patient is considered to be in a routine level of care.
GIP is only approved when there is a crisis of physical symptoms such as pain, vomiting, seizures, or difficulty breathing. In 2021, only about 1 percent of all hospice days in the United States qualified for the GIP level. Medicare specifies that GIP is not appropriate for situations where a patient’s caregiver support has simply broken down. Complete caregiver breakdown would also not qualify someone for respite care, because respite care is specifically designed to be temporary relief. The primary burden still falls on the patient’s support system, if they have one, to simply figure out how to manage."
Courts are increasingly called on to decide who should get custody of frozen embryos. Their decisions will touch on both abortion and IVF.
This NYT oped discusses some of the issues.
Are Embryos Property? Human Life? Neither? By Anna Louie Sussman
"For over a century, courts generally did not grant personhood or independent rights to embryos or fetuses in utero. An 1884 decision by Oliver Wendell Holmes, at the time a Massachusetts Supreme Court justice, held that when a pregnant woman slipped and fell on a road, resulting in the loss of the fetus, no claim could be pursued on behalf of the fetus against the town; he voiced skepticism about “whether an infant dying before it was able to live separated from its mother could be said to have become a person recognized by the law.”
"Once embryos began appearing ex utero, however, courts and legislatures were forced to reckon with their legal status in novel scenarios — notably in divorce cases in which the parties disagreed on how to deal with frozen embryos created during the marriage. The answers courts have come up with for how to view embryos have been all over the map, ranging from seeing them as property to declaring them, in the Alabama decision, “unborn children.”
...
"Embryo custody cases, as they’re sometimes termed, were typically resolved along similar lines — that parenthood should not be forced on a person who does not want it, with a few exceptions, said Ellen Trachman, a Denver-based lawyer specializing in assisted-reproduction-related cases. That principle was challenged in 2018, when the Arizona State Legislature passed a law requiring judges to award disputed embryos “to the spouse who intends to allow the in vitro human embryos to develop to birth,” regardless of any contracts signed by both parties
...
"The murkiness of embryos’ status has sent courts on strange detours in their legal reasoning. In a 2023 Virginia case a judge was tasked with deciding whether two frozen embryos should be awarded to Honeyhline Heidemann, who wanted to implant them, or kept frozen, per the wishes of her ex-husband, Jason Heidemann. Ms. Heidemann asked that the embryos be considered property, so they could be assigned to her like any other salable item. Mr. Heidemann said each was unique and nonfungible and thus could not be treated as personal property.
"The case, as Leah Libresco Sargeant wrote, turned embryos into “Schrödinger’s persons,” resulting in “one parent bizarrely needing the embryos to be considered persons in order to prevent them from being born and the other parent needing to argue the children were property in order to let them be born.”
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Earlier:
Not unexpectedly:
US Abortion Bans and Infant Mortality, by Alison Gemmill, PhD1; Alexander M. Franks, PhD2; Selena Anjur-Dietrich, PhD1; et alAmy Ozinsky, BS1; David Arbou r, PhD3; Elizabeth A. Stuart, PhD4; Eli Ben-Michael, PhD5; Avi Feller, PhD6; Suzanne O. Bell, PhD1 JAMA. Published online February 13, 2025. doi:10.1001/jama.2024.28517
"Findings This analysis of US national vital statistics data from 2012 through 2023 found higher than expected infant mortality in states after adoption of abortion bans (observed vs expected, 6.26 vs 5.93 per 1000 live births; relative increase, 5.60%). Estimated increases were relatively larger among infants who were Black, had congenital anomalies, or were born in southern states.
Meaning Abortion bans were associated with increases in infant mortality. These increases were larger for populations that already experienced higher than average rates of infant mortality."
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There's also an accompanying editorial:
Abortion May Be Controversial—Supporting Children and Families Need Not Be by Alyssa Bilinski JAMA. Published online February 13, 2025. doi:10.1001/jama.2025.0854
"In this issue of JAMA, 2 articles characterize the impact of recent state abortion restrictions.1,2 Applying observational causal inference methods, the authors estimate a 1.7% increase in birth rates from abortion restrictions in affected states (corresponding to about 22 000 excess births) and a 6% increase in infant mortality (about 500 excess deaths) from 2021 to 2023.1,2 Excess births occurred disproportionately among racially and ethnically minoritized, low-income, and unmarried individuals.1 Among births linked to abortion bans, infant mortality rates were about 4 times higher than rates in the general population.2 The authors note that this likely resulted both as a consequence of abortion bans requiring pregnant individuals to carry fetuses with lethal abnormalities to term and from excess births occurring disproportionately among individuals at high risk for complications. "
The Guardian has the story:
MPs vote for bill to legalise assisted dying in England and Wales
Terminally ill adults with less than six months to live will be given right to die under proposed legislation, by Jessica Elgot, Eleni Courea and Rowena Mason
"MPs have taken a historic step toward legalising assisted dying in England and Wales after backing a bill that would give some terminally ill people the right to end their lives.
"The Commons backed the bill by 330 votes in favour to 275 against, a majority of 55. Keir Starmer and Rachel Reeves both voted in favour, Labour MPs told the Guardian.
"The private member’s bill, brought by the Labour MP Kim Leadbeater, gives terminally ill adults with less than six months to live the right to die once the request has been signed off by two doctors and a high court judge.
"The change is unlikely to occur for three years as the bill must pass several more hurdles in parliament and will not be brought before MPs again until April. The government is likely to assign a minister to help work on the bill, without formally giving its support.
...
" Peter Prinsley, a Labour MP and surgeon, said he had changed his mind over his years in medicine after witnessing the “terrifying loss of dignity and control in the last days of life”.
“When I was a young doctor I thought it unconscionable. But now I’m an old doctor and I feel sure it’s the right change. I have seen uncontrollable pain, choking, and I’m sorry to say the frightful sight of a man bleeding to death whilst conscious as a cancer has eaten away at a carotid artery.”
"Opponents of the bill said it would fundamentally change the relationship between the state and its citizens, and between doctors and patients. They argued the bill was rushed and the safeguards for vulnerable people were insufficient."
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Earlier:
Following a full life, a peaceful end.
Pat Koch Thaler, Sister to a Famed Mayor, Chose to Die on a Saturday
Ms. Thaler, a former dean at N.Y.U., used her last interview to reminisce about her brother, Ed, and to publicize the alternatives to prolonging pain and suffering. By Sam Roberts
"After 22 years of fending off cancer, Ms. Thaler had run out of miracles. Twice the disease had gone into remission, only to return. One kidney had been removed. She had been bombarded by radiation, chemotherapy and ablation. Finally, the tumors had been declared inoperable.
“My mother died in agony,” Ms. Thaler recalled. Her mother was 62, misdiagnosed and undergoing an operation to remove her gall bladder when surgeons found her body was riddled with cancer.
"Of her own experience, Ms. Thaler said she had been offered a drug that “would slow things down, but would have some serious side effects.”
“And I decided, I’m 92 and a half years old, I have lived a very, very rich life, a very happy life, and I didn’t want to torture myself anymore,” she said. “I did what I could, and knowing that the law is on my side, I decided to take advantage.”
"A New Jersey law that took effect in 2019 allows a mentally alert adult — whose prognosis of having less than six months to live has been certified by two doctors — to self-administer a lethal prescription. The powdery medication is mixed with three ounces of juice, must be consumed within two minutes, immediately induces sleep and, within hours, causes death.
...
"Ms. Thaler spent her last few days paying bills, disposing of her furniture, distributing her artwork to her children and grandchildren, and confirming the funeral arrangements
...
"She chose Saturday, she said, because her children worked, and she wanted a time that would be most convenient. Wearing a white long-sleeved shirt and loose black pants in her apartment, surrounded by her family, she took the powdered medication mixed in apple juice under a doctor’s supervision at 11 a.m.
"At 4:58 p.m., she was pronounced dead."
The upcoming vote on legalizing medical aid in dying in England and Wales has attracted controversy along lines that will be familiar to readers of this blog, concerning both fundamental values and slippery slopes. But a comment by British Cardinal Vincent Nichols introduces an argument that I hadn't heard stated so clearly before, about the religious significance of suffering. But first, here's the background, from the BMJ.
MPs set for historic vote on bill to legalise assisted dying in England and Wales, by Clare Dyer, 07 October 2024 BMJ 2024;387:q2191
"A bill to legalise assisted dying for terminally ill people in England and Wales is expected to be introduced in the House of Commons on 16 October.
...
"Hundreds of terminally ill people from the UK have travelled to the Swiss clinic Dignitas to end their lives. But friends and relatives who help them are at risk of prosecution for assisting a suicide, which carries a maximum prison sentence of 14 years.
...
"Surveys of public opinion show that about two thirds of the public support allowing assisted dying. The BMA dropped its opposition in 2021 to take a neutral position on a change in the law."
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And here is a story about objections from a religious point of view, from the senior Catholic official in England.
UK’s top Catholic bishop urges faithful to lobby MPs to oppose assisted dying by Hayden Vernon Sat 12 Oct 2024
"The archbishop of Westminster continued: “The suffering of a human being is not meaningless. It does not destroy that dignity. It is an intrinsic part of our human journey, a journey embraced by the eternal word of God, Christ Jesus himself. He brings our humanity to its full glory precisely through the gateway of suffering and death.”
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Earlier:
Covid has dropped out of the top 10.
Leading Causes of Death in the US, 2019-2023. by Farida B. Ahmad, MPH1; Jodi A. Cisewski, MPH1; Robert N. Anderson, PhD1, JAMA. August 8, 2024. doi:10.1001/jama.2024.15563
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