Showing posts with label death. Show all posts
Showing posts with label death. Show all posts

Thursday, April 24, 2025

Hospice care and its limitations

 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."

Monday, April 14, 2025

“Schrödinger’s persons". The indeterminate legal status of embryos.

 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:

Tuesday, February 20, 2024 Frozen embryos are children: Alabama Supreme Court ruling

 

 

 

Wednesday, February 26, 2025

Abortion bans have increased both births and infant mortality (JAMA)

 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. "

Saturday, November 30, 2024

Britain moves towards legalizing medical aid in dying

 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:

October 15, 2024 Medical aid in dying comes up for a vote in England

Sunday, November 24, 2024

A medically aided death in New Jersey: Pat Koch Thaler

 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."

Tuesday, October 15, 2024

Medical aid in dying comes up for a vote in England

 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:

Friday, March 1, 2024

Saturday, August 10, 2024

Leading Causes of Death in the US, 2019-2023.

 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





Sunday, April 28, 2024

Main causes of death around the world, 1990-2021

 Here's a recent article from the Lancet that traces leading causes of death around the world, in more than a thousand countries and subnational locations.  Kidney disease went from #18 in 1990 to #9 in 2019, to #11 in 2021 (when Covid entered the list at #2)  So it looks like the rest of the world is catching up to the developed world in chronic disease as compared to infectious disease.

Naghavi, Mohsen, Kanyin Liane Ong, Amirali Aali, Hazim S. Ababneh, Yohannes Habtegiorgis Abate, Cristiana Abbafati, Rouzbeh Abbasgholizadeh et al. "Global burden of 288 causes of death and life expectancy decomposition in 204 countries and territories and 811 subnational locations, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021." The Lancet (2024).


Most diseases are causing less premature death, but Diabetes and Chronic Kidney Disease (CKD) are among the few that are causing more premature death, along with Malaria, AIDS, Covid and Other Pandemic Related Mortality (OPRM). (War is not included in the study.)




Friday, March 8, 2024

Dr. Guy Alexandre (1934-2024), gave birth to brain death in deceased organ transplantation

 The father of brain death has died.

Here's the NYT obit.

Guy Alexandre, Transplant Surgeon Who Redefined Death, Dies at 89. His willingness to remove kidneys from brain-dead patients increased the organs’ viability while challenging the line between living and dead.  By Clay Risen

"Guy Alexandre, a Belgian transplant surgeon who in the 1960s risked professional censure by removing kidneys from brain-dead patients whose hearts were still beating — a procedure that greatly improved organ viability while challenging the medical definition of death itself — died on Feb. 14 at his home in Brussels. He was 89.

...

"Dr. Alexandre was just 29 and fresh off a yearlong fellowship at Harvard Medical School when, in June 1963, a young patient was wheeled into the hospital where he worked in Louvain, Belgium. She had sustained a traumatic head injury in a traffic accident, and despite extensive neurosurgery, doctors pronounced her brain dead, though her heart continued to beat.

"He knew that in another part of the hospital, a patient was suffering from renal failure. He had assisted on kidney transplants at Harvard, and he understood that the organs began to lose viability soon after the heart stops beating.

"Dr. Alexandre pulled the chief surgeon, Jean Morelle, aside and made his case. Brain death, he said, is death. Machines can keep a heart beating for a long time with no hope of reviving a patient. His argument went against centuries of assumptions about the line between life and death, but Dr. Morelle was persuaded.

...

"Over the next two years, Dr. Alexandre and Dr. Morelle quietly performed several more kidney transplants using the same procedure. Finally, at a medical conference in London in 1965, Dr. Alexandre announced what he had been doing.

...

"In 1968, the Harvard Ad Hoc Committee, a group of medical experts, largely adopted Dr. Alexandre’s criteria when it declared that an irreversible coma should be understood as the equivalent of death, whether the heart continues to beat or not.

"Today, Dr. Alexandre’s perspective is widely shared in the medical community, and removing organs from brain-dead patients has become an accepted practice.

“The greatness of Alexandre’s insight was that he was able to see the insignificance of the beating heart,” Robert Berman, an organ-donation activist and journalist, wrote in Tablet magazine in 2019.

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And here's the story from Tablet magazine, interesting in a number of respects:

The Man Who Remade Death. Guy Alexandre was the first surgeon to remove organs from a patient with a beating heart. His colleagues thought him a murderer; Alexandre disagreed and revolutionized our understanding of death.  BY ROBBY BERMAN, Feb 4, 2019

"I met Alexandre a few months ago in his home in an upscale suburb of Brussels. The octogenarian is charming, affable and avuncular but he does not mince words: The physicians who accused him of murder “were hypocrites. They viewed their brain dead patients as alive yet they had no qualms about turning off the ventilator to get the heart to stop beating before they removed kidneys. In addition to ‘killing’ the patient, they were giving the recipients damaged kidneys that suffered ischemia … oxygen deprivation. The kidneys did not work well; they did not last long.”

"Given that brain death was not well known by the public in 1963, I asked Alexandre how he succeeded in getting consent from families to donate the organs. “It was simple. I didn’t ask. I told the families the situation was grim and I removed the organs in the middle of the night. When the family returned the next morning I told them their loved one had died during the night.”

"In 1961, Alexandre was in his third year of surgical training. He left Brussels for Boston to attend Harvard Medical School where he studied under professor Joseph Murray, the surgeon famous for performing the first successful kidney transplant between twins in 1954. After Alexandre successfully executed a number of kidney transplants between dogs in the laboratory, he was invited by Murray to join him in the operating room to operate on humans. It was there that Alexandre noticed a curious phenomenon.

"Murray turned off the ventilator in order to cause the heart to stop beating and only then did he extract the organs. Alexandre felt there was no need to damage the kidneys by depriving them of oxygen. He believed when looking at a human body with a dead brain that he was looking at a corpse that was suffering from a bizarre medical condition: a beating heart. In other words, the organism was dead but the organs remained alive."
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Earlier:

Friday, January 18, 2019


Tuesday, February 20, 2024

Frozen embryos are children: Alabama Supreme Court ruling

 The Washington Post has the story, which emphasizes the implications this ruling could have on in-vitro fertilization (IVF).  That would also impact surrogacy, and possibly deceased donor transplantation (depending on how it impacts the definitions of who is alive and who isn't...) 

Frozen embryos are children, Ala. high court says in unprecedented ruling. By Dan Rosenzweig-Ziff, February 19, 2024 

"The Alabama Supreme Court ruled Friday that frozen embryos are people and someone can be held liable for destroying them, a decision that reproductive rights advocates say could imperil in vitro fertilization (IVF) and affect the hundreds of thousands of patients who depend on treatments like it each year.

"The first-of-its-kind ruling comes as at least 11 states have broadly defined personhood as beginning at fertilization in their state laws, according to reproductive rights group Pregnancy Justice, and states nationwide mull additional abortion and reproductive restrictions, elevating the issue ahead of the 2024 elections. Federally, the U.S. Supreme Court will decide this term whether to limit access to an abortion drug, the first time the high court will rule on the subject since it overturned Roe v. Wade in 2022.

"The Alabama case focused on whether a patient who mistakenly dropped and destroyed other couples’ frozen embryos could be held liable in a wrongful-death lawsuit. The court ruled the patient could, writing that it had long held that “unborn children are ‘children’” and that that was also true for frozen embryos, affording the fertilized eggs the same protection as babies under the Wrongful Death of a Minor Act.

...

"The push for defining personhood has even affected tax law: Georgia now recognizes an “unborn child” as a dependent after six weeks of pregnancy.

Tuesday, January 9, 2024

Brain death for organ donation, and its relation to controversy about abortion

 Here's a summary of the current discussion of brain death (and its possible connection to the debate on whether a fetus is a living person), in JAMA. Maybe it will reach some resolution this year...

Truog, Robert D., and David C.  Magnus. The Unsuccessful Effort to Revise the Uniform Determination of Death Act. JAMA. 2023;330(24):2335–2336. doi:10.1001/jama.2023.24475

"In 1968, a Harvard committee proposed a new approach for determining death, one based on the irreversible loss of neurological functions.1 This concept was instantiated into law in 1980 when the Uniform Law Commission endorsed The Uniform Determination of Death Act.2 The act, which a large majority of states have adopted in whole or with some variations, says, in part, that an individual is dead if the individual has sustained (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem. A determination of death must be made in accordance with accepted medical standards.

"In 2020, the commission was asked to consider updating the act, based in part on concerns that the act does not fully align with current medical practice.3 A draft of its revision was presented and discussed at the commission’s annual meeting on July 26, 2023.4 Herein, we summarize the major issues that led to the decision to draft a revision, the alternatives that were considered, why there was failure to reach consensus, and what this means for the future.

"The Uniform Determination of Death Act defines neurological death, commonly known as brain death, as the complete absence of all functions of the entire brain. The current diagnostic criteria, however, test for only a subset of brain functions, and most notably do not include testing for neurosecretory hypothalamic functions, which are retained by many patients who have been diagnosed as brain dead.5 In addition, the law requires the “irreversible” cessation of biological functions, whereas in practice the standard has been “permanence,” with the distinction being that irreversible implies that the function cannot be restored, whereas permanence means that the function will not be restored because no attempt will be made to do so.

...

"n order for medical practice to be in compliance with the law, the commissioners considered either changing the guidelines to conform with the law, or changing the law to conform with the guidelines. Under the first approach, the guidelines would require physicians to diagnose the irreversible cessation of all brain functions, not just selected functions. This would be challenging, given the difficulty of detecting and measuring all of the brain’s many functions. Alternatively, the law could be revised to be coherent with current practice guidelines. At the annual meeting of the Uniform Law Commission, the committee considered the following draft alternative to the existing Uniform Determination of Death Act4: “An individual is dead if the individual has sustained: (1) permanent cessation of circulatory and respiratory functions; or (2) permanent (A) coma, (B) cessation of spontaneous respiratory functions, and (C) loss of brainstem reflexes.”

"This proposal would harmonize the law with the practice guidelines. Instead of requiring the absence of all brain functions, this revision would have required only the absence of specific brain functions, namely the capacity for consciousness and spontaneous respiration.

"The proposed revision also would have replaced the requirement for irreversible cessation with permanent cessation, thereby anticipating the trajectory of new developments in resuscitation research, including work demonstrating the potential for restoration of neuronal function in brains, even many hours after the loss of brain perfusion.6 Using the permanence standard, death can be determined in these patients on the grounds that function will not be restored rather than the requirement that it cannot be restored.

"Finally, the proposed revision also included a section that would have required hospitals to respect the refusal of patients or their surrogates to having death determined by neurological criteria. This position was supported by various constituencies, including the Catholic Medical Association, as well as several of the Uniform Law Commission commissioners, who saw it as a way to respect the diversity of opinions surrounding the determination of death while still supporting the concept of brain death. At the same time, this approach was strongly condemned by most mainstream physician and transplant organizations, given the burden that it would place on hospitals and intensive care units and its potential negative impact on organ procurement.

...

"in an email on September 22, 2023, the committee leadership announced that they had decided to pause the process, saying that “although we will continue to hope mid-level principles will become apparent, no further drafting committee meetings will be scheduled at this time.”

"Perhaps this outcome could have been predicted from the beginning, given the polarization that has evolved in the US around issues at the beginning and end of life. Commissioner James Bopp emphasized these connections in asserting that the controversies around brain death and abortion are an “identical debate, just in a different context.”7

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Earlier:

Wednesday, October 18, 2023

Wednesday, December 27, 2023

Medical aid in dying considered in Britain, and evolving in Canada

The Guardian has the story about England and Wales, and the NYT has a story on Canada.

Here's the Guardian:

Senior Conservative and Labour figures said they would back changes to legislation on the issue in England and Wales.  by Michael Savage

"Two former health secretaries on Saturday night became the latest senior figures to join the growing demands for a new attempt to legalise assisted dying, as a prominent Tory said he is willing to champion the legislation in parliament.

"With both former Conservative minister Stephen Dorrell and Labour’s Alan Milburn stating they back changing the law in England and Wales, the Observer understands that a Labour government would make time and expert advice available for an assisted dying bill should MPs back it in a free House of Commons vote.

"The news comes as campaigners hope to hold a new vote on the issue early in the next parliament, almost 10 years after the last attempt to alter the law. Kit Malthouse, a former cabinet minister, said he was “absolutely” prepared to front a new private member’s bill on the matter.
...
"Doing nothing is not a passive choice. Leaving the law as it is will consign many thousands of people who may want a different end to a horrible death.”
...
"Milburn, who served as health secretary under Tony Blair, said: “When people today expect to have control over so many aspects of their lives, it feels paradoxical that we are denied the same about how we want to die. It’s perhaps the most important decision any of us can make. To deny that choice feels increasingly anachronistic. The time has come for a free vote in parliament on the issue.”
...
"However, other senior figures such as Michael Gove have expressed doubts about any change.

"Critics of an assisted dying law have also warned about the difficulties in defining who is eligible, the danger of people being pressured into a decision and subsequent attempts to widen the law.

"Alistair Thompson, a spokesperson for Care Not Killing, a group that opposes assisted dying, pointed to polling that suggested public support for assisted dying may have actually fallen since the mid-1990s.

"He also raised questions about the effects of the drugs used for the process in Oregon and said the law would be widened. “As we saw in the Netherlands and Belgium, limits on who qualifies for an assisted death have been swept away,” he said.

“At a time when we have seen how fragile our healthcare system is, how underfunding puts pressure on services, when up to one in four Britons who would benefit from palliative care aren’t receiving it, and when our nation’s hospices are facing a massive shortfall in their income, I would suggest this should be the focus of attention, rather than discussing again this dangerous and ideological policy.”
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And here's the NYT on the controversy in Canada:

Death by Doctor May Soon Be Available for the Mentally Ill in Canada. The country is divided over a law that would allow patients suffering from mental health illnesses to apply for assisted death.  By Vjosa Isai  Dec. 27, 2023

"Canada already has one of the most liberal assisted death laws in the world, offering the practice to terminally and chronically ill Canadians.

"But under a law scheduled to take effect in March assisted dying would also become accessible to people whose only medical condition is mental illness, making Canada one of about half a dozen countries to permit the procedure for that category of people.
...
"There is still uncertainty and debate over whether assisted death will become available to the mentally ill early next year as scheduled. Amid concerns over how to implement it, Parliament has delayed putting it into place for the past three years and could delay it again."

Wednesday, October 18, 2023

Peter Singer on brain death

 Here's Peter Singer's op-ed in the Washington Post on the debate over brain death, presently used to decide when deceased donor organs can be used for transplantation:

What is the line between life and death? Here’s my answer.  By Peter Singer  October 17, 2023 

"When it is justifiable to end a human life?

"Here’s my answer: When consciousness has gone, never to return. Other bioethicists have different views. No surprise there. But on this we should all agree: These differences need to be hammered out in public, not behind closed doors by a body that few people have heard of.

"The last effort to define death in the United States was in 1980, and at that time there was remarkable consensus on a decision so consequential. Then, the commission proposed a new Uniform Determination of Death Act establishing that in addition to the traditional determination of death by the heart ceasing to beat, a person is dead when their whole brain has irreversibly ceased to function. All 50 states and D.C. adopted the act’s central proposition — which is staggering, really, given today’s battles over when life begins."

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Earlier:

Sunday, October 8, 2023

Friday, October 13, 2023

Fentanyl

 The NY Times has the story:

Some Key Facts About Fentanyl. It’s lowering American life expectancy and influencing the nation’s politics. By Josh Katz, Margot Sanger-Katz and Eileen Sullivan

"Overdose deaths have been increasing in the United States for decades, but the introduction of fentanyls has led to a staggering rise, accounting for the vast majority of overdose deaths in recent years.


"Around 77,000 Americans died from overdoses involving synthetic opioids like fentanyl in the 12-month period ending in April of this year, according to provisional estimates from the Centers for Disease Control and Prevention. In 2022, the most recent year with complete data, this number was around 74,000. Those three wars  [Vietnam, Iraq and Afghanistan] killed a little over 65,000 Americans combined.

"For comparison, around 55,000 Americans died in 1972 from car crashes, the year with the most such deaths. Around 49,000 died from guns in 2021 (including suicide), the year with the most such deaths.

"Fentanyl alone has become a leading cause of U.S. deaths. It was responsible for a third of deaths among Americans 25 to 34 in 2022, according to a New York Times analysis of C.D.C. mortality data.

...

"Most of the fentanyl sold in the United States is coming from Mexico, where drug cartels synthesize the drugs from precursor chemicals believed to come from factories in China. Some fentanyls are also shipped directly from China into the United States."

Sunday, October 8, 2023

Dead or alive? Debates about defining brain death and circulatory death in the medical literature

Before the invention of ventilator technology, circulatory death ('cardiorespiratory death') and brain death ('neurological death') were essentially the same thing, because one inevitably caused the other, very quickly.  But now that circulation can be maintained after the brain has gone irreversibly/permanently silent, we can make distinctions.  And some of those distinctions depend on the distinction between irreversibly and permanently.  This post starts with a position statement, but then features the underlying debate, and in fact two of the dueling papers take opposite stands on 'irreversible' and 'permanent.'. (The difference is that e.g. heart stoppage might be possibly reversible, but a 'do not resuscitate' order would mean that it was nevertheless permanent.) 

But before the debate, here's a position paper

Standards and Ethics Issues in the Determination of Death: A Position Paper From the American College of Physicians by  DeCamp, Matthew, Kenneth Prager, and American College of Physicians Ethics, Professionalism and Human Rights Committee, Annals of Internal Medicine (2023).

"Abstract: The determination of a patient’s death is of considerable medical and ethical significance. Death is a biological concept with social implications. Acting with honesty, transparency, respect, and integrity is critical to trust in the patient–physician relationship, and the profession, in life and in death. Over time, cases about the determination of death have raised questions that need to be addressed. This American College of Physicians position paper addresses current controversies and supports a clarification to the Uniform Determination of Death Act; maintaining the 2 current independent standards of determining death, cardiorespiratory and neurologic; retaining the whole brain death standard; aligning medical testing with the standards; keeping issues about the determination of death separate from organ transplantation; reaffirming the importance and role of the dead donor rule; and engaging in educational efforts for health professionals, patients, and the public on these issues. Physicians should advocate for policies and practices on the determination of death that are consistent with the profession’s fundamental and timeless commitment to individual patients and the public."

...

"Scientific advances motivate revisiting foundational concepts, including those around death and dying. Decades ago, advanced cardiorespiratory support—because of its ability to maintain cardiac and respiratory functions in individuals whose brain function was thought to have ceased—contributed to the development of brain death as a concept. Studies now show restoration of cellular and molecular activity in whole pig brains (without restoration of brain functions) 4 hours postmortem using an ex vivo perfusion system called “BrainEx” (15, 16). Today, a controversial protocol known as thoracoabdominal normothermic regional perfusion with controlled donation after circulatory determination of death can result in the resuscitation of the asystolic heart to restore circulation after what was a determination of circulatory death—to increase organ availability for transplant—but this invalidates the determination of death and breaches ethical boundaries (17, 18). Moreover, there has been ongoing advancement in ancillary tests, such as electroencephalograms, magnetic resonance angiography, single-photon emission computed tomography, hypothalamic testing (19), computed tomography angiography, computed tomography perfusion (20), and others. Results of these methods of testing can raise questions about the accuracy of clinical determinations of death.

...

"Position 1

ACP supports revising the Uniform Determination of Death Act (UDDA) to replace the word “irreversible” with “permanent” in the first clause to read, “An individual who has sustained either (1) permanent cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”


"The UDDA (21) currently states, “An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.”

############

And here's a whole series of position papers in the journal Neurology: 

The Uniform Determination of Death Act (UDDA) Revision Series

This series aims to educate the neurology community about the most important brain death controversies the US Uniform Law Commission must consider in rewriting the UDDA.

Challenges to Brain Death in Revising the Uniform Determination of Death Act: The UDDA Revision Series
James L. Bernat

What Is the Ideal Brain Criterion of Death? Clinical and Practical Considerations: The UDDA Revision Series
Nathaniel M. Robbins

What Is the Ideal Brain Criterion of Death? Nonclinical Considerations: The UDDA Revision Series
Michael A. Rubin

Must Hypothalamic Neurosecretory Function Cease for Brain Death Determination? Yes: The UDDA Revision Series
Michael Nair-Collins

Must Hypothalamic Neurosecretory Function Cease for Brain Death Determination? No: The UDDA Revision Series
Panayiotis Nicolaou Varelas

Should the Criterion for Brain Death Require Irreversible or Permanent Cessation of Function? Irreversible: The UDDA Revision Series
Ari R. Joffe

Should the Criterion for Brain Death Require Irreversible or Permanent Cessation of Function? Permanent: The UDDA Revision Series
Andrew McGee, Dale Gardiner

Should the Brain Death Exam With Apnea Test Require Surrogate Informed Consent? Yes: The UDDA Revision Series
Ivor David Berkowitz, Jeremy Garrett

Should the Brain Death Exam With Apnea Test Require Surrogate Informed Consent? No: The UDDA Revision Series
David Greer

Potential Threats and Impediments to the Clinical Practice of Brain Death Determination: The UDDA Revision Series
Ariane Lewis, Matthew P Kirschen

Rethinking Brain Death—Why “Dead Enough” Is Not Good Enough: The UDDA Revision Series
Daniel P. Sulmasy, Christopher DeCock

Monday, July 31, 2023

Altruistic kidney donors in Israel

 The Forward has the story

Why Israel has more altruistic kidney donors than any other country in the world By Michele Chabin

"Israel is in the bottom half of countries when it comes to organs harvested after death, the type used in most transplants globally. ...

"But ...for more than a decade the number of Israelis who have donated kidneys while they are still alive and well has increased to the point that Israel is the worldwide leader in live donations per capita.

"That’s in large part thanks to the Jerusalem-based nonprofit ... Matnat Chaim, Hebrew for “gift of life,” which recruits and encourages individuals in good health to donate a kidney for purely altruistic reasons. 

"Of the more than 1,450 live kidney donations Matnat Chaim has facilitated, more than 80% percent were altruistic – donated by individuals who had no connection to the recipient. According to the group’s records, it made at least half of the matches between recipients and live donors in Israel from 2015 to 2022.

"Rabbi Yeshayahu Heber, whose life was saved by kidney from a live donor, founded Matnat Chaim in 2009 with his wife Rachel. Rabbi Heber, who died from COVID-19 in April 2020, had said he was moved to recruit volunteer donors after watching other kidney patients die for lack of transplants. 

"On Israel Independence Day this spring, Rachel Heber was awarded the prestigious Israel Prize in honor of the couple’s lifesaving work. 

...

Broadly speaking, the medical definition says that death occurs when the brain is no longer functioning, even if the heart is still beating. There are exceptions, but most ultra-Orthodox rabbis say death occurs when the heart stops beating and the person stops breathing.

“The problem is, if you wait until the heart stops, you can’t harvest the organs,” said Judy Singer, Matnat Chaim’s assistant director.

"For these reasons, Heber made it his mission to recruit live kidney donors.

"With other groups, including the Halachic Organ Donor Society and the Israel Transplant Authority, Matnat Chaim has convinced many religious Jewish communities to encourage members to donate altruistically. “Today, religious Jews, and haredim especially, are at the forefront of live kidney donations,” Singer said. “They say, I can’t donate an organ after death, but take my kidney and help someone now.”About 90% percent of Matnat Chaim’s kidney donors belong to the Modern Orthodox or ultra-Orthodox streams of Judaism.

“That number used to be 97%, but we’re always looking to increase the number of secular donors and Arab donors,” Singer said.

"The group has arranged for “many” Arab Israelis to receive transplants, she said, but did not share numbers for those recipients. Matnat Chaim is looking to work with an Arab group or individual to increase the number of Arab donors and recipients in the future, she added.

...

"According to the Ministry of Health, 656 transplants were carried out in Israel in 2022. Of those about half — 326 — came from living donors. By comparison in the U.S. that same year, about 15% of all organ donations came from living donors.

"Though transplant rates have been rising in both countries, many are still dying for lack of a donor. In Israel, 77 people died waiting for one in 2022."

 

Sunday, May 21, 2023

Defining death for deceased organ donation

 Here’s a story from Science, about donation of a heart from a donor declared dead after circulatory death, ie after heart stoppage:

GIVING HEART: A new procedure for donating hearts and other organs is saving lives. But for some it challenges the definition of death   By 

Jennifer Couzin-Frankel


"As is customary regardless of whether organs will be donated, physicians waited 5 minutes to ensure that the heart didn’t start beating again on its own. It did not, and the man was declared dead. The baton then passed to the organ recovery and transplant team. They clamped blood vessels running from the torso to the brain and reconnected his body to machines that circulated oxygenated blood, causing the heart to begin pumping again. "These two interventions—initiating a heartbeat after death is declared and taking steps to prevent blood flow to the brain—are at the core of a raging debate about the ethics of such donations. To some people, the approach risks disrupting the dying process; to others, it allows that process to continue as the family desires, while also honoring individual or family wishes for organ donation.

The debate touches on the definition of death, Moazami says. “When the heart stops, we say, ‘time of death, 5:20 a.m.’” But, “The fact of the matter is, death is a process. Death is not a time point.” Cells can take hours to die. Sophisticated machinery can induce a heartbeat hours after death, but does that make a person “alive”?

Sunday, April 23, 2023

Medical aid in dying: access for children, and for mental illness

Two recent articles discuss whether there should be categorical limits on medical aid in dying (MAID).  In the Netherlands, the law now permits euthanasia for children in certain horrific situations, and in Canada, a debate continues about the status of patients with mental illness.

 From The Conversation:

Dutch government to expand euthanasia law to include children aged one to 12 – an ethicist’s view  by Dominic Wilkinson

"Ernst Kuipers, the Dutch health minister, recently announced that regulations were being modified to allow doctors to actively end the lives of children aged one to 12 years who were terminally ill and suffering unbearably.

"Previously, assisted dying was an option in the Netherlands in rare cases in younger children (under one year) and in some older teenagers who requested voluntary euthanasia. Until now, Belgium was the only country in the world to allow assisted dying in children under 12.

...

"Dutch paediatricians and parents had reported that in a small number of cases, children and families were experiencing distressing suffering at the end of life despite being provided with palliative care.

"That included, for example, children with untreatable brain tumours who developed relentless vomiting, screaming, and seizures in their dying phase. Or children with epilepsy resistant to all treatment with tens to hundreds of seizures a day.

"The study recommended improvements in access to palliative care for children, as well as altering regulation to provide the option of assisted dying in these extreme cases.

"It has been suggested that five to ten children a year might be eligible for this option in the Netherlands.

*********

From the NYT, an opinion piece:

Medical Assistance in Dying Should Not Exclude Mental Illness By Clancy Martin

"I am a Canadian, where eligible adults have had the legal right to request medical assistance in dying (MAID) since June 2016. Acceptance of MAID has been spreading, and it is now legal in almost a dozen countries and 10 U.S. states and Washington, D.C. To my mind, this is moral progress: When a person is in unbearable physical agony, suffering from a terminal disease, and death is near, surely it is compassionate to help end the pain, if the person so chooses.

"But a debate has arisen in Canada because the law was written to include those living with severe, incurable mental illness. This part of the law was meant to take effect this year but was recently postponed until 2024."



Thursday, April 13, 2023

Brain Death

 Before there was the possibility of organ transplantation, determining that someone was dead could be a relatively leisurely affair. But transplants depend on organs remaining alive after the potential organ donor has died.  If the death is due to irreversible absence of circulation and respiration (Donation after Circulatory Death – DCD), it has to be declared quickly, so that preparation for organ recovery can begin promptly. If the declaration of death is based on brain death, i.e. on irreversible absence of whole brain function (Donation after Death declared by Neurologic Criteria - DDNC), then it must occur while the potential donor is on a ventilator, so that his/her organs continue to be oxygenated.  This means that the declaration of death occurs while the ventilator is still maintaining many of the signs (respiration, heartbeat) that are usually evidence of a living person.  So deciding when someone is brain dead requires both expertise and consensus.

Here's a recent discussion of all this, including some controversy, in JAMA: 

The Uncertain Future of the Determination of Brain Death, by Robert D. Truog, JAMA. 2023;   329(12): 971-972. doi:10.1001/jama.2023.1472

"In 1980, the US Uniform Law Commission (ULC) established the Uniform Determination of Death Act (UDDA), which was subsequently adopted (with some modifications) by all 50 states.1 The law states that death is defined as either (1) the irreversible cessation of circulatory and respiratory functions or (2) the irreversible cessation of all functions of the entire brain, including the brainstem.

...

"The framers of the UDDA rejected the claim that this was a new way of defining death.2 Instead, they pointed to evidence at the time suggesting that the brain is necessary for maintaining biological functioning and that when this brain regulation is absent, homeostatic mechanisms fail, with cardiac arrest invariably occurring within 1 to 2 weeks at most. In other words, brain death and cardiopulmonary arrest were seen as equivalent and equally valid criteria for diagnosing the biological death of a patient.

"However, with improvements in critical care medicine, this equivalency has been called into question. With modern intensive care unit support, some patients can be stabilized and, if provided with mechanical ventilation and tube feedings, their bodies may survive for many years.

...

"In fact, patients with brain death may retain most of the capacities of living people, including the ability to absorb nutrition, excrete waste, heal wounds, grow, undergo puberty, and even gestate. This has led many families to reject the diagnosis and insist on the continuation of medical support for their loved ones.

"In addition, a second issue has been that, although the UDDA requires “the irreversible absence of all functions of the entire brain,” the current guidelines from the American Academy of Neurology (AAN) test for only a select number of functions and most notably do not test for hypothalamic functions, which are sometimes present in patients who are diagnosed with brain death

"In the wake of an increasing number of legal challenges related to the determination of brain death, ULC began a process in 2021 to assess whether the UDDA should be revised.1 At least 3 distinct proposals have been considered.

"Proposal 1: Revise the Guidelines to Align With the Current Definition

"One option would be to leave the UDDA intact, but revise the AAN guidelines to include testing for the absence of hypothalamic function.

...

"Proposal 2: Revise the Definition to Align With the Current Guidelines

"A second proposal has been to change the definition of brain death to be in alignment with the guidelines.

...

"Revising the UDDA so that it required not the irreversible loss of all brain functions, but rather only those functions that support consciousness and spontaneous respiration, would bring the UDDA into alignment with the AAN guidelines. This approach also has precedent, in that it is the definition that was adopted by the United Kingdom in 2008.

...

"Proposal 3: Maintain the Status Quo

"If the position endorsed by commissioner Bopp were to prevail, some states could choose to entirely eliminate the determination of death by neurologic criteria. The impact would be 2-fold: in those states it would no longer be permissible to procure transplantable organs from patients diagnosed with brain death and physicians could be required to continue to provide intensive care unit beds and life support to patients who will never regain consciousness. Such an outcome could have disastrous consequences for our existing systems of organ procurement and transplantation, leading to thousands of otherwise avoidable deaths.

"This has led some commissioners to lean in favor of not making any major revisions to the UDDA, leaving well enough alone."

Tuesday, February 14, 2023

Canada experiments with decriminalization of opioids and other drugs in British Columbia

 From the CBC:

What you need to know about the decriminalization of possessing illicit drugs in B.C.  B.C. granted exemption by federal government in November 2022; pilot will run until 2026  by Akshay Kulkarni ·

"it is no longer a criminal offence to possess small amounts of certain illicit drugs in B.C. for people aged 18 or above.

"It's part of a three-year pilot by the federal government, which granted B.C. an exemption from the Controlled Drugs and Substances Act (CDSA) on May 31, 2022. 

...

"Under the exemption, up to 2.5 grams of the following four drug types can be legally possessed:

"Cocaine (crack and powder). Methamphetamine. MDMA. Opioids (including heroin, fentanyl and morphine).

"Fentanyl and its analogues were detected in nearly 86 per cent of drug toxicity deaths from 2019 until 2022, according to the latest report from the B.C. Coroners Service."