Organ Donation after euthanasia, in the Netherlands

The American Journal of Transplantation discusses the fraught issue of patients who wish to end their lives with medical assistance, and then become deceased donors.

Organ Donation After Euthanasia: A Dutch Practical Manual

1. J. Bollen^1,*, 
2. W. de Jongh², 
3. J. Hagenaars³,
4. G. van Dijk⁴, 
5. R. ten Hoopen⁵, 
6. D. Ysebaert⁶, 
7. J. Ijzermans⁷, 
8. E. van Heurn⁸ and
9. W. van Mook¹

Version of Record online: 10 MAR 2016

DOI: 10.1111/ajt.13746

© Copyright 2016 The American Society of Transplantation and the American Society of Transplant Surgeons

Issue

American Journal of Transplantation

Volume 16, Issue 7, pages 1967–1972, July 2016

Abstract: "Many physicians and patients do not realize that it is legally and medically possible to donate organs after euthanasia. The combination of euthanasia and organ donation is not a common practice, often limited by the patient's underlying pathology, but nevertheless has been performed >40 times in Belgium and the Netherlands since 2005. In anticipation of patients' requests for organ donation after euthanasia and contributing to awareness of the possibility of this combination among general practitioners and medical specialists, the Maastricht University Medical Center and the Erasmus University Medical Center Rotterdam have developed a multidisciplinary practical manual in which the organizational steps regarding this combined procedure are described and explained. This practical manual lists the various criteria to fulfill and the rules and regulations the different stakeholders involved need to comply with to meet all due diligence requirements. Although an ethicist was involved in writing this paper, this report is not specifically meant to comprehensively address the ethical issues surrounding the topic. This paper is focused on the operational aspects of the protocol."

"Introduction: In September 2013, an article addressing organ donation after active euthanasia was published in the Dutch Journal of Medicine (1). A patient suffering from a progressive neurodegenerative disease was able to donate his liver and both kidneys. Organ donation after euthanasia has been described previously, with excellent transplant outcome (2).

"Prior to December 2015, organ donation after euthanasia was performed 15 times in the Netherlands and resulted in donation of eight pairs of lungs, 13 livers, 13 pancreases and 29 kidneys. These developments necessitated the creation of a practical manual addressing the combination of both procedures because of the unique and complex legal and ethical issues, together with the appropriate medical care (3). This manual can be used as a framework for hospitals that wish to facilitate such successive procedures. The essential components of the practical manual, developed by the collaborative efforts of the Maastricht University Medical Center and the Erasmus Medical University Medical Center Rotterdam, are discussed below.

"Although the manual addresses euthanasia and organ donation in the Netherlands, many of the issues raised and discussed may be similar or comparable to those in any country that allows organ donation in the setting of euthanasia. A discussion of ethical considerations is not included in this paper, but this is not intended to dismiss the necessary ethical discussions to be held in this domain."

Death in California isn't the same anymore

The NY Times has the story: Who May Die? California Patients and Doctors Wrestle With Assisted Suicide

"On Thursday, California became the fourth state in the country to put in effect a law allowing assisted suicide for the terminally ill, what has come to be known as aid in dying. Lawmakers here approved the legislation last year, after Brittany Maynard, a 29-year-old schoolteacher who had brain cancer, received international attention for her decision to move to Oregon, where terminally ill patients have been allowed to take drugs to die since 1997.

Oregon was the first state to pass an assisted suicide law, and was followed by Washington and Vermont. Under a Montana court ruling, doctors cannot be prosecuted for helping terminally ill patients die, as long as the patient makes a written request. With the California law, 16 percent of the country’s population has a legal option for terminally ill patients to determine the moment of their death, up from 4 percent.

In the states with assisted suicide laws, the number of people who request and take medication to hasten dying has steadily increased. In Oregon, for example, 16 people ended their lives under the law in 1998, and by 2015, that number had grown to 132.

The California legislation is strict, intended to ensure that patients have thought through the decision and are making it voluntarily. Patients must make multiple requests for the medication and have a prognosis of less than six months to live.

Many hospitals have not yet released policies for dealing with the law. And no doctor, health system or pharmacy will be required to comply with a patient’s request. Doctors who object to the practice are not even required to refer patients who request the medication to another physician.

Roman Catholic and other religious health systems have said they will not participate. “We are crossing a line — from being a society that cares for those who are aging and sick to a society that kills those whose suffering we can no longer tolerate,” José H. Gomez, the Catholic archbishop of Los Angeles, said in a statement Wednesday."

Assisted suicide legislation is clarified in Germany (family members won't be prosecuted, but professional assistance is forbidden)

Timo Mennle writes  from Zurich:

"the German parliament ("Bundestag") passed a new law concerning assisted suicide. The law generally forbids aiding others in their own suicide. However, it has two important points: first, it imposes a penalty of up to 3 years imprisonment if assistance for suicide is provided in a "business-like" fashion. This explicitly rules out the provision of such services for profit but also the professional provision by organization. Second, relatives and persons with a close relationships are exempt from punishment if they assist in a suicide out

of “altruistic motives.” The same is true for medical doctors in case of

decisions on a by-case basis. The new law closes a legal gap that previously left medial doctors and relatives in an ambiguous situation.

The express purpose of the new law is to "prevent a habituation of society to assisted suicide and to prevent the pressuring of old or sick persons into killing themselves." The vote in parliament was taken anonymously; the usual obligation of the members of parliament to vote according to their respective party's recommendation was explicitly suspended and they were asked to follow only their own conscience in this decision.

This and more information can be found in the following news articles

(unfortunately in German):

http://www.tagesschau.de/eilmeldung/eilmeldung-279.html

http://www.tagesschau.de/inland/bundestag-verbot-sterbehilfe-organisationen-101.html

An English article about the topic can be found here:

http://www.usnews.com/news/world/articles/2015/11/06/germany-passes-law-allowing-some-types-of-assisted-suicide"

Death with dignity law in California

The NY Times has the story: California Governor Signs Assisted Suicide Bill Into Law

"California will become the fifth state to allow doctors to prescribe life-ending drugs to terminally ill patients, after Gov. Jerry Brown signed the measure into law on Monday, ending his months of silence on one of the most emotional issues in the state this year.

In an unusually personal signing message, the governor, a former Jesuit seminarian, signaled how torn he was by the issue.

“I do not know what I would do if I were dying in prolonged and excruciating pain,” he wrote. “I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

...

"Oregon has allowed what opponents call “assisted suicide” and supporters term “aid in dying” since 1997, and, after a Supreme Court ruling in 2006 that affirmed the law, Washington, Montana and Vermont have also approved the practice.

"Opponents have long raised concerns that ill and disabled people could be coerced into choosing death over more care, which can be expensive and burdensome. The Catholic Church, which considers suicide a sin, also helped lead opposition.

...

"In 2014, four states considered bills to allow physicians to help terminally ill patients end their lives; this year, that number increased to 24 states plus the District of Columbia, according to Compassion and Choices, a group that supported the law.

...

"The California law includes protections designed to assuage concerns about potential abuse. Patients must be terminally ill and mentally sound; they must be capable of administering the medication themselves; and two different doctors must approve it.

"Hospitals and doctors will also have the option of not offering end-of-life drugs..

New discussions of assisted suicide/death with dignity

California Assembly approves right-to-die legislation
"Ater nearly a quarter-century of efforts in California to afford terminally ill patients the right to end their lives with a doctor’s help, state lawmakers and the governor may be on the verge of granting the dying that authority.

The state Assembly on Wednesday passed a bill that would allow physicians to prescribe life-ending drugs to the terminally sick. The End of Life Option Act, which the Catholic Church and others oppose, awaits final approval by the Senate -- three months after that chamber passed a similar bill by a thin margin.

The fate of the legislation is likely to rest with Gov. Jerry Brown, a former Jesuit seminary student who has yet to articulate his position on the measure. Brown has expressed concern about it, based more on legislative procedure than his own beliefs."

xx
California Legislature Approves Assisted Suicide
SACRAMENTO, Calif. — In a landmark victory for supporters of assisted suicide, the California State Legislature on Friday gave final approval to a bill that would allow doctors to help terminally ill people end their own lives.

Four states — Oregon, Washington, Montana and Vermont — already allow physicians to prescribe life-ending medication to some patients. The California bill, which passed Friday in the State Senate by a vote of 23-14, will now go to Gov. Jerry Brown, who will roughly triple access to doctor-assisted suicide across the country if he signs it. Mr. Brown, a former Jesuit seminarian, has given little indication of his intentions.

But leaders of the “death with dignity” movement said they hoped the passage of the California law could be a turning point in efforts to expand options for suffering patients at the ends of their lives.

“It allows for individual liberty and freedom, freedom of choice,” said Mark Leno, a Democrat from San Francisco, who compared the issue to gay marriage. “We’re doing something not only right today but profoundly important.”

xx

In the NY Times a discussion of whether terminal illness is the only reason:
Helping a Suicide When the End Isn’t Near

Assisted dying: the debate in England

The Telegraph has the latest:
‘There is nothing sacred about suffering’, insist faith leaders in assisted dying call--Bishops, priests and leading Rabbis break ranks with mainstream religious case opposition to assisted dying

"Religious teachings that elevate suffering and pain as something “sacred” should not be used to prevent terminally ill people taking their own lives, leading Christian and Jewish clerics have insisted.

"An alliance of bishops, priests and rabbis have broken ranks with the religious establishment to voice support for plans to change the law to allow a form of assisted suicide in the UK for the first time.

"In a letter to The Daily Telegraph, they argue that far from being a sin, helping terminally ill people to commit suicide should be viewed simply as enabling them to “gracefully hand back” their lives to God.

"There is, they insist “nothing sacred” about suffering in itself and no one should be “obliged to endure it”, they insist.

"Signatories of the letter, in support of a bill to be debated by MPs next month, include Lord Carey, the former Archbishop of Canterbury, who stunned the Church of England last year when he announced that he had changed his mind on the issue.
...
"MPs are due to debate an Assisted Dying Bill tabled by the Labour backbencher Rob Marris next month.

"It would allow people thought to have no more than six months to live and a “settled intention” to end their life to be allowed be given a lethal dose of drugs on the authority of two doctors.

While most of the major religious groups in the UK have voiced opposition, some polls suggest a majority of people who identify themselves with a faith are in favour of relaxing the law."

Doctor assisted dying: the debate, and the Dutch experience

Sangram Kadam points me to two different takes in the ongoing debate on doctor-assisted dying, and whether it should be legalized, and if so how common it should become.

The first is from the Economist:
The right to die--Doctors should be allowed to help the suffering and terminally ill to die when they choose

It begins as follows:

"IT IS easy to forget that adultery was a crime in Spain until 1978; or that in America, where gay marriage is allowed by 37 states and may soon be extended to all others by the Supreme Court, the last anti-sodomy law was struck down only in 2003. Yet, although most Western governments no longer try to dictate how consenting adults have sex, the state still stands in the way of their choices about death. An increasing number of people—and this newspaper—believe that is wrong.

"The argument is over the right to die with a doctor’s help at the time and in the manner of your own choosing. As yet only a handful of European countries, Colombia and five American states allow some form of doctor-assisted dying. But draft bills, ballot initiatives and court cases are progressing in 20 more states and several other countries (see article). In Canada the Supreme Court recently struck down a ban on helping patients to die; its ruling will take effect next year. In the coming months bills will go before parliaments in Britain and Germany.
*************

The second article is by Theo Boer, a professor of ethics at the Protestant Theological University at Groningen. He supported the right to die law in the Netherlands, but now is dismayed by the growth in the number of people choosing to end their lives.
I supported our euthanasia law, but I was terribly wrong: Dutch ethicist

It begins as follows:

"In 2001 The Netherlands was the first country in the world to legalize euthanasia and, along with it, assisted suicide. Various safeguards were put in place to show who should qualify and doctors acting in accordance with these safeguards would not be prosecuted. Because each case is unique, five regional review committees were installed to assess every case and to decide whether it complied with the law. For five years after the law became effective, such physician-induced deaths remained level - and even fell in some years. In 2007 I wrote that ‘there doesn’t need to be a slippery slope when it comes to euthanasia. A good euthanasia law, in combination with the euthanasia review procedure, provides the warrants for a stable and relatively low number of euthanasia.’ Most of my colleagues drew the same conclusion.

"But we were wrong - terribly wrong, in fact. In hindsight, the stabilization in the numbers was just a temporary pause. Beginning in 2008, the numbers of these deaths show an increase of 15% annually, year after year. The annual report of the committees for 2012 recorded 4,188 cases in 2012 (compared with 1,882 in 2002). 2013 saw a continuation of this trend and I expect the 6,000 line to be crossed this year or the next. Euthanasia is on the way to become a ‘default’ mode of dying for cancer patients."

Contagion, for good and ill

Frank Bruni had a recent NY Times column that reminded me of the chain of high school suicides:
"Between May 2009 and January 2010, five Palo Alto teenagers ended their lives by stepping in front of trains. And since October of last year, another three Palo Alto teenagers have killed themselves that way, prompting longer hours by more sentries along the tracks. The Palo Alto Weekly refers to the deaths as a “suicide contagion.”

Sometimes something similar happens with good acts, and I was reminded of that by this recent story from Israel (about a different kind of chain of kidney donations than I usually write about):

Chain Reaction of Good Will
"Avraham Shapira donated a kidney to a stranger and set off a series of altruistic gestures. A few months later his cousin, Yehuda Rabinovich, was inspired by Shapira and also donated a kidney to a stranger. From there the movement spread around the Shomron region. So far six people have donated kidneys to complete strangers."

In Canada, Doctors worry how organ donations will be affected by Supreme Court ruling on assisted suicide

Here's the story from the National Post
Doctors worry how organ donations will be affected by Supreme Court ruling on assisted suicide

"As the nation awaits legalized doctor-assisted death, the transplant community is grappling with a potential new source of life-saving organs — offered by patients who have chosen to die.

"Some surgeons say every effort should be made to respect the dying wishes of people seeking assisted death, once the Supreme Court of Canada ruling comes into effect next year, including the desire to donate their organs.

"But the prospect of combining two separate requests — doctor-assisted suicide and organ donation — is creating profound unease for others. Some worry those contemplating assisted suicide might feel a societal pressure to carry through with the act so that others might live, or that it could undermine struggling efforts to increase Canada’s mediocre donor rate.

“Given the controversy and divided opinion regarding physician-assisted suicide in Canada, I don’t think we are anywhere near being ready to procure the organs of patients who might choose this path,” said Dr. Andreas Kramer, medical director of the Southern Alberta Organ and Tissue Donation Program in Calgary.


“I think there is a legitimate possibility that advocating aggressively for this could compromise the trust that the Canadian public has in current organ-donation processes,” Dr. Kramer said.
...
"Organ harvesting after doctor-assisted death is already a reality in Belgium, which became the second country in the world, after the Netherlands, to legalize voluntary euthanasia in 2002.

"In 2011, Belgian surgeons reported the first lung transplants using lungs recovered from four donors put to death by lethal injection. All — two patients with multiple sclerosis, one with a neurological disorder and the other a mental illness — explicitly and voluntarily expressed their wish to become an organ donor after their request for euthanasia was granted, the team reported.

“We now have experience with seven lung donors after euthanasia,” Dr. Dirk van Raemdonck, a surgeon from University Hospitals Leuven, told the National Post. “All recipients are doing well.”

Lungs, as well as kidneys and livers, have been retrieved and transplanted from a total of 17 euthanasia donors, Dr. van Raemdonck said. The results will be presented next week at the annual meeting of the Belgian Transplantation Society in Brussels."

Are we nearing a turning point for doctor-assisted suicide/death with dignity?

The NY Times has a thoughtful piece looking back at recent changes, and considering what hasn't changed:  Stigma Around Physician-Assisted Dying Lingers

"Five states, in various forms, countenance doctor-assisted dying. Others are considering it. In California, legislation to permit such assistance is scheduled to receive a hearing this week. A lawsuit in New York that seeks a similar result was filed in State Supreme Court last month by a group of doctors and dying patients. The emotional wallop of these issues is self-evident, and it is captured in the latest installment of Retro Report, a series of video documentaries that explore major news stories of the past — looking back at where we have been to see where we may be headed.
...
"Arguments, pro and con, have not changed much over the years. Assisted dying was and is anathema to many religious leaders, notably in the Roman Catholic Church. For the American Medical Association, it remains “fundamentally incompatible with the physician’s role as healer.”

Some opponents express slippery-slope concerns: that certain patients might feel they owe it to their overburdened families to call it quits. That the poor and the uninsured, disproportionately, will have their lives cut short. That medication might be prescribed for the mentally incompetent. That doctors might move too readily to bring an end to those in the throes of depression. “We should address what would give them purpose, not give them a handful of pills,” Dr. Ezekiel Emanuel, a prominent oncologist and medical ethicist, told Retro Report.

But to those in the other camp, the slippery-slope arguments are overwrought. Citing available information from the few jurisdictions where assisted dying is permitted, supporters of “dying with dignity” laws say that those looking for an early exit tend to be relatively well off and well educated. There is no evidence, they say, to suggest that such laws have been used promiscuously by either patients or their doctors. As for the medical association’s ethical judgment, it “focuses too much on the physician, and not enough on the patient,” said Dr. Marcia Angell, a former executive editor of The New England Journal of Medicine. Writing in The New York Review of Books in 2012, Dr. Angell asked, “Why should anyone — the state, the medical profession, or anyone else — presume to tell someone else how much suffering they must endure as their life is ending?”

Doctor-assisted dying in Canada

The Globe and Mail has the story:

Supreme Court rules Canadians have right to doctor-assisted suicide

"Canadian adults in grievous, unending pain have a right to end their life with a doctor’s help, the Supreme Court ruled on Friday.

The unanimous ruling, by establishing that the “sanctity of life” also includes the “passage into death,” extends constitutional rights into a new realm. The courts have used the 1982 Charter of Rights to establish gay marriage and to strike down a federal abortion law. The new ruling will change the way some Canadians are permitted to die.

In a brief, powerful opening paragraph, the court explained why it was creating a new constitutional right to autonomy over one’s death in some circumstances: Those who are severely and irremediably suffering, whether physically or psychologically, “may be condemned to a life of severe and intolerable suffering” by the government’s absolute ban on assisted dying. “A person facing this prospect has two options: she can take her own life prematurely, often by violent or dangerous means, or she can suffer until she dies from natural causes. The choice is cruel.”

The decision was signed by The Court, which happens occasionally when the justices wish to lend their decisions extra weight. The nine judges, who range in age from mid-50s to 74, dismissed the notion that competent adults cannot consent to their death. “We do not agree that the existential formulation of the right to life requiresan absolute prohibition on assistance in dying, or that individuals cannot ‘waive’ their right to life. This would create a ‘duty to live,’” the ruling says.

The court decision puts Canada in the company of a small group of countries such as Belgium – and U.S. states Washington and Oregon – that permit doctor-assisted death. And it gives the Conservative government difficult choices as it heads toward an election expected in the fall. The court suspended its ruling for 12 months to allow for new rules and laws to be drafted, but Ottawa could choose to do nothing, and allow provinces and medical regulatory bodies to create the ground rules for assisted death. Or it could do what it did when the Supreme Court struck down prostitution laws 14 months ago: study international models and then create a uniquely Canadian version that may or may not respect the principles established by the court."

HT: Nicola Lacetera

Will suicide remain a crime in India?

From the NY Times: India and the Right to Suicide
By JERRY PINTO

"Section 309 of the Indian Penal Code of 1860, a piece of legislation designed by the very Victorian Lord Macaulay, which punished attempts to commit suicide with a fine or up to a year in jail or both. Aiding or instigating suicide — an offense created later — was punishable by up to ten years in jail, including possibly hard labor.

"The rationale for criminalizing attempted suicide is the standard theological argument: Since only God could give you life, only God could take it away. The harsher penalty for abetment arose from something more distinctly Indian.

"India has strict laws against demanding a dowry of brides and their families. But even after marriage, women can be harassed by in-laws asking for money, gold or gifts, and some, driven to despair, kill themselves. Criminal abetment to suicide was often used to take such cases to court.

"But now, at the instigation of the ruling Bharatiya Janata Party, the law stands to be repealed. This follows a 2008 recommendation by the Law Commission, which suggested that attempted suicide should be “regarded more as a manifestation of a diseased condition of mind deserving treatment and care rather than an offense to be visited with punishment.”

"The news comes none too soon, given that India has the world’s highest suicide rate for 15-to-29-year-olds and desperately needs to rethink its approach to mental health. (In many cities, electro-convulsive therapy remains a common treatment for depression and suicidal tendencies; in small villages, the standard cure might be exorcism.) Although the anti-suicide law has rarely been applied, its very existence — and the threat of prison — discouraged people who attempted or considered suicide from seeking help. The authorities would sometimes leverage it for political advantage or to extract money by blackmailing already traumatized families."

Will medically assisted dying become legal in Britain?

The Telegraph has the story: Assisted dying must be legalised, demand key figures

"Political leaders must agree a plan to legalise assisted dying as one Briton a fortnight is now travelling abroad to end their lives, an alliance of prominent figures from across public life warns today.

In a letter to The Daily Telegraph, some 80 doctors, writers, actors, clerics and politicians say an “overwhelming majority” of the public now supports a change in the law and that Parliament must allow time to finally resolve the issue.

The signatories, which include Lord Carey, the former Archbishop of Canterbury and Ian McEwan, the author and winner of the Booker Prize, argue that Britain is “closer than ever” to a historic change after progress in the House of Lords on a Bill tabled by Lord Falconer, the former Lord Chancellor."
***********

In related news from England:
Right-to-die campaigner and MS sufferer Debbie Purdy - who forced the government to publish rules on assisted suicide - dies aged 51

• "Debbie Purdy has died aged 51 at Marie Curie Hospice in Bradford
• Was one of most outspoken activists in legal battle over assisted suicide
• She won a landmark ruling in the House of Lords in 2009 resulting in a guidelines on assisted suicide being published by the government
• She had been refusing food as she wanted to 'control' her death
• Her husband has paid tribute to 'a much loved wife, sister, aunt and friend' "

Repugnant transactions: gradual or radical change?

Policy makers and advocates who wish to relax a ban on some presently repugnant transactions may not always be glad to have the support of those who demand more radical change, since those more radical changes may remind people of just what aroused their repugnance in the first place.

Two examples have showed up in my email stream lately, the first having to do with those who support "death with dignity" and would like physicians to be allowed to help people nearing the end of life to die peacefully. The second comes from the debate about whether the ban on compensating kidney donors should be relaxed.

‘Prophylactic’ Suicide
"Perhaps the moment is right for broaching the idea of what we might call prophylactic suicide: the decision of an elderly person to pre-empt the grim reaper and avoid the disabilities of extended life.

Organizations such as Compassion and Choices, and Final Exit, are campaigning for dignified terminations of life for those with incurable diseases. And with some success, since Oregon, Washington, Vermont and Montana have recently established the right to aid-in-dying. What I propose goes a step further, extending the right to people before they face terminal or debilitating illnesses.

With nearly half of people 85 or older suffering from Alzheimer’s disease, concerns about quality of life in old age are reasonable, even if opinions about what to do about the situation vary widely. However sane prophylactic suicide might be, getting assistance is illegal."


And here's a counterpoint to the cautious proposal by Sally Satel that I blogged about yesterday.

The Kidney Crisis
by Richard A. Epstein
Monday, October 27, 2014

"Recently, a distinguished list of academics signed an open letter to President Barack Obama, Health and Human Services Secretary Sylvia Matthews Burwell, Attorney General Eric Holder, and the leaders of Congress. The letter implored the administration to take prompt and effective steps to end the shortage of organs now available for transplants, especially kidneys. Its signatories announced: “We call for the swift initiation of evidence-based research on ways to offer benefits to organ donors in order to expand the availability of transplants.“

I chose not to sign that letter. It was not because I disagreed with its unhappy diagnosis that the chronic shortage of organs available for transplants, especially kidneys, is inexcusable; on that point, the letter was spot on. Rather, I refused to sign because I believe that the letter’s call to action was hopelessly slow in the face of an unending cascade of unnecessary deaths. If heeded, its call will be the latest in a long series of well-intentioned failed attempts to end the government scourge created by the current ban on kidney sales. This ban was implemented by the National Organ Transplantation Act (“NOTA”) of 1984, sponsored by Senator Orrin Hatch and then-Representative Al Gore. NOTA’s central provision makes it illegal to “acquire, receive, or otherwise transfer” an organ to another person for “valuable consideration,” which with minor exceptions blocks both cash and in-kind payments.

To solve the problem of organ shortages, we must begin by repealing NOTA and implementing a free market for organs. The area in which that voluntary market would work best is for kidneys, both live and cadaveric. Kidneys are the most desperately sought organ. Of the close to 125,000 people now waiting on the Organ Procurement and Transplantation Network, (OPTN) transplant list, more than 100,000 are waiting for kidneys, and the number is rising daily. Relative to transplants of pancreas, livers, hearts, lungs, and intestines, kidney transfers are the easiest to execute, with the greatest benefits to the recipients and the transferors alike.

The open letter reports that we are in a losing battle with kidney shortages. On the supply side, the number of live donations is now down to about 5,700 per year from 6,000 per year some five years ago. Most of those transfers come from family members, where the matches may be less than ideal, and the health of the donor less than perfect. Also on the supply side, the number of accidental deaths of young individuals is down, which cuts off, for the best of reasons, the most desirable source of cadaveric kidneys. On the demand side, better healthcare now allows individuals who suffer from diabetes and kidney disease to live long enough so that they will actually need dialysis or other treatment.

The ability to get organ donations from strangers is very small even though the net benefits are enormous. The mortality risk to the donor is in the order of 3 parts in 10,000. The extra life to the recipient of a live kidney is in the order of 15 to 20 years. (That figure is far greater than the gains from a cadaveric kidney, whose condition is likely to be degraded at the time of death, and to deteriorate thereafter in the interval needed to complete transplantation, if consent can be obtained in time from grieving relatives.) The gains to recipients of a live transaction, if monetized, could easily exceed one, even two, million dollars, at a total cost that is below $100,000 per donor, which includes personal discomfort, loss of work time, and family dislocations. But altruism does not work well when donors have to incur uncompensated losses of that size. Unfortunately, the huge potential for gains from trade is blocked by the firm NOTA prohibition against organ sales.

The open letter does not refer to those gains from trade. It in fact criticizes them. “To ensure equality,” it reads, “private transactions between individuals should remain prohibited.” The letter then seeks to accomplish the impossible by endorsing a centralized approach administered by the United Network for Organ Sharing (UNOS). This nonprofit organization was founded in 1984, when the risks of kidney transplants were greater and the waiting lists far shorter than the 4.3 years of today. This is up from 2.8 years only five years ago. If UNOS remains in charge, the waiting times will continue to grow.

On the positive side, the letter proposes a set of possible healthcare experiments that might involve the provision of in-kind compensation to potential donors that could cover life-long health and disability insurance and funereal benefits. These could, in principle, be supplemented by “a pension contribution, tax credit, or charitable contribution.” Unfortunately, the letter frets so much about the downsides of improvident kidney transfers that it accepts a set of procedural limitations that doom the experiment. New experimental programs, doubtless subject to extensive internal oversight, have to meet as-yet unspecified standards on informed consent, psychological tests, and of course long wait periods before the donation can take place.

The simplest objection to this program is that it is too little and too late to dent the shortage. Any government experiment will take years first to debate and then to perform. Thereafter further delays will be incurred in trying to make sense of fragmentary data. Any pilot programs will prove yet again that justice delayed is justice denied, especially for the thousands of individuals who die in the interim.

It’s important to realize that any short-term experimental approach cuts out some indispensable benefits that only open markets can supply. The basic logic of a market is that it allows people to match up with others in order to secure gains from trade, which, as noted above, are huge for potential live kidney transplants. But kidney markets are difficult to organize because real gaps in information plague both sides of the market. After all, kidney transplants take place only once for any live kidney donor, and rarely more than twice for any kidney recipient. In one sense, these markets are even more difficult to crack than real estate markets, which exhibit a similar pattern of low-frequency and high-value transactions.

To navigate these markets, it is therefore critically necessary for third party intermediates to add their reputational bond and transactional skills to assure, as brokers, both buyers and sellers (no more donors, as it were) that the transaction will go as scheduled. And, no, there is no need for the government to supply these intermediates. The market forces that generate brokers for real estate could work here, where customers on both sides of the market enjoy full legal protections against bad performance, "

Pope Francis on euthanasia and in vitro fertilization

In connection with recent developments concerning medically assisted suicide/death with dignity, the Catholic Church has strongly reaffirmed its opposition to that and other repugnant transactions, particularly involving reproduction.

Pope Francis denounces euthanasia as 'sin against God'. The Pope strongly condemns the 'right to die' movement, and warns against abortion, IVF and stem cell research

"Pope Francis denounced the right to die movement on Saturday, saying that euthanasia is a sin against God and creation.

"The Latin American pontiff said it was a “false sense of compassion” to consider euthanasia as an act of dignity.

"Earlier this month, the Vatican’s top bioethics official condemned as “reprehensible” the death by assisted suicide of a 29-year-old American woman, Brittany Maynard, who was suffering terminal brain cancer and said she wanted to die with dignity.

“This woman (took her own life) thinking she would die with dignity, but this is the error,” said Monsignor Ignacio Carrasco de Paula, the head of the Pontifical Academy for Life.

“Suicide is ... a bad thing because it is saying no to life and to everything it means with respect to our mission in the world and towards those around us,” he said, describing assisted suicide as “an absurdity”.
...
"The Pope also condemned in vitro fertilization, describing it as “the scientific production of a child” and embryonic stem cell research, which he said amounted to “using human beings as laboratory experiments to presumably save others.”

“This is playing with life,” he said. “Beware, because this is a sin against the creator, against God the creator.”

"The Pope considers the assisted suicide movement as a symptom of a contemporary “throw-away culture” that views the sick and elderly as a drain on society.

"Francis urged doctors to take “courageous and against-the-grain” decisions to uphold church teaching on the dignity of life."

Medically assisted dying in Oregon: Brittany Maynard, RIP

Here's the story from NBC
Death With Dignity Advocate Brittany Maynard Dies in Oregon

"Brittany Maynard fulfilled her final wish Saturday, purposely ending her own life on her own schedule, activists close to her family confirmed Sunday night.

She was 29. She was diagnosed earlier this year with a fatal brain tumor — told the cancer likely would kill her in six months. But she had no intention, she said, of allowing the disease to control how she lived, or how she died."

Here are some related websites with further information on Ms. Maynard and on the death with dignity movement:
THE BRITTANY MAYNARD FUND
To expand the death-with-dignity option to all

Compassion and Choices


My previous posts on the debates and developments surrounding dignity in dying/ assisted suicide are here.

Death with dignity developments in Britain

In the Telegraph: Assisted suicide guidelines relaxed by Director of Public Prosecutions
Doctors and nurses who help severely disabled or terminally ill people to take their own lives are less likely to face criminal charges

"Until now all health care professionals faced a greater chance than others of being prosecuted for helping people to die because of the trust their patients placed in them.
Alison Saunders, the Director of Public Prosecutions, said this special deterrent would now only apply to those directly involved in a person's care.
Anti–euthanasia campaigners accused Ms Saunders of "decriminalising" assisted suicide by health care professionals "at a stroke of her pen".
Dr Michael Irwin, the former GP nicknamed "Dr Death" for helping several people kill themselves, said the change was a "wonderful softening" that would "make life easier" for people like him."

Medically assisted dying: debated in the NY Times

Here's the debate on medically assisted dying  in Tuesdays NY Times:

UPDATED OCTOBER 7, 2014 12:53 PM

Expanding the Right to Die

INTRODUCTION

André da Loba

Some readers who commented on a Room for Debate forum about the dismal state of elder care said they wanted to be able to end their lives on their own terms to avoid a drawn-out, onerous death. A 29-year-old woman with terminal brain cancer has announced a campaign to support physician-assisted suicide leading up to her own death next month. Since Oregon became the first state to legalize physician-assisted suicide for terminally ill patients, Montana, New Mexico, Vermont and Washington have permitted it.

Should the right to die be expanded further, and if so, what should the standards be?

READ THE DISCUSSION »

DEBATERS

• 

  Oregon Shows That It Can Work Sensibly and Fairly

  THADDEUS M. POPE, HEALTH LAW INSTITUTE, HAMLINE UNIVERSITY
  Safeguards ensure that patients who are terminally ill make voluntary, informed decisions. There is no evidence of exploitation.
• 

  It Violates Medical Principles and Is Dangerous

  IRA BYOCK, INSTITUTE FOR HUMAN CARING
  Holland shows how such measures get out of control. While the state of dying in America is outrageous, two wrongs don't make a right.
• 

  Everyone Deserves to Die With Dignity

  ANITA FREEMAN, SISTER OF TERMINALLY ILL PATIENT
  I watched my 66-year-old sister die in pain from Stage 4 liver cancer. It took five weeks and it was excruciating for both of us.
• 

  Too Many Questions Remain

  ILORA FINLAY, PROFESSOR OF PALLIATIVE CARE
  This is not about compassion or choice or morality. Those are common currency to both sides of the debate.
• 

  Limit Agressive Treatments for the Sickest and Oldest

  SANDEEP JAUHAR, CARDIOLOGIST AND AUTHOR
  I see it all the time: sick, elderly patients being treated by a slew of specialists who aggressively order tests and procedures that result in physical (not to mention psychological and financial) harm.
• 

  Denying Someone a Peaceful Death Can Be Unethical

  JOHN M. GROHOL, PSYCHOLOGIST
  When doctors equate healing with quantity of life, they ignore the quality of life. If suffering is intolerable it is inhumane not to end it.

Assisted suicide and the Church of England: signs of dissent

Lord Carey: I support assisted dying--The intervention of the former Archbishop of Canterbury is a dramatic departure from the official line of the Church of England

"Lord Carey, the former Archbishop of Canterbury, is supporting moves to legalise assisted dying, it has emerged.
His intervention is a dramatic breach with the official line of the Church of England. It comes days before the House of Lords considers a Bill tabled by Lord Falconer allowing doctors to prescribe terminally ill patients a lethal dose of drugs.
Lord Carey argues that upholding the sanctity of human life without regard to suffering caused in the process could go against the spirit of Christian teaching.
He will point to the fact that Christians already rely on the ethical principle of “double effect” to justify giving terminally ill patients doses of painkillers which will ultimately kill them.
In an article last night, he said that advancing medical technology posed a “ethical turning point” and he believed that showing mercy and dignity in death should be “enshrined in law”, adding: “The fact is that I have changed my mind. The old philosophical certainties have collapsed in the face of the reality of needless suffering.”
...
"Opponents of the Bill said they were “flabbergasted” at Lord Carey’s change of position. Dr Peter Saunders, of the Christian Medical Fellowship, said: “There is no biblical precedent or justification for compassionate killing.
“There is a world of difference – ethically, legally, philosophically and theologically – between helping someone to kill themselves with a lethal drug on the one hand and proportionate pain relief or withdrawal of meddlesome treatment on the other.” Bishop Michael Nazir Ali, the former Bishop of Rochester, and a friend of Lord Carey, said: “We must not assume that we know when people are going to die. Lord Carey himself knows of individuals, that I also know of, who were given six months to live and lived for years afterwards.”
A spokesman for the Church of England said: “The Church of England is opposed to assisted suicide.” He said that the General Synod passed a motion in February 2012 which “expresses its support for the current law on assisted suicide as a mean of contributing to a just and compassionate society in which vulnerable people are protected”.
*********
Update:
Church of England calls for review on assisted dying
Church's unprecedented stance comes after former Archbishop of Canterbury backs change in the law to allow assisted dying
"The Church of England has taken the unprecedented step of calling for a major review on whether to allow assisted dying after Lord Carey, the former Archbishop of Canterbury, stunned senior bishops by declaring his support for a change in the law.
In the wake of Lord Carey’s dramatic intervention, the Bishop of Carlisle, the Rt Rev James Newcome, said that the Church would now back a royal commission to re-examine the issue.
Bishop Newcome, who speaks for the Church in the Lords on health issues, said that while bishops had been “surprised” by the content and timing of the former Archbishop’s article, it had highlighted “just what an important issue this is”.

Dignity in dying (versus assisted suicide)

Views on what are repugnant transactions sometimes change, and it may be that those who are seeking change are wise to re-frame the issue.  Something like that is going on in the U.K. right now, where assisted suicide is illegal (as it is in most places).

Here's the website of the Campaign for Dignity in Dying, which says:
"We campaign to change the law to allow the choice of an assisted death for terminally ill, mentally competent adults, within upfront safeguards. You can help us make that change happen.

Under our current law, some dying people are forced to suffer against their wishes. If we can change the law no more people will die, but fewer will suffer. Change the law - take action."

Elsewhere they define: ASSISTED DYING
"Assisted dying is when a terminally ill, mentally competent adult, making the choice of their own free will and after meeting strict legal safeguards, takes prescribed medication which will end their life."
***********

See previous posts.