In the Netherlands, euthanasia or assisted suicide for those whose suffering is psychiatric/psychological in nature is legally permissible, but it represents a fraction of the numbers of patients who are helped to die in this way.
And while there is no ‘right’ to euthanasia, the freedom of a doctor to refuse the request on personal grounds has been widely debated, following some well-publicised cases.
In a bid to find out what Dutch doctors think of euthanasia and assisted suicide, the researchers canvassed the views of 2500 randomly targeted general practitioners (family doctors) and specialists in the fields of elderly care, cardiology, respiratory medicine, intensive care, neurology and internal medicine between October 2011 and June 2012.
The doctors were asked whether they had ever helped a patient with cancer, other physical disease, mental illness, early or advanced dementia, or someone without any severe physical ailments, but who was tired of living, to die. Those who had not done so were asked if they would even consider helping someone to die, and under what circumstances.
Four out of 10 would be prepared to help someone with early stage dementia to die, but only one in three would do this for someone with late stage dementia, even if that person had written an advance directive for euthanasia.
Around one in four (27%) would be prepared to help someone tired of living to die if they had a severe medical condition. But fewer than one in five (18%) would do so in these circumstances if the person had no other medical grounds for suffering.
In a linked blog, lead author Dr Eva Bolt of the EMGO Institute for Health and Care Research,
Amsterdam, The Netherlands, commented: “Each physician needs to form his or her own standpoint on euthanasia, based on legal boundaries and personal values.”
Dr. James A. Colbert of Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts, said the survey results are "not that surprising."
Dr. Colbert suggested we focus our attention more on palliative care.
"A much more important issue to focus our attention on is: how do we make sure that all patients are comfortable and well cared for at the end of life? Palliative care is such an essential component of medical care, yet very few patients will see a palliative care practitioner. Studies have shown that patients with cancer who see a palliative care practitioner have better quality of life and in some cases even live longer than other cancer patients who are only treated by oncologists”.
The assisted suicide of American woman Brittany Maynard on November 1 may have tipped Colombia into legalising euthanasia.
Euthanasia has been in legal limbo in the South American nation since a decision by its Constitutional Court in 1997 that “mercy killing” was constitutional and that doctors who cooperated should not be prosecuted. It urged the government to pass a law to regulate the procedure. The government did nothing. Even sympathetic doctors were afraid to test the law and refused to have anything to do with euthanasia.
However, the issue continued to simmer away. One notorious doctor, Gustavo Quintana, claims that he has killed 200 patients in Colombia and abroad.
And earlier this week the Constitutional Court set a deadline for the Ministry of Health. It has 30 days to implement euthanasia protocols for doctors. Health agencies are supposed to set up committees to advise patients and their families about how to keep people who are depressed from requesting euthanasia.
The Court said that “without clear rules and precise procedures, doctors do not know exactly when they are committing a crime and when they are contributing to the realization of a fundamental right.”
Two New Zealand academics have proposed that surrogacy become a profession like nursing or teaching which is fully integrated into the health system. Writing in the journal Bioethics, Ruth Walker and Liezl van Zyl, of the University of Waikato, contend that both commercial and altruistic surrogacy have so many potential moral, legal and emotional complications that a complete change in the framework is needed.
Their discussion centres on decisions about whether to abort a surrogate mother’s foetus if there is a substantial abnornamlity. It would be unethical for commissioning parents to request abortion for a minor abnormality like a cleft palate, but in cases of severe abnormality, “abortion would be the morally responsible thing to do”.
Often, however, the intending parents and the surrogate mother quarrel over the fate of the baby. In a commercial model, parents often demand that the baby be aborted, which treats the surrogate as a mere vessel and denies her right to bodily integrity. In an altruistic model, the intending parents can just walk away if there are problems, leaving the mother with the baby or the decision whether to abort.
What the authors proposed is the creation of a professional cadre of registered surrogates working within a government instrumentality, with set fees and civil servants who can support the mother and parents if there are difficulties. “The professional model emphasizes the ethical dimension of surrogacy,” they believe.
“ … payment should not be tied to the delivery of a healthy infant. Although many critics of commercial surrogacy claim that it is the payment itself that is pernicious, we argue that the flaw lies in the way payment is managed. For example, in cases where the surrogate agrees to an abortion she should still receive full payment so that she is not penalized for doing the right thing. The intended parents are not buying a baby but (committed) service, which may include an abortion. Her financial situation should not be a factor in her decision whether to have an abortion.
"Further, in the professional model the intended parents would be the legal parents from the moment the baby is born. This ensures certainty for both parties, and best serves the needs and interests of the child. The intended parents should not be able to abandon the baby any more than the surrogate should be able to withhold it from them."
Despite the advance of same-sex marriage in the US, it may be some time before the law is scrubbed clean of the presumption that a male/female relationship constitutes a family.
A legally-married lesbian couple in New Jersey, Sheena and Tiara Yates, are fighting requests for visitation rights from their two children’s biological fathers.
Both men had signed written agreements that they would not interfere at all in raising the children. But after the births, they reneged. Unfortunately for the couple, New Jersey supports the presumption of paternity by the biological fathers. It does allow the extinction of paternal rights, but only if the sperm donation is performed under the supervision of a doctor. The agreements made by the women, however, were informal and thus unenforceable.
"Emotionally it's very hard for us," Sheena Yates told the media. "All we want is a family, and we can't have kids without an outside party. It's a lot for us to have to deal with. It's not just hard on us, it's hard on the kids, too."
The couple’s lawyers complain that poor and disadvantaged couples like his clients cannot afford the expensive services of sperm banks and IVF clinics which the law demands. "The way the law is structured is most protective of people who have the money to buy from a cryo-bank or have the insurance to cover fertility treatment. The courts want this to be a relatively hands-off transaction," says Kimberly Mutcherson, of Rutgers-Camden University. "There are pockets of people that are negatively impacted."
A case in Kansas raises similar issues. A lesbian couple, Jennifer Schreiner and Angela Bauer, who were already co-parenting 8 foster and adopted children, wanted a child of their own. After answering an ad in Craigs List William Marotta provided sperm and agreed to have nothing to do with raising the child. Ms Schreiner gave birth to a daughter in 2009.
This time the state of Kansas, not the sperm donor dad, intervened. Authorities wanted to declare Mr Marotta the father so that he would pay child support. As in New Jersey, there is a presumption of paternity overriding any private agreement if insemination takes place at home. As the years went on, the child’s life must have become more complicated. Her mommies have split up and her birth mother married a man and is now called Jennifer Coop. Her time is split between the two women.
One of the world’s leading stem cell scientists has entered a partnership with the disgraced Korean researcher Hwang Woo-suk to pursue cloning research in China, Science reports.
Shoukhrat Mitalipov, of the Oregon Health & Science University in Portland, was the first to successfully derive stem cells from a cloned human embryo in 2013. A South Korean newspaper, Dong-A Ilbo, has revealed that he will be working with Hwang on both animal and human cloning.
Hwang came undone in 2006 after it was discovered that two papers he had published claiming that he had created human embryonic stem cells were bogus. He was convicted of fraud and bioethics violations but received a suspended sentence. For many Koreans, he is still a hero.
Mitalipov's "strength is in primate stem cells,” Hwang told the newspaper. “My specialty is in cell nuclear transplantation. So we've agreed that if we combine his strength with mine, we can create a breakthrough outcome in curing maternal line genetic disease, on which he is now focusing."
Providing US$93 million for their project will be the Boyalife Group of Wuxi, China. Hwang says the laboratories will be sited there because the bioethics laws in Korea are prohibitively strict.
The rescue instinct is a principle deeply set in our psyche – when we encounter someone whose life is at immediate risk we feel an obligation to rescue them. No normal person would stand by as a child drowns in a pool, for example.
But how analogous is this situation to various vexed situations in clinical practice? And what do we do when we have only limited healthcare resources to allocate?
A new article in the American Journal of Bioethics argues that we are often led astray by the ‘rescue instinct’, and that our allocation of healthcare resources needs to be revised in light of other equally important considerations.
Nancy S. Jecker of the University of Washington School of Medicine believes we are often misled by our rescue intuitions.
“Although society invests in rescuing needy patients, it also rejects giving full priority to rescue, because the opportunity cost of doing so would be too great.”
The question she poses is ‘How much is too much?’ How many resources should we allocate to rescue care as opposed to, for example, preventative measures?
Jecker takes aim at the U.S. Congress’s decision to ‘rescue’ patients with end-stage renal disease (ESRD) by funding all care for individuals with this condition:
“According to the U.S. Renal Data System Annual Data Report, the total costs of ESRD in 2011 was $45.5 billion, and it represented 18% of total Medicare expenditures (U.S. Renal Data System 2013). The deeper problem is that this uneasiness about enforcing limits has been not just irrational, but unjust. It has deterred us from allocating health care fairly.”
She also targets doctors guilty of overtreating patients (which she defines as “[performing procedures that] do not have a reasonable chance of helping the patient”).
Jeker wonders what if any ethical justification there is for prioritizing rescue over preventative care. On her account, we have a psychological bias towards the real lives involved rescue over the hypothetical lives envisioned when devising preventive care schemes.
Jecker advocates greater focus on ‘upstream factors’ such as social conditions that put people at greater risk of developing a life threatening disease.
It is hard to see how this new paradigm could play out in practice: Preventative measures are important, but we also feel a countervailing moral imperative to attend to those in ‘real’ risk. Perhaps this imperative is too strong to dismiss.
The idea of ‘precision medicine’ has become the subject of much discussion, following US President Barak Obama’s 2015 State of the Union address. In his speech, President Obama promised to invest $215 million in a ground-breaking ‘precision medicine’ initiative, with the short-term aim of running drug trials for targeted cancer treatments.
Precision medicine sounds great in theory – it gives clinicians tools to identify the specific molecular/genetic profile underlying a patient’s health, disease, or condition, and thus offer more effective, targeted treatments.
But are there any attendant bioethical concerns?
De Paul University bioethicist Craig Klugeman has raised questions about privacy controls on genetic information:
“Privacy is the main bioethical issue raised by the framers of this initiative. Given the record of companies and institutions with maintaining online privacy, I’m not sure we should yet be confident that privacy could be assured. And then consider that health information will be collected via mobile devices and transmitted wirelessly presenting additional opportunities for privacy breaches.”
A similar concern has been raised by the Duke Center for Personalised and Precision Medicine. As the center’s website points out, studies of publically-available sequence data have shown that patients in research studies can be identified by their genome sequences.
There are also ethical concerns about the release of incidental findings. With such a massive increase in the amount of genetic information being collected – Obama’s program envisages a genetic database of over 1 million participants – ethical dilemmas involving significant incidental discoveries will be more common. Who should decide which findings get relayed back to patients?
As Klugeman points out, Obama’s precision medicine program may very well be “just an overpriced promise that comes to nothing”. But if it is indeed enacted, there could be a number of bioethical issues to attend to.
Here’s a Valentine’s Day story from the British press. “My brother is the 'father' of my son” is the headline over an article in the Telegraph about celebrity UK branding expert Mary Portas, aka Mary Queen of Shops. A lesbian, Ms Portas asked her brother to donate sperm to impregnate her spouse, Melanie Rickey. Their child, Horatio, was born two years ago.
Ms Portas told the London Times in a puff interview for her autobiography Shop Girl that with her brother’s help, she was able to have a genetic relationship with her son. Horatio calls Ms Portas 'Mama' and Ms Rickey 'Mummy'. Her brother is referred to as 'Daddy'.
IVF specialist Simon Fishel told the Times that sibling donations were becoming much more common, although usually a sister or mother would donate eggs to a sibling or daughter.
“It would have been more unusual ten years ago. Now that kind of situation pops up once a month [at his clinics]. If they can go for a family donor, that will be preferable and then it would be to a known donor. There’s a very close relationship. You know where the genes are coming from. They are trying to keep it in the family.”
As usual in such stories, the family background is quite tangled. Ms Portas, 54, already has two children, a boy and a girl aged 18 and 21. She split up with her husband Graham Portas, a chemical engineer, in 2003. Her brother is 52 has no wish for family of his own but will soon be moving to Bermuda to be with his girlfriend.
If you are a fat, unemployed Brit, a long Lent lies before you. Prime Minister David Cameron will announce today that people on sickness benefits because of obesity or alcohol or drug addiction could lose them if they do not follow doctor’s orders.
Mr Cameron has asked health expert Prof Dame Carol Black to study whether benefits should be withheld from those who refuse assistance. His prepared remarks say:
“Too many people are stuck on sickness benefits because of issues that could be addressed but instead are not. Some have drug or alcohol problems, but refuse treatment. In other cases, people have problems with their weight that could be addressed, but instead a life on benefits rather than work becomes the choice.
“It is not fair to ask hardworking taxpayers to fund the benefits of people who refuse to accept the support and treatment that could help them get back to a life of work. The next Conservative government is determined to make sure that the hardest to help get the support they need to get them back to a fulfilling life.”
The notion that the government should meddle with lifestyles is popular with cost-cutting bureaucrats but controversial among doctors and libertarians.
Mr Cameron’s present idea is the sharp end of the stick, but behavioural change through “nudging” has been on the government’s agenda for several years. The idea stems from the 2008 book Nudge: Improving Decisions About Health, Wealth, and Happiness, by US academics Richard Thaler and Cass Sunstein. Their theory is that personal freedom and paternalism are not mutually exclusive and that the state should act as a guiding hand, gently and inobtrusively “nudging” citizens to accept its policies.
It is clear that the health consequences of an epidemic of obesity – diabetes, heart disease, strokes and other chronic diseases -- will be a drain on Britain’s National Health Service. A 2007 report by the Nuffield Council on Bioethics on the ethics of public health suggested that the problem was too complex to be solved by making benefits conditional upon treatment.
It’s clear that after eight years of dithering and nudging, the Cameron government has decided to cut the Gordian knot. To rephrase the Biblical injunction, “this we commanded you, that if any would not diet, neither should he get the dole”.
Last year they received widespread media attention after being reprimanded by the Regional Euthanasia Review Committee (RTE) for failing to refer a patient to a psychiatrist before euthanasia. The patient, a 47-year-old mother of two, was suffering from severe tinnitus.
Most of the 232 people given euthanasia by the Levenseindekliniek last year were suffering from physical conditions such as MS, ALS or effects of a stroke. Slightly less than a quarter had cancer and 20 per cent suffered from an accumulation of old age complaints.
The clinic was originally set up in 2012 with the purpose of servicing patients unable to find a doctor to euthanize them.