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|This week in BioEdge|
After 30 years and 3000 attempts to propose amendments, an end-of-life bill was passed by the Italian Parliament this week which allows patients to end their lives by refusing to and drink. It also allows patients to express binding end-of-life care wishes through a text or a video.
The new legislation does not permit assisted suicide or euthanasia. However, it is clearly a momentous step in that direction. "Of course, we are still missing the legalization of euthanasia that we'll propose to the next parliament," said Marco Cappato, a spokesman for the right-to-die movement. The law was passed by a vote of 180 to 71.
Media reports suggested that Pope Francis may have inadvertently given support to the controversial legislation. In November he clarified the position of the Catholic Church by stressing that only "ordinary" care need be provided to the dying, not "extraordinary" care that extends life at all costs. However, the Catholic position maintains that eating and drinking are ordinary care, as much as hygiene.
According to RAI, the principal provisions of the new law are:
The consent of the patient is paramount: "no health treatment can be initiated or continued without the free and informed consent of the person concerned"”
Artificial nutrition and hydration: these are to be regarded as medical interventions because they are administered through health devices and, consequently, can be rejected or suspended.
Continuous deep palliative sedation: sometimes called “slow euthanasia”, this is permitted by the new legislation with the consent of the patient.
Responsibilities of doctors. On the one hand, doctors cannot be prosecuted for neglecting their patients if they refuse treatment and die. On the other hand, they can refuse to participate, as a kind of conscientious objection.
Palliative care: even if the patient refuses to prolong his life with treatment that he regards as burdensome, doctors must still make every effort to relieve his or her suffering.
Living wills: the patients can express binding preferences for their end of life care through a letter, or if they are incapable of writing, through a video.
The legislation is being framed as a loss for the Catholic Church, which consistently opposed it. However, in the light of sympathetic media coverage given to several tragic end-of-life disputes, popular support in opinion polls, and lack of unity amongst Catholic medical professionals, the outcome was not surprising.
A renowned British transplant surgeon has pleaded guilty to assault after he was reported for having branded the livers of two patients with his initials.
Simon Bramhall, 53, used argon gas to label the livers “SB”. The patients were under sedation and apparently they sustained no lasting harm, as the marks disappear by themselves.
However, Joyce Robins, of Patient Concern, observed: “This is a patient we are talking about, not an autograph book.”
Mr Bramhall was suspended from his post as a consultant surgeon at Birmingham’s Queen Elizabeth hospital after a colleague spotted the initials in routine follow-up surgery.
Earlier this year the General Medical Council censured him. “It risks bringing the profession into disrepute and it must not be repeated,” it said at the time. “Whilst this failing in itself is not so serious as to require any restriction on Mr Bramhall’s registration, it is necessary in response to issue this formal warning.”
The public prosecutor said that this was a case without precedent in criminal law. “[T]hat which he did was not just ethically wrong but criminally wrong. They reflect the fact that Dr Bramhall’s initialling on a patient’s liver was not an isolated incident but rather a repeated act on two occasions, requiring some skill and concentration. It was done in the presence of colleagues.”
This bizarre case about violating a patient’s autonomy was reported around the world. However, a woman who owes his life to his skill told the Birmingham Mail that she didn’t mind:
“Even if he did put his initials on a transplanted liver, is it really that bad? I wouldn’t have cared if he did it to me. The man saved my life. It seems a bit silly, banning him from work. He’s a really good man who can do a really good job.”
Here’s an interesting case which illustrated the difference between health care in the US and UK. Detroit resident Vincent Thomas, 58, was battling multiple myeloma, and only had a few months left to live.
And worst of all, he was nearly blind because both of his eyes were screened by cataracts. He asked his doctors if they would authorise an operation to remove the cataracts. He was stopping his cancer medication and going into hospice care anyway, but he wanted desperately to see his family before he died.
There was an uproar at the clinical meeting at Michigan Medical. According to his ophthalmologist, Julie Rosenthal:
Our anesthesiologist and others on the operating room team were opposed to performing a surgery on a patient on hospice with only weeks to live. The anesthesiologist was trained in Britain and noted that Thomas' cataracts would never be removed there, where committees decide on the utility of certain treatments and procedures. For someone who would only get a few weeks of "use" out of his surgery, the costs couldn't be justified. Thomas' oncologist was concerned about his health and had a serious discussion with him. However, Thomas understood the risks and decided it was worth it to undergo the surgery.
The surgery went well. Mr Vincent regained his independence and was able to drive to see his relatives. He died a few months later.
Dr Rosenthal asks whether the right decision had been made. She argues that it was. Compared to the huge amount spent on treating resistance multiple myeloma, it was “chump change”. Treatment for the disease and the side effects can cost US $125,000 to $256,000 per patient. Cataract surgery costs about $3000. She writes:
We make heroic, costly efforts to prolong life, but what about treatments that improve life, that make people's last days better and allow them to finish their days in a meaningful way?
The UK’s fertility regulator, the Human Fertilisation and Embryology Authority, has issued a cheery picture of the British IVF industry in its first-ever “state of the sector” report. Its proudest achievement was to reduce the multiple birth rate to 11% -- a “fantastic achievement”, in the words of the HFEA press release.
The report covered the performance of fertility clinics and research laboratories in the financial year 2016-17 across a range of criteria. It is the first such report since the HFEA was formed 27 years ago.
Prof Adam Balen, Chairman of the British Fertility Society, told The Telegraph: “We welcome the report, which shows the extraordinary commitment our specialty has to transparency ... “We are confident that, in reality, there is no evidence that practices have changed or that there ought to be concerns about the sector.”
However, at the bottom of the press release, it was acknowledged that the number of “adverse incidents” had actually risen.
In 2016, 76,500 treatments were carried out in the UK– a 6% increase from 2015 – whilst the number of incidents increased by 8.5%. There was a change in the severity of incidents, with a lower number of grade B incidents and a higher number of the less serious grade C incidents.
The single grade A incident in 2016 – there were none in 2015 – involved the birth of a baby with the lethal disease cystic fibrosis. Through inadequate paperwork, the parents were not believed to be carriers. Had it been known that the embryo had a gene for the disease, it would have been destroyed and another embryo implanted.
Aileen Feeney, the head of Fertility Network UK, declared that clinics had to put safety first. “It is of grave concern to see that the number of adverse incidents at fertility clinics is continuing to rise (up 8.5 per cent in the last year), and at a rate which is higher than the growth in the number of fertility treatments carried out in the last 12 months (a 6 per cent increase)” she said.
In a very interesting brief discussion in BioNews, Hane Maung, of Lancaster University, asks whether government funding for fertility treatment should be framed as fighting disease.
Describing infertility as a disease has some strong supporters. The World Health Organization considers infertility to be “a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse”. The influential 1984 Warnock Report states that “an inability to have children is a malfunction and should be considered in exactly the same way as any other”.
However, this is overly simplistic, contends Dr Maung.
First, there are many causes of infertility. There may be anatomical or physiological anomalies; fertility declines with advancing age; some can conceive with one partner but not with another; those who are in same-sex relationships or childless by choice are socially infertile. “it is possible that some cases of infertility could be considered diseases while other causes could not,” he writes.
Second, there is the philosophical question of whether infertility is a disease or just a difference. Is a disease a mere deviation from a statistical norm? Or a harm which keeps a person from attaining his or her goals? Or both? It is difficult to say in many cases of infertility.
“It seems that we cannot reach agreement over whether infertility is a disease, even with our best theories of disease. How, then, are we to evaluate whether infertility warrants state-funded treatment?” he asks.
Rather than trying to shoehorn infertility into the disease framework, it would be better to focus on other reasons for justifying government funding, Maung argues.
we should keep the debate centred on the key ethical issues. We need to focus on the distress associated with childlessness, the right to reproductive liberty, the perceived significance of genetic relatedness, the influence of pronatalism, and the structural inequalities that make it difficult for people from certain groups to form their desired families. These are the considerations that we should examine when debating whether fertility treatments should receive state funding.
Two readers got in touch with the BBC after it broadcast a story on the positive side of egg donation.
One, 21-year-old Elizabeth, from the US, said that she learned as an 11-year-old that she was the child of her father’s sperm and an egg donor. The knowledge actually brought her closer to her parents, she says, and she wants to be an egg donor herself. “If I could help at all to de-stigmatise the idea, I would feel very proud,” she wrote.
However, the other story, from 35-year-old John, from the UK, was very different:
As I was conceived in the early 80s it's impossible to find records as to who the egg and sperm donors, my biological parents, are. It was rare for that information to be kept on file then ... Suddenly my whole existence felt like a lie.
My relationship with my social parents deteriorated and I spent years moving around, doing a number of odd jobs. I also battled with gambling issues. I felt like a gypsy. I should add that my sister had a different reaction to me. She maintains a good relationship with our social parents, whereas mine has almost entirely broken down.
Even though I am now married, with a young child of my own, I am still against gamete donation. We shouldn't be playing around with science like this. If I had been adopted, it would be easier to trace the story of how I came to be and easier to find roots. As it stands it's unlikely that my egg or sperm donor parents knew each other, and I don't know the motivations of why they chose to donate.
I feel that donor conception is a trade in human beings and very few people consider the effects it has on a child.