The ethics of birth and death

A couple of interesting stories in the Toronto Star this morning, looking at two medical ethics issues. I was out of town, so didn't write either.

The first looked at when a woman is too old to have a baby, sparked by the death of Maria del Carmen Bousada, who gave birth to twins in December 2006 at age 66.

When it comes to motherhood, how old is too old?

Fertility experts and ethicists re-examined that question yesterday after hearing that a 69-year-old Spanish mother died Saturday, leaving behind 2-year-old twins conceived with a younger woman's eggs and donated sperm.

Maria del Carmen Bousada is believed to have been the world's oldest new mother. She gave birth in December 2006, shortly before her 67th birthday, after telling a clinic in Los Angeles she was 55, the facility's maximum age for single women receiving in-vitro fertilization.

The story goes on to outline the medical reasons for most in-vitro clinics to refuse the treatment to older patients -- the children have more health problrms -- and concluded with Margaret Somerville of McGill questioning whether medical science should be used to do things that are impossible in nature, rather than just stepping in when nature fails.

The other story looked at the other end of the spectrum. Pegged to the assisted suicide death of British conductor Edward Downes and his wife, Joan, at a Swiss clinic it asked whether more countries, including Canada, should allow assisted suicide.

"Whenever it's in the news, we know this comes up again and again," said Olga Krassioukova-Enns, executive director of the Winnipeg-based Canadian Centre for Disability Issues. "This issue, this question, affects people with disabilities and seniors and anyone part of a family."

In May, Bloc Québécois MP Francine Lalonde of Montreal reintroduced a private members' bill to amend the Criminal Code to allow assisted suicide. A similar one she introduced in 2005 failed.

A number of high-profile cases in Quebec recently drove her to try to get the bill passed again.

"We need to have this in order to allow people to make their own choice under certain conditions when the time is right for them to die," said Lalonde yesterday.

Last year, a Quebec man was acquitted after he was charged with helping his disabled uncle commit suicide. A Vancouver man was charged in May with giving his friend a loaded shotgun and a demonstration on how to use the weapon to commit suicide.

Alex Schadenberg, founder of Euthanasia Prevention Coalition, said Canadians want better end-of-life care. The mindset that older people and those with disabilities don't want to live as long as possible is a misconception, he said.

Assisted suicide considered in Pennsylvania

Pennsylvania may soon become the third state in the U.S. to allow assisted suicide.

The Death with Dignity Act is based on the Oregon law that allows physicians to prescribe lethal amounts of medication to the terminally ill at the patient's request.

"Most people do not choose to end their lives," said Dr. Arthur Caplan, the director of the department of medical ethics at the University of Pennsylvania. "Most just like having the fallback to choose to do it."

According to Oregon's annual report on the Death with Dignity Act, the average age of a person who has died under the law is 72. Among those who have died, 80 percent had cancer and 97 percent died in their homes.

Challengers of the bill argue the legislation undermines the healing and life-preserving functions of the medical system. Caplan, who did not say whether he supports the bill, said many opponents feel it'll be a "slippery slope" if the bill is passed and fear the law will be wrongly used against mentally ill or disabled persons.

Earlier this month, Washington became the second state to allow assisted suicide after voters in November approved the move. Washington's law is also based on Oregon's, which has had an assisted suicide law for more than a decade.

Under the (Pennsylvania) bill's guidelines, those who seek to end their lives would have to be diagnosed with a fatal disease that leaves them six months or less to live. Patients have to be conscious, at least 18 years of age and of sound mind to put in a request.

Doctors are also required to inform patients of alternatives to suicide, including hospice care and a variety of pain medications.

For the patient to be prescribed the lethal medications, they would have to file a verbal and written request and then be evaluated by doctors and psychologists who are unrelated to that patient's health care providers.

The suicide option would only be available for in-state residents to prevent terminally ill from collecting in the state of Pennsylvania.

A report last year found that while few people in Oregon actually chose assisted suicide, many more consider it and discussed the possibility with doctors and family members. Many also reported taking comfort from the knowledge that the option was there, even if it isn't used.

This is the second time Democratic Senator Daylin Leach has tried to get such a bill passed.

Now on Twitter

I'm just back from almost three weeks off, and have just set up a Twitter account, which you can follow to get regular updates on the things I am blogging about.

I also plan to use Twitter as a way to get debates going on various medical ethics topics -- such as one I will be blogging about in a few minutes: organ sales. It seems that Singapore has gone ahead with plans to legalize payments to people who "donate" organs, such as a kidney.

What do you think?

Stem cell tourism warning

The Scotsman newspaper has a good article this morning looking at the risks of "stem cell tourism," the practice of going aborad for treatments banned at home.

"I felt I had nothing to lose. I am just going to get worse and worse anyway. I thought I'd just take the bull by the horns and go for it." Moira Ogilvie was desperate. So the multiple sclerosis sufferer joined an increasing number of Scots going overseas for experimental stem-cell treatment not available in the UK.

Ogilvie admits later in the article she has no idea if the treatment, in China, helped -- but has no regrets.

"I didn't see it get better. Whether it would have got worse quicker, I don't know. It is still very, very slowly getting worse, but I wouldn't say a great deal worse than what it was just over a year ago. Whether what's happening with me would have happened without the stem cells, nobody knows."

Dr Insoo Hyun, from the US-based International Society for Stem Cell Research, warned against the unproven stem cell therapies.

"My sense is this is a growing problem," he said. "There are a number of studies showing a proliferation of these stem-cell clinics popping up across the world. Patients need to know there are no proven therapies using embryonic stem cells."

In a tragic case, a recent study revealed that an Israeli boy with ataxia telangiectasia, or A-T, a degenerative brain disease, who travelled to Moscow for treatment ended up with brain tumours years later caused by the stem cells.

Assisted suicide gets an escape clause in Britain

A British woman with multiple sclerosis who appealed all the way to the highest court in the land to be allowed to die by assisted suicide has been told such a procedure would be illegal.

But she -- and more importantly, her husband -- was given, essentially, a Get Out of Jail Free card by the court when it hinted that there would be no repercussions if the couple were to go abroad to seek an assisted suicide.

The case points to a key aspect of medical tourism -- those who use it to flout local laws.

Debbie Purdy, 45, says the ruling today sets the stage for her husband, Cuban violinist Omar Puente, to take her out of the country to die.

... the Lord Chief Justice Lord Judge rejected her appeal but highlighted the case of tetraplegic former rugby player Daniel James, whose parents were not prosecuted after helping him go to Switzerland to end his life last year.

After today's hearing, Ms Purdy said: "I feel that I have won my argument, despite having lost the appeal. I am very grateful for, and respect the ruling of the Appeal Court.

"They have done everything they can do to clarify that, given the Dan James judgement, Omar would be unlikely to be prosecuted if he were to accompany me abroad for an assisted death, and we are therefore one step closer to the clarification I need."

Puente would face a jail term of up to 14 years if he helped his wife die on British soil. More than 100 people in Britain have used the Swiss clinic, and none have been prosecuted on their return home.

The case points to an interesting aspect of medical tourism. In effect, it renders governments and medical associations largely unable to regulate their own health care systems, since those who disagree with local rules can simply jump on a plane and get done elsewhere what is not allowed at home.

The recent Calgary case of 60-year-old Ranjit Hayer, who had twins after visiting an Indian fertility clinic to get treatment she was denied in Canada because of her age, is another example.

Such efforts can have tragic consequences, as with the case of an Israeli boy whose parents took him to Moscow for stem cell treatment for his ataxia telangiectasia, a fatal brain disease, only to have the unproven treatment cause brain tumours.

 

Stem cell risks can be high

A heartbreaking story is coming from Israel today about a boy with a lethal brain disease whose parents -- out of desperation -- sought experimental stem cell therapy and ended up adding to their son's problems.

The boy has ataxia telangiectasia, or A-T, a degenerative brain disease that robs children of movement, while an accompanying faulty immune system leads to frequent infections and cancers. Most die in their teens or early 20s.

At age 9, the boy's parents took him to Moscow for stem cell treatment. Such clinics are located in several East European countries. In this hemisphere, Tijuana, Mexico is a favourite destination. By the time he was 13, tumours had formed on his brain stem and his spinal cord. The spinal cord tumour was eventually removed. Researchers in Israel concluded the stem cells caused the tumours to form.

The case, written up this month in the journal PLoS Medicine, has sparked warnings from stem cell researchers for patients to stay away from such clinics.

“Patients, please beware,” said Dr. John Gearhart, a stem cell scientist at the University of Pennsylvania who wasn’t involved in the Israeli boy’s care but who sees similarly desperate U.S. patients head abroad to clinics that offer unproven stem cell injections.

“Cells are not drugs. They can misbehave in so many different ways, it just is going to take a good deal of time” to prove how best to pursue the potential therapy, Gearhart said.

Last fall, I wrote in the Star about a Canadian couple hoping to go to Tijuana for stem cell treatment after the wife had a brain stem stroke. They knew it was a desperate move, but felt compelled to try it anyway. As the husband said, "If I didn't at least try, I couldn't live with myself."

It is such sentiments, critics say, that the clinics prey upon.

Funding IVF saves money

With all the controversy over multiple births recently -- octuplets born to Nadya Suleman in California and twins born to 60-year-old Ranjit Hayer in Calgary -- I reported in the Toronto Star today about studies showing that simply funding in-vitro fertilization might help alleviate the issue of so many multiple births.

And save some money in the process.

In Canada, patients pay an average of $10,000 for IVF treatments. If the procedure fails, they must pay the fee each time they try again. As a result, most couples opt to implant multiple embryos to ensure that at least one will survive to term.

"The lack of funding creates that tension, which moves people toward (implanting) two rather than one," says Dr. Edward Hughes, a professor of obstetrics and gynaecology at McMaster University and medical director at ONE Fertility clinic in Hamilton. "They want to improve their chances."

Health economics analyst Lindy Forte calculates that each multiple birth child costs medicare an extra $598,000 over its lifetime.

Here's a breakdown of the overall costs:

Covering IVF under medicare would cost the Ontario government between $70 million and $130 million a year, says Forte, but that would be more than made up for by savings in long-term health care costs. The savings, she says, could be as high as $155 million a year in Ontario alone.

The cost breakdown is:

• $40 million a year in perinatal costs when the babies are born.

• $25 million in health costs in the first year for low birth weight babies.

• Between $70 million and $90 million in long-term health and social services costs to care for children with permanent disabilities as a result of pre-term birth.

Across Canada, Forte says, the cost of covering IVF under medicare would be between $120 million and $200 million, while the cost savings would be between $230 million and $260 million.

"The cost of funding the IVF cycle is completely offset," she says.

The problem, however, is that many people seeing using IVF as a personal choice. Forte counters that  "Infertility is a medical problem and all couples have the right to reproduce."

Of such disputes are ethics debates made.

First octuplets, now an old woman's twins

Hot on the heels of a California woman, Nadya Suleman, having octuplets after receiving fertility treatment comes news that a Calgary woman, Ranjit Hayer, used in-vitro fertilization to have twins at the age of 60.

And the ethical debate over who should or should not be allowed to have babies was revved up even higher, raising some important access to care issues.

Her own obstetrician, Dr. Colin Birch, voiced doubts, telling the CBC that he couldn't reconcile himself with the idea of a 60-year-old woman getting in-vitro fertilization.

"It's going against nature. It's going against so many different things. The nature and the body has said that unfortunately you've made it to 60 and haven't had children. Unfortunately, there is some reason for that," Birch said.

"Sixty is not an optimal time to be gestating an offspring, not to mention lactating and caring for an offspring," said Juliet Guichon, who teaches bioethics at University of Calgary faculty of medicine.

While much of the debate has focused on the women in the two cases, ethicists are also starting to question why their doctorswent along, at least in the case of the octuplets.

Patients have a right to ask for treatments, and doctors have a responsibility to listen to them, the ethicists say -- but doctors also have a responsibility to say no when the circumstance demand. How they decide such things and navigate the tricky waters of the doctor-patient relationship is why more and more hospitals are hiring professional ethicists.

A 2005 study by Toronto's Joint Centre for Bioethics ranked doctor-patient disputes over treatment plans the top ethical challenge facing medicine today, ranking above such issues as waiting lists and doctor shortages.

"Thirty years ago, the issue was when patients could say no (to a doctor). Now it's when can a doctor so no (to a patient)," says Jonathan Breslin, co-author of the report.

It would seem, at least, that the Calgary doctors did refuse to treat Hayer, saying she was too old to start a family.

Hayer, however, went to India to get fertility treatment, and that introduces an entirely new element to the debate -- the inability to set standards for care at home when patients are a plane ride away from getting any treatment they want, even if it's unethical or illegal at home.

Ethicists, from what I have seen, however, agree agreed that the Calgary doctors had an ethical responsibility to care for Hayer once she became pregnant -- which they did.

Stem cell clinic claims `unsubstantiated'

A team of researchers at the University of Alberta has found the claims made by stem cell clinics --offering to do such things as reverse the effects of stroke or make people walk again -- to be wanting.

The team, led by Timothy Caulfield of the Health Law Institute at the University of Alberta, performed a content analysis of claims made on 19 web sites offering so-called "stem cell therapies." 

"We found that the portrayal of stem cell medicine on provider websites is optimistic and unsubstantiated by peer-reviewed literature."

The results are published in the December issue of the journal Cell Stem Cell, a publication of the International Society for Stem Cell Research. Clinics from around the world were studied, from the Philippines, India, Mexico, Russia, Thailand, Ukraine, Costa Rica, Dominican Republic, Germany, Turkey and Barbados.

Also in December's edition of Cell Stem Cell, the ISSCR released guidelines for the ethical use of stem cell treatments. Dr. Olle Lindvall, co-chair of the ISSCR task force that developed the guidelines and professor in clinical neurology at the University of Lund, said the guidelines are meant to protect patients from unsubstantiated claims.

"Stem cell research holds tremendous promise for the development of novel therapies for many serious diseases. However, as clinicians and scientists, we recognize an urgent need to address the problem of unproven stem cell treatments being marketed directly to patients."

Medical tourism declines

Reports out if India -- a leader in medical tourism -- say that bookings for non life-threatening surgeries are down due to the worldwide economic slowdown.

Brokers who arrange the surgeries -- and the required flights, transfers and hotel rooms -- say inquiries from patients are down significantly from last year at this time. Dr Mikdad Ukaye, part owner of Vasai-based Royal Medical Tours, said patients are worried they may not be able to afford the surgery, and expects about a 50 per cent drop in business in the coming year.

“Earlier, we received least 2-3 calls per day from clients abroad, but this year it has come down to barely 1 or 2 calls in a week. ... They are reluctant to even transfer the deposit amount thinking what if they change their plans at the last moment.”

India has been a leader in medical tourism, offering surgeries at a fraction of U.S. prices -- and up to half the cost of some other destinations.

Until now, most reports and studies have predicted fast growth for the sector, with a growing number of U.S health insurance companies offering medical tourism packages as a way to keep rates down.

Singapore's Health Minister Khaw Boon Wan said last week that slower growth in the city-state's large medical tourism industry was due to a lack of capacity.

"I don't think it's because of demand, or we are losing competitiveness, but capacity is constrained...Both public and private hospitals are short of capacity...I think it's a situation of where demand has been curtailed because we don't have enough capacity to respond."

Singapore hopes to attract over 1 million international patients a year by 2012, nearly three times the current number.