Do it yourself doctoring

A British bioethics centre has launched a new study, and is seeking input.

The Nuffield Council on Bioethics is looking into whether at home testing and diagnostic services make the general practitioner, or family doctor, unnecessary.

Lead researcher Professor Christopher Hood, from the University of Oxford, said: "Cutting out GPs may sometimes be a good thing, providing us with convenience, privacy and control over our health."

"But there is not much regulation of these new services and we may be getting information that causes more harm than good."

Nuffield hopes to publish recommendations next spring to help people sort through such services and understand better how to use them.

The Council would like to hear the views of a wide range of people, including those using or contemplating using these services, those involved in providing them in the public and private context, researchers, academics, regulators, policy makers and others. Responses to the consultation will be carefully considered, and a report setting out the Council’s findings will be published in spring 2010.

The deadline for submissions is July 21, 2009. Here's how to submit, from the Nuffield web site:

It would be most helpful if you could send your response to us electronically. Responses can be submitted online via our dedicated consultation website: https://consultation.nuffieldbioethics.org./go/Default.

 Alternatively, you can email your response together with the respondent’s form to: consultation@nuffieldbioethics.org

If we receive your response electronically, there is no need for you also to send a paper copy. You will receive an acknowledgement of your response. If you would prefer to respond by post or by fax, you may send your completed response and respondent’s form to:

Tom Finnegan Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS UK Fax: +44 (0)20 7637 1712 Telephone +44 (0)20 7681 9619 Email: consultation@nuffieldbioethics.org www.nuffieldbioethics.org

Home diagnostics today go far beyond drug store pregnancy tests, as I reported a year ago, and include sending blood or stool samples through the mail to diagnose everything from heart disease to cancer (for a fee), and getting your diagnosis through a secure web site.

The Nuffield study hopes to guide us through that new world.

Rights complaint against hospital

The parents of a baby girl who died at Toronto's Hospital for Sick Children have filed a complaint with the Ontario Human Rights Commission, saying their daughter received inadequate care and that a do not resuscitate order was filed without their consent.

The Star's Emily Mathieu writes about the case in today's Toronto Star.

The parents of Annie Farlow – a 2-month-old who died at the Hospital for Sick Children in 2005 after receiving what her parents allege was inadequate care because of a genetic condition – are attempting to take their case to the Human Rights Tribunal of Ontario.

"I think every child regardless of their disabilities deserves a chance at life and if the treatment or surgery is not in their best interest, then they deserve a dignified, comfortable and peaceful death," said Annie's mother, Barb Farlow, yesterday outside a meeting to determine if their application for a hearing will go forward.

Annie had Trisomy 13, a genetic condition associated with severe developmental and physical disabilities. The Farlows raised concerns that the hospital has a policy to provide children with genetic conditions only supportive care, keeping them comfortable until they die rather than attempt extraordinary life-saving measures.

The Farlows also said the hospital has been reluctant to release crucial records related to Annie's care – including an audit detailing the period of time close to her death.

The hospital said allegations that any child with a genetic condition or disability receives lesser care are untrue.

The rest of the story is here.

The Star's Helen Henderson also wrote about Annie last summer.

Annie's mother, Barbara, told her daughter's story at the University of Toronto's Joint Centre for Bioethics last June. Her lecture is archived here. The Farlows have also set up a web site to tell Annie's story.

The ethics of death

Partly as a follow up to the saga of Kaylee Wallace at Toronto's Sick Kids Hospital and partly because I have been thinking about the issue for a while, I wrote a couple of stories published in the Toronto Star today looking at death, how we handle it and how we define it.

Dead is dead, except when it's not.

"Death used to be a little more self-evident," says Kerry Bowman, a medical ethicist specializing in end of life issues at the University of Toronto's Joint Centre for Bioethics.

"Today, you're dead when the doctor says you are."

Deciding when somebody is dead or about to die is quickly emerging as one of the top ethical issues in medicine today as technology makes it increasingly possible to keep people alive who would otherwise have died not so long ago.

"The technology has far outstripped the ethics," says Tim Falconer, author of That Good Night: Ethicists, Euthanasia and End-of-Life Care. "Feeding tubes and ventilators weren't designed to keep people alive for 15 years, but that's what they're being used for."

As well, says Bowman, with organ transplants more common, deciding the precise moment of death has become vital, since under the "dead donor rule" organs can only be harvested once the donor has died. And the sooner after death that happens, the healthier the organs will be.

Fro the rest of the story, click here.

In a companion piece, I also take a closer look at Falconer's book, which I blogged about last week.

Tim Falconer didn't set out to write a book about death. It just worked out that way.

He planned to write about ethicists and the growing role they seem to be playing in our modern lives – from business to government to medicine – and explain how they do their jobs.

But like any journalist, he was attracted like a bug to light to the most intriguing stories. Those were the ones about death and end-of-life ethical issues.

In That Good Night: Ethicists, Euthanasia and End-of-Life Care, which takes its name from the Dylan Thomas poem Do Not Go Gentle Into That Good Night, Falconer takes the reader on his journey through the increasingly ethically complicated ways death is handled in modern society – particularly in hospitals.

Few of us, he says, are prepared.

"We go through life knowing we are going to die, and then it's a surprise when it happens," says Falconer, a magazine writer and journalism professor at Ryerson University.

With all the machines that can keep us alive today, the medications and the medical advances, death, Falconer says, is increasingly more of a "negotiated event" than a sudden thing.

For the rest of the story, click here.

 

The ethics of baby Kaylee's life

  With the chance of little Kaylee Wallace donating her heart to Lillian O'Conner, as had been hoped earlier this week, now seemingly passed, the ethical debate has taken off in earnest.

In a story in today's Toronto Star, I look at the ethics of transplants, and why donors and recipients are generally not known to one another.

"The death of one person needs to be separated from the need of an organ in another person," Bowman says. "Our system is going to be an ethical mess if we allow one to pull the other."

Linda Wright, director of bioethics at University Health Network, says allowing the families of dying patients to decide where organs will go would mean that some deserving patients may be left out.

"Because organs are so scarce and so valuable, the argument has been that we should give them to the person who needs them the most," says Wright, who stressed she is not talking about any case in particular.

Wright warns, however, that allowing donor families to decide who gets an organ is open to abuse, since we can never know the motivations of those involved.

Organs could end up distributed on the basis of race, religion or economic class, rather than need, says Michael Millis, director of the transplant centre at the University of Chicago Medical Center.

In a worst-case scenario, it could lead to organs being bought and sold, says Margaret Somerville, director of the McGill Centre for Medicine, Ethics and Law.

"You worry about some sort of scheme that might come up, some sort of payment for organs."

My colleague at the Star, Theresa Boyle, looks at the question of donation after cardiac death, or DCD.

"This case is really exceptional because heart transplants after (cardiac death) are extremely rare. There's really only minimal experience worldwide," Dr. Sam Shemie, medical director of organ and tissue donations at Canadian Blood Services, said yesterday.

The New England Journal of Medicine last year reported on three cardiac-death transplants involving infants at Denver Children's Hospital, touching off a debate about medical ethics. In each case, the heart was removed from a newborn suffering from severe brain damage less than two minutes after they were taken off life support. While the hearts saved terminally ill babies, questions were raised about whether the donors were really dead.

The Denver cases stirred debate about how long after cardiac functioning ceased should a retrieval team wait to ensure the baby's heart would not restart without intervention. While the chances of a successful transplantation improve the faster the heart is harvested, acting too soon can make retrieval seem like death by organ donation.

In a Canadian Press piece, Margaret Somerville and the University of Toronto's Trudo Lemmens reflected on the role of the media in the wrenching case.

The saga was being played out in real time on TV networks, news websites and in the pages of newspapers, with the names of all the players attached. The very public nature of the case concerns many medical ethicists who feel a deep sense of unease as they watch it unfold.

"These are not the kinds of decisions that have to be taken in the newspapers," says Trudo Lemmens, a professor of health law and bioethics at the University of Toronto.

"I guess one of the things you could ask is: Is having this media frenzy around this (case), is it a sufficient respect for that baby’s life and death?" wonders ethicist Margaret Somerville.

Their words seemed to bear themselves out this morning, when Kaylee's father Jason Wallace lashed out at the media.

Speaking to TV cameras in front of the Hospital for Sick Children, Jason Wallace lashed out at recent media coverage and hospital staff.

"The public's judging us, that we want our daughter to die in some way," Wallace said. "We're going through this.

"And now having the public now judge us that we're doing something wrong?"

In an interview with Sun this morning, the father vowed he wants his daughter to live.

"Forget people that think we're trying to euthanize our child," he said.

"This is BS!" He alleged Sick Kids staff told him to stop going public, saying one person told him, "you should keep your mouth shut and let your daughter die with dignity."

"Comments from this hospital saying things like we'll have to consider at some point in time how much money we're spending caring for your daughter," he said. "There is no issue whatsoever, I want my daughter to live."

Toronto Star reporter Emily Mathieu, who has led coverage of this story all week, gave us all a sense of the difficult week with a front-page story today looking at Kaylee's life and her parents' anguish.

They had nine months to prepare for the life of their daughter.

But, instead of sharing hopes and dreams for the baby's future, the parents have had less than two months to accept the fact their daughter was gravely ill and likely to die.

"We thought we were going to be able to have a normal life, take her home, do what a normal family would do," said her mother, Crystal Vitelli, 20. Kaylee's short life has been anything but normal.

She has spent her entire life in hospital and, on Tuesday, with the entire city watching, was taken off a respirator and was expected to die. In a nearby operating room, another critically ill baby was waiting for a heart transplant from Kaylee.

But Kaylee lived and last night, in a dramatic and emotional turn of events, her parents revealed that they were planning to take their daughter home to Bradford for the first time.

 

 

Picking who gets your baby's heart

Lillian O’Connor is one month old, and won't survive without a new heart. Kaylee Wallace is two months old, and due to a brain condition, won't survive once she is taken off a ventilator.

Their story has raised a number of ethical concerns.

They are in the same hospital, Toronto's Hospital for Sick Children. Their parents heard each others' story, and Kaylee's parents offered their girl's heart to Lillian.

Kerry Bowman, an ethicist with the Joint Centre for Bioethics, called that a wonderful human gesture, but can't be done.

Bowman, quoted frequently on this case in the media, worries that such promises put us on a slippery slope, by connecting the death of one person to the survival of another. It's a small step from there, he warns, to saying that since the donor will die anyway, why not allow euthanasia to speed up the process?

The other fear is that allowing people to pick who gets a family member's organs might mean that the most deserving (as in, the sickest) patient might not get the life-saving transplant. People might want to give the organs to someone who is like them, socially or culturally.

They might even try to sell them, ethicists warn.

It seems there is no shortage of slippery slopes in this story.

Book guides us into That Good Night

Here's something I didn't know until I read the latest book by Toronto-based magazine writer and Ryerson University instructor Tim Falconer, That Good Night: Ethicists, Euthanasia and End of Life Care:

The word Euthanasia comes from the Greek for "Good Death."

Leaving aside the question of whether I should have known the origins of the word euthanasia (today's schools aren't big on ancient Greek), it says a lot, I think, about how modern society has come to view death since this word was first coined.

In our society, post-eugenics and post Nazi-ism, the word euthanasia has much darker connotations than a literal translation would suggest. Today, it conjures up images of cruelty, designer babies and a world in which some people are ranked ahead of others (and other ranked as lesser beings).

With all that baggage, it is hardly surprising that so many people -- particularly from the disabled community -- have been so vocal in their opposition to anything that might make euthanasia possible in Canada. In North America, only Oregon and Washington state have euthanasia laws, with Pennsylvania currently considering legislation.

Falconer would like to see euthanasia and assisted suicide laws in Canada, with strict controls. He's not optimistic it will happen any time soon, however. A full story will appear int eh Toronto Star soon.

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.

GlaxoSmithKlein plan for developing countries backfires

A recent announcement by drug giant GlaxoSmithKlein to spend 20 per cent of its profits from developing country sales on building the health care infrastructure of those same countries, and to sell patented drugs there at a quarter of their market price, sounded quite generous.

At least on the surface.

The plan, however, has not held up to the scrutiny of some of those analyzing it, including The Global Bioethics Blog, which focuses on biotech research in developing countries.

These promises may make GSK look saintly, but the impression largely fades on reflection. 20% of GSK's profits in developing countries does not amount to much. ...

Gestures of philanthropy towards the world's poorer nations, on the part of aggressively profit- seeking pharmaceutical companies, is to be taken with a grain of salt at the best of times. In a down economy, when pharmaceutical companies are merging for their own survival, full-blown skepticism is in order.

The blog cites an editorial in the respected medical journal, The Lancet, and an analysis of the Glaxo plan by the Policy Innovations think tank -- which both point out that because the company makes so little money in poor developing countries (where few can afford its products), 20 per cent of its developing country profits is very little indeed.

... an editorial in the Lancet calculates it as less than 0.1% of GSK's total profits, and the folks at Policy Innovations see this as boiling down to about $50,000 per country, hardly a generous investment in local health infrastructure. Selling patented medicines at a quarter of the usual (bloated) price may not be of much help either to those who live on a few dollars per day. And while giving access to patents sounds nice, the road from possession of patent information to research to marketing is a long and winding road paved by a great deal of money. Who has that kind of money? The big pharmaceutical companies, like GSK. But they won't really invest to create drugs for conditions affecting developing countries because the profit margin would be meagre. We come full circle.

Not everyone, of course, questioning the company's move. New Scientist welcomed it, noting that it at least will spark a debate about how much Big Pharma should do to help people in developing countries.

Oxfam spokesman Rohit Malpani urged other companies to emulate GSK, but would like to see the company free up its anti-HIV medication patents as well. Richard Barker of the Association of the British Pharmaceutical Industry says GSK's stance will spark a debate about "how much further industry can and should go" in promoting global health.

 

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.