Preparing for a swine flu pandemic

Margaret R. McLean, director of bioethics at the Markkula Center for Applied Ethics at Santa Clara University, says preparing for a swine flu pandemic must be about far more than stockpiling vaccines or freeing up hospital beds.

It must also go hand-in-hand with ethics, she says.

In a video  posted to YouTube, McLean discusses the issue, drawing on research she did two years ago looking into response to a possible bird flu pandemic.

In pandemic planning, as in medicine in general, the allocation of these scarce medical resources is the most difficult ethical issue confronting the current health care system. No one wants to speak of rationing, but it occurs daily and necessarily escalates during a disaster. In a time of pandemic, rationing is inevitable and must be done in a manner that is transparent, respectful of persons, inclusive, accountable, proportional, fair, and minimizes harm.

Drawing on the Canadian experience with the 2003 SARS outbreak, the authors of “SARS and Hospital Priority Setting” (Jennifer AH Bell, et al) argue that a public health crisis demands heightened attention to fairness: “In the midst of a crisis such as SARS where guidance is incomplete, consequences uncertain, and information constantly changing, where hour-by-hour decisions involve life and death, fairness is more important rather than less.”

The World Health Organization, meanwhile, has a 33-page document outlining the ethics of pandemic planning, looking at such issues as access to treatment, quarantine, the role of health care workers, the importance of international co-operation, etc.

Swine flu ethics

Hong Kong says it will detain in hospital anyone arriving there who has a fever, at least until it can be proven that they don't have swine flu.

Hardly a surprising reaction by a place that was the epicentre of the SARS outbreak six years ago, but it raises interesting ethical questions about the needs of the many versus the rights of individuals.

Is it ethical to effectively jail someone merely on the suspicion of illness? On the other hand, with thousands, perhaps millions, of lives at stake if this thing becomes a pandemic, would it unethical not to detain people?

Tough questions, to be sure, but ones that I suspect we'll be hearing more about in the coming days as swine flu continues scaring people around the world.

Detention sounds like an easy answer, but it raises some practical problems. For one, will people avoid getting treatment for fear that doing so will get them detained? If even a handful of people react that way, the results could be catastrophic. On the other hand, can we count on people to do the right thing and get tested -- and stay indoors if diagnosed -- without strict controls?

Local health authorities are meeting around the world to discuss theses issues.

Another practical concern is deciding who will get vaccinated against this new flu. Health care workers will almost certainly be top of the list, but even the details of that could be up for debate. I wrote in the Toronto Star last fall about a study that argued that not all medical staff should get the flu shot during a pandemic. Why would a foot doctor be needed. it asked.

Better, it said to direct some of the vaccine to truckers and public works staff to ensure that food, water and electricity remain available through any health crisis.

"It takes a lot of people to keep society going," says Nancy Kass, a professor at the Johns Hopkins Berman Institute of Bioethics and lead author of the study in the most recent edition of the journal Biosecurity and Bioterrorism.

Traditional pandemic planning calls for giving first priority for medical treatment to hospital staff and "first responders" to a crisis, such as firefighters and ambulance workers, so that the immediate health crisis can be dealt with effectively.

But as Hurricane Katrina showed three years ago, the study argues, "the after-effects of a disaster can be as damaging as the precipitating event," as electricity and heat are cut off, clean water becomes scarce and sewage starts to back up.

"There could be widespread social chaos, significant outbreaks of other infectious diseases, and severe anxiety, with the possibility of social degeneration, looting, or even violence as people try to secure needed supplies," the study says.

Even people whose homes were not damaged by the hurricane had trouble getting food, electricity and gasoline, Kass says in an interview.

Up to 40 per cent of the workers whose job it is to keep the lights on and the water flowing could be absent from work after a pandemic, the study says. That's enough to cause a breakdown of such services.

I will be watching to see how the many ethical issues play themselves out with the swine flu story.

Meanwhile, blogger Janet D. Stemwedel (aka Dr. Free-Ride) has been keeping track of how various airlines and others are responding. From a Canadian perspective, both Air Canada and WestJet are waiving fees for changing Mexican travel plans.

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.

Tortured ethics

In the wake of new revelations about Bush-era torture of terrorism suspects, the American Medical Association has written a letter to US President Barack Obama telling him that the use of doctors in torture violates basic medical ethics.

Any involvement by physicians in torture is fundamentally incompatible with the physician’s role as a healer. Such involvement would violate core ethical obligations of the medical profession to “first, do no harm” and to respect human dignity and rights.

These core principles are enshrined in the Code of Medical Ethics of the American Medical Association (AMA) and the codes of other professional medical organizations throughout the world. Our AMA Code forcefully states medicine’s opposition to torture or coercive interrogation and prohibits physician participation in such activities. Our Code calls on physicians to support victims of torture, to report the use of torture, and to strive to change situations in which torture is practiced. At stake are the rights and well-being of individuals, the integrity of medicine, and society’s trust in the profession.

The group says it is ready and willing to work with the new president "to ensure that these core principles guide our nation’s physicians."

Last Saturday, the Washington Post outlined the role of medical professionals in the torture.

The CIA dispatched personnel from its office of medical services to each secret prison and evaluated medical professionals involved in interrogations "to make sure they could stand up, psychologically handle it," according to a former CIA official.

The alleged actions of medical professionals in the secret prisons are viewed as particularly troubling by an array of groups, including the American Medical Association and the International Committee of the Red Cross.

AMA policies state that physicians "must not be present when torture is used or threatened." The guidelines allow doctors to treat detainees only "if doing so is in their [detainees'] best interest" and not merely to monitor their health "so that torture can begin or continue."

The various justifications used by the CIA for using medical professionals are outlined on the Mic Check blog, along with other justifications, as contained in a declassified CIA memo.

Being a middle aged guinea pig

For anyone who has ever been tempted to participate in a health study -- or wondered about those who do take part -- it might be worth reading the Booster Shots medical blog at the LA Times.

The blogger, Rosie Mestel, takes readers through her experience being interviewed as a control subject for a cancer study.

A few weeks back, I came home to find a letter stuffed in my mailbox explaining that a group of researchers was seeking an adult woman to match against another individual in the neighborhood who'd had a cancer diagnosis. As far as I could figure, it was an epidemiology study in which they make lots and lots of similar matches and try to tease out lifestyle and other factors that may have a bearing on cancer risk.

I ummed and awwed for about a week, and then finally sent a form back with an agreement to be interviewed.

It turns out, she kind of liked it, and was sad to see it end.

From the other side of the gurney, researcher and blogger Summer Johnson, said the blog made her reflect on the impact her work has on her subjects.

Perhaps atypical, idiosyncratic, or just one person's point of view, it made me pause to think about the human subjects I've interviewed and how this process effects them during and after the research study is over.

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.