Patients' families want doctors to talk more

Doctors don't talk enough, and that has to change.

That's the conclusion of a recent study by researchers at the University of San Francisco Medical Center, which found that even when there is little to say or the information is uncertain, the families of critically ill patients want to know as much as they can.

Douglas White, and assistant professor at UCSF's Program in Medical Ethics and lead author of the study, said the families understand that doctors will not always have all the answers.

"Our interviews revealed that caregivers appear to believe that some uncertainty is unavoidable, and just the nature of life. ... The vast majority of families of critically ill patients want physicians to openly discuss the prognosis, even when physicians can't be certain that their estimates are correct."

Previous studies have found that doctors are reluctant to discuss cases with families, particularly when the prognosis is uncertain.

The new stdy, published in the January issue of the American Journal of Respiratory and Critical Care Medicine, is based on face-to-face interviews with 179 family members of patients in four different Intensive Care Units.

Eighty-seven per cent said they would want to be told of all prognostic estimates, even if they were tentative, and most said they appreciated doctors showing candor in discussing uncertain outcomes, White said. More information will help families decide on care, and prepare for whatever happens.

 "We learned that family members wanted prognostic information in order to know whether they needed to begin to prepare for the chance that their loved one might die, and so begin the bereavement process. ...I think one of the strongest messages that comes from this study is that family members want to have this discussion with the physician, and want to have the opportunity to take care of unfinished personal and familial business before their loved one dies. They need that chance to say their goodbyes, in case the patient does die."

Doctors, he said, need to learn the skills involved in dealing with families of critically ill patients.

 

AstraZeneca links to Nobel probed

In case you missed it, I had a story on the front page of the Toronto Star  yesterday looking at a corruption probe into allegations pharmaceutical giant AstraZeneca's sponsorship of Nobel Award publicity companies influenced the awarding of the prize for medicine this year.

At this point, the investigation by Swedish anti-corruption prosecutors is still looking into whether a full investigation is needed. As they described it to me, everything at this stage is "very preliminary."

Part of the Nobel Prize in Physiology or Medicine was awarded this fall to Harald zur Hausen, a German scientist who discovered the links between human papilloma viruses and cervical cancer. The discovery could be a financial bonanza for AstraZeneca, which holds the patents on ingredients in the vaccines used to fight the viruses.

Officials at AstraZeneca and Nobel have denied any wrongdoing.

Since my story appeared, but the Times of London and the London Telegraph have picked up on the story, as well as others.

Prosecutors are also looking onto free trips to China for awards judges.

Why drug trials go wrong

I've written in this blog before about medications causing adverse effects -- sometimes to the point of needing to be withdrawn from the market.

Well, a team of Toronto researchers might have found some of the reason why: The people who end up having problems aren't being used in drug trials.

Robert Fowler,  a doctor at Sunnybrook Health Sciences Centre, teamed up with a few colleagues to look at drug testing methods in the wake of pharmaceutical companies being forced to remove new medications from the market after discovering adverse side effects. He presented the findings  at Toronto’s Joint Centre for Bioethics  recently and spoke with me afterwards about his research.

Fowler and the others found that drug companies were deliberately excluding from their studies the very people who are often the most likely to have adverse side effects from medication: the very young, the very old and young adult women.

“The people who end up getting into trouble are those who weren’t included in the study."

He said drug companies have good reasons for being selective. Older people are more likely to be taking other medications that might interfere with what they are testing, and using children in clinical trials for experimental drugs is frowned upon, as is the use of women in child-bearing years.

“It’s a reasonable way to set up a trial."

Fowler, an assistant professor of medicine at the University of Toronto whose study was published last year in the Journal of the American Medical Association, said the problem is that once the trials are completed, the results get picked up by a medical journal and doctors start writing prescriptions for all types of patients — including those excluded from the testing.

That’s when the trouble starts, Fowler said, and it’s something he’s seen first hand.

After digging through almost 5,000 studies, they found that, not surprisingly, the type of people who tended to have problems were never part of the original testing.

Fowler and the others said studies should specify how test subjects were selected. Fowler has already begun to see such information in medical journals, which helps doctors decide whether a patient will benefit from a new drug.

A further step, Fowler said, would be for drugs to get only limited approval after a clinical trial that excludes large groups of people, with full approval coming only after wider tests are done. Right now, he said, “there is no appetite and no funding” for such further studies.

TV teaches medical ethics

A study in the latest issue of The American Journal of Bioethics says 80 per cent of medical and nursing students watch television medical dramas. All that's available online of the study is an abstract, but it gives some tantalizing details.

"Viewing of television medical dramas is a social event and many students discuss the bioethical issues they observe with friends and family. Television medical dramas may stimulate students to think about and discuss bioethical issues."

I have heard many in the medical and ethics fields complain that our medical schools do not do enough to emphasize ethics in the curriculum.

Could this be a symptom of that? It would seem that the students, at least, are interested in discussing the issue.

Tooting my own horn -- one of 50 top blogs!

Allow me a moment of self-indulgence.

This blog has been rated in the Top 50 Medical Ethics Blogs in the world by the web site Uspharmd.com -- 23rd overall and Number One internationally. Or, at least, first on the international list.

Congratulations to me.

Uspharmd.com targets pharmacists, pharmacology students and consumers, rating schools, giving industry news and offering consumer information -- and has its own blog.

Here's what they say about this blog:

International Medical Ethics Blogs.

As the world grows more connected, medicine cannot be isolated to ethics in just one country. The following bioethics blogs offer an international perspective.

Medical Ethics blog. This blog at the Toronto Star, written by a long-time ethics journalist, gives a Canadian perspective on North American medical ethics.

The top blog in the world is blog.bioethics.net. "Written by the editors of American Bioethics Journal, this blog includes information the editors receive and share with readers," according to Uspharmd.com.

That's a tough act to beat, and it's certainly on honour to be on the same list.

Vatican issues bioethics instructions

The Vatican this morning issued its long-awaited Dignitas Personae detailing the Catholic Church's stand on several bioethics issues, from in vitro fertilization to cloning to freezing embryos.

There are few surprises, given past Catholic teachings on the sanctity of life, but the document gives full papal authority to those teachings.

Here's what's not allowed:

• in vitro fertilization.
• research in and use of embryonic stem cells.
• post-fertilization birth control methods such as morning after pills, the so-called abortion pill RU-486 (mifepristone) and the inter-uterine device (IUD).
• surrogate motherhood.
• human cloning, both reproductive and therapeutic.
• hybrid cloning using animal oocytes (immature female germ cells) to reprogram the nuclei of human somatic cells.
• freezing embryos or oocytes for use in artificial fertilization.
• re-implantation diagnosis of embryos to avoid genetic defects or select for gender or other qualities.
• reduction of implanted embryos to prevent multiple births.
• intracytoplasmic sperm injection (ICSI) to overcome male fertility problems.
• germ line cell therapy to modify genes transmitted to offspring.
• genetic enhancement for purposes other than medical treatment. 
• use of human biological material of illicit origin, such as experimentation on human embryos.

The following procedures are considered morally acceptable:

• promotion of natural fertility including hormone treatment and surgery for endometriosis or obstructed fallopian tubes.
• use of stem cells obtained from adult organisms, umbilical cord blood or fetuses dead by natural causes.
• research into the prevention of sterility.
• somatic gene cell therapy for strictly therapeutic purposes in an individual patient.

Assisted suicide in HD TV

At 9 pm tonight in London, 4 pm in Toronto, a British TV show will broadcast the assisted suicide of an American man with an incurable motor neurone disease.

  Craig Ewert, 59, died two years ago at a Swiss clinic. His death, the result of ingesting a lethal dose of barbiturates, is part of the documentary Right To Die? by Oscar-winning Canadian director John Zaritsky, who last year released the documentary The Suicide Tourist.

His death, for which Ewert paid $3,000 (US), has sparked a debate in Britain about assisted suicide, where the practice is illegal. Dr. Peter Saunders, director of the campaign group Care Not Killing, said the show was a "cynical attempt to boost television ratings."

"There is a growing appetite from the British public for increasingly bizarre, reality shows. It's a slippery slope. The danger is that we start to believe in a story that there is such a thing as a life not worth living."

Ewart's wife of 37 years, Mary, was at his side for the suicide and defended his decision.

"For Craig, my husband, allowing the cameras to film his last moments in Zurich was about facing the end honestly. This wasn't a film about him personally. He was keen to have it shown because when death is hidden and private, people don't face their fears about it. They don't acknowledge that it is going to happen, they don't reflect on it, they don't want to face it. That's the taboo."

Ewart defends his decision himself in a clip from Sky Real Lives posted to the Sky TV web site.

His final momentsshow Ewert being given a last-minute chance to back out, and his wife supporting him.

“Mr Ewert, if you drink this you are going to die,” the Dignitas staffer who prepared the mixture says.

Undaunted Mr Ewert drinks the mixture through a straw.

“Give me some apple juice. Please can I have some music?” he then asks.

As the moment of death approaches Mrs Ewert asks Mr Ewert: “Can I give you a kiss?”

“Of course,” Mr Ewert says. Ms Ewert says:

“I love you,” to which her husband replies, “I love you, sweetheart, so much.”

“Have a safe journey, I will see you some time,” Ms Ewert says.

Moments before his eyes close for the final time Mr Ewert says: “Thank you.”

His wife then says: “Safe journey. Have a good sleep.”

 

Brain steroids urged

Steroids are wrong for athletes, but okay for scientists. Or pilots. Or students cramming for an exam or would-be job applicants hoping to do well in an interview. Or maybe just about anybody who is really, really busy. Like your doctor.

That's the argument made by seven researchers in a paper published in the prestigious journal Nature  over the weekend.

Stanford University law professor Henry Greely, one of the authors, said the moral repugnance that is often focused on steroid use in sports should not be applied to drugs meant to enhance mental capacity.

"Better-working brains produce things of more lasting value than longer home runs."

Acknowledging that thorny ethical and medical questions remain to be addressed, pharmaceutical enhancement of natural mental gifts is a trend to be welcomed, the seven co-authors from Harvard, Stanford and other prestigious institutions said.

"We call for a presumption that mentally competent adults should be able to engage in cognitive enhancement using drugs. ... From assembly line workers to surgeons, many different kinds of employee may benefit from enhancement and want access to it, yet they may also need protection from the pressure to enhance."

At least two of the co-authors are consultants for pharmaceutical companies.

Greely said the group wanted to debunk arguments that drug enhancement is immoral, compared with other means of strengthening mental performance, such as a strong coffee or an expensive tutor.

"Society shouldn't reject them just because they're pharmaceutical enhancements."

Leigh Turnerof the University of Minnesota Center for Bioethics, and formerly of the University of Toronto's Joint Centre for Bioethics, was unconvinced.

"It's a nice puff piece for selling medications for people who don't have an illness of any kind."

Other ethicists have raised concerns that people may be coerced -- directly or indirectly -- into taking performance enhancing drugs.

George Annas, who heads the health law and bioethics program at Boston University, said the authors present an idyllic view of brain-modulating drugs that emphasizes the potential upside that could lead to wide-spread usage before the safety or side effects of such drugs are fully understood.

"The NIH (National Institutes of Health) is not going to fund this research. If the drug companies don't fund it, it's not going to get done."

The commentary cites a 2001 survey of about 11,000 American college students that found 4 per cent had used prescription stimulants illegally in the prior year. But at some colleges, the figure was as high as 25 per cent. "

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."

Bush White House boosting religion's role in medicine

With a little over a month left in his US presidency, George Bush is pushing through measures to boost the right of doctors to refuse to provide medical treatments that violate their own religious beliefs.

Called the "right of conscience" rule, it would allow medical facilities, doctors, nurses, pharmacists and other healthcare workers to refuse to participate in any procedure they find morally objectionable, including abortion and possibly even artificial insemination and birth control.

Even staff members whose job it is to clean the instruments would have the right to refuse.

The new rules would expand on current laws allowing doctors and nurses to refuse to perform an abortion by allowing them to refuse to even provide information on where to get one.

The move sets the stage for a showdown over abortion early in the Barack Obama administration, set to begin with his inauguration on Jan. 20. During the campaign, Obama sought to find middle ground on the issue.

Cecile Richards, president of Planned Parenthood, slammed the Bush While House move.

"It's unconscionable that the Bush administration, while promising a smooth transition, would take a final opportunity to politicize women's health."

The right of doctors to refuse treatment has also been controversial on this side of the border, with the Ontario Medical Association challenging the Ontario College of Physicians and Surgeons over the issue.