The war on Ebola is creating heroes. The media have focused on Kenema Government Hospital (KGH) in Sierra Leone, where the country’s first case was diagnosed. More than two dozen of its doctors, nurses and support staff have been infected and died. Science, one of the world’s leading journals, published an early online paper on the Ebola virus on Thursday. Six of the authors are already dead, five from Ebola, all from KGH.
The New York Times highlighted the work of Josephine Finda Sellu, the 42-year-old deputy nurse matron, a brisk, cheerful and courageous woman. “There is a need for me to be around,” she told the New York Times. “I am a senior. All the junior nurses look up to me.” If she left, she said, “the whole thing would collapse.”
“There are times when I say, ‘Oh my God, I should have chosen secretarial,’ ” she says. But nursing “is the calling of God.” The Times describes the difficult and dangerous work of those who continue to serve:
“… the front line is stitched together by people like Ms. Sellu: doctors and nurses who give their lives to treat patients who will probably die; janitors who clean up lethal pools of vomit and waste so that beleaguered health centers can stay open; drivers who venture into villages overcome by illness to retrieve patients; body handlers charged with the dangerous task of keeping highly infectious corpses from sickening others.
“Their sacrifices are evident from the statistics alone. At least 129 health workers have died fighting the disease, according to the World Health Organization. But while many workers have fled, leaving already shaky health systems in shambles, many new recruits have signed up willingly — often for little or no pay, and sometimes giving up their homes, communities and even families in the process.”
The United Nations System Coordinator on Ebola, David Nabarro, says that people fighting the virus – healthcare workers and survivors – are to be commended:
“People who are battling Ebola virus disease are courageous people. People who are supporting them are courageous people. This courage is extraordinary. When I hear and see that people have survived Ebola virus disease, I see them as people who not only have demonstrated huge courage but also who have massive potential. Increasingly, these people are volunteering to serve to support the treatment of others who are actually still infected with the virus. Increasingly, they are becoming ambassadors for the community of people who are at risk of Ebola virus disease.”
A Dutch euthanasia clinic is being investigated for helping an elderly woman to die because she did not want to live in a nursing home. This is the second time in four months that the Levenseindekliniek (End of Life Clinic) in The Hague has been reprimanded.
Even in the Netherlands, where euthanasia has been legal since 2002, the clinic is controversial. It was set up to cater for patients whose own doctors refused to perform euthanasia and is financed by private health insurance. (Click here for the Leveneindekliniek FAQ.) In the two years after it opened in March 2013, 322 people were killed there.
The official euthanasia monitoring committee says that the clinic had not observed the formal guidelines for euthanasia. In the latest case, a woman in her 80s had been partially paralysed after a stroke. Twenty years ago she declared that she did not want to live in a nursing home, a position she reaffirmed 18 months ago.
However, in order to qualify for euthanasia in the Netherlands, a patient must be ‘suffering unbearably’. The clinic’s doctors decided that this was the case, based on some of her gestures and her repeated use of the words ‘kan niet’ (a common Dutch expression meaning more or less ‘no way’) which they interpreted as ‘I can’t go on any longer like this’.
The commission disagreed. ‘The doctor has based his decision solely on the fact that the patient was in a nursing home,’ says its report. In fact, she seemed relatively happy there.
The clinic says on its website that it stands by its decision to euthanase the woman. ‘If we only have one percent doubt about a euthanasia request, we will not go ahead,’ says its director Steven Pleiter.
The authorities are studying whether to proceed with a prosecution – something which apparently has not happened since euthanasia was legalised. Euthanasia has many supporters in the Netherlands. This week the Dutch Right to Die Association, NVVE, announced that it has signed up its 150,000th member.
An Australian couple has copped a media bashing over their alleged abandonment of a Down syndrome twin born to a Thai surrogate mother. But with the enormous publicity given to the case, similar cases are beginning to emerge elsewhere. Aussies are not the only “heartless bastards” in the world of surrogacy.
In the UK, the tabloid press described the case of Amy, a child with congenital myotonic dystrophy, a rare inherited condition which causes babies to be “floppy” and developmentally delayed. She was the twin of a healthy boy. Both were born to “Jenny”, a British woman who had entered into a non-legally-binding contract with a couple.
But when the commissioning woman learned about Amy’s disability, she refused to take her. She told Jenny over the phone: “She’d be a ****ing dribbling cabbage! Who would want to adopt her? No one would want to adopt a disabled child”. She took the healthy boy.
In fact, Jenny – who is legally the mother under British law – has effectively adopted her and is raising her with her partner and their other children. She says: ‘Amy is 100 per cent our daughter. I love her as much as my other children.’
And in the United States, a lesbian couple, Keston and Andrea Ott-Dahl, have related their own story of a Down syndrome baby. Andrea agreed to become a surrogate for friends, a lesbian couple who were using sperm from a gay friend. However when tests showed that the baby had Down syndrome, her friends, Silicon Valley executives, asked Andrea to abort it.
She was reluctant to agree, as she had had a bad experience after a previous abortion. She describes the day when she and Keston decided to keep the baby and raise it with their other two children as “the happiest day of my life”. Some legal complications ensued, as the commissioning couple initially attempted to enforce an abortion clause in their contract.
Their daughter Delaney is now a year old and thriving. Keston has even written a book, "Delaney Skye: How One Formerly Ableist Lesbian Mother Opened Her Eyes When The Baby She And Her Partner Created Under A Surrogacy For Friends Is Diagnosed With Down syndrome" and is blogging about their experience.
In the wake of the recent Thai surrogacy scandals, commentators are debating how the practice of surrogacy should be reformed.
Many say that we should make commercial surrogacy legal in Western countries. In Australia, researchers from Surrogacy Australia, the Canberra Fertility Centre and Monash University are campaigning for compensation for Australia surrogates.
Fertility specialist Dr. Martyn Stafford-Bell says that overseas surrogacy arrangements expose both surrogates and babies to serious health risks. “Such adverse outcomes could be avoided if access to surrogacy was facilitated within Australia”, he commented in a recent interview. Australian Surrogacy lawyer Stephen Page agrees:
“The reality is if Australians are going in such great numbers to developing countries, such as India and Thailand, with the possibility of exploitation, sure it’s much better to have it here, where it can be regulated”.
But others are questioning the very practice of commercial surrogacy. Feminist Renate Klein sees it as “heartless, exploitative, capitalist enterprise”. Writing in the Canberra Times, Dr. Klein argued that we should get rid of commercial surrogacy all together:
“There is no right to a child; children are not commodities, and surrogates are not just "suitcases" or "angels" (depending on your point of view) … Introducing commercial surrogacy in Australia is not the answer. Reducing demand for all types of surrogacy is.”
The debate surrounding Canada’s marijuana laws has intensified, with the president of the Canadian Medical Association (CMA) labeling medicinal marijuana “bad medicine”.
Dr. Louis Hugo Francescutti is skeptical about the benefits of the controversial treatment. He voiced his concerns at the CMA’s annual meeting in Ottawa on the 18th of August: “It’s just plain bad medicine to prescribe a product when we don’t know how it works, we don’t know when it works, who it works for, how it interacts or how much to prescribe….”.
Under current Canadian law, patients wishing to purchase medicinal marijuana need to obtain a prescription from a doctor. Many doctors are unsure about the treatment and hence reluctant to issue a prescription.
Dr. Francescutti is concerned about the effect of current legislation on doctor-patient relations: “It puts physicians in a very awkward situation and it strains the physician-patient relationship”.
Debate about the legalization of marijuana has become a central issue in the run up to the expected 2015 Canada federal elections. The Liberal Party supports a change in the law on the grounds that it would make it easier to control the drug and take power out of the hands of organized crime.
As details continue to emerge of Jimmy Savile’s horrific crimes, a bioethicist is questioning the complicity of healthcare workers in allowing for the abuses. Writing in the journal Bioethics, Professor Ruth Chadwick inveighs those who gave Savile access to vulnerable patients:
“Even if wrongdoing was not suspected, however, (and even the parents of abused individuals did not believe them, in the case of some celebrities who have now been exposed), patients should have a right to protection from the intrusion of non-healthcare personnel.”
When Savile died in 2011, he was fondly remembered as one of Britain's best-loved entertainers. For half a century he had been a slightly eccentric, but popular DJ, media personality and charity fund-raiser. Not long afterwards, however, allegations of sexual abuse began to emerge. It turns out that the manipulative Savile had used his position to rape and molest hundreds of people, mostly young girls. He even molested young patients in hospitals.
Chadwick suggests that the aura of Savile’s celebrity impaired the judgement of hospital staff:
“The whole sorry episode suggests a need to pay attention to something I have touched on before in editorials, the question of what people ‘see’. Do we have here a case of knowingly turning a blind eye, or simply not seeing what is in front of one?”
Her solution for the issue, however, may raise more eyebrows than her diagnosis. She suggests that research into biological ways of shielding people against star power:
“At a time when there is much discussion of moral enhancement, it may be pertinent and pressing to address specifically what strategies might be most effective in addressing the apparent power of celebrity to undermine moral judgment.”
The academic conversation over brain death continues, with the American journal of Bioethics publishing a special issue on the status of death determined by neurological criteria (DDNC).
The issue contains 20 articles offering different perspectives brain death. Most of the papers refer a recent legal battle in Texas over Marlise Munoz, a brain dead woman carrying a second trimester foetus.
The papers are highly technical and difficult to summarize in a short post. There are, however, a number of clear themes:
Doctors who failed to raise concerns about colleagues could be struck off, under new guidance being considered by the UK’s General Medical Council (GMC).
The GMC has launched a public consultation on the proposed changes. Current guidance for the fitness to practice panels of the Medical Practioner Tribunal Service (MPTS) states “it may be appropriate to remove a doctor from the medical register when their behaviour is fundamentally incompatible with being a doctor.”
The proposed changes would augment the MPTS’s scope for disciplinary action. New scenarios covered include cases where a doctor has “failed to raise concerns where there is a reason to believe a colleague’s fitness to practice is impaired” and cases where a doctor has failed to raise concerns “where a patient is not receiving basic care to meet their needs”.
The MPTS will also impose more serious sanctions where doctors have “used their professional position to pursue a sexual or improper emotional relationship with a patient or someone close to them” and where doctors have failed to work collaboratively, “including bullying, sexual harassment, or violence or risk to patient safety.”
Commenting on the proposed changes, Niall Dickson, the GMC’s chief executive, said, “The guidance on which we are consulting is vital for case examiners and the independent panels who decide on the sanctions doctors should face, both to protect patients and uphold the reputation of the profession”.
Germans and British make up the bulk of the numbers, with neurological conditions, such paralysis, motor neurone disease, Parkinson’s, and multiple sclerosis, accounting for almost half of the cases, the findings show.
611 non-residents had been helped to die between 2008 and 2012, all but four of whom had gone to Dignitas. Their ages ranged from 23 to 97, with the average being 69; over half (58.5%) of the ‘tourists’ were women, who were 40% more likely to choose assisted suicide in Switzerland than men.
In all, residents from 31 different countries were helped to die in Switzerland between 2008 and 2012, with German (268) and UK (126) nationals making up almost two thirds of the total. Other countries in the top 10 included France (66), Italy (44), USA (21), Austria (14), Canada (12), Spain and Israel (each with 8). Overall, the numbers of people being helped to die in Switzerland doubled between 2009 and 2012.
Virtually all the deaths were caused by taking sodium pentobarbital. Four people inhaled helium—deaths which were widely publicised and described as “excruciating,” and possibly responsible for the dip in numbers of suicide tourists to Switzerland between 2008 and 2009, say the researchers.
Around one in three people had more than one condition, but neurological conditions accounted for almost half of the total cases, followed by cancer and rheumatic diseases.
The researchers suggest that the phenomenon of suicide tourism, which is unique to Switzerland, has prompted legislative changes and/or serious debate in Germany, the UK, and France—the principal sources of this type of tourism.
But Dr Charles Foster, of Green Templeton College at the University of Oxford is not convinced that this is the case in the UK. In an accompanying commentary, he argues that there are two possible connections between suicide tourism and policies surrounding assisted suicide in the UK.
“The first is the liberalisation of public opinion that comes naturally, if irrationally with familiarity,” he writes. “And the second is the slowly growing public acknowledgement that there is something intellectually, if not morally, uncomfortable, about getting another country to do your dirty work.”
How to deal with the Ebola outbreak in West Africa seems to be splitting bioethicists. Some applaud the World Health Organisation's recent decision to allow experimental drugs to be released "for compassionate use". For Arthur Caplan, of New York University Langone Medical Center, this seems to be the right decision:
"In a plague that kills 90% of its African victims complaints about unwarranted exploitative research seem a bit ridiculous even against a long history of misuse and abuse of poor desperate persons in poor African nations."
However, bioethicists Ezekiel Emanuel, of the University of Pennsylvania, and Annette Rid, of King's College London, want to be a bit more restrictive about "compassionate use" and believe that experimental drugs are not the main way to beat the disease. In an article in The Lancet, they write:
"Adoption of containment measures with a view to strengthen health systems and infrastructure is the most effective way to curb this epidemic and prevent future ones; it has positive externalities for health promotion and offers fair benefits to communities who engage in research in this outbreak. Experimental Ebola treatments or vaccines should only be deployed in clinical trials."
One reason for being restrictive is that untested drugs could actually be dangerous. They say:
"irrespective of hope, we need to be realistic. The distance between preclinical promise and clinical use is vast and littered with failed compounds. Only 10% of new molecular entities succeed from the point of preclinical candidate selection to commercial launch. Although promising in non-human primates, there is no reason to believe that the experimental Ebola interventions will be more successful. In other words, it is more likely than not that the interventions will not improve or save patients, and might even weaken them as they battle a life-threatening disease."
They also believe that lessons should be learned from the Ebola epidemic about how to strengthen health systems in these impoverished countries. In the long run, this is what will save lives:
"Although Ebola's rapid spread and high rate of mortality capture our attention, the disease needs to be put into perspective. Cumulatively in the past four decades, Ebola has claimed less than 3000 lives.By contrast, the death toll in sub-Saharan Africa was 547 322 from diarrhoeal diseases and 222 767 from pneumococcal pneumonia in 2010 alone; many of these deaths could have been prevented through access to basic health care, including cheap vaccines, and improved sanitation. Thus, strengthening of health systems and infrastructure will have positive externalities for health promotion after this epidemic subsides."