Zero-Sum Game? A Consideration Of Dependency Workers and Dependent Persons

Image: Carol Simpson
Image Credit: Carol Simpson

Recently, Craig Klugman wrote a thought-provoking blog entry over at bioethics.net on long-term care options for elderly persons.  While humane ones do exist that are designed for human flourishing, such as a new chain of purpose-designed communities where elderly folks have access to developing new skills in the visual and performing arts, these are often very expensive.

More often, facilities which provide in-patient nursing care still significantly “warehouse” their residents, providing medical care but treating the elderly as people waiting for death rather than persons who can still grow and learn and contribute. National Public Radio has an ongoing investigative news series called “Home or Nursing Home: America’s Empty Promise to Give the Elderly and Disabled A Choice.” In that series, NPR reporters chronicle many of the same kinds of difficulties Klugman discusses in his blog entry.  Long-term care facilities have notoriously high staff turnover rates, in part due to difficult working conditions but also due to low pay.  In-home careworkers are similarly poorly paid. 90% of these direct care workers are women, and earn an average of approximately $17,000/year. This is due in part to the fact that the federal law governing wage and overtime protections, the Fair Labor Standards Act (FLSA), explicitly does not cover home care workers. Even facility-based care workers receive very little pay.

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More on the Burka Avenger

Pakistani orphans watch an early screening of the first episode of the animate Burka Avenger Series, at an orphanage on the outskirts of Islamabad, Pakistan on March 25, 2013. (Muhammed Muheisen/AP)

Pakistani orphans watch an early screening of the first episode of the animate Burka Avenger Series, at an orphanage on the outskirts of Islamabad, Pakistan on March 25, 2013. (Muhammed Muheisen/AP)

The Ridiculous Burka Avenger Backlash
“Faiza S. Khan on why we should be praising the Pakistani cartoon superhero, not criticizing her clothing choices.”

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Suboptimal Breast-Feeding

In his July 11, 2014 Op-Ed piece in the New York Times, Nicholas Kristoff quotes The Lancet’s most recent nutritional survey as indicating that 804,000 children die annually from “suboptimal breast-feeding,” more than the WHO’s estimate of deaths from malaria.  Kristoff recounts taking a dying infant and its “teenage” mother to a hospital in Mopti, Mali.  After the doctor “repositioned [the mother’s] arm” and “helped the infant to latch on to her breast,” Kristoff reports, the “baby came alive.” The doctor, Amidou Traoré, states, “The mother doesn’t know how to breast-feed properly . . . We see lots of cases of child mortality like this.”  Later, Kristoff asks Shawn Baker, a public health expert, where he would invest a billion dollars if he had it. Baker replies, “To me, the next big win in saving kids’ lives is breast-feeding promotion. It’s absolutely unacceptable that more than 800,00 kids are dying annually of suboptimal breast-feeding.”

Image credit: New York Times

Image credit: Ben Solomon New York Times

As Kristoff notes, “predatory marketing by formula manufacturers” may be partly to blame, but the research he quotes suggests more intimate trauma. Even a young unprepared girl can figure out how to put her baby to her breast without the tutelage of a doctor and the World Health Organization. Women in Mali and elsewhere fed their babies long before the intervention of modern medicine.  Where are the mothers and midwives who would pass on their knowledge? Why does so young and unprepared a girl have this infant? Where is her village? Why is she all alone and dependent on the random kindness of a traveling Westerner? If this research and testimony is reliable, what physical and social traumas have caused this alienation from maternal practices and why aren’t these men focused on that violence, rather than reducing the problem to the absurd idea that a woman can’t figure out how to hold her baby without a man’s help?

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“Surrogacy” and Parental Licensing

Christine Overall insists that the well-being of children born of “surrogacy” arrangements should be of paramount importance and, most certainly, should take precedence over the wants of prospective parents. This commentary was initially posted on July 18, 2013 on the Impact Ethics blog and is reposted here with permission of the author. Visit impactethics.ca

“Surrogacy” is not illegal in Canada; paying or offering payment to a “surrogate” mother is. According to Section 6 (1) of the Assisted Human Reproduction Act (AHCR Act), “No person shall pay consideration to a female person to be a surrogate mother, offer to pay such consideration or advertise that it will be paid.” This prohibition notwithstanding, the plan is to permit reimbursement for legitimate (receipted) expenses. Section 12 (1) of the AHR Act stipulates, “No person shall, except in accordance with the regulations, … (c) reimburse a surrogate mother for an expenditure incurred by her in relation to her surrogacy.” As the relevant regulations have not been crafted, this exception to the legal prohibition is not yet in force. Meanwhile, there are many media reports of cases of paid and altruistic “surrogacy” in Canada (click here for more information).

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Burqua Avenger

BURQUA AVENGER

Image Credit: NYTimes

Image Credit: NYTimes

From the New York Times: “Subverting a traditional symbol of segregation and oppression or reinforcing it?”

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FAB in Mexico

A message from FAB Co-Coordinator Jackie Leach Scully:

Since 1996 the International Network on Feminist Approaches to Bioethics (FAB) has held a biannual World Congress, and next year sees us gathering in Mexico City from 22-24 June 2014. This runs immediately before the World Congress on Bioethics taking place in the same location from 25-28 June 2014.

Mexico City

These are (forgive the predictable but irresistible pun) FABulous occasions! Feminist bioethicists from all over the world meet to bring their varied perspectives and priorities to challenging topics in bioethics. From my own experience I can say that FAB Congresses are marked by an atmosphere of encouragement and inquiry, by their friendliness and lack of hierarchy, and by being particularly welcoming to early career researchers.

FAB Co-coordinator Hilde Lindemann and I are chairing the Congress planning committee, and we warmly invite you to submit proposals for papers and panels. More information on how to submit proposals can be found here: http://www.fabnet.org/congress_and_iab.html .The Congress theme is Health Care Ethics: Local, Global, Universal but submissions on any topic in feminist bioethics are welcome too.

FAB membership includes a subscription to the International Journal of Feminist Approaches to Bioethics (IJFAB)

We look forward to meeting you in Mexico City!

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FAB in Mexico

A message from FAB Co-Coordinator Jackie Leach Scully:

Since 1996 the International Network on Feminist Approaches to Bioethics (FAB) has held a biannual World Congress, and next year sees us gathering in Mexico City from 22-24 June 2014. This runs immediately before the World Congress on Bioethics taking place in the same location from 25-28 June 2014.

Mexico City

These are (forgive the predictable but irresistible pun) FABulous occasions! Feminist bioethicists from all over the world meet to bring their varied perspectives and priorities to challenging topics in bioethics. From my own experience I can say that FAB Congresses are marked by an atmosphere of encouragement and inquiry, by their friendliness and lack of hierarchy, and by being particularly welcoming to early career researchers.

FAB Co-coordinator Hilde Lindemann and I are chairing the Congress planning committee, and we warmly invite you to submit proposals for papers and panels. More information on how to submit proposals can be found here: http://www.fabnet.org/congress_and_iab.html .The Congress theme is Health Care Ethics: Local, Global, Universal but submissions on any topic in feminist bioethics are welcome too.

FAB membership includes a subscription to the International Journal of Feminist Approaches to Bioethics (IJFAB)

We look forward to meeting you in Mexico City!

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“We are Egg Donors”

This commentary was initially posted on July 11, 2013 on the Impact Ethics blog and is reposted here with permission of the author. Visit impactethics.ca

Claire Burns, Raquel Cool and Sierra Falter co-founded We Are Egg Donors, the world’s first self-advocacy group for egg donors, run by egg donors. Here, Claire tells her story and shares her opinions about the egg trade in Canada.

I sold my eggs in 2004, but started the process in 2003. I was 21 years old at the time. At first, I was able to talk openly with the clinic staff about compensation. But, when the Assisted Human Reproduction (AHR) Act was passed in early 2004, I was told that I could no longer speak about money with my liaisons at the clinic – they could get fired for even discussing it.

I ended up being paid under the table. A friend of mine met the intended recipient in the lobby of the clinic while I was upstairs having the eggs extracted. As arranged – like some espionage film or blind date – my friend wore a blue raincoat, the other woman had a red umbrella. As I was watching my eggs being sucked out of me on a TV monitor hanging above my head, my friend was handed a manila envelope with $4000 cash in 20 dollar bills. Thankfully, I suppose, there was some form of honour system in place. I sold her my eggs and she did indeed pay, but what recourse would I have had if she hadn’t paid?

While the AHR Act makes it illegal to purchase eggs, financial transactions like the one I was involved with do occur in Canada – they just happen in a clandestine way. In fact, I would argue that the AHR Act has contributed to the creation of a black market where both egg providers and recipients are at risk of being taken advantage of – both at home and abroad.

Canada is different from the United States where there are egg brokerages available for buyers and sellers. I didn’t have this experience – I communicated directly with the buyer via email (“sweetbabydreams21”) and (at least initially) with the clinic. Canadians are now being wooed to travel to the US to sell their eggs. A few weeks ago, a Toronto woman flying to Southern California to sell her eggs asked us what she should say to the border guards if asked about the purpose of her trip. She wanted to know the legal ramifications of selling her eggs across the border. Another Canadian woman had extreme adverse effects from the drugs she was taking. She spoke to the American broker about wanting to stop the process. The broker threatened that if she stopped she’d get no money. I find it troubling that the Canadian government is turning a blind eye to the fact that Canadian women are being medically and emotionally compromised in another country. Where is the accountability?

The fertility industry in Canada is mostly privatized. The doctors are paid, the nurses are paid, the other clinic staff are paid, and the pharmaceutical companies are paid.  The prospective parents are paying. Why, in this very monetized industry, should the woman who provides the eggs – the person who supplies the commodity without which the doctors, nurses and others could not provide the service for which they are paid – do this for free, especially when she is the one to bear any potential health consequences.

In my case, I didn’t react adversely to the drugs and had no complications post extraction. As for any long-term health effects, no one has ever checked up on me. I mean, honestly, is lupron even legal? About a year ago, I tried for a year-and-a-half to get pregnant and absolutely nothing took. I am scared that maybe my egg donation has contributed to me possibly being infertile.

Don’t get me wrong, I was a more-than-willing participant in the egg trade, but if I had known then what I know now – in terms of the non-existent medical research – I would not have gotten involved in this business. To me, the lack of care for the women who provide the eggs for someone else’s fertility treatment is the single most frightening aspect of the fertility industry. The second is that, for the most part, the prospective egg providers are not made aware of the fact that there is no after-care. If more women egg providers would speak up, “we are people, not merely vendors”, then these processes would have to change to account for our health considerations.

In closing, I want to say that I am really glad I sold my eggs. Somewhere out there, there is a nine-year-old boy named Alexander who might have my eyes. That’s amazing.

The problem is not with donating or selling eggs, the problem is with the system that manages the transactions. Egg providers should be empowered. They should know their rights – the right to ask for separate legal representation, the right to informed consent, as well as the right to proper medical follow-up and responsible medical care.

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Schools for Girls

In October 2012 the Taliban stopped her school bus and shot 15 year old Malala Yousafzai in the head for promoting education for girls in Pakistan.  The Taliban continue their violent campaign against schools for girls, destroying buildings and supplies, terrorizing teachers, and threatening girls and their families.

Malala Yousafzai Image credit: www.psmag.com

Malala Yousafzai
Image credit: www.psmag.com

On her 16th birthday Malala spoke at the UN, calling on world leaders to insure that every child everywhere has access to education. She announced the creation of the Malala Fund, a non-profit that will raise money to fund grants to support education for girls.

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Monitoring Mom

A recent article on the CBC website with the headline, Seniors Stay Home Longer in U.S. with Simple Fixes is apparently meant to point out to Canadians that our neighbors to the south are once again ahead of the game. Although Canadians pride themselves on the availability of health care, they always suffer, I believe, from technology-envy. As the article explains, simple monitoring devices developed by researchers at the University of Missouri can alert either a nurse or a loved one that the activities of their relative have changed. A restless night sleep can be detected by monitors on the bed; a change of gait by a Microsoft Kinect 3-D camera. The advantage of these devices is that unlike alert buttons, the devices do not need to be worn; they are like a spy gadgets that you use on your mother instead of Dr. Evil. What this means is that this change in external behavior might signal physical and medical issues that can be addressed before disaster strikes.

Obviously this technology is at this point out of reach of many seniors. The article does not mention that 15% of US seniors live below the poverty line and that the main source of income for a majority of retired Americans is social security which pays $1230 a month.

My point is that this article is praising technology but erasing the social dimensions of aging. Although technology is an important facet of everyone’s life and it has enhanced the quality of life of those who can afford it, articles such as this one fail to portray aging as a complex issue. The article starts off by stating that the technology could save children having to check up on Mom and Dad. Right there, this assumes that all aging individuals have children who are willing to check up them and that this checking is burdensome. If you do not need to check on your parent then why bother going to see them, right? Seniors are often isolated; can this technology make it worse?

Another concern is the increasing medicalization of aging. Your heart, the manner in which you sleep can all be monitored somewhere. Foucault would have field day with this one. We cannot forget that women as twice as likely to live alone than men (for women and men aged 65 and older this statistic is from Canada but it applies to the US). And women live longer. So women stand a good chance of being the object of this monitoring. All good intentions aside, the bodies of women continue to be under the gaze of the medical establishment.

Finally, the article does state, to the author’s credit, that the high-tech approach is less about watching than about being concerned. Still, if concern is medially based only, should we not worry about the fabric of society? Are we merely tied by medical concern? And does this technology enhance the quality of life of those monitored? What the high-tech trend is showing us is that technology is indeed a tool but a tool we have a tendency to think can replace human contact. Sure everyone is busy and worried. Knowing your mother’s bed is wired might be a relief. Knowing that the gait of your mother has changed might prompt you to go visit and convince her to go to the doctor. Is the technology going to mediate your encounter your parent? What will that look like?  And then, if there are no changes does it imply that you can go back to your busy life with a tranquil mind and forgo those burdensome visits? Social ties are important and technology should enhance such relationships. It can only do so if there is an acknowledgement of the importance of the time to be spent with one’s loved ones. This should be built into our system and it should not be a cost that a caregiver must assume. With or without technology, the cost of caring is a social one.

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Fracking Wastewater

Missing from this article is the additional tidbit that fracking waste also often contains radioactive particles. Who is most harmed by that, and the other known carcinogens in these liquids? The head of the EPA apparently has no qualms about exposing us to these substances? Who appointed him and why hasn’t he already been fired? I do think that it would be good for feminist bioethics to increase its attention to these kinds of issues.

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Looking at and Learning from SUPPORT’s Ethical Failures

I suppose that we should always be wary when the facts about an ethical dispute seem clear cut.  I say this because it strikes me that the vast majority of clinical medical ethical conflicts I have observed or read descriptions of tend to come down to misunderstanding or a lack of shared information.  For this reason, my first inclination when coming across an emergent issue in bioethics is to try to determine a) which facts are in dispute and b) where miscommunication may have occurred.  In situations as diverse as end-of-life care for Great Aunt Tillie to concerns about a NICU’s policies on perinates thinking about these two aspects have gone far in my experience in resolving disputes.

Thus it was with increasing confusion that I looked at the ethical concerns surrounding the Surfactant Positive Airway Pressure and Pulse Oximetry Trial (SUPPORT).  Here it did not seem that there were either facts in dispute or miscommunication between those seeing the study in very different lights.  (This of course is not to say that there was no miscommunication in the study itself; indeed this miscommunication strikes at the heart of the critique of the study.)  We all see what the study was and how the consent forms were written.  What we do not seem to agree on is how important the failings of those consent forms are.  This is not a miscommunication, but a difference in weighting of ethical standards.

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