Summer in Haiti an inspiration

My name is Dave Campbell. I am a second-year medical student at the University of Calgary. I am doing my six week summer elective in Haiti.  Rather than doing a clinical observership for the entire time, I have decided to spend the first four weeks doing a research project. Under the supervision of Dr. Wilfreda Thurston (Community Health Sciences), I designed a study entitled ‘Patient Perspectives of a New Prosthetics Provision Service in Rural Haiti’. Prior to entering medical school I obtained a Masters degree in Medical Anthropology and I also speak Haitian-Creole fluently.

Following the earthquake on January 12th, a group of American philanthropists as well as the philanthropic arm of the largest prosthetics provider in the United States (Hanger Prosthetics and Orthotics) joined together with Hôspital Albert Schweitzer (HAS) to form the Haitian Amputee Coalition for Prosthetics and Rehabilitation (HACPR).This body functions out of a building on the HAS campus in the rural community of Deschapelles in the L’Artibonite valley. It is unique among the eight prosthetics providers in the country in that it provides inpatient rehab services. When patients come here to receive their limb, they stay on a small compound about a mile from the hospital and go to the rehab centre everyday during their stay.

My study is important in that it provides local feedback to the program directors that are now at a decision point for the future of the project. I am conducting interviews and focus groups with prospective and retrospective users of the service. I am also utilizing participant observation as a means of collecting ethnographic data with the current patients.

I live at Escale, the amputee village, and follow patients to the clinic most days and spend a lot of time with them in order to be seen as an insider and this has allowed me to observe their natural interactions in a way that would not be possible through more traditional data gathering methods.

The past two and a half weeks have been wonderful! As much as I love to study medicine, it’s hard to beat a life where my life is to talk to people who I respect incredibly.

I would just like to tell the stories of a couple of the people that I have had the chance to live with for the past few weeks because they are inspiring and show the strength of the Haitian people. I have used pseudonyms to protect their identity.

Magda arrived here around the same time that I did. She is a middle-aged woman who is a below-knee amputee from an injury sustained in the earthquake. She always has such a wonderful demeanor about her, she is a very positive person and is truly a strength to her peers both during therapy sessions and just during the day-to-day lows that many people experience.

I knew her for 10 days before she really told me her story. One night she opened up about herself. She was in the market selling her wares during the earthquake. A pole fell and crushed her leg. Unfortunately at her home, not too far away, the situation was worse. Her husband was there with her two sons. Her husband and one of her children died, and the other boy had his hand amputated. Here is a woman who was quite poor to begin with who has now lost her leg, her business, her home, and most of her family–yet even with the extensive interactions I had had with her, you would never have guessed that this was the case. While she did tear up while telling me the story of her experience with January 12th, that was the only time I ever saw her without a huge smile on her face.

Magda was discharged from the program last Thursday. I thought of Magda today because I saw her earlier when she came in for a follow-up appointment–she was walking much better on her prosthetic limb and didn’t even bring her crutches with her for the appointment. The therapists were astounded by her progress in the past week while being away from formal rehabilitation. She said that she has to learn to walk again so that she can go back to selling her wares to support her and her son. She knows he is going to have difficulty being able to work in manual labour (which comprises the vast majority of jobs here), and wants him to go to university to get a good job. She realizes that without an advanced education, someone with a handicap such as his would struggle to get by in this environment.

I never cease to be amazed at the courage and resilience of the Haitian people, and I said that even prior to the earthquake. The citizens of this country have never had it easy and it is truly impressive to see how they deal with their enormous challenges with faith and hope for the future.

Categories: Uncategorized

“Canada’s First Embryo Donation Service”: The Unregulated Business of Creating Children for Separation from their Families

The Saturday, April 3 edition of the Globe and Mail gave front-page coverage to the announcement that Canada’s “first embryo donation service” will open for business.  A Hamilton, Ontario enterprise proposes to charge prospective parents $13,500 for connecting them with people who have ‘left over embryos’ in the freezer.  The Executive Director says, “We are not there to make a whack of money off this.  It’s not about making money.”

Trading in the origins of human life, this enterprise appears unimpeded in pursuing its goals.  But enterprises that risk causing significant negative effects on stakeholder groups and society at large must typically obtain regulatory approval before embarking on a new scheme.  For example, a company would need to demonstrate before a public body how it would satisfactorily mitigate any harmful effects before engaging in an oilsands project.

By contrast, this Hamilton enterprise has decided to do as it wishes and apparently there is no one to stop it or, at least, to slow it down by asking difficult questions.

The questions are many: What evidence currently exists that the deliberate creation of children to separate them from their genetic families is good for children?  How does the Hamilton agency propose to collect data on the psychosocial outcomes for children of what is, in fact, an experiment?  And why should we accept the organization’s claim that infant adoption and embryo donation are morally equivalent?

They are not morally equivalent.

Adoption usually occurs when pregnancy is unintended.  It aims to minimize the harm of a sad situation – that the genetic mother cannot rear her own child.  Adoption is usually a last resort for the mother who surrenders her child to the care of others.

By contrast, the Hamilton outfit plans to initiate a pregnancy with the very purpose of separating the child from its genetic parents and full siblings who are its family.  The purpose isn’t to find a good home for a baby; the goal is to create a baby for a home – a home in which the child’s genetic parents and siblings will not live.

Demand for babies to adopt is high and supply is low.  Adoption agencies may have less work than they are able to perform.  So embryos in the freezers of the nation create a new opportunity.  As a surrogacy broker once said, “I saw a demand and I knew I could fill it.”

Thus the Hamilton outfit has announced that it will experiment on the health and wellbeing of children; and this announcement has received free, national publicity.

Where are the voices of donor-conceived persons, one of whom has lamented that she went from being a bundle of joy to a person of sorrow?  Why do we not hear from these adults first about the effects on them of being conceived for separation from their kin?

Of course, the Hamilton agency has said that the prospective parents must permit an open relationship with the biological parents because it is “crucial” that “children must know their genetic origins.”

But this assertion seems disingenuous.  If knowing your genetic origins is crucial, then why deliberately rupture the genetic and social aspects of parenting?  Moreover, who would be in a position effectively to advocate for the child?  The rearing parents would have no legal obligation even to tell the child about its unusual conception or that it has a genetic family elsewhere.

Canada has affirmed that every child has a right, as far as possible, “to know and be cared for by his or her parents.”  Canada has agreed to respect the right of the child “to preserve his or her identity, including nationality, name and family relations as recognized by law without unlawful interference.”  Where children are illegally deprived of some or all elements of their identity, Canada has promised to “provide appropriate assistance and protection, with a view to re-establishing speedily his or her identity.”

Canada is not doing much of that right now.  The federal Assisted Human Reproductive Agency appears paralyzed as it awaits the Supreme Court decision on the constitutionality of major portions of statute under which it was created.  Likewise, Parliament seems reluctant to begin its review of the Assisted Human Reproduction Act, a statutory duty it has had for more than one year.  Such a review should, at minimum, cause Parliament to reverse its current acceptance of donor anonymity and the possibility that the donor-conceived might not ever learn the truth about their origins.  After all, Parliament has recognized and declared that the health and wellbeing of children is the highest priority.

So, for Canadian regulation, one might need to look elsewhere – to the professional organizations that govern physicians.  Provincial colleges of physicians and surgeons have ethics codes that require physicians to consider the wellbeing of society in matters affecting health, and to refuse to participate in or support practices that violate basic human rights.

Indeed, the Canadian Medical Association has expressed concern about assisted reproductive practices given that they aim to create children.  It has stated unequivocally:  “The Association believes that a child is entitled to the same respect and to the same treatment as all other people.  It, therefore, wishes to go on record as maintaining that if developments in the domain of reproductive technology cannot sustain such a perspective, if these developments reduce the child to the status of an object, or if they require that those who are involved adopt an instrumentalistic outlook toward children, the Association opposes such developments fundamentally and unalterably.”

The Hamilton agency’s announcement is certainly news but it is doubtful that it is good news.  Why should we applaud yet another means by which children are created to be reared apart from one or both of their genetic parents?

These children grow up to be adults.  Such adults (including some of the undersigned) already exist.  Many are asking how anyone could have let this happen.

Juliet Guichon is Senior Associate in the Office of Medical Bioethics, and Ian Mitchell is Professor of Paediatrics in the Faculty of Medicine University of Calgary.  Michelle Giroux is Associate Professor in the Civil Law Section, University of Ottawa.  Olivia Pratten, a Toronto journalist; Barry Stevens, a Toronto filmmaker; and David Gollancz, a solicitor in London, England are all donor-conceived persons and members of the International Donor Offspring Alliance.

Categories: Opinions

Save your brain – wear a helmet!

My head hit the pavement last week.  Biking to work, I turned in the gravel on the side of the road and the bike went out from under me in an instant while I went flying to the  sidewalk landing literally on my head;  or more precisely on my helmet.   I am black and blue this week but not even a headache from my collision with the concrete.

As a family doctor, I have heard all the arguments but still can’t fathom why anyone would not wear a helmet when riding a bike or roller blading.  Since my fall, I have been very aware of the number of cyclists I see in Calgary who do not wear a helmet; young, old, male, female.  Few on roller blades wear appropriate protective gear.   The paths I ride on are busy.   The pavement is not always even.  There are geese, dogs, children and squirrels.  There is gravel.

Working in the office and in emergency over the years I have seen many injuries from cycling and roller blading mishaps.  We all think it won’t happen to us but we would be wrong.    The greatest risk is in not protecting our brain – the simple two second act of donning a helmet can be lifesaving.  Many argue this is a matter of personal choice; the risk is theirs and the consequences are theirs.

As a family physician who has cared for brain injured patients I can tell you it is not just the patient that suffers – it is also the family and loved ones, coworkers and employers, friends and more.    It is all of us that pays – for the prolonged care, the multiple visits, the lost access for others, the tests, and treatments, services and specialist care.  We have limited healthcare resources – we cannot afford to pay for care that is preventable.  Save your brain – wear a helmet.  Let’s be vocal and make a difference.  We can’t afford not to!

Dr. Cathy MacLean,
Head, Family Medicine Department
University of Calgary, Faculty of Medicine

Categories: News, Opinions

Body World’s exhibit an incredible learning tool

I have taught the anatomical sciences for nearly three decades, introducing the intricacies of human and animal form to thousands of young people. In the dissecting lab, I constantly witness awe and appreciation from students who recognize that it is an honour to be allowed such an intimate glimpse of the body’s inner workings. Gunther von Hagens invented the technique of plastination because he was an anatomist looking for a better way to present specimens for students’ appreciation. The fact that the development of this technique, which is used by the faculties of medicine and veterinary medicine at the University of Calgary, has led to popular exhibitions demonstrates the fascination with witnessing the details of the human form presented in a realistic format. Unfortunately, the commercial success of the von Hagens exhibits has spawned imitators who may not be as scrupulous (and certainly not as high quality). I urge the public to move beyond morbid hysteria and culturally driven bias and appreciate what the gracious individuals who donated their remains for this purpose intended — the wonder of the exhibition — as natural as any national park, and no less an adventure.

John Bertram, Calgary

John Bertram is director of the body donation program an the University of Calgary Faculty of Medicine.

Categories: News, Opinions

“Baby by Stealth” covers only one side of complex argument

March 23, 2010 6 comments

In her front-page National Post article, “Baby by Stealth”, journalist Kathyrn Blaze Carlson, suggests that a Canadian statute is causing Canadians to break the law. Quoting some professionals whose income is derived at least in part from assisted human reproduction, Carlson writes that the Assisted Human Reproduction Act is “forcing a slew of prospective parents underground”.

The article suggests that Parliament is wrong to treat people who just want to be a mom or a dad like criminals. But the one-sided argument hardly helps advance debate on this complex issue.

Regulating human reproduction in Canada has not been easy, especially for politicians who face re–election by citizens who can disagree fundamentally on reproductive matters.

Not surprisingly, every Canadian effort at regulation has been controversial. The Ontario Law Reform Commission bravely tackled the matter in 1982. But that all-male body recommended that “surrogacy” deals be enforced, even by taking a breast-feeding infant from its mother.

Canadian women reacted by lobbying for the federal Royal Commission on New Reproductive Technologies. It reported in 1993, after spending $28 million hearing from individuals and groups throughout the country and commissioning volumes of original academic research.

Despite the cost and the effort, it would be eleven years before Canada’s Parliament enacted the Assisted Human Reproduction Act.

And then in June 2008, the Quebec Court of Appeal decided that Parliament acted unconstitutionally regarding many statutory provisions because they concerned health – a matter within provincial jurisdiction. The Federal Government appealed to the Supreme Court, whose decision we await.

Meanwhile, the Federal Government has, since January 2009, had a duty to review the existing statute. It is unclear whether Prime Minister Harper’s government has even commenced the statutorily-required task.

This history can perhaps unite all Canadians in agreement on two points: it is difficult to pass legislation in a federation about matters as sensitive as whether people can buy semen, ova and embryos; and some Canadians are bound to feel badly treated by everyone’s best efforts to regulate assisted human reproduction.

So maybe we should not ask, “How can we make everyone happy?” but rather, “Whom should we worry about the most?”  Parliament admirably answered this question in 2004 when it recognized and declared that, “the health and well-being of children born through the application of assisted human reproductive technologies must be given priority in all decisions respecting their use”.

So what are the health and well-being interests of the children? Some reproductive technology providers say, “The children should be grateful to be alive.” In other words, they believe that the children’s interests are in being born and the consequences of the methods are irrelevant.

But many disagree. Some people conceived by third party gametes say that not knowing half of their identity creates a significant loss. Many claim that not only must they grieve this loss; they must defend the legitimacy of their grief – a double blow.

Some donor-conceived people compare themselves to adoptees whose loss is recognized. Adoptees are encouraged to seek their birth parents and are aided by government registries in their search. By contrast, parents who use third party gametes need not tell children the truth about their conceptions. Nor is anyone who knows the identity of the genetic parent required to disclose this fact to the child, even when the child becomes an adult.

Whilst the donor-conceived and adoptees arguably suffer similar losses in being separated from their genetic parents, adoptees can find resolution of the loss in the knowledge that the decision to surrender them for adoption was arrived at with great emotional difficulty, as a last resort. The donor-conceived, however, can find it much harder to find resolution of this deliberate separation of genetic and social parenting.

The donor-conceived can believe that their genetic parents were only interested in money, and gave no real thought to the children they were helping to create. They can be devastated by the full import of what their genetic parents did – that their parents were motivated by the money. A condition of the sale can be the promise of anonymity, but the donor-conceived can be severely affected by their inability to meet their genetic parents or even know their names.

Curiously, the National Post article seems to lament, “We see donors who originally thought they didn’t want to be very involved, but who then want increased involvement after the child is born.” How is parental involvement with his or her child a bad thing, even if it is inconvenient for the rearing parents? Children are usually glad to know and to develop a relationship with their genetic parents.

Parliament’s decision to ban the sale of semen, ova and embryos is bound not to make everyone happy. But insofar as it attempted to protect human reproduction from becoming a commercial enterprise, its motivation is honourable.

In the reproductive technology business, some people claim that adults have a right to have a child no matter what the cost. Parliament and Canadian legislatures have a moral duty to investigate the costs to prospective children and to take steps to reduce them.

When regulating assisted human reproduction, the health and well-being of children and prospective children must be given priority, even if commercial or other adult interests might incidentally be thwarted.

Dr. Juliet Guichon is Senior Associate in the Office of Medical Bioethics and a faculty member of the Department of Community Health Sciences in the University of Calgary Faculty of Medicine.

The coming cancer crunch

By Dr. Peter Craighead
For The Calgary Herald — March 18, 2010

Publicly funded health care is only sustainable by focusing on and providing what is needed by its constituents.

During the boom years, many Albertans and their health-care leaders assumed we could ask for whatever we wanted. The truth is that Alberta’s health-care system now is forced to balance the needs of our public against the wants of its health-care leaders, whether this is in the provision of surgical services for joint replacement, caring for stroke patients or funding expensive cancer treatment.

The Rolling Stones aptly describe this in their song: “You can’t always get what you want, but if you try sometime you just might find, you get what you need.” The recent flurry of discussions around a new cancer centre in Calgary forces us to ask whether this is a need or a want.

Almost one in two Albertans will develop cancer in their lifetime, and one in four will die from this disease. Another way of looking at this is to realize that there were 14,500 new cancer cases diagnosed in 2009, and there are an estimated 80,000 people living with cancer in our province. About 85 per cent of these cancer patients will be seen and treated at cancer centres around the province. The Tom Baker Cancer Centre in Calgary is one of two major centres in the province, currently sees 150,000 patient visits annually and is the major referral centre for cancer care in southern Alberta.

So what is it that Albertans need when it comes to cancer care, and how has the system responded to this? Albertans with cancer need to receive state-of-the-art treatments in a timely, respectful manner; they should have access to care as close to home as possible; and they should not suffer pain or emotional distress. We also believe that Albertans should have access to prevention strategies that reduce the incidence of cancer and screening that finds the disease at an early, curable stage.

Until the second half of the last decade, Alberta’s health system responded well to these needs. For example, by the early 2000s the province had built up a network of facilities across the province, was highly responsive to cancer drug treatment requests and supported the purchase of expensive radiotherapy equipment in Edmonton and Calgary. Alberta was considered one of the best places to receive cancer treatment, and the place to work if you were a cancer specialist. This was evidenced by the successful recruitment of medical specialists, researchers, nurses and other professionals.

The rapid growth of Alberta’s population, continued increase in cancer numbers, success in recruitment and the change in our health system have all contributed to a growing capacity problem for us. Facilities in Edmonton and Calgary have outstripped their space, leading to a significant impact on patient experience. Cancer care has worked with the province to identify solutions, including the distribution of radiotherapy to smaller cities, plans to expand buildings in Edmonton and Calgary, and using leased space to tide us over for the medium term. We are also improving efficiencies within our centres to increase patient throughput.

The TBCC responded by moving some functions off site, because there was no available expansion space at Foothills Hospital. Since 2003, we have completed two phases of renovations in leased space at the Holy Cross Hospital, and the space we are currently renovating will allow us to expand treatment facilities at the Tom Baker site, so we can sustain our comprehensive service to cancer patients for southern Alberta for at least another three years. A few years ago, we also relocated many of the day procedures that we previously performed within the TBCC to the Foothills, but it is apparent that the rest of the system has minimal capacity to accommodate any further growth. Finally, we are in discussion with South Health Campus planners to see whether that space will provide us options for dealing with our space crunch in the medium term.

How have these decisions affected patient experience in Calgary? As I write this, patients experience serious overcrowding in our facilities, are made to travel between sites for various parts of their clinical care and some of them have excessive wait times to get in to see oncologists.

Fortunately, the wait times for treatment other than surgery continue to fall within our guidelines of two weeks for chemotherapy and eight weeks for radiotherapy. But the fragmentation of services into two sites means patients cannot take advantage of all services at one time. A further complication of providing clinical services across the city is that our clinical staff becomes less efficient by having to include transit times into their day. Simply put, distributing the services of one cancer centre within a city provides a suboptimal patient experience compared with full-service cancer centres.

Predictions tell us that by 2013, when the breathing room provided by Holy Cross will have been exhausted, we can expect to be seeing six to eight per cent more new cases, and to be treating 10 per cent more patients. Although the opening of Lethbridge radiotherapy facilities will help us deal especially with radiotherapy referrals, and the increase in throughput initiatives will gain some efficiencies in chemotherapy treatments, it is predicted that we will be facing severe shortages in Calgary by 2013. Given the budgetary pressures facing Alberta Health Services, it will take significant focus on our part to see a co-ordinated strategy for cancer in the next 12 months. The short-and medium-term solutions we have employed have allowed us to provide excellent care, albeit of a somewhat fragmented nature.

AHS has made efforts to respond to cancer patients’ needs in the short term, but we now must challenge ourselves to move away from a “building the new system” mode into focusing on how to address the longer-term needs of patients, including the particular needs of cancer patients in Calgary.

As a medical leader within AHS Cancer Care, I am ready to support any planning process that ensures that future patients in Calgary are provided a superior experience, and that we are able to address their need to receive timely, quality care.

Peter Craighead, MD FRCPC, is senior radiation oncologist and director of the Tom Baker Cancer Centre.

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Fatal Lobby

Re: “Ottawa ‘has gone too far’ on flavoured smokes ban,” Feb. 20.

I was dismayed to read about the federal government being pressured to rescind the ban on flavoured tobacco by congressmen from Indiana, Kentucky and Virginia. Tobacco is the leading preventable cause of heart disease, stroke, emphysema and cancer, the four leading causes of death in Canada and the U.S. I am a specialist in lung diseases and see the devastating effects of the tobacco epidemic daily.

Most people think tobacco-related diseases are primarily diseases of the elderly, but young people are also affected. One of my saddest memories was my last visit to a 38-year-old patient dying from lung cancer who was reading a pamphlet titled, How To Tell Your Young Children That You Are Dying. She had started smoking in junior high with friends and was unable to quit. Flavoured tobacco, not just the candy-flavoured types, but those blended to reduce the harshness of some tobaccos only have one purpose — to hook young people.

Once people are hooked, they will smoke anything to get their nicotine fix. These politicians are beholden to the tobacco industry and its lobby and don’t focus enough on the devastating effect tobacco has on Canadians and their families. Nor do they care about its huge costs to our healthcare system.

Non-smokers are also hurt by tobacco’s health consequences. A doctor’s office or a hospital bed used by a smoker only delays access to, and increases wait times for, non-smokers when they need health care.

Stephen Field, MD, Calgary Stephen Field is a clinical professor of medicine at the University of Calgary medical school

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