Caregiver Stories: Cameron and Heather Von St. James and Mesothelioma

Cameron Von St. James is the husband of mesothelioma survivor Heather Von St. James. Cameron has written about his experiences in the past (including this piece in the Huffington Post) and works hard to spread the word about mesothelioma and cancer support generally. I have been wanting to share stories of patients and caregivers on this blog, so when Cameron contacted me about helping to spread the word, it seemed like a good opportunity to do so. Here is Cameron’s story:

My Life As My Wife’s Caregiver

Cam_Lil_HVSJ
The Von St. James Family

I’ve only talked with my wife Heather once about what I went through as her caregiver and with this article, I hope to share more. My wife Heather was diagnosed with pleural malignant mesothelioma at the age of 36, just three short months after giving birth to our daughter Lily. Heather was exposed to asbestos when she was a little girl. Her father worked in the construction business and would come home with his jacket covered in white dust. Unbeknownst to Heather, that jacket was covered in asbestos. It was her favorite jacket to put on to go outside in the cold South Dakota winters. Her favorite jacket would later become her worst nightmare.

Three months before Heather’s mesothelioma diagnosis, we celebrated the birth of our only child, Lily. We went from being fantastically happy to scared and uncertain. I remember the morning her doctor said the word “mesothelioma” for the first time. It was like our whole world came crashing down. We went from the excitement of having a new baby to a cancer diagnosis.

Immediately after the diagnosis rage consumed me, then came the frustration and devastating fear. At times, I couldn’t speak without cursing and swearing, but I understood I had to be strong for my wife and our daughter. I never wanted my wife to see my doubts. I needed to be her source of confidence and security.

There were numerous days when I felt so defeated having so much on my plate. I had to cope with everything, from my job and the constant traveling, to caring for our daughter and looking after our pets. I tried to focus on the most important tasks and I realized I needed to accept those offers from others. We were fortunate and I don’t know what I would have done without the people we call friends. Still, despite all of the help, at times I felt weighed down with obligations.

Just after her surgery in Boston, Heather went to South Dakota for a visit with her parents. She was recouping and getting ready for the next stage of treatment, chemotherapy and radiation. Our daughter also stayed there while I was working to support our family and trying to maintain our home. Two months passed and during this time I only saw Heather and Lily once. It became very difficult not being able to be with them during this difficult time. But, I needed to support them back at home while Heather was recovering.

One Friday after work, I drove all night in the middle of a snowstorm to be able to see them. I took only a short nap in the car while waiting for the plows to clear the roads. When I finally got there on Saturday morning I was exhausted. I spent the day and a few hours on Sunday morning with them before having to leave again. Then I drove the 11 hours back to our home in Roseville, Minnesota without stopping, to be at work on Monday morning.

It was hard being apart from my wife and daughter, but I couldn’t work and care for Lily at the same time. The tough decisions we had to make are simply things we had to endure. The cancer complicated most of our options, but I am comfortable knowing we still have choices and decisions to make together.

By Cameron Von St. James

Our Bodies, Ourselves and the birth of bioethics

The first works of academic bioethics I read were by notables such as Peter Singer, James Rachels, and Bonnie Steinbock, but that is not where my interest in bioethics actually began. In the 1980s, I ran across the book, Our Bodies, Ourselves, and I was immediately captivated by the book and the movement it represented, even if I wasn’t part of the particular movement.

The book began as an outgrowth of the feminist movement when 12 women met in 1969 to discuss their experiences with doctors. They began compiling and disseminating their stories and information to empower women to take charge of their own healthcare decisions. Bioethics as a professional field developed in the 1970s, but the authors of Our Bodies, Ourselves were ahead of professional bioethicists by a few years. In 1970, these authors released a booklet titled “Women and Their Bodies.” While professional bioethicists focused on the role of autonomy in healthcare, these women were creating autonomy by giving women information and the courage to take charge of their own healthcare. You can read more about the history here.

At the time these women met, abortion was illegal and most doctors were male. As the authors explained in the preface to the first edition of the book, “we wanted to do something about those doctors who were condescending, paternalistic, judgmental and noninformative.” To combat the attitudes they found common in doctors, they presented information on birth control, abortion, menstruation, masturbation, and sexuality in frank and shame-free language. As a outcome of the approach, they said, “Our image of ourselves is on a firmer base, we can be better friends and better lovers, better people, more self-confident, more autonomous, stronger and more whole.”

Our Bodies, Ourselves, the book, continues to be published (now in more than two-dozen languages), and the organization, Our Bodies Ourselves (OBOS), continues as a nonprofit organization promulgating information on girls’ and women’s health and sexuality. Their efforts now extend globally through the Our Bodies Ourselves Global Initiative (OBOGI).

These women approached bioethics from the ground up and changed the world.

This is how I feel bioethics should be conducted for the greatest impact. Patients, ideally, should drive the focus of bioethics and inform both ethicists and healthcare providers of what issues are important. The only way for this to happen is for patients to tell their stories of how they experienced healthcare, medicine, illness, and even death.

To that end, I am inviting patients to submit their own stories of illness and medicine to Ethics Beyond Compliance. If you would like to submit a story related to your experience of illness (either as a patient or as a caregiver) or grief, please send it to me. I will have a story coming up in the next few days, but I hope to make it a regular feature of the blog.

See also: O is for Our Bodies, Ourselves

Thought experiment: Financial Conflicts of Interest

Believe it or not, many people see no problem with financial conflicts of interest in health care. People who receive payments say they are only doing the same job they would do otherwise, except with more resources. This, they say, enables them to provide better health care. People who make the payments will claim that they are only trying to ensure that their beneficial products are able to improve the lives of as many consumers as possible. Even patients defend conflicts, saying they don’t mind their doctors making a few extra dollars in order to provide efficient, state-of-the-art service. Patients see these financial ties as a way to ensure groundbreaking treatments reach consumers.

Slippery Slope
A rather beautiful example of a slippery slope.

I’m not a doctor, but there are analogies for me. If we look at financial ties in another industry, it may be easier to see the problem. In education, the stakes are lower, but some parallels to the medical industry remain. I will begin with actual practices and then ask you to imagine further practices that parallel the medical industry.

First, instructors are commonly asked to review books for publishers seeking feedback on manuscripts or new textbooks. This gives the publisher an opportunity to get feedback from potential customers while also enabling instructors to provide input to publishers. Instructors get better books, and publishers are able to improve both their products and their marketing. The instructor is, of course, paid a small honorarium for the time invested in reading and reviewing the book.

Second, once instructors have given feedback, publishers may invite them to be more involved in the production of the textbook. They may be asked to write an instructor’s manual to accompany the text or participate in developing workbooks or online supporting materials for students. (Disclosure: I know that these first two items are practiced because I have reviewed textbooks and written an instructor’s manual for pay.) Instructors, of course, know the most about what instructors need and how students may use various materials. Improving the product benefits publishers, instructors, and students.

Now, imagine that an instructor sees an improvement in students’ success rates and general aptitude. The instructor begins to collect data and may even present at a teaching and learning conference on how these materials have benefited students. A publisher might (I don’t know of this happening in real life) offer to pay the instructor to give the same presentation at additional conferences. On the surface, this does not seem harmful. After all, the students really did improve using these materials, and the presentation was not developed with the aim of getting payouts from the publisher. Certainly, no students will be harmed by these presentations.

Finally, imagine this instructor begins to accept regular invitations from the publisher to present on the benefits of the products and encourages others to adopt the same materials for their classes. The instructor notes that most of her or his students are now earning A’s and B’s when the class averages were usually a B or C before the materials were adopted. To reward the instructor for this amazing success, the publisher begins to pay the instructor $100 for each A awarded and $80 for each B awarded. Soon, this instructor is widely hailed for improving student success and completion rates at a college that struggles with generally high rates of failure and incompletion.

Now, these payments to the instructor come to the attention of the student newspaper, which publishes the amounts paid to the instructor and the increase in high grades in the classes. The public is outraged, but enrollments in the class continue to increase. The instructor counters that no one has shown that even one student who received an A did not deserve an A. Further, the instructor says that the improvements in student success were documented even before the payments began. The publisher responds by saying that the materials it produces are of the highest quality and that it is proud of the success rates of the students using the products. Without the relationship between the publisher and instructor, fewer students would have benefited from these outstanding educational materials and that would be a real tragedy.

Questions to consider: 1. Did students really benefit from the relationship? 2. Were cheaper alternative materials available that were equally beneficial? 3. Is it possible that students received inflated grades, even if proving it so is impossible? 4. What would it take to identify this relationship as a moral problem? 5. Are all financial relationships with industry unethical? 6. If not, when does the relationship become unethical?

I think it is extremely rare for someone to go into a job with criminal intent to capitalize on the system and take home as much money as possible regardless of possible harm. No, everyone begins with the best intentions and becomes blinded to the possible effects of their actions. And, precisely because each person has no malevolent intentions, each person feels insulted by even a hint of judgment and defends her or his practices vehemently. Because good people do X or Y, it is easy to think it is impossible that X or Y is a bad thing, especially when we can show that many people have benefited from these practices.

åIt is easy to be blinded by the fog of good intentions and financial influence, and ethicists are not immune. The job of the ethicist is not to be perfect but to be on guard. The job of the ethicists is to constantly strive to get a clear view through the fog and to help others stay on the paved path running alongside that slippery slope.