On a recent Thursday, I had one of those odd convergence moments where my work life converged with my academic life: I attended a webinar on Protecting Patients from Harm: Ethical, Legal & Policy Responses to Domestic and International Marketing of Clinically Unproven Stem Cell Interventions. As usual with these sorts of talks, the really interesting stuff comes up in the audience question-and-answer period.1 One of the questions that was asked and not really answered to my satisfaction was the question of harm. In particular, the question is what’s the harm in allowing someone who is ill – either terminally or at least permanently – to participate in these unregulated injections of stem cells?
There are a lot of good answers to this if you’re a clinician or researcher or ethicist. But the answer to risk of harm is an abstract concept that can be difficult to translate to the personal when you-as-person already feels harmed, be it from a chronic or terminal condition. Respect for the body, justice, consent – these have already been taken from you by the illness that you’re locked in a struggle with; chasing treatment, even (if not especially) an unregulated and unproven one, is in many ways an attempt to re-establish autonomy and control.
The more nebulous concepts of harm – the ones that are in some ways more systemically important to medical and research professionals – are abstract and lose meaning in the face of the personal, which is why ultimately, trying to even engage the idea of unregulated research on the grounds of risk of harm is ineffective: it’s impersonal. Of course, the impersonal is often desirable in academic discussions; when talking to peers, it’s a matter of kicking the tires of ideas, of talking about evidence and replicable information. Papers that are written, whether formally or in slightly more informal settings, are generally addressing people with similar specialized language and background.
This might have been fine even a decade ago, but the Internet is a great equalizer, and what was once the purview of those with institutional credentials and academic backgrounds is now available for anyone with interest. And, I can tell you from first-hand experience, when you or a loved one is terminally ill2 and facing a long, painful decline, you get interested real fast.
When Mom was dying of cancer, there was a “novel spa therapy” making the rounds of daytime talk shows; I’ve joked since about it being peach pit therapy, but that’s largely because of all the things I do have lodged in my brain from the 11 months from her diagnosis to death, I apparently didn’t have room to remember this particular “therapy.” What I do remember is that it was very popular, advertised as holistic and natural, and being offered at a spa facility in Mexico, with the explanation being that American regulators had banned it because it was a simple cure that would undercut pharma profits.
I also remember the desperate willingness of extended family and friends to want to believe in this or any other alterna-treatment option for my mother’s cancer. The first few months of illness had us bombarded with “helpful” information on all of these novel therapies, including the Mexican peach pity therapy, along with explanations of how evil the FDA is, how cruel doctors are, can you believe those people who would deny us life-saving medications for Mom. It was an interesting window in to what people will say, given that at the time my sister was working on getting in to medical school and I was in graduate school for bioethics. In other words, we were a tag-team of evil in the eyes of folks who wanted desperately to believe that peach pit therapy would cure Mom.
And it’s rough, it’s more than rough, because at 3am, when you’re running your hand over the soft stubble of silver hair growing back after the latest round of chemo, as you gently swab your mother’s lips and tongue with a wet sponge because she can no longer swallow, you want that peach pit therapy. You want any therapy. If someone had walked in to the room that was hissing with oxygen, machines beeping, pumping morphine in to her body, and promised me that if I just gave him $15,000, $30,000, the moon, he would give me a simple and easy and non-toxic cure that would keep her with me, with us, for a natural lifespan, of course I would have leapt at it. I would have robbed a bank; I would have climbed the sky; I would have done anything. Who wouldn’t? Who doesn’t want that easy fix, regardless of cost, because it’s your mother, your father, your child, you.
The Internet is the great equalizer of access to knowledge; it’s true. And when you-the-patient, you-the-caregiver, are reading scientific studies, it’s relatively easy3 to at least figure out what the abstract is saying: Avastin is promising for some lung cancers, but not so great for breast cancer. You can try to piece together risk, efficacy, application. You can — and many people do — talk to your physician about what you’ve read and what it means.
Unfortunately, most people don’t have a pet philosopher in their back pocket, or a bioethicist on call to explain what that obscure paper on harm principles means, or how it applies to unregulated stem cell treatment, or even the historical issues surrounding the concept of harm, experimental treatment and illness. So while the Internet certainly equalizes access to knowledge and closes the gap for the motivated patient or caregiver in relation to science articles, is actually creates a wider gap between this group of people and those in the humanities working with concepts of patient advocacy, harm, and protection.
The academics are talking to their peers, discussing ideas that have deep history, attempting to do meaningful work, trying to protect the vulnerable from being preyed upon by unethical and unscrupulous people, and perhaps most importantly, trying to prevent needless deaths. Is this paternalistic, or infantilizing the patient? I hesitate to go that far, because I would like to think that any moral person would, on seeing an oncoming car aimed towards another person, do their best to yank that other person out of the way — not out of paternalism, but simply out of reaction and instinct.
But that doesn’t mean that these papers and discussions aren’t difficult for the patient or caregiver, because it’s not the same as a scientific results paper. There isn’t an easy analysis of works or doesn’t, there aren’t results on charts and graphs, and there isn’t anything to discuss with your physician. Instead, it’s really easy to be left feeling like a nameless statistic rather than a person with an illness with a family and a story and a desire to live — vague references to philosophical theories or shorthanded comments that lead to a long string of clinical abuses by researchers, or just impenetrable talk about varying principles; all things that have little to no meaning without years of academia and context. The very things the Internet has not yet figured out how to equalize. So instead, you’re left feeling frustrated and back to helpless — that same state the illness has created — only this time it’s created by the people who seem to be doing everything possible in their power to remove your access to hope. How could you not be angry?
I honestly don’t have an answer to this gulf between those in academia who are doing their best to limit access to unregulated medical therapies, stem cells or otherwise, out of good intent,4 and the patients who feel like this has reduced them to nameless numbers without a voice. I do think that the onus to bridge that gap is on those in academia; to write a bit more accessibly, in less prestigious forums that are read by more patients and caregivers, and to leave behind some of that dispassionate academic voice in exchange for more emotive and compassionate language.