When Patients are Offered Peanuts
Scene: You’ve been diagnosed with cancer and have kept some form of visibility with your doctor, healthcare organization or on social media. You receive a request for your story. You receive a request to participate in a non-medical survey. You’re asked for your opinion on a topic. You’re asked to give your feedback/input on a new aid for cancer patients. You’re asked to… You received a request for….. You received a request to…….
To be clear, these are not clinical trials nor are they scams; they are questions geared towards the subjective, ones you have to reflect on and react to. Anything from the repetitive ‘rate your experience on a scale of almost never to almost always’ questions, to the short answer questions about your cancer experience specific to the area of interest: mental health, social support, treatment, etc. These inquiries are meant to tease out intricacies of the cancer experience, to improve the quality of care for patients, or to better elucidate what it’s really like to go through cancer so that doctors are better able to treat the next patient. And you, the current patient or survivor, can contribute all of this for the benefit of a $25 gift card (maybe)!
How about no. And allow me to explain why asking this labor of a cancer patient needs to be rethought in terms of what the compensation signals to participants. Because it’s not about the compensation per se, but what the lack of compensation continually indicates. And I am going to focus on requests by the healthcare system specifically because as a cancer patient, I’m really not looking for a few extra bucks if I deign to offer up my insider input — I am a cancer patient asking those on the other side of this patient-provider dynamic to understand why this is offensive. And for those providers to step it up for their patients.
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This is not asking an ER patient with a fracture for feedback on their experience. (Although, I think any ask of patients by the healthcare system should be compensated.) This is asking cancer patients and survivors who are quite literally professional patients to revisit a stressful if not traumatic time in their lives; this alone deserves a fee for emotional labor. But also, there seems to be some willful ignorance as to the rarity of this information versus its worth. This is asking open-ended questions that no search engine on earth can answer. So no, it’s not actually a patient survey, but a consultation. It’s asking experts for their professional quality management advice on how to optimize a business. (And to be clear, patients weren’t the ones to throw the first stone in making healthcare a business.)
Because again, cancer patients are professionals, and we’ve sacrificed a lot for that title that we never consented to giving. Aside from our flesh, we’ve paid in terms of time, energy (one in three patients experiences diagnosable distress), and money. The cost of cancer care runs in the $150,000 range, although it is practically impossible to calculate the actual cost of treatment. (What we do know is that 63% of patients report financial toxicity because of cancer and on average 3% of patients with cancer go bankrupt.) For comparison’s sake, numbers on the average cost of medical school range from $150,000 to $350,000, with a physician’s average yearly salary ranging from $313,000 to $341,000. Those numbers betray how the healthcare system actually views the financial value of information and education. But still, they offer us a $25 gift card.
Thankfully, some hospital contacts were able to inform me that these gift cards are either donated from other non-profits or purchased through specific funds based on a budget. As for compensation, anecdotally the specific amount given to participants is written into the proposal for funding. And there are dollar limits on the amount any one patient can receive in a day or year. For comparison, I would direct the reader to this Twitter thread which illuminated some very interesting takes on what constitutes work and billable labor in healthcare.
Whatever the chain of events that has led gift cards to be the preeminent form of payment for patients, I’m sorry to say it’s not good enough anymore. Institutions with vast resources can no longer get away with asking for this rarified type of labor at grossly below cost. I am simply not willing to provide trickle up education anymore if it’s only going to pass through the healthcare system and trickle down cost to the next round of patients at risk of going into debt, now with my blessing upon their care.
And as a side note, hopefully cancer insiders know the issues around pinkwashing, which is a company or organization that claims to care about cancer by promoting a ribbon product, while at the same time producing, manufacturing and/or selling products linked to the disease. Perfumes bearing stylized pink ribbons, filled with carcinogens, for example. In my opinion, many of these gift cards pose a lateral problem — if the reward for cancer patients is to offer them money to a company that doesn’t value the health of its workers, maybe that’s not the best choice, just speaking imagewise? Or in terms of ethical consistency?
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In my personal experience, everyone that I know with cancer feels duty bound to some degree to help others with cancer, myself included. Unfortunately, our generosity largely gets taken advantage of in that it is simply assumed, and I guess I’m feeling tired right now. I can say from experience that we as patients have been smacked on the nose enough times that we expect and accept the barest minimum. The few times I have previously broached this topic among cancer groups I have been thoroughly rebuked by fellow patients for my ‘lack of grace’ and unwillingness to ‘pay it forward.’ But I’m #SorryNotSorry, survival doesn’t cut it for me anymore — I want us to thrive.
And in order for that to happen we need our oncologists, our RNs, our program coordinators, etc. to advocate on our behalf. Here’s my ask to you: before you blast that study or survey off to your lists, look at the parameters of it — is what they’re asking equitable with what they’re offering? If not, please don’t burden patients, and instead advocate for a fairer system by pushing back. Inform the asker perhaps that “[you] value the topic being discussed and appreciate [their] need to generate information, but [you] value [your] patient’s time, energy and well-being and will no longer be passing along requests that do not honor that.” Or provide a note to patients in the email acknowledging the gap. Because as with any population that is disadvantaged we need allies on the front line.
Medicine is gradually shifting away from paternalism where the doctor knows all and their word is law, towards narrative medicine where the patient is integrated as a key part of their own medical team. If this is to be the case, I need to see the writing on the wall in terms of equitable respect. I need to see us looked at in a different sense starting at this behind-the-scenes level.
Some solutions? I’ll get real quiet real fast if gift cards were an accepted form of payment for medical bills. “Hi, how will you be paying today: credit card, cash, check or GIFT CARD!?” Or taking a page from Hollywood, maybe physicians with admitting privileges can insist on riders for patient compensation in their contracts? We need it established top down and bottom up at each and every healthcare and cancer facility that patients and survivors will not be grifted out of the education of their experience. Like all elements of the U.S. healthcare system, there’s no one to blame for this practice except the convoluted system as a whole. We all want better healthcare and while this is not a top priority, it is a necessary foundational shift if we want a healthcare system that truly values patients. Or perhaps in more inflammatory internet speak, fuck you, pay me.
Many thanks to Tiernan Hebron and Stephen Heaviside for their help with this piece.
