Dude, Where's My Dignity

Cancer patients, survivors, and advocates have every right to be outraged when they realize they weren't fully informed in advance about the potential long-term side effects of their treatments.

This frustration stems not just from personal disappointment but from a more profound violation of patient autonomy and informed consent—two ethical cornerstones of modern medicine, particularly when it comes to oncology.

The idea that patients should know all relevant details about their treatment before proceeding is not simply an ethical guideline but a legal right.

The failure to disclose long-term side effects, such as permanent infertility, neuropathy, cognitive deficits, hearing loss, recurrence, and disfigurement, can significantly impact a patient's quality of life after treatment.

These are not minor inconveniences; they are life-altering consequences that can haunt survivors for years and, in some cases, for the rest of their lives.

The central tenet of patient autonomy—that patients have the right to make fully informed decisions about their medical care—demands that all of this information be provided before a patient begins treatment.

Informed Consent and Patient Autonomy

Patient autonomy in medical ethics is about ensuring that individuals are empowered to make informed choices about their own bodies and treatments. This principle is enshrined in both ethical and legal frameworks surrounding healthcare, particularly in the concept of informed consent.

Informed consent means that doctors must provide patients with a complete understanding of the benefits, risks, and potential outcomes of any medical treatment. Patients, in turn, have the right to weigh that information and make decisions aligned with their own values and preferences.

However, when it comes to cancer care, it's becoming increasingly clear that many patients feel blindsided after the fact. They survive their cancer only to confront a host of new medical challenges—challenges they weren't told about ahead of time.

This failure to disclose critical information leaves patients feeling betrayed by the medical system, which they trusted to be honest and transparent about their treatment options. For many, it's not the cancer itself but the long-term side effects that end up impacting their quality of life the most.

Ignorance Isn't Bliss

One of the most egregious examples is the failure to disclose the risk of cisplatin-induced ototoxicity, which can lead to permanent hearing loss. Imagine surviving cancer only to lose your ability to hear, a risk you weren't made fully aware of before treatment. For young patients, in particular, this can be devastating.

The damage is often irreversible, and many survivors wonder how their lives might have been different if they had known to ask for alternatives or preventive measures.

Similarly, neuropathy can leave patients with chronic pain or loss of sensation in their hands and feet. This condition can affect daily activities, employment, and overall quality of life. Again, many patients aren't fully informed of these risks, and by the time they experience symptoms, it's too late to reverse the damage.

There are interventions available to mitigate some of these side effects, but they can only be effective if healthcare teams are proactive. It should not be the patient's responsibility to know to do this.

Lather. Rinse. Repeat.

In response to these issues, and despite decades of rinse/repeat advocacy, growing calls for more transparency from the oncology community are louder than ever.

Patient advocacy groups, survivors, and caregivers are demanding better communication and more detailed disclosure about the potential side effects of cancer treatments.

These efforts are part of a broader push toward patient-centered care, where the focus is not just on treating the disease but on supporting the patient as a whole person.

Advocates argue that the failure to disclose these risks is a form of medical negligence, even if it's not intentional. By withholding critical information, healthcare providers rob patients of the opportunity to make fully informed decisions about their care.

In some cases, patients might have chosen different treatments—or at least been better prepared to manage the side effects—if they had known all the facts upfront.

Let's Not Throw Anyone Under The Bus

It's important to acknowledge that the majority of doctors are not intentionally withholding information.

Most are doing their best under the pressures of an increasingly complex medical system. Oncologists, in particular, face tremendous challenges.

They are tasked with helping patients survive one of the most terrifying diagnoses imaginable, often with limited time to convey an overwhelming amount of information. It's understandable that some details might be left out, especially when the focus is on saving lives.

However, being a doctor also means bearing the responsibility to ensure that patients are not just surviving but thriving. While we can empathize with the difficulties doctors face, it doesn't excuse the systemic failure to fully inform patients about the risks they are agreeing to take on.

The famous Hippocratic Oath, which doctors swear to uphold, includes the principle of "do no harm." Failing to disclose known, life-altering side effects of treatment runs counter to that principle. Cancer care must evolve from simply treating the disease to treating the whole patient—both during and after treatment.

Iatrogenics: The Consequence Of Harm

The medical profession must recognize the iatrogenic impact of cancer care—the unintended harm caused by medical interventions themselves. While the primary goal may be to eradicate cancer, the damage done to the patient's body and mind should not be downplayed.

Many survivors describe feeling as though they've traded one set of problems (cancer) for another (lifelong health complications). And they're angry—rightfully so—because many of these complications could have been avoided or mitigated if they had been fully informed.

Patients deserve honesty. They deserve to know what they're getting into, and they deserve the chance to make decisions that prioritize their own values and quality of life.

For the medical community, this means taking the time to have difficult conversations about what cancer treatment really entails—both the good and the bad. It means respecting the patient's right to make choices about their body and their future, even when those choices are difficult.

Have Advocates Not Screamed Enough?

This is not about villainizing doctors or throwing the entire medical profession under the bus. We are deeply grateful for the work that oncologists and cancer care teams do every day.

They are saving lives. However, we must also hold them accountable for the quality of their lives after treatment ends. There's a growing recognition that the time has come to do better, to provide full transparency, and to ensure that cancer patients are given all the tools and information they need to make informed decisions about their care.

Patient-centered care cannot just be a buzzword; it must be the foundation of every medical interaction.

The More You Know

Treat the patient, not just the disease, and always remember that informed consent is not a formality—it's a right.