When faced with a new diagnosis, a patient knows that the necessary treatment may make her feel lousy. What she doesn’t always account for, though, is the effect that it will have on the rest of her life.
It’s common for patients and physicians to decide whether a treatment is worth it by weighing the health benefits against the side effects. Most treatments — good treatments — aren’t just rainbows and butterflies. Chemotherapy leaves a person fatigued and nauseated. Treatments for sickle cell anemia can lead to infertility, and even routine vaccines sometimes have you nursing a sore arm for days.
But often missing from the equation are the non-physical side effects, and they can be substantial.
The financial impact of treatment is the easiest to quantify. The short of it is that health care is expensive. Most obvious are all the medical bills. Even well-insured patients struggle to pay for copays, deductibles, and prescriptions. Beyond the bills, being sick often means less income and more living expenses. The need for the Ronald McDonald House Charities and other such organizations shows that patients and their families often can’t handle the financial stress of treatment on their own.
Patients lose so much more than their savings, though. They lose time.
“Time toxicity” as a concept is gaining traction. Patients spend hours, days, even weeks or months, receiving treatment. Driving to appointments, waiting in waiting rooms, undergoing tests, recovering — the time all adds up, but it’s rarely acknowledged.
Administrative tasks are never-ending as well. The administrative burden of health care is finally getting some attention, but the focus is usually on providers who spend hours charting and billing. The patient burden is an afterthought. Patients are the only participants in the health care system without any formal expertise. Yet they’re the ones rearranging their work and child care schedules to make the only appointment slot they were offered. They’re the ones spending hours on the phone fighting with insurance companies to get their care covered.
The administrative burden is so great that patients sometimes delay or skip care because of it. Michael Anne Kyle, lead author of the linked study, told me via email that the stress of dealing with administrative tasks is just as, if not more, draining than the time spent. She noted equity concerns, too: The sicker the patient, the more health care he receives and the more administrative tasks for which he’s responsible.
Patients lose metaphorical time, too. They miss birthdays and weddings. They aren’t able to travel so they miss vacations. They are simply worn out from treatment and don’t have energy to do the things they love.
Getting treatment when the physical side effects outweigh the benefits is also time lost. For example, an elderly patient’s body might not be able to handle aggressive cancer treatment, leaving him sicker than he was before his diagnosis, stealing his remaining years from him. Those with terminal illnesses may not gain much from medical intervention and focusing on quality of life may allow them to better enjoy the time they have left.
Lastly, being sick steals a person’s independence. The loss of autonomy and the mental and emotional toll of treatment are very real. With a goal of “get better at all costs,” an individual may feel like the universe now calls the shots for him. Even though the health care system encourages him to make his own medical decisions, facing a serious diagnosis is enough to make a person feel like he has no choice.
These losses are life-changing enough for those who really do need treatment but, unfortunately, some patients are over-diagnosed and over-treated. One survey of physicians found that more than 20% of care may actually be unnecessary. This means more people are dealing with the side effects of treatment — physical and non-physical — than really should be.
A lot is asked of a patient when she signs up for medical care. She’s not just hoping to regain physical health, she’s also agreeing to lose money, time, and independence. Acknowledging this when deciding if treatment is worth it will lead to better overall well-being.
The onus is on the provider to discuss these non-physical side effects during treatment planning, being open and honest with patients about what may be coming down the pike. This may mean offering a few treatment plan options that balance the benefits and risks differently.
The patient should advocate for themselves during these conversations, too, to make sure their concerns and priorities are heard. And they should anticipate that treatment may impact their wallet and calendar in unexpected ways.
By focusing more on the non-physical side effects of treatment, providers and patients will together create a more holistic path forward, one that is both clinically sound and sustainable.
Elsa Pearson Sites, MPH, is the policy director of the Partnered Evidence-based Policy Resource Center with Boston University School of Public Health.