When a patient receives a new diagnosis, she is aware that the necessary treatment may make her feel awful. What she does not always consider, however, is the impact it will have on the remainder of her existence.
Patients and doctors frequently determine whether a treatment is worthwhile by weighing the health benefits against the side effects. The majority of effective interventions are not all rainbows and butterflies.
A person undergoing chemotherapy experiences fatigue and discomfort. Treatments for sickle cell anemia can result in infertility, and even routine vaccinations can result in days of arm pain.
However, the non-physical adverse effects are frequently overlooked, and they can be substantial.
The treatment’s financial impact is the simplest to quantify. The bottom line is that health care is costly. The most apparent are the medical expenses.
Even insured patients have difficulty paying copayments, deductibles, and prescription costs. In addition to medical expenses, illness frequently results in decreased income and increased living expenses.
The need for the Ronald McDonald House Charities and similar organizations demonstrates that patients and their families are frequently unable to manage the financial strain of treatment on their own.
However, patients lose much more than their savings. They are tardy.
The concept of “time toxicity” is acquiring traction. Patients undergo treatment for hours, days, or even weeks or months. The time spent traveling to appointments, waiting in waiting rooms, undergoing testing, and recovering is rarely acknowledged.
Likewise, administrative duties are never-ending. The administrative burden of health care is finally receiving attention, but providers who spend hours charting and invoicing remain the primary focus. The burden of the patient is an afterthought. Patients are the only members of the healthcare system who lack formal expertise.
However, they are the ones rearranging their work and child care schedules to make the only available appointment window. They are the ones who spend countless hours on the phone battling with insurance companies to have their care covered.
As a result of the administrative burden, patients sometimes delay or forego care. Michael Anne Kyle, the main author of the referenced study, informed me via email that the stress of dealing with administrative tasks is as taxing, if not more so, than the time spent. She also mentioned issues of fairness: the sicker the patient, the more health care he receives and the more administrative duties he is liable for.
Patients also lose figurative time. They miss weddings and anniversaries. They cannot travel, so they miss out on vacations. They are merely exhausted from treatment and lack the energy to engage in their favorite activities.
Obtaining treatment when the adverse effects outweigh the benefits is also a waste of time. For instance, an elderly patient’s body may be incapable of withstanding aggressive cancer treatment, leaving him unwell than before his diagnosis and robbing him of his remaining years. Those with terminal illnesses may not benefit significantly from medical intervention, and a focus on quality of life may enable them to enjoy the time they have left.
Lastly, illness robs a person of their independence. The mental and emotional toll of treatment and the loss of autonomy is very real. A person with the objective “get better at all costs” may feel as if the universe is now calling the shots.
Even though the health care system encourages him to make his own medical decisions, a severe medical diagnosis can leave a person feeling helpless.
Unfortunately, some patients are overdiagnosed and overtreated, despite the life-altering effects of these losses on those who truly require treatment.
According to a survey of physicians, more than 20% of care may be unnecessary. This means that a greater number of people than should be experiencing physical and non-physical adverse effects of treatment.
When a patient enrolls in medical care, she is expected to fulfill a number of responsibilities. Not only does she hope to recover her physical health, but she also consents to losing money, time, and independence. Recognizing this when considering if treatment is worthwhile will improve overall health.
The responsibility for discussing these non-physical adverse effects during treatment planning rests with the provider, who must be candid with patients about what may lie ahead. This may necessitate offering a selection of treatment plans with varying benefits and hazards.
During these discussions, the patient should also advocate for themselves to ensure that their concerns and priorities are addressed. And they should anticipate that treatment may have unanticipated effects on their finances and schedule.
By focusing more on the non-physical adverse effects of treatment, providers and patients can create a more holistic, clinically sound, and sustainable path forward.