The Terminal Invalid

In my medical school days, professors still made crude remarks about women in public spaces. Gallbladder disease was most common in the fat, female, and forty group. The ligaments under the breasts were Cooper’s Droopers. Down Syndrome children were occasionally termed Mongols. Words like indolent, slow, stubborn, and indigent described patients who were problematic, poor and often non-White.

Our language is now more scrutinized, both publicly and privately. Racist and sexist terms are taboo. Person-first language is taught to medical students—the patient has diabetes, the child has pneumonia. The quick shorthand of “the diabetic in room 240” is frowned upon. Accusatory words like “noncompliant” are replaced with “nonadherent”, potentially allowing the cause of the failed regimen to be explored as beyond the patient’s control.

It is striking though, how much of our everyday language about illness and disease objectifies the carrier and distances them from “normal” people. That word—normal—reveals our expectations of people. When applied to lab values or vital signs, it’s helpful to know what is outside the bounds of healthy ranges. But beyond mathematical applications, the term is always subjective and in a dance with sociocultural mores. The psychiatric literature is full of distressing histories of people who deviated from the norms and were tortured for their differences.

Our boundary lines have widened in some important ways, but we still engage a fundamental “othering” of the person facing major medical challenges. To obtain a “handicapped” parking placard, a physician must term the patient disabled, whether chronically or acutely. The parents of my newly diagnosed autism patients are typically surprised and sometimes offended that they qualify for this and other disability benefits. I tell them it is for the “differently abled” and that language is inadequate. The placard helps parents keep a child safe who tends to run off into parking lots and streets.

Disability literature is now widespread, with activism for inclusion and destigmatization. An ongoing hot topic is whether we use the term “neurotypical” in ways too narrow and exclusive. Neurodivergence is often seen as a point of pride or a special power, at least by the one with that moniker.

A more fundamental recognition is that our most basic medical language serves to distance us from those who are unwell. The word “patient” has its roots in suffering. To be a patient was to suffer, endure pain, and be a passive player in your own life’s drama. Patience is a related word, meaning that we endure without causing a fuss to those who are active in our midst. The good patient goes along with whatever tests have been ordered by the experts, trusts the process, and undergoes treatment with a positive attitude. The well have the power.

Sometimes a person becomes so ill they are called an invalid. Invalid. It literally means not valid. Already separated from much of life, the invalid is now—at least etymologically—identified as outside the realm of common concern, someone not needed in the world of normal people. To be invalid is to lack credibility—whether as a parking ticket or as a bed-bound person.

Perhaps that sounds hyperbolic, but chronic illness and serious bodily impairment do cause social separation. As a formerly well person, I can attest to the loss of identity that occurs when one is suddenly a member of the sick tribe. What makes a life valid, a day meaningful? Work, family, recreation and social engagement may all be upended. The invalid is again seen as passively and patient-ly enduring a life lived outside the measured norms. If the invalid appears in film and literature, they are often romanticized as an ethereal being quietly accepting their fate with grace. Think of Beth in Little Women, Tiny Tim in A Christmas Carol and Quasimodo in The Hunchback of Notre Dame.

For those with serious disabilities who manage to be productive in the business world, use of the term invalid would seem shocking. Was Stephen Hawking an invalid? What about Chritopher Reeves, Helen Keller, and Stevie Wonder? It becomes clear the term is more a social one than medical.

The professional use of “invalid” is going by the wayside although it is still in the common language. But there is another word needing better scrutiny by the medical establishment. Terminal. We offer that someone has terminal cancer, terminal liver disease or terminal dementia. The implication is that the person will die from that condition. There is a sense that the medical team has little to offer, as cure is not possible. As care has advanced however, people with terminal illnesses may be living years before dying of their disease. They may even succumb to something completely unrelated. What are the boundary lines between a terminal and a chronic illness?

I don’t think we need a better definition; I think we don’t need the word. Terminal is only about death, not life. No one is terminal while still breathing. They may indeed be dying. Patients and families—and clinicians—need to better understand that process. We should know when something is incurable, and how best to livewith that. Realistic expectations of a disease’s progression is owed to the patient. But most doctors know the hazard of pronouncing how long someone has to live—both fatalism and hope can influence perspectives. Mystery is always present. The farther we are from the activity of dying, the less precise we can be about its unfolding.

Terminal has its root in Latin, denoting endpoint or boundary. It was used in the context of Roman boundary lines before being applied to human life. The word precisely focuses on a final point. How is that a helpful descriptor when used for patients still engaged with the world? When I hear a friend state she has terminal cancer, yet watch her navigate motherhood, treatment regimens, and career commitments, I wonder how identifying with that word hits her when she says it. It has such a sense of defeat despite the vibrancy of life that may be left.

Memento Mori reminded Roman generals that even they will die. It was supposed to reduce fear, since everyone dies, and encourage intentional living. We are all terminal in that respect. Why pretend to relegate the knowledge of our death to just the medically ill?

Modern medicine is known for its focus on cure and its perceived failure in death. Words like terminal emphasize that understanding. Euthanasia laws are ordered around proof of terminality, sometimes with timeframes in months. Death becomes a point of futility and termination is an option. Worse, dying is not seen as a valid process in human experience.

I’ve started using words that are more descriptive of living processes. I have an incurable cancer. My friend has advanced cancer. Another friend has recurrence of her disease. We are all active and fully present with our loved ones, even if in some ways curtailed by the complications of disease.

For those who clearly are at the end of life, words like hospice and palliative care bring a sense of nurture and comfort rather than a hard stop. There are many instances of people “graduating” from hospice as their condition improves with the care they are given. For those who are steadily declining, there is an opportunity for all involved to understand the natural course of our existence and to bear witness to that. It is almost never like in the movies; birth and death have their own labor patterns.

No one is invalid and all of us are terminal. Maybe that’s all we need to know.