“End of Life” – Questions and a Suggested Response for Disability Advocates

`That’s a great deal to make one word mean,’ Alice said in a thoughtful tone.

`When I make a word do a lot of work like that,’ said Humpty Dumpty, `I always pay it extra.’ — Lewis Carroll

Bioethicists and other healthcare advocates must be paying a bundle to the term “end of life,” using Humpty Dumpty’s logic. The versatility of the term amazes me.

I suspect that when most of the public hears the term “end of life,” their immediate thoughts are along the lines of the description from this fact sheet from the National Cancer Institute:

When a patient’s health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the patient’s care continues. The care focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some patients remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice often provides such services.

In the fact sheet above, the term “end of life” is clearly applied to a person at the end-stage of an active, progressive and terminal disease. This usage is probably foremost in the public consciousness, and has a sort of “commonsense” definitional quality to it.

But a great number of dissimilar situations and individuals can be included in this term. The implicit definition of the term simply changes with the situation and the individual. Here are a couple of examples:

End-of-life decisions, that is, decisions that may intentionally or unintentionally hasten death, include decisions to use drugs with possible life-shortening effects and lethal drugs. — from Vrakking, et al. Physicians’ willingness to grant requests for assistance in dying for children: a study of hypothetical cases. J Pediatr. 2005
May;146(5):611-7.

“Important End-of-Life Case in Massachusetts Reaches Critical Point” was the title bioethicist Alicia Ouellette gave her posting on the AJOB bioethics blog – and before any decision had been made on withdrawal of a feeding tube from 11-year-old Haleigh Poutre, whose treatment withdrawal was sought by the state less than two weeks post-injury. Was Ouellette predicting the outcome of the court battle over her life with the title? The judge in the case did rule that Poutre should “pass away with dignity,” but the day after the ruling the news was released that Poutre had clearly recovered some level of consciousness. Poutre was transferred to rehabilitation and we assume is no longer an “end of life” case – for now, anyway.

I’m stopping here, but the range of situations and individuals who have fallen under the “end of life” umbrella is truly remarkable – and probably growing. As a matter of fact, I was unable to find a definition of “end of life” outside of a particular context, with the exception of Wikipedia. I won’t bother quoting it since even Wiki notes the entry lacks references and sources, which means it might be no more than someone else’s best guess as to what the term means.

So, what do we have? A term that covers people at the end stage of a terminal illness, deliberate decisions to end a life, and removal of feeding tubes from people with brain injury. While the first definition might be “commonsense,” the latter two seem to rely on a sort of circular logic. Decisions to “end a life” are “end of life” decisions simply because somebody dies – or someone is making plans to ensure their death. Unless, that is, you’re like Haleigh Poutre, who was an “end of life” case one day and a “rehabilitation case” the next.

The dominance of this term really puzzles me. Healthcare advocacy and bioethics are dominated by academics – with healthy representation from both the medical and legal professions. My own experience with medical professionals is that they tend to use very precise terminology – the popularity of this term within their ranks is a break from their standard operating procedures.

Likewise with lawyers. I remember a few years back when I was at a meeting and a law professor spoke proudly of his students who “could find ambiguity in a ‘no smoking’ sign.” Unsurprisingly, he was making a point about the importance of using concise and clear language in anything having to do with policy or regulations. I often wonder what his students would make of the term “end of life.”

This has been on my mind for awhile. I’ve asked a fair number of people in bioethics and medicine why they use this term and how it got to be so dominant. I haven’t gotten anything approaching a coherent answer from anyone so far. As I’ve said before, I’m not a big conspiracy theorist, but the alternative explanation isn’t exactly a kind one – these professionals are engaging in reflexive use of a term that is vaguely defined out of some kind of herd or pack instinct that replaces the critical thinking skills they pride themselves on.

In the animal kingdom, the rule is, eat or be eaten; in the human kingdom, define or be defined. – Thomas Szasz

For over a decade, “end of life care” coalitions in all fifty states worked on many fronts, all related to this expansive use of “end of life.” As part of that advocacy, the statutory powers of guardians and conservators were expanded, even to a degree that called for intervention of the Supreme Court in California, which declared some of those changes unconstitutional. Virtually none of these coalitions included disability advocates in their groups.

Some of us complained. A stock response we would get would be along the lines of “this is about people at the end of life, it isn’t about disabilities.”

So at the very time the term “end of life” expanded to clearly include people with nonterminal disabilities, the term “end of life” was used to justify the exclusion of disability advocates from the policy discussion table.

I don’t have a solution, but I have a suggested response that disability advocates and activists can make:

Stop using the term “end of life.”

Just stop. Don’t use it. Not in conference proposals, articles, everyday conversations. Nowhere, except maybe in an article like this one in which you can put scare quotes around the term.

Instead, insist on precise and accurate terminology. Insist that instead of “end of life,” we specify if we’re talking about surrogate decisionmaking, palliative care, treatment withdrawal, treatment refusal – so we can all know exactly just what the hell we’re talking about. And when we all know what the hell we’re talking about, rationales for excluding disability advocates from the relevant policy discussions become harder.

“End of life” is a term better suited to the realms of marketing than policy discussions. And if we in the disability community collaborate in this endeavor, we risk being collaborators in our own exclusion – and in the worst cases, our own extermination. –Stephen Drake