Aid in dying – the option of terminally ill patients to choose, with medical assistance, the proximate means and timing of their death – moved back to the national stage with HBO’s premiere of Barry Levinson’s film “You Don’t Know Jack.” As the title suggests, this portrayal of Dr. Jack Kevorkian’s efforts to open new paths for the dying may come as a surprise. Less surprising is how we distort what we don’t really know.
“You don’t know Jack” if you’d assumed he’s simply a saint or fanatic. Either/or splits, unfortunately, are familiar defensive postures when the unknown, like death and dying, makes us anxious (an afterlife of heaven or hell being the best example). Fortunately, curiosity about our assumptions, in this case concerning aid in dying, can shake up the polarized perspectives that reflect our limited awareness.
“You don’t know aid in dying” if you’d assumed: it’s about “death panels” pressuring the aged to end their lives; or, that it abandons the terminally ill to act upon ill-conceived suicidal impulses; or, that it encourages selfishness and weakens bonds of mutual care.
Let’s clarify: as implemented in Oregon, Washington and now Montana (based on last year’s ruling by the state Supreme Court), aid in dying is a choice that can only be exercised by terminally ill, mentally competent individuals. Any coercion to end one’s life – through external pressure; through withholding necessary medical care; or, through the presence of inner compulsion attributable to mental disorder – is precluded. It’s simply against standards of care established for the medical practice of aid in dying.
In other words, you don’t know aid in dying if you think it occurs coercively. Another misconception: anybody willing to act upon their readiness for death should be restrained from what are believed to be self-destructive impulses. Being able to live and wishing to die is one thing. It is quite another to want to live, but to know you are dying and wishing to die peacefully. You also don’t know aid in dying if you think readiness for death can only be expressed sanely through waiting to die.
The emergence of aid in dying isn’t unprecedented. It’s actually been around for ages, but in the closet. Historical changes in what constitute a “good death” are illuminated by Harvard University president Drew Gilpin Faust in her book “This Republic Of Suffering: Death And The American Civil War” (2008). An acceptable death, at that time, took place in a manner that testified to the state of an individual’s soul, its place in the afterlife, and therefore the possibility of reunion with loved ones.
For many, a good death remains as it was then. For others, absent belief in an afterlife, death has involved a fierce fight until the bitter end. Yet lately, in the last 40 years, hospice care has moved the emphasis to a pain-free and peaceful death. In pursuit of death with dignity, the right to refuse life-prolonging treatment that prolongs unnecessary suffering has become well established.
We are witnessing yet another historic shift in the social definition of a good death, a shift toward diversity. Imagine us respecting a range of attitudes with which, and situations in which, people die. In Montana, the terminally ill may now define their own terms for freedom from unbearable physical or psychological suffering, and hopefully find their particular paths to sanity in their dying experiences.
“You Don’t Know Jack” hints that a good death, in addition to being one’s own, also involves how dying people and survivors release each other. This unfolds, albeit with understandable grief, as a consensual separation of loved ones. Ultimately, if you think aid in dying represents abandonment – abandonment of relationships, and abandonment of loved ones by the dying, by their survivors or by medical practitioners – you don’t know aid in dying.
Aid in dying, practiced successfully for more than a decade in Oregon, more than a year in Washington, and now established in Montana, is but one approach to uniting the involuntary (that is, terminal illness) with the voluntary (that is, choice among different ways that people face death).
The never-ending story: reducing suffering and re-visioning a wise union of necessity and self-determination and love.
Victor Lieberman is a psychologist practicing in Missoula.