The good death

Can an unborn baby have a “good death”?

Death and dying have been on my mind a lot lately. I know that sounds bleak, but bear with me — it’s not as bad as it sounds. I recently read Caitlin Doughty’s Smoke Gets In Your Eyes: And Other Lessons from the Crematory, which exposes a culture of death denial in America. Doughty describes the “medicalization” of death that began in the 1930s, in which deaths no longer happened at home but in hospitals. The result is that death (and dead bodies) became hidden from public view, “hygienic and heavily regulated” rather than ritualized family (and community) affairs. As a result of our modern “denial strategies,” the funeral industry has come to focus on “celebrations of life” to distance families from potentially offensive aspects of death. Doughty argues that we are “missing rituals of true significance, rituals involving the body, the family, emotions.”

Confronting, and indeed embracing, our own mortality in this way can help lead to Doughty’s idea of the “good death.” For her, this means

being prepared to die, with my affairs in order, the good and bad messages delivered that need delivering. The good death means dying while I still have my mind sharp and aware; it also means dying without having to endure large amounts of suffering and pain. The good death means accepting death as inevitable, and not fighting it when the time comes.

But the meaning of a good death is deeply personal. If we accept that pregnancy losses deserve to be grieved because a beloved person died — even if only the potential of that person — than how should we conceptualize a good death before that potential has been realized? How do parents who experience miscarriages, stillbirths, or early infant death celebrate the life of someone neither they, nor anyone else, never really knew? What if death, and the dead body, are the only encounters those parents will ever have with their child? How can we choose for someone else what a good death would look like, especially if that death is sudden and unexpected?

I’ve written in the past of my conviction that states should not require families to bury or cremate the remains of miscarried or aborted children. The idea that people should strive for a good death only makes that conviction stronger, especially in cases where parents end pregnancies after discovering terminal abnormalities.

If a baby cannot choose for itself how to have a good death, and yet death is inevitable, then we must trust parents to make those decisions for them. Parents who end pregnancies due to fetal abnormalities, or disavow life-prolonging care and choose instead simply to hold their babies in their first and last moments, may be going against modern medicine’s emphasis on progress and problem-solving at all costs (see Atul Gawande’s masterful book, Being Mortal: Medicine and What Matters in the End, for more on this). But contrary to what many in the pro-life movement would suggest, these parents are not murderers. Instead, according to my numerous interviews with women who have chosen late “abortions” after receiving horrible diagnoses, they are parents in the truest sense of the word — choosing to do whatever they can to relieve the suffering of their child during a time of unthinkable tragedy. They may have more control over the “how” of their situation than others, but they do not conceive of their circumstances as anything less than a loss. Traumatizing these parents by taking away their chance to give their child a good death, in the way they best see fit, is simply unacceptable.

What about cases when the baby’s death is wholly unexpected? Unfortunately, in our society, there are no clear rituals for what to do when unborn or newborn babies die. According to a nurse I recently spoke with, “society has come a long way in caring for bereaved moms. But it’s still a little taboo in social circles. Cancer is more talked about than the demise of newborns because it’s just so awful. We think, why would that happen to a newborn?”

In the aftermath of a miscarriage, stillbirth, or early infant death, allowing the parents to break the taboo — if they so choose — may be one way to ensure something of a good death for their child. Providing bereavement leave, and advocating for better research and a chance for medical testing, may be another. This would allow parents time and information to process their loss, and alleviate the awful not-knowing that haunts so many of us and feeds our fears about subsequent pregnancies. We could give parents the chance to be with their baby for as long as they need, if they want to do so at all, by investing in cuddle cots or bereavement suites in hospitals. We could support education programs to ensure that all medical professionals who come into contact with pregnancy loss have some standardized, patient-centered bereavement training, and that hospitals have compassionate protocols for dealing with these tragedies. In short, we could ensure a safe space for parents to create for themselves exactly the kinds of rituals that Doughty talks about, ones that let them give their child the best possible chance at a good death.