Published on 12:00 AM, July 27, 2018

musings

Death with Dignity

Caring for the Terminally Ill

Illustration: Manan Morshed

It's a bit odd for me as a healthy 30-something-year-old to be writing about death. But having lived through the protracted agony of my mother's death from kidney failure and complications from dialysis, I feel I have some authority on the subject. Paradoxically, it is because medical science has advanced so far that the terminally ill die ever more slowly and painfully. I have seen again and again a dying person being kept alive indefinitely by whatever means necessary—feeding tubes, ventilators, and so forth. Even when there is no hope of recovery, we forcibly keep them alive until they have no shred of human dignity left—until they are reduced to little more than a living corpse. It's high time that we as a society think about end-of-life care for loved ones who are terminally ill, and consider the ethical issues involved.

By terminally ill, I mean patients who have been suffering for a long time, who have no chance of improvement, who have no quality of life, and are merely 'living' without really being alive in body, mind, or spirit. It's understandable and natural for family members to try their utmost to keep the person alive for a few more days or weeks or months. But think about it from the perspective of the dying person. Are we not making them suffer longer? Isn't it almost cruel to subject them to the indignity of feeding tubes, catheters, adult diapers, needles, injections, and defibrillators? Even worse, we are inflicting this cruelty to someone in their most vulnerable state—totally helpless, in pain, and no longer able speak for themselves to refuse our interventions. Isn't it almost cruel?

It would actually be kind to let them die in peace, with just fluids, oxygen, and painkillers to minimise the pain as much as possible. In fact, when we forcibly keep them alive, we're doing it for selfish reasons. We're doing it not for their sake, but for our sake, because we can't bear the loss, and we can't let go. From the dying person's point of view, the most kind and loving thing we can do is to ease their suffering, make them as comfortable as possible, and let them go when it's time.

In developed countries, it is common for elderly people to discuss end-of-life issues with their family members so that, when the time comes, their caregivers will know what they would have wished. They may also designate a healthcare proxy who will make the final decisions in accordance with their wishes. Having these conversations ahead of time can help us avoid the wrenching uncertainty of not knowing what to do. For instance, if the person does not want to be on life support, we should honor that wish. After all, it's their last wish, the last thing they ask of us. We should respect and honor that. We should allow them to die with dignity.

It is also common, in developed countries, for the terminally ill person to be taken out of the hospital and placed in hospice care. A hospice is not a hospital—it does not provide treatment. Instead, the focus is on making the dying person's last days or weeks as comfortable and pain-free as possible. Family members may continue to visit every day, but with an acceptance of death, allowing nature to take its course. We may not have hospice care available in Bangladesh, but we do have the ability to make informed decisions about what is in the best interests of the dying person.

What I'm suggesting may seem cruel or heartless. One might object, "How can we just watch someone die?" But if the person is already at death's door, you can't stop them from dying. The most you can do is force them to live a few more days or weeks. You would still be watching them die, except it would be slower, longer, and more painful—for them and for everyone else. Is that really what you want to do? Or is it kinder and more ethical to let them die with dignity? That's the choice we have to make, and if we choose poorly, we have to live with the haunting consequences.

 

Nausheen Eusuf is a PhD candidate in English literature at Boston University.