Illinois Wesleyan University Magazine

From IWU Magazine, Spring 2014 edition

Caregivers share lessons on how to navigate the dying process

According to Karla Erickson ’95, there are many lessons to be learned from end-of-life caregivers about “navigating the transition from life to death.” The author of How We Die Now: Intimacy and the Work of Dying, Erickson recently shared some of those lessons in an article she wrote for The Grinnell Magazine, the alumni publication of Grinnell College, where she is an associate professor and sociology chair.

Small things matter.

Avoid overtreatment.

Families of dying people often pursue any means to keep their loved ones alive, even at the risk of excessive medical interventions. As Erickson learned from caregivers of the elderly, “Don’t pursue such medical interventions in lieu of saying good-bye, acknowledging that the end is near or taking the opportunity to celebrate the dying person’s life.”

Make choices.

Denial is often an obstacle in making choices about how we want to die. “Denying the inevitability of death means that when it comes, you’ll be unprepared — and in crisis,” Erickson wrote in The Grinnell Magazine.

“Shift your focus away from the heroics and drama of fighting terminal illness and toward an acceptance of death that is planned, peaceful and deliberate.”

Be not afraid.

Elder-care workers recounted to Erickson end-of-life scenes they had witnessed where fear of pain and the unknown created an atmosphere of chaos and crisis. “Take away the fear, and death can be a much more peaceful, controlled and intentional leave-taking,” she wrote. “And the best antidote to fear is knowledge.”

That knowledge includes recognizing signs of approaching death, such as diminished interest in the outside world, decline in appetite, lack of thirst and talk of going on a journey. Knowing these signs “can allow those who are dying and their loved ones to understand options, make choices and make the best use of the time they have together,” wrote Erickson.

Make a plan.

“All of the end-of-life workers I interviewed — every single one — talked about the need to make plans for death; 48 out of 50 had already made their own — elaborate, detailed and, in almost all cases, written down,” Erickson reported. “Making plans, they said, means a much greater chance that their wishes will be honored and that their passing will be peaceful.”

Act.

Even with a plan in place, family members can sometimes freeze or withdraw for fear of doing the wrong thing. Instead of waiting for the final death scene so often depicted in pop culture, end-of-life workers advise to not put off saying good-bye, or less dramatic gestures such “pulling up the covers, or turning a fan or feeding ice chips.” Small things matter. “Don’t be afraid to touch them,” urged one worker. “You can hold them, you can kiss them, you can hug them.”

Talking is also important. “End-of-life workers say the dying know they are dying and benefit from frank conversations with loved ones,” Erickson wrote. “But friends and family often avoid the subject and focus instead on a quest for more time, hope of cures or minutiae. In the process, they squander precious opportunities to say good-bye, to offer apologies and forgiveness when needed and to communicate their deepest feelings.” As one worker shared with Erickson, “Hearing seems to be the last thing to go. Keep talking to them, they can hear you.”

Be grateful.

Taking care of people who are dying “can be physically, medically, emotionally, socially and spiritually demanding almost beyond compensation,” Erickson observed. “Yet those who do it say it also can be rewarding beyond measure, leaving them strong, self-assured, grateful and at peace with life itself.

They found their days more rewarding and their routine engagement with death transformative, precisely because it was difficult and rare. The continuing presence of death also reminded them of the preciousness of life.”

Learning how to accept death, it seems, can offer a path to learning how to live a fuller life.

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