NeuroTalk Support Groups - Dealing with End-of-Life Questions and Issues

Dealing with End-of-Life Questions and Issues

No matter your age or situation, it’s never easy. Talking about the end of life is extraordinarily difficult, whether you’re the one facing death, or you are a spouse, partner, child or friend of someone who is. We tend to put off the conversations around these issues as long as possible, but experts say it’s actually often easier to begin the discussions way ahead of time, when the end seems farther off.

We delay discussing the topic because we’re afraid of either becoming depressed or of depressing others. We may be unsure about how to answer hard questions. Some fear that discussing death will remove the last vestiges of hope. Sometimes physicians avoid treading on the topic, and family members can feel they’re protecting their loved one by encouraging caregivers, health providers, friends and family to focus on “cheerful things.”

But studies suggest that the discussion of death doesn’t trigger depression, although it may stimulate grief, which is a normal and healthy process. Avoiding the discussion tends to breed isolation and loneliness.

The key is to base each and every conversation on what you know about the individual person and his or her needs. Some want to know details about the dying process and need to carefully prepare. Some are interested in writing or recording thoughts or advice for the future. Others want to focus on ensuring economic security and stability for their family and friends. Some may prefer avoidance or denial. It varies with the individual, timing and mood.

One of the most difficult discussions to have revolves around the options and preferences for care closer to death. Some call this “Advanced Care Planning,” but it involves reviewing medical and palliative care options. It also includes dealing with advance directives and other legal documents, like the durable power of attorney for health care. It’s important for caregivers and family to know how aggressive the individual wants to be and how he or she would like particular situations that could arise handled. Ideally, a physician or palliative care nurse initiates the first discussions about advanced care planning. It’s important to discuss the individual’s goals, values and beliefs and what situations, if any, he or she would find intolerable. The conversations should be reviewed and updated over time.

There is a great deal of resource information available that can provide perspective and useful information. But experts agree there is no substitute for thoughtful conversation and dialogue, and an openness to confront the fears and hopes that arise as each of us faces our own passing and the death of those we love.

Resources

“Providing Comfort at the End of Life,” National Institute for Aging, http://tinyurl.com/dxbtyk

The End-of-Life Handbook: A Compassionate Guide to Connecting with and Caring for a Dying Loved One by David B. Feldman, Stephen Andrew Lasher Jr., and Ira Byock, 2008

The End-of-Life Advisor: Personal, Legal, and Medical Considerations for a Peaceful, Dignified Death by Susan Dolan and Audrey R Vizzard, 2008

“Mommy’s Going to Die: Helping Kids Cope,” by Lauren Cox, 3/17/09, on ABC News: http://tinyurl.com/cvdo9h

April 09, 2009 5:32 PM
The Exchange
The ALS Association National Office