End-of-life planning makes it easier to say goodbye

Saying goodbye as the end of life approaches can be difficult, even for those with a gift for words. In a moving account in a recent issue of The New Yorker, writer Joyce Carol Oates describes the last week of her 49-year marriage, as her husband was dying from complications of pneumonia. Like The Year of Magical Thinking, Joan Didion’s poignant memoir of her husband’s sudden death and its aftermath, Oates’ essay highlights the need for each of us to think about death and dying — and discuss them with loved ones — long before they become a likelihood.

In our work with individuals and families facing death, we have seen too many people miss the opportunity to say goodbye because they avoid what feels like a scary or taboo topic: What do I want to happen when I die? Beginning this discussion early, preferably while you are in good health, can help pave the way for a "good death." In our new book, Saying Goodbye: How Families Can Find Renewal Through Loss, we offer a guide to help individuals facing a terminal illness and their families navigate the realities of death and dying.

Planning ahead is essential. Here are some suggestions for doing that:

Choose your team. Identify support people and specialists (legal, medical, financial, religious) you can count on to advocate for you and help you make decisions. Designate these people to act for you by signing advance medical directives.

Make your wishes known. Think about, and then begin to share with your closest loved ones, your wishes about

• end-of-life treatments if you are incapable of making these decisions for yourself
• ending treatment, for example chemotherapy, if your prognosis for improvement was nil
• where you want to spend your final weeks if it becomes clear that you have only that long to live
• who you want to be with you in your final weeks, and what you would like them to do for you
• what you would want in terms of a funeral ceremony and burial.

Make plans for the living. Provide clear instructions for the guardianship of your children, if needed, or financial support for your survivors.

It isn’t easy to initiate a discussion about what you want to happen, or hope will happen, when your life ends. The purpose of this discussion is to ensure that your wishes are carried out and to save your loved ones the panic of not knowing what you would want and having to make these decisions without previous discussion or planning. One way to open the conversation is by saying something like, "I’ve been thinking what I would want if I were to become ill or die suddenly, and I want to share my thinking with you." A colleague of ours, Samuel Bojar, MD, has another approach. He has written a "just in case" booklet that includes his ideal end-of-life plan. He updates it periodically and makes it available on his computer to all his family members.

Things left unsaid is one of the themes that run though Oates’ essay. Don’t wait for a crisis or the specter of death to say "I love you" or "This is what I want to happen when my time has come."