Monday 31 December 2012

Finding the Words to Say Goodbye

By Bruce Feiler, The New York Times, 30 Dec 2012

MY father spoke to his college roommate every day for 50 years. Though the two lived in different states, 800 miles apart, they were business partners, sounding boards and friends. Then one day my father called and his friend wasn’t there. He had died the night before of a terminal illness, which he had never told my father about. The two never said goodbye.

I was reminded of this episode last summer when Nora Ephron, the famed raconteur, director and (by all accounts) friend, died after keeping her terminal illness private from nearly everyone she knew. Meryl Streep captured the frustration of many.

“We’ve been ambushed,” she said at Ms. Ephron’s memorial service. “It’s really stupid to be mad at somebody who dies, but somehow I’ve managed it.” Frank Rich added in New York magazine, “Some of us — and that would include me — were pissed off at first.”

Afterwards I called my dad. He wasn’t upset with his friend, he said. Final conversations are difficult. The following day he sent me a poignant, one-sentence e-mail, “What do you say after you say goodbye?”

I’ve wondered about that question ever since. What is the best thinking about how to make farewell conversations less stressful and more meaningful?

SAY NOTHING

Last words have an almost mystical significance in both Eastern and Western cultures, in part because they hold out the possibility of revealing a deep insight or lifting a veil on the meaning of life. Japanese poets wrote haiku at the moment of their death; Jesus is said to have uttered accepting words to God on the cross.

But these days, when terminal patients try experimental drugs and often remain hooked up to life-extending machinery indefinitely, identifying which interaction might be the last is often impossible. Some experts say that patients should get to decide whether they even want such conversations. Joan Halifax, the abbot of Upaya Zen Center in Santa Fe, N.M., and the author of “Being With Dying,” said her view is to “let the dying person lead.”

“Trying to break someone’s denial through medical logic is cruelty,” she said. Saying nothing is perfectly acceptable sometimes.

Roger Ebert, the film critic who has had multiple surgeries for cancer and was once declared dead, agrees. He said in an e-mail interview that death scenes in movies put unrealistic pressure on the rest of us to be profound. “After all,” he wrote, “those scenes are well-written, directed, and performed by professionals.” (His favorites are “Terms of Endearment,” “Up” and this year’s Palme d’Or winner, “Amour.”)

When his television partner, Gene Siskel, was dying, the two never said goodbye. “To spare his family, especially his children, he never went public,” Mr. Ebert wrote. “That is the privilege of the dying person, and I respected that.” When all else fails, Mr. Ebert added, say, “Words fail me.”

SAY SOMETHING BEFORE IT’S TOO LATE

To avoid the issue of timing, as well as the deterioration that often afflicts terminal patients, many experts advise having important conversations while everyone is still able. Shelly Kagan, a philosopher at Yale and the author of “Death,” said the odds are so “vanishingly small” that you’ll know when you’re in a final conversation, you should avoid any possibility of regret by initiating interactions earlier. This includes what kind of medical interventions the person might want as well as what that person meant to you.

“As people approach the end of their life, they take kind of an accounting,” he said. “One of the things you can accomplish in these conversations is telling people broadly what it is they’ve done for you. What they taught you. Having an appreciation of that can deepen one’s sense of a life well-lived.”

When his own mother died, Dr. Kagan said, she was not in a position to have a conversation at the end. Later, her children found a letter she had written to them, along with one to her grandchildren, expressing her hopes for their lives. It was her way of having a meaningful conversation while her mind was still strong, Dr. Kagan said. The family read the letters out loud after the funeral.

SAY THE OBVIOUS

One way to relieve pressure on these conversations is to reduce the expectation that you have to be eloquent. After all, you’re not trying to earn a good review from Mr. Ebert; you’re trying to get the most out of a moment of deep emotion. Ira Byock, the director of palliative care at Dartmouth-Hitchcock Medical Center and the author of “The Best Care Possible,” said loved ones should not expect too much from themselves or the patient.

After working with terminal patients for over 30 years, Dr. Byock recommends four simple expressions. “Please forgive me.” “I forgive you.” “Thank you.” “I love you.”

“If you say things that would be left unsaid, it matters less that you say goodbye,” Dr. Byock said. “My experience is when you’ve said it all, there’s a quality of celebration that creeps into time together because what else is there to do but just delight in the intrinsic value of spending time together.”

SAY IT WITH DEEDS

An even easier approach is to forget words entirely, and do something for or with the patient that expresses how you feel. Turn on a ballgame; listen to a favorite piece of music; read some old letters; sit on the porch and watch the rain; flip through a scrapbook.

Ms. Halifax recommended using pets, a technique some hospices are adopting. “Put the dog in the bed,” she said. “There’s so much emotional charge in our human relationships, that when the cat or cocker spaniel gets into bed, the patient lights up because she feels safe and unjudged. And then a hand reaches over from the caregiver and starts stroking the pet, and then the hand slowly finds its way to the dying person.”

SAY IT EVEN IF THEY CAN’T HEAR YOU

What if the patient can’t communicate? Should you still have a farewell conversation if it’s only one-way? Everyone I spoke to said yes. “My whole thing is to say it anyway,” Dr. Byock said. “Maybe think of it as just gifting this person with a little bit of beauty. As a principle, you can take care of only your side of any relationships. You can never presume what the response is going to be.”

Dr. Kagan said there is considerable evidence that forcing ourselves to say things out loud helps us clarify thoughts that might otherwise be unformed. “It’s a richer experience when the receiving party is able to react,” he said. “But even if they’re not, the vocalization can help in that you now have thoughts you wouldn’t have had anyway.”

In one of her final essays, Nora Ephron lamented the death of her friend Judy at age 69. “I meant to have a conversation with Judy about death,” she wrote. “Before either of us was sick or dying. I meant to have one of those straightforward conversations where you discuss What You Want in the eventuality.” But of course, she added, “once they found the lump, there was no having the conversation.”

For Ms. Ephron, for my dad, for many of us, saying goodbye to a dying loved one is among the hardest things to say. What began as a simple salutation — “God be with you” — has become a sign of helplessness. As Kurt Vonnegut said, “Goodbye is the emptiest yet fullest of all human messages.” So maybe it’s best to forget that word. Perhaps gratitude is a better emotion.

When Ms. Halifax’s father was in the final stages of dying, she told me, he was suffering deeply and the scene was hard to watch. “There were no words I could say to him,” she said, “but something arose so simple and spontaneous that I repeated it like a prayer: ‘Thank you, Daddy.’ ”

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