Silence Hinders Priorities of Dying

Friday, November 17th 2000, 12:00 am

By: News On 6

WASHINGTON (AP) â€” It was ``the unacknowledged elephant in the room,'' the doctor recalled of her weeks-long struggle to tell a longtime patient that death was nearing, even though she suspected he'd want to avoid any last-ditch lifesaving attempts.

Dying Americans have a list of priorities â€” such as wanting to prepare for death and spend final time with loved ones â€” but ``a collusion of silence'' in which patients and doctors don't discuss impending death means too often, they don't get those wishes.

So say a series of major new studies on how we die, published Wednesday in the Journal of the American Medical Association.

Despite all the public debate about physician-assisted suicide, ending their own lives is something very few terminally ill patients consider, found one study that followed 988 dying cancer patients for six months.

When it comes to end-of-life care, ``euthanasia and physician-assisted suicide are largely irrelevant,'' concluded study author Dr. Ezekiel Emanuel of the National Institutes of Health.

But doctors often aren't aware of other issues that matter greatly to their patients â€” and if they don't discuss impending death, patients' choices get lost, added Dr. Timothy Quill of the University of Rochester.

He recounted the case of ``Dr. G,'' who for weeks worried that her dying lung-disease patient would wind up in the emergency room on breathing machines that she suspected he didn't want, all because she couldn't bring up the topic.

``People make different decisions about care when they know what their chances are,'' Quill said, citing the example of CPR, or cardiopulmonary resuscitation. It may work great in the movies, but on very sick people it usually fails â€” and terminally ill patients who understand that often tell their doctors not to try.

``Have the courage to have these discussions'' before it's too late, he advised.

How to improve end-of-life care is a growing concern. Nearly 80 percent of Americans die in hospitals or nursing homes, very often bedridden, incontinent and in pain. Yet very few write ``advance directives'' outlining whether they want heroic lifesaving measures, and most ``do not resuscitate'' orders and moves to hospices are made just before death.

Such grim statistics fuel public debate over physician-assisted suicide. Polls suggest between 60 percent and 70 percent of Americans feel terminally ill people in pain should be able to end their lives, with a doctor's help if needed. Oregon is the only state where physician-assisted suicide is legal; 43 people have used the law to die since it passed in 1997. Maine voters rejected a similar law last week.

To see how the terminally ill really feel about suicide, Emanuel tracked 988 dying cancer patients for six months. Sixty percent said euthanasia or physician-assisted suicide should be an available option.

Yet only 10.6 percent admitted considering it for themselves. Two to six months later, half of those people had abandoned the idea. Twenty-nine people who hadn't initially considered ending their lives had started considering it.

Only 1.6 percent of patients discussed the option with doctors, and 2.5 percent hoarded painkillers in case they decided to try suicide.

Of the 256 deaths during Emanuel's study, one patient died from physician-assisted suicide. Another tried to kill himself but failed. A third repeatedly asked her family and doctor for help in dying, but they refused and she ultimately died at home.

The surprise, Emanuel said: Pain wasn't the biggest influence on who considered suicide â€” depression and feeling burdensome to family were the biggest factors.

Obviously anyone nearing death is sad, but full-scale depression needs treatment to improve the quality of remaining life, Emanuel stressed.

Suicide isn't the only issue. Many doctors don't realize other elements that dying patients list as most important to their last days: being mentally aware at the end, not being a burden on family, and coming to peace with God, another study found.

Better communication, even between patients and caregivers, is crucial, Emanuel added, citing a cancer sufferer who considered suicide because she felt she was too big a burden on her husband. ``He was just heartbroken'' when Emanuel revealed his wife's fear. ``What could be more important for him than caring for his wife of 50 years?''

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On the Net:

JAMA: http://jama.ama-assn.org