USA: Life and death: Hospital ethics panels help families decide

"An infant is born with no functioning brain. A teen is ravaged in a car wreck. A 90-year-old with dementia and pneumonia lies unconscious in intensive care.
Medical and moral decisions must be made. But there's no written directive for guidance. Family and physicians disagree. What now?"


Every day, in a hospital somewhere in the USA, a group of strangers — the hospital ethics committee — is called in to help people make the choices of a lifetime.

DECISIONS: End-of-life with peace of mind
FAITH & REASON: On medical care, do you want the last word in your last days?

While headlines scream about 'death panels' and Congress wrangles over health care reform, these committees or consultants have worked in U.S. hospitals for nearly two decades.

They are typically volunteers: physicians, nurses, chaplains, social workers, ethicists and medical school professors, who mediate among facts, emotions, hope and fantasy.

'Culture and religion inform every decision about health, illness, disease and care, about true caring, about who can live, about the measure of quality in a life, about when suffering begins and how it ends. We bring our full selves to every bedside,' says Dawn Seery, head of the five-hospital Methodist Healthcare System's bioethics committee in San Antonio.

'Death denial'

They tackle questions of whether to begin or continue aggressive treatments or artificial life support, such as ventilators or feeding tubes. Only 25 per cent of Americans have advance directives spelling out their values and choices for the day 'when I'm not myself any more and never will be again,' Seery says.

Consider the often-heard demand that doctors 'do everything!' to keep a patient alive.

An ethics committee will explore what's meant by 'everything.' Is it the full arsenal of possible treatments, or 'everything appropriate and beneficial?' That could mean palliative (comfort) care instead of aggressive treatment for someone who is clearly dying, Seery says.

Consider a family's insistence that God will work a miracle.

'God does miracles on his clock, not ours,' Seery says. 'I would say: Here's what we can do and what we cannot. Sometimes a miracle will not happen in the way that you had hoped. The bigger miracle may be your belief in a second life in heaven.'

In general, Catholic hospitals follow the ethical and religious directives spelled out by the U.S. Conference of Catholic Bishops. Other hospitals, even if their foundations were originally Baptist, Jewish or Methodist, may not answer to any one religion's doctrines. Like public hospitals, they typically operate with a secular bioethical approach, which emphasizes patients' autonomy and each family's own values.

And the sticking points are almost never cost or insurance.

'Society has no consensus on this,' Seery says. 'We have failed to educate the public on how to discern what is worthwhile, what is not. How far do we go? Do we keep someone in a hospital bed just because they choose it? We're all in death denial.'

Most hospital ethics panels and consultants follow a similar process. It starts with fact-finding and a set of key questions.

'Does everyone have all the information they need? Do they understand it? What are the principles guiding us? Can we ease the points of conflict and hostility?' says Farr Curlin, a palliative and hospice care physician at University of Chicago Medical Center and a member of the faculty of its MacLean Center for Clinical Medical Ethics.

'All the hoopla over those ridiculous death panels taps into an underlying concern that we will really do everything we should do for dying people,' Curlin says.

'Should' is the key word in ethics. But by whose values, whose wishes, whose powers?

'We're trying to resolve our substantive disagreements about what it means to care well for this patient. Often, there's not a terribly bright line between a use of aggressive treatment that's not warranted — meaning it won't restore or preserve someone's health — and one that is warranted,' Curlin says.

Pediatric intensive care physician Tracy Koogler often stands at the terrible juncture where pain, hope and the limits of medicine collide. Of all the children and teens who pass through the intensive-care unit at University of Chicago Medical Center, 5 per cent will not go home.

A cry for support

As their children die, parents fight doctors, or each other. Doctors disagree among themselves. Is a miracle to be had, one more treatment or trial to be found?

'Surprisingly, the most common calls I get are when families are willing to withdraw life support before the medical team agrees. Maybe they don't think it's beneficial or they don't want to put the child through the pain. They only see the burdens. But maybe the doctors think one more therapy will help,' says Koogler, co-director of the hospital's ethics consultation service.

'We're here to open up the discussion and give people information and time to process that information. We might bring in other people — the chaplain or a social worker or a palliative care consultant. We're all trying to reach the same page.'

Everyone offers ideas and tries to clarify the choices, weigh the physical costs and potential benefits. Maybe the patient's life can be extended with mechanical ventilation, artificial food and hydration, dialysis and more.

'But if the patient will never be conscious, never leave the ICU, what will the end of that life be like?' Koogler says. 'I don't impose my definition of quality of life vs. the family's. It's all about what you believe about life and faith, spirit and soul. It's very personal.'

Robert Orr, a family physician and clinical ethicist at the Center for Christian Bioethics and the Loma Linda University Medical Center in Loma Linda, Calif., says his faith and his training inform, but don't dictate, how he serves as an ethics consultant. 'I do believe in God and that God can work miracles, but he can do this with or without our participation,' Orr says.

Orr, speaking personally as a veteran 'bedside ethicist,' says his goal is to find the patient's values and voice. His questions, he says, are 'What would she have wanted, how do we know this, and how certain are we? What are the values here? What do we hope to accomplish?'

What usually happens, Orr says, is that 'we continue treatment unless we believe it causes unrelenting and unmanageable pain — or it's futile.'

'But I hate that word futile,' he adds. 'Do you mean no treatment or therapy will work at all? Or that there's just a 1 per cent chance something would help? Who makes the call? Or does it mean that while it might prevent death, the worth of the life it provides is questionable? How does the patient define worthwhile?''

The ethics team at the Mayo Clinic in Rochester, Minn., noticed that the blizzard of messages from a constantly shifting medical staff left some families locked in indecision. In such situations now, Mayo assigns just one physician as the contact person, so patients and families can develop a trusting relationship.

'They are not going to believe a caregiver who wants to withdraw life support until they see that person has really tried to help,' says Michael Bannon, a surgeon and chairman of the ethics subcommittee at Mayo.

Often, it's not really an ethical dilemma that brings in the ethics committee. It's a wrenching cry for support, says Sister Mary Eliot Crowley of St. Mary's Hospital, founded by Franciscan sisters and now part of the Mayo Clinic.

Crowley says, 'Our job then is to help them get clear and let go, to say, It's the disease, not you, taking your loved one's life.' "

"GUIDELINES FOR MAKING THAT CRUCIAL DECISION

Autonomy

A frail, unconscious elderly man needs his colon removed. The family disagrees on whether to authorize the surgery or turn instead to palliative care. They agree to the surgery, but the patient briefly rallies and refuses it.

"How do you honor his autonomy when a patient may not be thinking clearly or hasn't realized that he's going to die shortly, even with the surgery?" Curlin asks.

"You tell him the truth of his situation. If his decision accords with values and views he has expressed before, he can decline surgery.


Authority

An elderly woman with multiple organ system failure is dying. Doctors say that when she was first admitted, the family said she had a living will spelling out that she did not want aggressive treatment if she reached this point. Now, however, the family is refusing to look for or bring in the document.

"Can they insist aggressive treatment continue? Yes," Curlin says -- without documentation, they can.


Quality of life

A 2-year-old was born with such severe, chronic defects that she has lived all her life in a chronic-care facility. There, she is cherished by staff and visited often by family.

But she's frequently hospitalized with life-threatening complications. What should they do when she comes in with her fifth episode of pneumonia, requiring painful intubation?

Many on the medical staff want to strongly encourage the family to focus just on pain relief. But her mother wants the staff to "do everything." Do you respect the wishes of the mother?

"Yes," Curlin says. This baby, who has never formed a thought, still has a meaningful life -- meaningful to her mother."

By Cathy Lynn Grossman, USA TODAY
http://www.usatoday.com