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The Honolulu Advertiser

Posted on: Sunday, January 23, 2005

Making final decisions

 •  Talk with your family about dying

By Mary Kaye Ritz
Advertiser Religion & Ethics Writer

Trudy Schandler-Wong knew it was time to let her mother go.

Trudy Schandler-Wong faced difficult decisions before her mother, Shirley Senner Schandler (pictured in frame), died Oct. 31, 2004.

Deborah Booker • The Honolulu Advertiser

Shirley Lee Senner Schandler, who for years had suffered with Alzheimer's disease, was nearing her last breath at a hospital in North Carolina.

Should they put her on a ventilator? A feeding tube? Would they give her antibiotics for the pneumonia that was filling up her lungs?

She had already asked for a "do not attempt resuscitation" notation in her chart. She'd signed a living will. But neither of those addressed the feeding issue and several others that would come up that painful week.

"These were the most difficult decisions I'd made in my life," remembered Schandler-Wong, a flight attendant and mother.

Trudy Schandler-Wong was asked to imagine her mother 25 years ago, and what her mother would have wanted at the end of her life.

Deborah Booker • The Honolulu Advertiser

She didn't make them alone, though many in her situation do. That's something Dr. Mitchell Levy, chief of critical care at the University of Hawai'i's John A. Burns School of Medicine from 1992 to 1994 and now at Brown University Medical School, finds abhorrent.

"We abandon patients and families when they need us most," he told hundreds of doctors and intensive care nurses at a bioethics symposium last fall at St. Francis Medical Center.

More patients and their families are dealing with end-of-life dilemmas, Levy pointed out: Nationally, about one in five deaths occurs in an intensive-care unit, and these days, most of those deaths result from treatment being withheld or withdrawn.

It's life's most stressful time, and most fraught with emotion. Medical professionals are doing their best to communicate complicated medical conditions in a simple way. Families are coping with the impending loss of a loved one.


Kokuamau.org, 585-9977

Agingwithdignity.org (check out the "Five Wishes" link)

• "End of Life Care," $25, edited by Dr. S.Y. Tan (available at St. Francis, see below)

• St. Francis International Center for Healthcare Ethics, 547-6050

Whose wishes take precedence? Sadly, it's often the person who is the most contentious ... read "potentially litigious." Dead patients aren't going to threaten malpractice suits if their wishes are ignored.

Surveys show when a loved one dies in the ICU, family members may feel dissatisfied with the communication they've had with the medical staff.

"Families want to be involved," Levy said.

One daughter's story

At first, Schandler-Wong told her sisters, who are both in the medical field, she would fight the decision to withhold food.

"I said I wanted her to be fed," Schandler-Wong recalled. At the time of this first conversation, Schandler-Wong, who belongs to Temple Emanu-El and is

married to Alvin Wong, was sitting shiva (a traditional Jewish seven-day mourning observance) for their mother with her siblings. Later, when the tears were not quite as fresh but just as plentiful, she set up a shrine to her late mother on a kitchen counter in her Manoa home.

Schandler-Wong remembered how a doctor came in and said he'd answer any questions — but first, she had to hear what he had to say.

"Think about your mother, 25 years ago, sitting at the kitchen table, talking about this. What would she want you to do?" he asked.

That got Schandler-Wong thinking. Her mother was an elegant woman in her day. "She would hate it if I said, 'Stick a tube up her nose,' " she said.

So the family, who agreed that all decisions would be unanimous, came to agree on this: No feeding tubes. No antibiotics. No hydration. Only oxygen and pain medication, to keep her comfortable.

Not everyone in the ICU agreed. The hospital's IV therapist, citing written policy, refused to remove the needle giving her fluids. They had to get another nurse up from the hospice floor to do it.

Then came the long wait for Schandler's death. Her three daughters and adopted son were there and their spouses. Seven of the eight grandchildren, and even her great grandchild. Two rabbis came by. Schandler-Wong had a bedside vigil, and the sisters took turns reading their mother's World War II-era letters from her husband, who died 23 years before. They read her poetry. They gave her permission to die.

A magical thing happened. Even though she seemed to be deeply asleep, at one point, she opened her eyes. She was able to smile, hug her grandchildren one last time and say, "Love you."

What families want

When told Schandler-Wong's story, Clarence Liu, chaplain for Hospice Hawaii, was effusive in his praise for how the doctor communicated with Schandler-Wong and her siblings, especially the suggestion that they consider what their mother, in her heyday, may have wanted.

"Families are balancing a tremendous amount of things in that decision," he said. "We've found so much is determined by where they are with the relationship and their own spiritual base."

Liu, a Roman Catholic, knows there are some inherent conflicts to this, too, spiritual as well as professional:

"Doctors really want to cure. Then they get to the point where curing is no longer an option," he said.

When the medical focus changes to palliative care, families find themselves in a quagmire, he said: "Our culture has a difficult time dealing with death and dying."

Many Hawai'i people don't want to become a burden on their children, he said — but we also hesitate to have "the talk," in which we tell our families how we want the end of our lives handled.

One elderly cancer patient told us he trusts his family to know what to do when the time comes.

"They should know what I don't (want)," the East Honolulu resident said. He's told his doctors at Kaiser: " 'If I got nothing, just leave me be. Don't try to revive me.' I'm old enough already. I've had my life."

That means no CPR. No jolting his heart back to life. No tubes.

But six weeks ago, he had not had that conversation with his wife. Today, after the cancer had progressed, they have. His family, grappling with the pain of his situation, asked that his name not be used.

Having "the talk"

Many questions are often left to the end, when people are least able to answer them, and emotions and stress are at a peak. To have the conversation early is best, said Liu.

And it's never too early to make your wishes known to your medical provider. Many offer advance directives.

When you are having "the talk," doctors also must be sensitive to cultural issues, explained Dr. S.Y. Tan, a bioethicist who is chief of medicine at St. Francis and an adjunct professor of law at the University of Hawai'i.

For example, in Chinese families, it may fall to the oldest son to make decisions. But what if he's far away, or not aware of the patient's wishes?

"Explaining can do a lot," Tan said. Liu added that shame, a big part of many Asian and Pacific island cultures, can also be at play.

If the family speaks a different language, sometimes the decisions fall to the person with the most facility in English, even if that person may not be the one who best knows the patient's wishes or can ask these difficult questions.

All agree there's no substitute for directly telling your family what your wishes are.

What the patient wants

Is signing an advance directive the answer? Not always. Medical surveys show advance directives and living wills aren't always followed.

In one Mainland survey, ICU doctors believed just 8 percent of their patients had advance directives. In fact, more than 20 percent had. (In Hawai'i, the law says doctors must ask about advance directives.)

What else can a patient do?

Levy suggests the best action is to create a proxy who understands what you want and can act as your surrogate. And then tell them your wishes.

At the fall St. Francis symposium, a visiting Maryknoll student, Meaghan Herndon, put Levy and other panelists on the spot: Why aren't advance directives followed?

"Because (doctors) don't listen," she was told plainly.

Many factors cause the problem. Doctors are trained to cure, not help people die. No one relishes telling the patient he's terminal, and so doctors and patients may hold out hope until the bitter end. And it can be difficult to put certain decisions on paper, notably because the treatment may be in flux or the patient isn't cognizant.

It's not an easy call for a medical professional, let alone a patient who may look to the doctor to serve in a role of authority.

More questions, some answers

Do we want our medical people to help us die, or to hold out hope to the bitter end? Should medical personnel have better communications training that helps them talk patients through this final phase, or should these discussions be handed off to an expert in end-of-life issues?

"The solution is not to invent a new group, the bad-news givers," opined Tan. He presses for better doctor/nurse-patient relations.

Levy agreed: "Physicians are not trained to partner with patients and their families during end-of-life decisions."

Reach Mary Kaye Ritz at mritz@honoluluadvertiser.com or 525-8035.