Sunday, December 01, 2002
Copyright © Las Vegas Review-Journal

SENIOR REPORT: Ian Mylchreest

Nevada scores poorly in providing care for the dying

Many years ago, Ben Franklin's alter ego, Poor Richard, noted the only certainties in this world are death and taxes. During the Reagan administration, Sen. Howard Baker, R-Tenn., ridiculed the double talk about those certainties when he called them "revenue enhancements and negative patient outcomes."

Twenty years later, we are still having trouble with straight talk on either issue. This column is not about taxes; it's about the other issue.

Even counting all the disasters, accidents and crimes, as well as the proverbial heart attacks on the golf course, 90 percent of deaths occur after a marked decline in health, and can take weeks or months or even longer.

When most of us have to go through that kind of death, you'd think we, as a society, would pay more attention to it. A new report says, however, that, as a society, we are largely ignoring the problems of managing our own departures.

Last Acts, a national coalition of local and state groups dedicated to reforming the way we die, has just published a report outlining the problems with end-of-life care across all 50 states. "Means to a Better End," the report sponsored by the Robert Wood Johnson Foundation, has reviewed the existing medical research, taken opinion polls and examined the available government and private information to count resources for the dying and outline the problems in each state.

Its blunt conclusion is that even the best states do a mediocre job in providing end-of-life care. On most of the questions, Nevada rated average or below average.

Most people say they want to die peacefully at home in the comfort of their own bed with family and friends around them. Nevada scored a C on that test, which means that far too many people are dying in hospitals. In Clark County, 40 percent of people die there and another 13 percent die in nursing homes.

We are doing better than average on hospice stays. We did not get a rating on the length of hospice stays because no state figures were available. One expert said, however, that the length of hospice stays is the crucial issue.

Las Vegas-based bio-ethicist Pamela M. Dalinis, who is assistant director of the Center for Health Ethics and Health Policy at the University of Nevada, Reno said: "Doctors are reluctant to put people into a hospice program because they think it means the end. We have good studies to show that doctors who have some kind of relationship with a patient are particularly reluctant to put those people into a hospice program because they don't want to lose them."

Dalinis said that both patients and doctors should remember that hospice is a program not a place. Ideally, a hospice program helps people to die peacefully in their own homes, which is what they want to do. It does not mean simply shunting them off to a facility to wait for them to die.

Nevada doctors need to use hospice programs much more, according to Dalinis. "People need to remember it's not an either-or situation," she said. Curing the patient complements his or her comfort and preparing for the end of life. Far too many doctors turn to hospice care only in the last few days, which is far too late.

Nevada's scores went downhill after that. We got an E, the lowest grade, for pain management. That means the medical literature and state surveys show we are one of the worst in the country for ensuring that pain is properly relieved at the end of life.

Dalinis said severe pain at the end of life is unnecessary. She blames misinformation among physicians who are still afraid they might create drug addicts if they use strong pain-relief medication. Research indicates that appropriate medication to counteract severe pain will not make patients drug dependent. Too many doctors also are afraid, Dalinis said, that prescribing large doses near the end of life might expose them to charges of hastening the patient's death.

Only three physicians in Nevada have certified training in pain management, and this kind of statistic helped rank the state near the bottom of the list in dealing with pain management.

Another problem that emerges from the report is that while Nevada scores well for its state policy on pain relief (the state scored a B), we were in the bottom 20 percent for ensuring pain management in nursing homes. Along with a handful of other states, we had the highest percentage of patients left with untreated chronic pain.

Advance directions, which is the technical name for living wills and similar instruments to provide instructions if a patient is incapacitated, also scored a very low grade. Nevada scored a D, which was well below the national average.

Dalinis is not surprised about that result. The Legislature enacted the Patient Self-Determination Act in 1990, but instead of empowering patients, it made the process very legalistic. The documents that people have to use under the law are not, she said, "user-friendly."

So-called "living wills" have limited use under Nevada law. Dalinis said they give the option of discontinuing medical treatment only if a doctor determines the patient's condition is terminal. In the real world of clinical medicine, patients need to make many other decisions, or have them made for them, before they come to the final decision to disconnect artificial life support or similar intensive care treatment.

Dalinis said the better option under Nevada law was to sign a power of attorney for health. That document allows a patient to nominate a friend or relative to make decisions about medical treatment if the patient cannot make the decision for him or herself.

The law specifies a hierarchy of people such as spouse and children to make those decisions if there is no power of attorney, but it does not recognize "significant other," Dalinis said.

She often finds patients whose most trusted advocates are friends or lovers whom the law does not recognize because there is no family or marriage relationship. A power of attorney for health can appoint any person to make decisions for an incapacitated patient, but to make this work you have to plan ahead and do the paperwork before you are incapacitated.

Dalinis said the report should create an opportunity for physicians to improve their knowledge on pain management and palliative care. The center has run many seminars in recent years for health professionals to raise their awareness of these issues, but much more education is required.

"In this country," Dalinis said, "we worship youth and longevity. Neither patients nor physicians want to talk about death."

This report gives us all a chance to think and act on these important issues. "It used to be that you couldn't talk about sex, politics or religion," said Dalinis, "but now we've added death to that list."

She hopes that this report will get us all thinking and planning for the end of our life. Two centuries after Franklin, it's still one of life's few certainties.

Contact Ian Mylchreest c/o the Las Vegas Review-Journal, P.O. Box 70, Las Vegas, NV 89125 or e-mail him at Ian_Mylchreest@reviewjournal.com.