Where are the choices in the Patient Choice at End of Life Act?

Why I Oppose Nebraska’s LB 1056

by Helen S. Chapple RN, PhD, MA, MSN, CT

About 16,000 people die in the state of Nebraska each year.

Many might be identified as “dying” before death arrives. Most of them probably want to die at home, but not very many do. Other choices for persons who are dying in Nebraska are compromised, as well. It’s not for lack of advice. Many Nebraskans know that we need to speak up about our goals for care as our health circumstances change. Unfortunately, state mechanisms to respect those goals are woefully lacking. For instance, persons outside the hospital—at home or in long term care--cannot be assured that their wishes to avoid resuscitation will be respected. That’s because Nebraska is one of the only states in the US without a standardized form for out of hospital Do Not Resuscitate (DNR) orders. Confusion abounds in our state regarding the concepts and documents related to advance care planning, such as living wills, proxy appointment, advance directives, DNR orders, Physicians Orders for Life Sustaining Treatment or POLST forms, and their purposes. No less than three definitions for terminal illness exist in Nebraska state law. The rural nature of our state makes access to health care challenging for many citizens. Nebraska has not approved Medicaid expansion, so health care itself is out of reach for many of our residents.

But it doesn’t end there. Nebraska is also unusual in that its county attorneys and sheriffs issue death certificates and make decisions about death investigations. They are not required to receive training to do this work. LB 1056, in refusing to acknowledge physician assisted suicide as a cause of death, will make death investigative work even more problematic and troubling.

Confronting Flawed Assumptions

My concern is that, so far, the state has yet to step up to its duty to protect and attend to the many needs of its most vulnerable residents: those who are approaching the ends of their lives. LB 1056 will not help most of them. The bill’s proponents assume that some basic requirements are already in place for Nebraskans who are terminally ill, such as a stable relationship with a trusted provider; medical coverage to see that provider; and freedom from depression along with the ability to make plans and give voice to them. The bill’s proponents assume that most Nebraskans, like themselves, will be expecting to control their life circumstances in death because they have done so for almost everything else in life. Many Nebraskans do not enjoy these privileges now. In fact most patients with life-threatening illness are not identified as being terminally ill or dying until shortly they actually die. Persons who are dying are a marginalized, even invisible group, and they need our help.

Recently I listened to the testimony of the eleven people who urged the members of the Judiciary Committee to vote in favor of LB 1056. Most of them told heart-rending stories of loved ones who died badly and of the suffering that they wished could have been prevented. These witnesses seemed to believe that if LB 1056 had already been part of Nebraska law, they and their loved ones would have been spared such horrors. They overlooked the fact that almost none of the situations they described would be covered by the bill. Indeed, LB 1056 cannot be the elixir that, if taken by the state, will by itself prevent the struggles and chaos that accompany the end of life.

"If this bill is passed, the state would be reinforcing the deepest fears of Nebraskans who face death: that they are an unwanted burden."

Supporting Real Solutions

Remedies and counteragents for bad dying do exist, however, and we should actively support them. Hospice and palliative care, while growing, are not yet universally available in Nebraska. Long-term care residents and other frail persons need assurance that their expressed desires regarding resuscitation will be honored during transport between facilities. Hospice families need to know that an intrusive sheriff’s visit will not be part of the immediate aftermath when their loved one dies.

Conversely, in LB 1056 the state gives itself the opportunity to wash its hands of these responsibilities to this cohort altogether, should its ill citizens decide to end their lives. If this bill is passed, the state would be reinforcing the deepest fears of Nebraskans who face death: that they are an unwanted burden. Rather than providing the overarching mechanisms that enable patients’ goals for care at the end of life to be honored (and even the patients themselves), Nebraska senators are letting their constituents know that, indeed, dying could not possibly be a meaningful or important time of life. They would be saying that persons with terminal illness are better off on their own, away from the rest of “us.”

Persons with advanced age and/or illness need real choices. They need to know that their decisions and their presence among us is of critical value. In order to enact real choice in end of life care, all Nebraska residents need

  1. Reassurance that they are treasured by their communities, regardless of their state of health
  2. Realistic, reliable communication from their providers regarding these choices and how they might change based on changing conditions
  3. Information regarding the treatment options and advance planning that is available to them at every stage
  4. Availability of palliative care and hospice and realistic access to these services, regardless of where they live in Nebraska.

By contrast, LB 1056 offers little or nothing to the vast numbers of dying patients looking for relevant, reliable, life-enhancing choices so that they can make meaning out of the critical time that remains to them.

Helen Chapple, RN, PhD, MA, MSN, CT is an Associate Professor in the Health Care Ethics programs at Creighton University in Omaha, Nebraska and the author of No Place for Dying: Hospitals and the Ideology of Rescue.