Right to Die: End of Life Rights for Oregon’s Aged and Terminally Ill

You’d want a hospital to do anything to keep you alive, right? Well, maybe not. The flippant answer of life = good, death = bad isn’t quite as easy as that. At the hospital, the default is to do anything it takes to keep you alive. That could mean sticking a tube down your throat into your windpipe so you can breathe, or another into your stomach to feed you. Sometimes the very sick are kept alive for months on end—even when there’s no chance of them leaving the hospital. If your wishes aren’t clear and you’re unable to communicate, you could end up in extreme pain or lose basic functionality.

Laurel James, a critical care nurse at Good Samaritan Hospital, said it’s a real issue.

“I feel so many patients come in here and they don’t know the education of what happens when they code [require resuscitation]; they don’t realize it’s going to be torture,” she said.

Consider the case earlier this year of an 87-year-old woman who collapsed at a senior living facility in California. A nurse called 911 but then refused to do CPR due to company policy. The elderly woman died. Horrible, right? Not according to James.

“That’s a natural death, if you’re 87 and you drop dead,” she said. “That is God’s way of saying, ‘Hey, it’s time.’”

When a PatientCodes

Most people simply don’t know what it’s like to resuscitate an elderly person.

“There should be commercials: they can hear the ‘crunch, crunch’ of the ribs breaking on a frail little old person,” said James.

With elderly patients, the force applied during CPR very often breaks their ribs—possibly even their sternum. In the hospital, sometimes elderly patients code, receive broken ribs, and then code again later in the night, which may mean more broken ribs and pressure on an already broken chest. Defibrillators, too, are used to restart the heart’s normal rhythm, though often this does not address what caused the arrest in the first place. Patients who do come back often succumb to death soon after or lose brain function. The rate of survival until discharge is about 15 percent.

“Yes, we can bring people back, but are they still going to be themselves? Will they be able to do what they enjoy in life? That’s often overlooked; most folks just want to live,” commented Ben Farlow, another critical care nurse at Good Samaritan.

“There’s emphasis on being alive, and there’s not any emphasis on being alive with a quality of life,” said James.

Additionally, a disproportionate amount of medical expenses are incurred during the last few months of a patient’s life, using extreme life-saving measures. Studies have correlated these more aggressive treatments with worse quality of death.

Death with Dignity

Oregon has one of the most progressive laws regarding end-of-life rights: the Death with Dignity Act (Measure 16). Passed in 1994, the act gives terminally ill patients the right to request a lethal dose of medication in the last six months of their lives. The patient must self-administer the medication, which is typically 100 capsules of barbiturates, pulled apart, combined, and consumed in a beverage or soft food like applesauce as a final ritual.

Each year about 115 patients statewide request lethal doses of medication through the Death with Dignity Act. In Corvallis the number is about six patients a year. Mostly, people apply for the lethal medication and then hold onto it for security.

Patients must be cognizant, in the final six months of their life, and able to self-administer the medication. This rules out some patients who might otherwise use it. Dementia patients lose the ability to make informed decisions in the last months of their lives. Patients with Lou Gehrig’s disease (ALS) can’t self-administer the medication because they’ve lost mobility in their arms.

“There are legitimate reasons why the law was set up this way,” noted Courtney Campbell, an OSU professor whose studies revolve around the Death with Dignity Act; he’s also on the ethics committees at Benton Hospice Service and Good Samaritan Hospital. “If you open it up to people who don’t yet have a terminal illness then you allow people with chronic illness, and that brings in a lot more patients. If you have a physician or nurse administer it there’s personal complicity issues.”

However, there’s a larger reason why the Death with Dignity Act is rarely used. Outside of state-run hospices, it’s not commonly presented as an option. A survey conducted by Campbell found that more than half of the hospices in Oregon don’t participate or only participate on a limited basis. Religious-based hospices generally oppose the act; some dissuade individuals from participating. Patients won’t be forced to leave these hospices if they express interest in the Death with Dignity Act. But the task of finding a physician will fall on their shoulders, and any physician can refuse to help them.

“If they’re living in an urban area they could go to another hospice; if they’re living in a rural hospice it could be more difficult to make that work,” Campbell said.

Other hospices are more progressive. Here in Corvallis, Benton Hospice Service maintains a neutral position. It’s considered a legitimate option, but patients have to bring it up themselves.

“We don’t usually present it as an option,” said Micky Shields, executive director at Benton Hospice Service. “People come to us and say they’ve looked into it; we connect them to resources to get more information. We want to really respect the patient’s wishes and rights.”

What happens to those who want to die but don’t qualify for the Death with Dignity Act? Some stop eating.

“They don’t have a terminal illness, but they find their quality of life not worth living any longer,” said Campbell, who noted that death by starvation isn’t as unpleasant as it sounds.

“People are able to experience a kind of peaceful letting go.”

Going Against the Hippocratic Oath

Finding a physician willing to write a lethal prescription isn’t always easy. For patients who need help, there are advocacy groups such as Compassion & Choices. According to its website: “Compassion & Choices is the leading nonprofit organization committed to helping everyone have the best death possible.”

At Benton Hospice Service, the physicians do not participate, and the nurses cannot attend the deaths even if requested.

“The hospice physicians, medical directors, will not be part of the prescription-writing process because they feel that compromises their own personal integrity,” said Campbell.

At heart, inducing death goes against the basic instincts of nurses and doctors—and the Hippocratic Oath: “I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect.” Yet consider the text that immediately follows this: “Similarly I will not give to a woman an abortive remedy.”

The latter is viewed as old fashioned today—will we eventually have a more progressive view of death? After all, it will happen to all of us. It’s not a negative thing, but an eventual thing. And when it comes, it seems wise to try and make it “the best death possible.”

Directive and the POLST Form

To avoid a lengthy, painful, and costly death in your old age—or to make any wishes known—consider filling out Advance Directive (living will) or Physician Orders for Life-Sustaining Treatment (POLST) forms. The latter, started by the Oregon Health and Science University in Portland, addresses specific circumstances in which a patient might not want treatment, such as resuscitation, ventilator, or feeding tubes. You can specify your wishes, such as do not resuscitate (DNR) or comfort care only (no aggressive life-prolonging treatments). Otherwise the decision will fall on your family or physician.

“Use the forms,” recommended Campbell. “If you don’t feel you can use the forms, then at least have a conversation with somebody you feel you can trust so they’re not put in a very difficult position where they have to make a decision and they don’t know what you want.”

For more information, visit http://www.polst.org.

by Jen Matteis