Palliative sedation offers alternative to fatally ill

Procedure, which has been part of hospice care since the 1960s, is legal across U.S.

Toward the end, the pain practically drove Elizabeth Martin mad.

By then, the cancer had spread everywhere, from her colon to her spine, her liver, her adrenal glands and one of her lungs. Eventually, it penetrated her brain. No medication made the pain bearable. A woman who had been generous and goodhumored turned into someone hardly recognizable to her family: paranoid, snarling, violent.

Sometimes she would flee into the California night in her bedclothes, “as if she were trying to outrun the pain,” her older sister Anita Freeman recalled.

Martin fantasized about having Freeman drive her into the mountains and leave her with the morphine drops she had surreptitiously collected over three months — medicine that didn’t relieve her pain but might be enough to kill her if she took it all at once. Freeman couldn’t bring herself to do it, fearing the legal consequences and the possibility that her sister would survive and end up in even worse shape.

California’s aid-in-dying law, authorizing doctors to prescribe lethal drugs to certain terminally ill patients, was still two years from going into effect in 2016. But Martin did have one alternative to the agonizing death she feared: palliative sedation.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness.

The medical staff at the acute care center in Long Beach where Martin was a patient gave her phenobarbital. Once they calibrated the dosage properly, she never woke up again. She died within a week, not the one or two months her doctors had predicted before the sedation. She was 66.

While aid-in-dying, or “death with dignity,” is legal in seven states and Washington, medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere.

Doctors in Catholic hospitals practice palliative sedation even though the Catholic Church opposes aid-in-dying. According to the U.S. Conference of Catholic Bishops, the church believes that “patients should be kept as free of pain as possible so that they may die comfortably and with dignity.”

Because there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative-care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said. But “if you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

Doctors wrestle with what constitutes unbearable suffering, and at what point, if ever, palliative sedation is appropriate. Policies vary from one hospital to another, one hospice to another, and one palliative-care practice to another.

The boundary between aid-in-dying and palliative sedation “is fuzzy, gray and conflated,” said David Grube, a national medical director at Compassion and Choices, which advocates for allowing people to make their own decisions about how they die.

But many doctors who use palliative sedation say the line that distinguishes palliative sedation from euthanasia is intent.

“There are people who believe they are the same. I am not one of them,” said Thomas Strouse, a psychiatrist and specialist in palliative-care medicine at the UCLA Medical Center. “The goal of aid-in-dying is to be dead; that is the patient’s goal. The goal in palliative sedation is to manage intractable symptoms, maybe through reduction of consciousness or complete unconsciousness.”

Others, including the National Hospice and Palliative Care Organization, recommend that providers use as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable.

Sometimes that means a light unconsciousness, in which the patient may still be somewhat aware of the presence of others. On other occasions it might mean a deep unconsciousness, not unlike a coma.

Whether palliative sedation hastens death remains an open question. Pain-management doctors say sedation slows breathing and lowers blood pressure and heart rates to potentially dangerous levels.

In the vast majority of cases, it is accompanied by the cessation of food, drink and antibiotics, which can precipitate death. But palliative sedation also is administered when the underlying disease has made death imminent.

There is widespread agreement that palliative sedation is appropriate for intractable physical pain, extreme nausea and vomiting when other treatments have failed.

Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does.

“You might be able to tell if their blood pressure goes up. Same with their pulse,” said Nancy Crumpacker, a retired oncologist in Oregon. “And you read their faces. If they are still bothered somehow, it will show in their facial expression.”

Harlan Seymour didn’t need to rely on those signs after his wife, Jennifer Glass, received palliative sedation in 2015. A nonsmoker, she had metastatic lung cancer and faced a miserable death from suffocation brought on by fluids filling her lungs, he said.

She desperately wanted to die but aid-indying, which she advocated for, wasn’t legal yet, he said. Instead, she received palliative sedation.

“The expectation was this cocktail would put her into a peaceful sleep and she would pass away” within a day or two, Seymour said. “Instead, she woke up the third night in a panic.”

Doctors raised her dosage, putting her into a deep unconsciousness. Still, she didn't die until the seventh day. She was 52. Seymour wishes aid-in-dying had been available for his wife, but he did regard palliative sedation as a mercy.

”Palliative sedation is slow-motion aid-indying,” he said. “It was better than being awake and suffocating, but it wasn’t a good alternative.”

Michael Ollove is a reporter for Stateline, an initiative of the Pew Charitable Trusts.