At Last, an Alternative to a Painful Death
By Abigail Trafford
Tuesday, October 10, 2000
She was a stunning blonde who liked to wear red, who worked in a hospital for the poor, loved hard, had many friends and, at age 49, was diagnosed with pancreatic cancer. After treatment failed, she asked her doctor to help her kill herself.
He told her he couldn't do that. But there were other options. If the pain became unmanageable, he could put her to sleep. "It's not to kill you. It's to relieve your suffering by allowing you to sleep," he said.
In the end, Barbara Faden, 50, went to sleep and had a good death. Doctors call it "terminal sedation." She was given a Valium-type sedative (to sleep) along with opioid medication (for the pain) and slipped into a coma. Her family kept vigil. About a week later, on Aug. 13, 1999, she died. "We sat in the room. She never liked to be alone," says her mother, Cynthia Zirinsky. "She was smiling. She wasn't scrunched up in pain as she had been all year. She was beautiful."
"Terminal sedation" is the compromise in the furor over physician-assisted suicide. The option works for those who oppose euthanasia but want to ease the suffering of their dying patients. It works for those who believe that helping people die is a part of providing quality and compassionate care.
It works for patients who are afraid of being trapped in medical hell at the end of their lives. It's quiet, private, far removed from the headlines or how-to manuals on suicide. It's legal: Patients have the right to refuse treatment and physicians can administer high doses of pain medications even if the drugs have a "double effect" of hastening death. It's moral: The primary goal is to relieve suffering, not to take a life.
Terminal sedation is emerging as a middle ground in the debate over end-of-life care. It has always been an option behind closed doors, but now the term is out in the open. "It's emerging as an acknowledged middle ground," says Joanne Lynn, director of the Center to Improve Care of the Dying in Arlington. "It's something we talk about."
After her diagnosis, Barbara Faden moved in with her parents. She knew her prospects were grim but she opted for two rounds of aggressive chemotherapy. The whole family clung to the hope that if chemo could just keep the cancer at bay, a cure might be developed in time. But the treatment made no dent in the cancer. It was also brutal. "She was so sick for so long," recalls her mother. "Every breath was a pain. She couldn't drink water."
She wanted to die. She looked into the Hemlock Society and asked everyone who visited her to bring her some pills. "I got scared," says her mother.
The turning point came when she talked to neurologist Russell K. Portenoy, chairman of pain medicine and palliative care at New York's Beth Israel Medical Center. He told her: "I will promise you that the pain will not be a question for you anymore. I will help you by not having you feel any discomfort."
After this conversation, she was more at ease. She trusted Portenoy, who had been managing her pain for months. When she entered the hospice program, she knew terminal sedation was an option and she wouldn't have to suffer a painful death.
Doctors estimate that between 5 and 15 percent of dying patients are like Barbara Faden. Their suffering cannot be controlled with medication. Even with high levels of opioid drugs, they are in pain. They may gasp for breath, become agitated or delirious.
No one knows how many dying patients are given terminal sedation. No one likes to talk about it. But that is changing.
Terminal sedation is not easy to do. It requires a skilled pain management team to adjust the dosages of sedatives and pain relievers. Some patients, for example, want to be awakened for a visiting relative and then go back to sleep. The sedation may be deep, like anesthesia. Or lighter: Patients are unconscious and cannot speak, but may flutter their eyelids in response to touch or words.
Terminal sedation also requires a lot of talking--constant communication between the patient and the medical team over a period of time, a good dialogue with the family and open discussion among the staff.
In the hospice unit, Barbara Faden's face turned the color of mustard. Nearly a year had passed since her diagnosis. She'd had time to be with friends and family. Her parents cared for her night and day. Her daughter, brother and sister were constant companions. A former husband came to her side. As the cancer battered her body, she kept her humor.
When the pain became uncontrollable, she entered the hospital for the last time--and went to sleep.
Most of us fear a painful death. But terminal sedation is an option we can all demand. Even if doctors are uncomfortable talking about it--or doing it--the patient has a right to what has at last become accepted as good medical practice.