THE OREGONIAN (Sunday, February 18, 2001)
By Erin Hoover Barnett of The Oregonian staff
Sixteen people died by physician-assisted suicide in 1998 and another 27 in 1999. And when the Oregon Health Division releases its third annual report on the practice Wednesday, little if any growth is expected in the number of cases, say experts outside the health division.
But there is a larger issue behind the controversial Oregon Death With Dignity Act and the few who use it. It’s the way the law and related public policy have more starkly defined the once broad, gray area that is end-of-life care and how this legal framework has affected everyone’s final days.
And three years into this state’s grand experiment with assisted death, the quality of care for all dying Oregonians is decidedly mixed.
Oregon remains a national leader in the use of morphine, hospice care and advance directives, documents that guide end-of-life treatment. Yet one-third of Oregonians die in moderate to severe pain, according to families surveyed after the death of a loved one. The same survey found that in hospitals, as many as 57 percent of patients have died in pain.
Many factors likely contribute to these numbers, including, in some cases, the possible misinterpretation of a loved one’s pain by the family. But the persistence of pain also is playing out against an increasingly complex backdrop of medical regulation.
On one end is the fear of overtreating pain.
Some doctors are loathe to aggressively treat pain in the dying in case the medication depresses breathing and possibly hastens death. But administering drugs is legal — even if the treatment hastens death — so long as the intent is to relieve suffering, not kill the patient. It’s a fine line and one that family, other caregivers and regulators may mistake for euthanasia or assisted suicide.
As Congress has tried to block Oregon’s Death With Dignity Act by highlighting this fine line, many doctors have become nervous. A bill debated in the U.S. Senate last year sought a delicate balance between investigating and penalizing the use of federally controlled drugs for assisted suicide or euthanasia, yet encouraging their use to treat suffering, even if it hastens death. The bill never reached a vote on the Senate floor.
On the other end, hospitals and doctors can now be sanctioned for undertreating pain.
The Oregon medical board in 1999 became the first in the nation to discipline a doctor for undertreating several patients. And this year, the Joint Commission on Accreditation of Healthcare Organizations began requiring the hospitals it accredits to adequately assess and treat all patients’ pain. Hospitals need the accreditation to get Medicare and Medicaid payments.
Dr. Ken Brummel-Smith, medical director of Providence ElderPlace, which cares for people with dementia, says he feels confident giving adequate pain medication. But he sees the challenges for physicians less trained in this area.
“Doctors are really caught right now. They get such mixed messages from the public and the government that it’s just hard for them to know what to do,” he said. “In general, when you don’t know exactly what to do, people tend to not do much.”
Dr. Jocelyn White, who consults on palliative-care cases at Legacy Emanuel and Good Samaritan hospitals in Portland, said the congressional debate about Oregon’s law has not kept her from aggressively treating pain. But, she said, “I do know a lot of physicians who are uncomfortable. The main issue is confusion. They really want to do the right thing. But they’re getting conflicting messages.”
Sometimes the result can be inadequate care.
Dr. Susan Tolle is director of the Center for Ethics in Health Care at Oregon Health Sciences University, which conducted the survey on patients’ pain. She thinks Oregon’s assisted-suicide law has emboldened people to demand aggressive treatment, exacerbating some doctors’ fears of overstepping the line.
She pointed to a Portland-area case described to her by a patient’s son. His hospitalized and dying mother began showing signs of distress despite her medication for pain and anxiety. Disturbed, her son asked her doctor to do something.
“I don’t care if she dies 10 minutes sooner,” the son told the doctor. But the doctor said he could not give any more medication. The son perceived that the doctor feared risking the appearance of hastening her death, particularly given the son’s blunt edict. The woman’s medication was not increased, and her son felt that she died suffering.
“Many families are more open about acceptance of dying and more aware of their loved ones’ right to comfort care,” Tolle said. “Yet health care institutions are much more aware of where that bright line is between comfort and the appearance of deliberately hastening death and will not cross that line. The result is, in some cases, less pain medication is being given in those final days of life.”
Commission vs. omission
On the Oregon coast, Karen Murphy, a hospice social worker, described a chronically ill, hospitalized woman whose condition went downhill. The doctor wrote liberal orders for medication to ease suffering. But when Murphy visited, the woman was struggling to breathe.
The attending nurse later told Murphy that she hesitated to give the woman more medication for fear she would contribute to her death. Indeed, when the nurse did increase the woman’s dose, the woman died soon after.
The nurse’s actions were appropriate, Murphy said, but it doesn’t always feel that way. As Brummel-Smith said, “The error of commission is greater than the error of omission in the moral view of our work.”
Alina Egerman, a nurse and counselor with the Supportive Care Team at Providence Portland Medical Center, had a different take on a similar situation.
A dying, hospitalized man seemed to be lingering and suffering, worrying his nurse. The patient was getting an aggressive blend of medications. Egerman, whose team consults on comfort-care issues in the hospital, said caregivers must not mistake their own anxiety for what could be a natural part of dying.
“There’s a fine line between providing adequate comfort and unnecessary medication,” Egerman said. “I think we’re really good about making sure the patients are really comfortable and not overmedicating just because we’re uncomfortable with their suffering.”
But although some medical caregivers feel pressure from the “don’t over-treat but don’t under-treat” messages, most agree that education about the appropriate path is the answer.
And no one bemoans the attention now given to end-of-life care, attention largely jumpstarted in Oregon by the passage of the Death With Dignity Act.
Every major health system in the metro area and elsewhere in the state, for example, has developed or is developing a palliative-care team to help doctors and nurses with the delicate dance that is end-of-life care. And Legacy’s White says she’s seeing medical residents — tomorrow’s doctors — realize that their work is not done when a patient can no longer be cured.
“It’s like a cultural shift,” White said. “Everybody is on board. This is nice.”