When Melaina Eller, RN, MS, CNS, ACHPN, asks nurses in her end-of-life care classes whether they would be comfortable honoring a patient’s decision to stop treatment to prevent suffering, most, if not all, raise their hands. Many hands stay up when she asks about do-not-resuscitate orders, treating pain through the end of life, even withdrawing life support, such as feeding tubes, if the patient or family so requests.
Then she asks about relieving end-of-life suffering by sedating patients — sometimes putting them into a deep sleep — until they die.
The hands definitely drop, says Eller, a palliative care clinical nurse specialist at California Pacific Medical Center in San Francisco. Many nurses see this procedure, called palliative sedation, as too close to euthanasia for their comfort.
But unlike euthanasia, which is illegal and meant to cause death, palliative sedation is only intended to relieve suffering, never to hasten death, say Eller and other palliative care nurses. Research shows no difference in survival rates between sedated and non-sedated patients.
A Way to Stop the PainThe palliative care team at Kaiser Permanente Medical Centers in Hayward and Fremont, Calif.
Palliative sedation involves treating refractory symptoms in patients who are imminently dying, with no chance of recovery. Common end-of-life refractory symptoms include pain, agitated delirium, dyspnea, uncontrolled seizures, and existential or psychological distress.
Sedatives, such as benzodiazepines, are often used in combination with pain medications. Sedation may be heavy or lighter, depending on what it takes to control symptoms. The sedatives are not meant to mask symptoms that could be treated by other methods, and serve as a last resort.
People view it as a separate event, but it’s more of a continuum of care for symptom management, says Erin Crawford, FNP, ACHPN, a palliative care nurse practitioner at Kaiser Permanente Medical Centers in Hayward and Fremont, Calif. You would never want to go to palliative sedation if there’s an underlying condition you can reverse.
The American Nurses Association and the Hospice and Palliative Nurses Association consider palliative sedation an acceptable procedure for controlling refractory and unendurable symptoms in imminently dying patients.
Palliative sedation is rarely necessary, Crawford and Eller say. Most of the time, the palliative care team can control end-stage pain or discomfort without resorting to deep sedation. But sometimes, palliative sedation is the only way to ease the pain of dying, they say.
Not a Hasty Decision
Palliative sedation is only considered after extensive consultation with the patient, if possible; family; and members of the care team, which may include social workers, counselors, and a chaplain, as well as nurses and physicians. When palliative sedation is deliberately considered, ideally the care team talks to the patient, Eller says. If the patient can’t communicate, caregivers ask the family about the patient’s wishes.
Some of the most difficult cases involve patients who are not in physical pain, but show symptoms of distress because they are afraid of dying or have some unfinished business. Crawford recalls a case of a woman who could not stop tossing, turning, and crying out despite everything the care team had done to ease her symptoms. She was obviously anguished, but in and out of consciousness and unable to communicate, and the palliative care team was considering putting her into deep sedation.
The team members consulted with the patient’s family, who told them she had recently reconnected with an adult daughter she had put up for adoption years ago. The two had spoken on the phone, but the woman received her diagnosis soon after, and had never followed up with a reunion.
The family flew the daughter out, and she told her mother she forgave her, she had had a good life, and the mother could let go.
The patient just started to relax, and the restlessness started to go away, Crawford says. It was amazing.
Unfortunately, not all cases are resolved so definitively, especially those involving existential distress, Crawford says.
It’s like they are trying to run away from death coming to take them. You hate to see it as a palliative care provider. You hate being in that situation.
Despite the acceptance of palliative sedation among most hospice and palliative care nurses, studies show it can cause an emotional burden for care providers. One 2004 study of more than 3,000 nurses involved in palliative sedation in Japan showed 12% experienced palliative sedation as an emotional burden, 11% tried to avoid it, and 4% considered it pointless.
But Eller believes the concept of palliative sedation may cause more moral distress for nurses than the practice of it. In her experience, nurses saw it as a huge relief for themselves, the patient, and the family, she says. Witnessing suffering causes moral distress, too.