Issues to consider when ending life support
By William Hoffman
Dying patients in the intensive care unit: forgoing treatment, maintaining care
Atlanta—At the session, “Ending Life Support,” panelists explored some of the difficulties of ending life-support measures and the tough decisions that hospital- or hospice-based caregivers must make, usually in conjunction with the patient’s family members, to ease the dying process.
Once a patient or the patient’s family decide to withdraw or withhold treatment—and 75% of U.S. hospital deaths occur after such a decision, panelists said—physicians generally follow a pattern that helps them gradually retreat from further intervention.
Generally, no new interventions are begun . Specialists usually end their own interventions. Renal specialists, for example, normally take responsibility for stopping dialysis.
Panelist Kathy Faber-Langendoen, MD, an oncologist and general internist at State University of New York-Syracuse Hospital emphasized respecting patient wishes and goals or, if incapacitated, their previously expressed preferences. She said that when multiple interventions are in place, physicians typically remove the most burdensome interventions first. Physicians usually decide which interventions to remove based on whether or not their removal will delay death. The patient’s ability to communicate is taken into account, and caregivers try to avoid inflicting pain.
Throughout the process of withdrawing support, Dr. Faber-Langendoen said that physicians and caregivers should remember that most dying patients want to see explicit concern about their comfort, and they want to end interventions that don’t directly contribute to that comfort.
Feeding, hydrating and ventilation are the most common end-of-life intervention controversies, panelists noted. Patients’ families and physicians agonize over discontinuing food and water in part because they may fear it brings suffering and death.
Panelist Steven Pantilat, ACP-ASIM Member, director of inpatient palliative care services at the University of California, San Francisco, pointed to evidence that discontinuation of food and fluids produces a euphoric ketosis that prevents suffering. Dr. Faber-Langendoen, however, cited conflicting evidence from a study she published that concluded, “patients able to swallow without aspirating should be offered fluids and food as part of comfort care.”
Discontinuing ventilation poses some of the most difficult problems. Prolonged terminal-weaning allows titration of drugs to control dyspnea, maintains an airway for suctioning and permits a greater emotional distance between the act of withdrawal and the patient’s death. It may prolong the dying process, however, leading family members to believe survival is still possible, and it precludes any chance of verbal communication.
Rapid terminal-weaning, on the other hand, is less likely to prolong the dying process. However, verbal communication remains impossible because the patient usually dies quickly.
Extubation frees the patient from unwanted technology, but if anticipatory sedation is not administered, the patient may suffer dyspnea. Family members may also interpret noisy breathing as suffering.
Panelists did not recommend one ventilation removal strategy. Dr. Faber-Langendoen said that choosing a removal method requires examining family perceptions as well as caregiver practices.
Change of location
Dr. Pantilat suggested that physicians consider moving patients out of the ICU. “Palliative care is not all about morphine and holding people’s hands,” he said. Rather, it can be a distinct improvement in a terminal patient’s quality of life.
Dr. Pantilat said that some dying patients look so much better after being transferred from the ICU to a palliative care unit that family members wonder if the patient is still terminal.
Palliative care offers dying patients and their families a positive alternative, Dr. Pantilat explained. Rather than keeping their loved one in an ICU where doctors and nurses seem to take things away—no more chemo, no more treatment—palliative care units can be comfortable settings with a touch of home, and more liberal visitation for friends and family.
Finally, panelists gave some advice about communication. Dr. Faber-Langendoen said that two-thirds of families of ICU patients surveyed said they were satisfied with the level of communication with physicians. She noted that one-third of surveyed families, however, said they’d like physicians to provide a better description of the dying process.
Dr. Faber-Langendoen also noted that surveyed families also said that physicians need to provide more general guidance about their dying relative (29%), a better description of the ventilator withdrawal process (24%), an estimated time of their relative’s death (19%), and assurances that their relative was comfortable (5%).
Dr. Pantilat said he spends a lot of time explaining the dying process to his palliative care patients. Understanding Stokes breathing, or the death rattle, usually calms most family members, because the dying process becomes more understandable. “The unknown is really frightening,” he said.
William Hoffman is a freelance writer in Fairfax, Va.
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