How and when to end life-sustaining treatment

Compassion finds a home in clinical management

Consider this scenario: A patient’s family decides to disconnect life support, but the medical staff strongly urges them not to be present when the patient dies. The patient will feel pain when she is taken off the ventilator, the staff warns. She will gasp for breath. If her feeding tube is disconnected, as her living will requests, she will experience more pain and distress. This death will be too horrible to watch.

Accepted as a frightening truth by a large segment of the population, this description of what happens when life-support measures are withdrawn is largely a myth. Unfortunately, it is often sustained by well-meaning medical professionals in hospitals every day, says Meg Campbell, RN, MSN, CS, a clinical nurse specialist at Detroit Receiving Hospital. What’s worse, this misconception about end-of-life treatment keeps many professionals and family members from carrying out patients’ wishes, Campbell says. "It is difficult for us to provide more humane care for the dying patient, because there is a paucity of good information on how to decide when treatment is no longer appropriate and how to actually withdraw it," she explains.

Campbell and several colleagues recently developed a model practical approach to withdrawing life-sustaining treatment.1 The guidelines start with an emphasis on defining the individual goals of patient care. "Is the goal of care to prolong life as long as possible, not to prolong life, or to make the patient as comfortable as possible?" she asks. Intervention will depend on the goals established by the patient and/or family in conjunction with the health care team.

This model of advance or ongoing care planning begins with a candid discussion between the physician and patient/family about diagnosis and prognosis. The pros and cons of all aggressive treatment should be evaluated daily, she explains.

The model for treatment should be guided by the patient’s own report — verbal or nonverbal — of the presence and degree of distress. Restlessness, agitation, and moaning, for example, often are signs of the patient’s need for better pain control, Campbell says.

The predetermined goals dictate when life- sustaining interventions should be withdrawn. A skilled physician can accomplish terminal weaning and extubation from a ventilator with little or no patient distress, says Campbell.

Before weaning or withdrawal from ventilation, the attending physician, nurse, and other involved staff should discuss the procedure, strategies for assessing and ensuring patient comfort, and the patient’s expected length of survival. Frank discussion should be held with the family. All monitors that do not actively contribute to the patient’s comfort should be removed, Campbell and colleagues recommend.

There is no preference for terminal weaning vs. extubation, she says. However, all neuromuscular blocking drugs should have been discontinued before ventilator withdrawal since they have lost their therapeutic benefit. Family members should be told that involuntary movement or gasping by the patient does not reflect suffering if the patient is in a coma or properly sedated.

Helping with the dying process

Clinicians almost always are reluctant to discontinue artificial nutrition and hydration, even though these treatments often result in distress and discomfort from fluid overload. Campbell points out that the myth of "starving a patient to death" is debunked during hospice care, when patients gradually withdraw from eating and are comforted with a wet cloth or ice chips. "We have forgotten what it is like to have a grandparent die in the home," she says.

When physicians and other team members are able to handle the technical aspects more effectively, they become more comfortable with staying at the bedside and offering solace to family members, she says, adding that helping families through the dying process is invaluable to them.

"Understand how difficult uncertainty is for the family, interpret for them any signs that indicate the probable length of time remaining, and offer practical assistance while gently reminding family members of the impossibility of firm predictions."

Reference

1. Brody H, Campbell ML, Faber-Langendoen K, et al. Withdrawing intensive life-sustaining treatment — recommendations for compassionate clinical management. N Engl J Med 1997; 336:652-656.