October 6, 1997
Volume 50, No. 7
For several years I have worked with people who either have experienced sudden cardiac arrest or have been diagnosed with a life-threatening, irregular heart rhythm.
Sudden cardiac arrest claims the lives of over 300,000 Americans each year and is responsible for about half of all cardiovascular deaths annually in the United States. Each year, approximately 100,000 hospital admissions are due to ventricular arrhythmia. Unfortunately, even the most efficient out-of-hospital emergency resuscitation systems fail to rescue more than 30 percent of sudden cardiac arrest victims. So identification of those at risk and prevention are an important goal.
The very fact that people live longer makes them more susceptible to serious irregularities in heart rhythm. Ventricular fibrillation is a quivering, chaotic rhythm in which the heart is unable to adequately pump blood, resulting in oxygen deprivation in the brain and vital organs. Recurrent ventricular arrhythmia can be treated with drugs, an internal cardioverter defibrillator (ICD) or some combination of both.
ICDs, which have about a 98 percent first-year success rate, are quickly becoming the preferred treatment. ICDs work by pacing the abnormal rhythm back to normal or by "shocking" the heart and terminating a lethal rhythm. The latter is not an "invisible" sensation to patients. They feel a strong jolt that serves as a blatant reminder that they have had another close call.
This technology has extended the lives of many who would have previously succumbed to sudden cardiac arrest. As a nurse and researcher, I have been interested in the person living with and ICD.
ICD patients and their families need to learn much to manage their recoveries and some need to make lifestyle changes such as avoiding driving. Family members usually are referred for CPR training and must confront all the issues that surround having to face the vulnerability and potential resuscitation of a loved one.
After observing patients and families in the clinical setting, we noticed that some seemed to incorporate these changes and adapt very well. Others seemed to self-restrict activity and have significant emotional distress.
Our data showed that how patients interpreted the meaning of their illness and they types of behaviors they used to cope were the strongest predictors of emotional outcome. The more threatened and out of control they felt and the more they avoided dealing with the illness and its treatment, the greater the negative emotion.
Themes from ICD patients and families who exhibited less distress provided insight into effective ways of coping. For some, their brush with death led to a greater enjoyment in family and greater spiritual meaning in their lives. Learning as much as possible about the ICD and its uniqueness also increased a sense of control and decreased the perceived threat. A focus on humor, especially in relationship to shock experiences, was helpful to some.
The data gleaned from our study paint an interesting picture about health care outcomes and new ways to improve them. If we are truly concerned with emotional outcome, why not simply prescribe a mood elevator or antidepressants as an easy fix? For one thing, some of these drugs have adverse side-effects that worsen the disease process and may have negative interactions with certain cardiac drugs.
But merely to "fix" the outcome perpetuates a diagnose-and-treat health care paradigm without regard for the intervening processes of adaptation to illness. If we are truly concerned about psychological response to illness-an important aspect of quality of life-then we need to move to a new paradigm in which affective states and functional outcomes also are viewed as important and tracked not only in the hospital setting but throughout recovery and at home as well.
We need to reframe disease self-management so that patients are taught not only "do's and don'ts" but a whole process for self-care-how to manage symptoms, how to access information, how to anticipate symptoms, how to know what can be controlled and what cannot, and what are effective coping behaviors.
Traditionally, this type of patient education was the role of professional nurses in the hospital setting. But as lengths of stay have decreased, so has access to professional nurses. It is not possible to tell ICD patients and their families all they need to know in such short time frames. In our study, which spanned three years, we saw lengths of stay reduced from 10 days to three-primarily due to improved technology and surgical procedures. But we did not see a difference in emotional needs or outcomes.
Current follow-up care involves returning to the clinic and telephone monitoring. It is likely that we could improve outcomes further by going beyond these traditional steps to develop a different system for preparing patients for recovery and self-management that takes advantage of the technological capabilities that can link patients to information and to one another. We can also identify and test interventions that address quality of life and psychosocial issues.
At a recent interdisciplinary conference I attended, a well-respected colleague wondered why providers should be concerned about emotional distress, lack of sleep and other post-trauma symptoms in ICD patients. He suggested that these are minor irritations that come with the territory of health care treatment and life in general. Who was going to pay for such things as teaching coping skills? Calling for more follow-up care and self-management interventions was like saying "every nail deserves a hammer," he said.
Some of these points are well taken. But I suggest we look for those nails that deserve the hammer. As managed health care systems evolve and become more sophisticated, they will need to foster greater patient and family self-care and document emotional and functional outcomes of care.
What would health care outcomes look like if we had a coordinated, organized system that valued quality of life parameters as much as mortality and readmission rates; actively promoted self-management as its responsibility; took proactive steps to prevent suffering; focused on patient response to their health care; changed ways of doing things along with changed technology; and actually found ways to put people and families back together again after serious illness?
As more life-saving technologies emerge from every medical discipline, addressing these types of recovery issues will be of even greater importance in the future.
Sandra Dunbar is professor of adult health nursing at the Woodruff
School. This essay is excerpted from her lecture, "Challenges Created
by Lifesaving Technology," at The Great Teachers Lecture series on
Sept. 9, 1997.
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