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At the Juncture of Life and Death, It Matters That You Are There

In addition to staggering the patient’s family, the sudden nature of severe trauma can likewise leave critical care nurses bereft of the opportunity to have eased the patient’s passage from life to death. Denied both the chance to help save a patient’s life and to help support their transition to death, it is easy for acute care nurses to view their work as failure. Between these 2 patient populations—that is, those returning to a full life and those teetering on the cusp of death—lies another group of patients whose insights and introspections offer critical care nurses both direction as well as solace in what is important to them as they approach death. When there is time to prepare for death, what aspects of care do patients identify as most important to them? Which of these most important aspects of care can a critical care nurse provide? Although some answers to these questions are a few years old, they are worth dusting off and remembering, especially when there is no time to obtain fresh answers.

In late 2000, Steinhauser et al¹ reported the findings of a study undertaken to better understand what patients, families, physicians, and other healthcare providers considered important at the end of life. The research team first conducted a series of focus groups to generate a list of factors that these groups considered as important attributes for end-of-life care. Then, using a cross-sectional, stratified random national survey, a sample of 340 seriously ill patients, 332 recently bereaved family members, 361 physicians, and 429 other healthcare professionals (nurses, hospice volunteers, social workers, chaplains) were surveyed; they were given a questionnaire and were requested to rate the relative importance of 44 attributes (on a 5-point scale) to quality care at the end of life. If we focus very briefly on examining findings from the patients’ perspective, some helpful and hopeful results emerge to inform us.

Not surprisingly, there was wide variance in importance rankings on 10 survey areas, including use of "all available means" regardless of the prognosis, connection to machines, and dying at home. Somewhat surprisingly, more than 70% of the participants from each of the 4 subgroups rated 26 of the 44 items as very important at the end of life. These items included factors such as being free of pain, shortness of breath, and anxiety, resolving unfinished business, and being treated as a whole person. Among the 26 factors with greater than 70% concurrence, the 5 most important factors for patients included the following:

#5. Having someone who will listen to them

#4. Knowing what to expect regarding their physical condition

#3. Having a nurse with whom they feel comfortable

#2. Naming someone to make decisions for them

#1. Being kept clean

For many patients confronting death, then, remember that the features they deem as most important require no extraordinary means or complex technology. What they do require is someone who cares enough to listen, someone who will keep them informed of their condition, someone who can help them designate a decision maker for their remaining affairs, and someone who knows how to cleanse the body as well as the spirit. The caregiver patients identify as most important at this ultimate juncture between life and death is . . . a nurse.

Reference

1. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284:2476–2482.[Abstract/Free Full Text]

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