I recently supported a dear friend who was faced with caring for her terminally ill husband.

The conversations I had with my friend ran deep, and the main challenge was supporting her in determining the prognosis clearly from the various doctors and providers. The questions for her to answer were: Why is he still on the ventilator? What is the prognosis? And what did he want medically at the end of life?

It turns out he wanted all medical-technical interventions possible if there was hope for his recovery and some quality of life. But what was not being conveyed clearly here by the providers was the “hope of recovery issue.” After several days, the hospitalist eventually agreed the care provided was futile, and my friend’s husband passed away peacefully once the ventilator was removed.

My friend stated, “I didn’t realize how the machines were really keeping him alive.”

While we know that technology use can save lives, we also know of the pain and suffering it can cause. For instance, Johns Hopkins recently reported that fully 30 percent of people intubated in the ICU setting suffer from PTSD post-extubation. When people state that they want “everything done” for them if there is still hope, providers need to consider that folks may really not know what they are consenting to. Their knowledge and experience with end of life technologies is often limited to what they see on TV or in the movies, the heroic efforts, the beautiful deaths, the rapidly unfolding peaceful or positive conclusions that bare little resemblance to the reality of suffering from how we generally provide end of life care.

It remains true today that approximately 60-70 percent of the population in America will die in the hospital or other medical facility, even as we know 80 percent of folks would prefer to die at home. Nurses need to examine their role in this process. Although it may be “easy” or “correct” for nurses to go along with doctors’ orders and provide futile care day after day, at what point do nurses decide to do things differently, to step fully into the role of patient advocate?

Although nurses can’t divulge specific prognosis, nurses can discuss the limitations of technology. Nurses can sit with families and support them to have those challenging conversations with doctors: “What is the plan of care, what is the likely outcome, is the technology use prolonging life without hope of recovery, is the technology use painful or likely to cause PTSD, what will the quality of life be like if my loved one does survive, and are they suffering from the use of this technology?”

Nurses and doctors can become more comfortable with the types of conversations families and patients need to have as they approach end of life. Reflecting on the limitations of technology and the suffering that it can cause, we can be honest about the strengths and limitations of our efforts, and the impacts of technology use on quality of life at end of life.

 

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