Drawing the line between hope and false expectations

By Megan Lippe | 05/03/2017

We must recognize when care has become futile and STOP.

Doctor comforting familyAs nurses, we see it all too often. A young person full of life and big dreams suddenly becomes critically ill. Despite the best efforts of the healthcare team, the patient’s condition does not improve. We don’t want to admit it, but we know he or she will not survive much longer. Whether the culprit is cancer, trauma, or infection, watching someone decline rapidly causes profound grief for everyone who knows and loves that person.

As healthcare providers, we are not immune to feeling stress or anguish in these situations. We develop relationships with families. We feel profound sadness for children losing a parent at a young age. We grieve alongside parents who will outlive a child. Through it all, we try to help the family maintain hope that the patient will recover and thrive.

Megan LippeI’ve been there
For years, I worked as a critical-care nurse, walking families through tragic situations. I experienced sadness, anxiety, stress, compassion, empathy, and many other emotions. Each day, I did my best to create a positive outlook on the patient’s condition. I tried to encourage families not to lose hope. And yet, through a recent series of events in my own life, I have experienced firsthand the devastation associated with false hope.

A dear family friend fell ill to pneumonia. For reasons the healthcare team couldn’t explain, she became septic, developed acute respiratory distress syndrome (ARDS), and did not respond to any treatments. As a nurse, I saw the reality of the situation. As one who loved the patient, I didn’t want to admit it. Although I had training and experience gained from nursing, I, like my family, was faced with extreme grief and fear. Throughout our friend’s care, the healthcare team told family and friends that she would most likely survive. Even as her condition worsened, the team continued to support everyone’s hope for a full recovery.

Days passed, and the situation became increasingly bleak with minimal chance of survival, but no one was willing to utter the word death. No one was willing to inform the family that further treatment would only prolong the inevitable. Instead, there were more treatments, more medications, more surgeries, and more false hope. We could all see it, but no one was willing to admit it: Our loved one was going to die.

More training is needed
As healthcare providers, our education focuses on cures and helping people live with chronic conditions. This education is important, because we play an integral role in maintaining and restoring health and wellness. But we aren’t taught how to handle death. Oh, we might get a lecture about end-of-life care. We might complete a case study or two. We might even perform a simulation. It’s not enough. We aren’t trained to help families and patients face the reality of impending death.

Some of us have the innate ability to handle these situations with grace, professionalism, and class. But many of us are overwhelmed by emotions and stress when caring for patients who are unexpectedly and critically ill. We don’t know what to say. How can we possibly tell family members that their loved one is going to die? How can we do anything but continue to offer more and more options until there are none? If we give up hoping for survival, how can we not feel that we have failed the patient?        

We need to recognize that in situations such as the one I’ve described, offering peaceful death is an option. Helping the patient, families, and friends transition from hope for survival to hope for peace can be as important and meaningful as offering more treatments. When it becomes clear that further interventions will not help the patient, we must give ourselves permission to stop offering more.

Families look to healthcare providers for answers. If more options are provided, families will cling to them with every fiber of their being. Just because it can be done doesn’t mean it should. We need to remind ourselves that we possess knowledge and expertise the family doesn’t have. We discern and understand implications of care we provide; the family doesn’t. We must recognize when care has become futile and STOP. And, despite the pain, we must be OK with this.          

Helping families face reality is part of caring
Every patient brings a unique situation that must be carefully examined and addressed. Every family brings dynamics that must be negotiated and managed. Often, we are confident our treatments will work. In those situations, our job is to help family, friends—and the patient—maintain hope for survival and a good outcome. We can allow ourselves to feel pride and satisfaction when a patient fully recovers and is able to return home and resume life. We’ve done our job well.

But we must remember: Every person will face the end of life. And while the timing and circumstances may be less than ideal, we, as healthcare providers, must also allow ourselves to consider our job well done when, instead of instilling false hope, we help families face reality and manage expectations.

We can allow the patient to die surrounded by family and friends, free of futile interventions and therapies. With care and compassion, we can help families grieve, knowing they did what they could for their loved one. Finally, we can allow ourselves to take pride in facilitating a peaceful death.

Megan Lippe, PhD, RN, is assistant professor at The University of Alabama Capstone College of Nursing in Tuscaloosa, Alabama, USA. Her research focuses on palliative and end-of-life care education, and she has developed high-fidelity simulations that include withdrawal of care.

 

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  • hope
  • false expectations
  • empathy
  • death
  • critical care
  • compassion
  • ARDS
  • acute respiratory distress syndrome
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