Planning Can Prevent Suffering

By Jess Bartley

The patient was a man I cared for in the intensive care unit.
 He had suffered an illness several years prior that left him unable to speak or swallow properly. Over time, he became so weak that food would go into his lungs instead of his stomach, making him susceptible to pneumonia. 
Treatment proved painful for him, and he would push his nurse’s hands away as she tried to help him. It was clear that the patient did not want to continue life-sustaining treatment and that he was suffering as a result of our interventions. 
But he could not communicate and had not completed an advance directive, a document that would have guided our decisions for his care. Normally, “all interested parties” would convene and decide what they think the patient would want. However, none of this patient’s family wanted to be his decision-maker, so the court had appointed a legal guardian. 
Nevertheless, the patient’s adult children visited him daily and grew concerned that their father may not want to proceed with aggressive treatment. However, legally, we could only respond to directives from his guardian who had not been to visit. 
Time was of the essence. The patient was clearly suffering, so I called his guardian and explained, “He is struggling to breathe and will not live unless he is put back on a ventilator. But we feel that he is resisting our aggressive interventions. We need you to sign a ‘do not resuscitate’ order.”
“I think that he wants to be resuscitated,” she replied. “And the family hasn’t been involved with him at all in the last year.” 
“That may be the case, but they’re here now and are very concerned that he’s suffering. I’m not comfortable pursuing aggressive care since he appears to be refusing it.”
“I’m not making him a ‘do not resuscitate,” she replied.
“Could you please come in to see him?” I asked. “I think you would change your mind if you saw how much he’s suffering.” 
“I can’t right now,” she responded, ending the conversation. 
Many guardians are dedicated and caring, but these types of discussions are not uncommon even when dealing with a family member. But end-of-life decisions don’t need to happen at the end of life. 
People can make these choices for themselves before they’re sick. Advance directives are available online and are simple to complete. They allow us to specify what type of care we want to receive in specific situations. And they ensure our wishes will be respected. 
Eventually, my patient’s guardian came to the hospital and agreed that additional care was futile and that we should focus on keeping him comfortable. So much suffering could have been avoided had the patient made known his wishes in advance.

Jess Bartley, MD, has graduated from the School of Medicine and now works at Kaiser Permanente in Internal Medicine.