Improved provider communication benefits our patients, but there are invaluable benefits to providers as well.
There are times when most of us worry about the potential for causing our patients to suffer due to the ongoing treatments we are providing. This especially applies to those working in critical care units or oncology settings- where the interventions can be painful, and a fair number of patients die. And the burden on providers can feel greater if there is a question about the overall utility of the treatments in the first place. Over time, this contributes to work dissatisfaction and burnout.
My belief is that improved communication can help.
One of my most memorable patients.
Mr JT, 22 yrs old, sustained a devastating 95% TBSA 2nd/3rd degree burn from a work-related injury. Even with the expert care he received at the burn unit, his survival was often in doubt. As expected with this type of injury, JT required a multitude of procedures and operations and he developed complications including pneumonia requiring intubation/ventilator support more than once. Ten months after his initial injury, JT was finally discharged home before starting the next round of less extensive reconstructive procedures. This young man was well known and well loved by the entire burn unit staff.
Unfortunately, his respite from the hospital was short-lived. He was urgently readmitted to the burn unit due to sepsis, and JT again required ICU care and intubation/ventilator support. After extubation, the nurses and respiratory therapists worked very hard to try to keep his breathing strong, but it was a daily struggle. As is typical for someone with this type of devastating injury, pain control remained a constant challenge. But more concerning to his providers, JT uncharacteristically was refusing treatments; they felt like ‘he didn’t care’. Despite all efforts, JT’s work of breathing was again increasing, and there was concern that intubation was going to be needed yet again.
The Palliative Medicine consultation
Palliative medicine was initially consulted to help with pain management. While this was a key issue for him, what was also evident (to me) after talking with the staff was the overarching concern and suffering experienced by the entire medical team. They had cared for JT for many months and were quite attached to him. They knew the odds of death from his injury were very high, and they worried that their treatments were causing him great suffering. On top of this, they wondered if he even wanted these treatments any longer.
When I met with JT, we discussed his pain and also talked about his prior months in the burn unit. He acknowledged how hard it all was and he voiced that it was especially hard for him to see the impact on his mother- who was at his side every day. JT admitted that at times he wished “it all would just end”. And he honestly expressed just how much he particularly hated being intubated and dependent on the ventilator.
I explained to JT that his providers were quite worried about him. They worried that his respiratory status was continuing to decline and he might soon be at the point where intubation would be needed. Because this could happen quite suddenly, it was important to know ahead of time what he would want. Based on his feelings about his prior experience on the ventilator, I wondered whether he would want to again be intubated, to try to prolong his life? Or had he had enough of aggressive treatments. Would he prefer instead to be kept comfortable, without intubation, with the understanding that he would likely die?
JT's story
His answer was definitive: “put the tube in”.
Unbeknownst to his care team, he had a young son (living out of state with the boy’s mother) and JT was dedicated to doing whatever he had to do to stay alive. No matter the pain, no matter how many procedures- he was fighting to stay alive in hopes of being a father to that little boy. This information proved critical to the staff and allowed them to go forward working with JT with their worries (and burdens) lessened, as they were now confident that he did want these treatments, no matter what. They were confident that they were working with JT to achieve his goal.
JT did in fact require a short period of intubation, but he survived this episode, and was again discharged from the hospital. Over the next 2 years he required repeat short admissions for further reconstructive procedures. But during this time, he was able to obtain custody of his son and with the help of his family, be the parent he hoped he could be. Seeing JT with his son, and feeling the genuine love between them touched us all. Sadly, JT died very suddenly and unexpectedly at home several months after they had been reunited. But JT’s courage and determination left a profound imprint on everyone he touched.
Aside from the memory of JT as a person, what has stayed with me from this experience was that it didn’t really require a specialist to come along and ask JT these questions. Any of the providers who worked with him so closely could have done this. All they had to do was ask JT: “what do you really want?” For whatever reason, this most important of questions, was the one that no one quite knew how to ask.
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