Because this is so important, it's getting repeated...
Start the conversation with something along the lines of “what is your understanding of your current condition?” so you know what your patient/family understands. And this doesn’t just apply to the first interaction as illustrated by the following example.
a Patient- one critically ill in the intensive care unit .
Mr B, 55 yrs old has multiple chronic medical conditions including congestive heart failure, diabetes, and end stage renal disease (he’s been on hemodialysis for the past 7 years). He suffered a cardiac arrest at his home. It took 10 minutes for the medics to arrive and then after 40 minutes of CPR, his heart was finally beating on its own.
Four days later he remains in the ICU, critically ill. He requires maximal support from the ventilator to breath and requires two iv medications (pressors) to maintain a barely normal blood pressure. Additionally, despite the efforts by the medics and ER staff, Mr B sustained a significant anoxic brain injury as evidenced by his lack of response to any type of stimulation. Everyone- from the ICU team, to the neurologists, to the therapists, consistently write ‘very poor prognosis’ in their notes.
The ICU team has had multiple meetings with Mr B’s family. Per the team, despite explaining that Mr B has ‘a grim prognosis and has minimal chance for meaningful recovery’, the family continues to ‘want everything’. So after this latest meeting, the ICU team ordered a palliative medicine consult ‘to help the family understand’.
the family meeting
The ICU senior resident and I met with Mr B’s family (his two siblings and three adult children) the next day. And despite my explaining to her the importance of starting the discussion by asking the family what they understood, the resident immediately started to provide an update of his condition. Before she could get too far, I gently interjected and asked the family “what is your understanding of Mr B’s condition?”.
The family was well aware that that Mr B was being kept alive with life support- that without the breathing machine and strong medications, he would be dead. They also understood that in light of his longstanding medical problems, if he recovered, he would be significantly more frail; they acknowledged they had concerns that he would “never be close to the same man”. But they describe him as a “fighter”, and someone who loved his family, so even if he had significant physical disabilities, if he could interact with his family- that would be ‘a good life’ for him. And overall, they thought he was getting better. They were confused as to why anyone would suggest not continuing this care, and frankly they were getting a little angry at these repeated meetings- they felt like they were being pressured to ‘let him die’.
so what’s going on here????
With some gentle probing, it turns out that although Mr B was not responsive to any type of stimulation, his eyes were now sometimes open (previously they were only closed) and on occasion, he spontaneously moved his right arm. To his family, these were signs of improvement and proof that they should remain hopeful that he could continue to improve. They didn’t understand that in reality these random movements were not indicative of improved brain function, but were signs of the severity of his brain injury. Until this could be fully addressed and explained, there was no way the family was going to consider changing the course of his care.
This explained a lot.
Now we could have a real conversation, and we gently explained what the changes they noticed really meant. In addition, we arranged for the neurologist to return to discuss this more fully with them.
Over the next few days, there was still no improvement in Mr B’s condition. And with their new understanding of his prognosis, the family agreed that Mr B would not want to be kept alive like this and they made the difficult decision to change treatment course and transition to comfort care. He died peacefully soon after withdrawal of the ventilator, with his family by his side.
takehome message:
No matter how many times you have spoken with someone, no matter what it says in the electronic medical record, there remains a significant likelihood that what you think they ‘know’ and what they actually ‘know’ are not synonymous. If you don’t let them start first, and you just start talking, you may not realize the subsequent conversation is actually happening on 2 different planes.
And it is critical to be on the same level. Although you as the provider have more medical understanding about a specific disease condition, it’s the patient/family who has the better understanding of the illness- an important difference. If you don’t understand where the patient/family is coming from, you may find yourselves unwittingly speaking past one another – leading to frustration and worse- incorrect treatment paths.
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