Goals of Care

Previously, we discussed how to deliver bad news. I set it up specifically as a situation that didn’t require much in the way of further discussion. The example I used was telling a family that their loved one had died. But often we have to have other types of difficult conversations with families as well. The most common type of this is the Goals of Care discussion.

This is a talk where you are delivering bad news of a sort, that their loved one is unlikely to have meaningful recovery. But in this conversation, there are decisions to be made. Unlike telling a family that someone has died, there isn’t total finality to this conversation. You need to help the family decide what to do next.

Often we consult palliative care for this, but I think that that is not the best practice for 2 reasons. First, any healthcare provider, especially an ICU provider, should be able to handle a basic goals of care discussion. Palliative care is helpful and should be involved in complex situations, especially those that involve tricky ethical or legal questions. But, the palliative care team is busy and just like you wouldn’t consult cardiology for every arrhythmia, you shouldn’t consult palliative for every goals of care discussion. Most often, people consult palliative care for these talks because they’re uncomfortable and the ICU provider would rather not have them.

And that brings me to reason number 2 to handle this without consulting palliative. It’s your responsibility. They are your patient and you shouldn’t abandon them when it becomes uncomfortable. In many cases, the ICU provider probably has some sort of relationship with the family (although not always, because patients may show up to the ICU in a non-salvageable condition). It’s going to better for the family to hear this from you than from a palliative care provider that they just met.

So, how do you approach this conversation? It’s similar to the breaking bad news discussion we talked about last time, but you often have a little advantage of prior relationship. I start by prefacing the conversation like this: “I’m going to speak very frankly to you because, if I were in your shoes, that’s how I’d want to be spoken to. I apologize if anything I say comes across as harsh, that’s not my intent. But, it’s been my experience that families prefer to get the straight truth rather than beating around the bush.” In several years, I’ve never had a family disagree.

Too often, we use medical jargon and euphemisms. Or, we just skirt around the issue without addressing it head on. I’ve been in conversations where the person leading the discussion does this and then leaves the room, feeling that they’ve been understood. But the family will walk away with a different understanding. “Your husband has had a very serious stroke and he’s not progressing like we had hoped. I think that looking at everything, the odds of him coming off the ventilator are very poor. It’s likely that he will never be much better than he is right now.”

The next thing to do is to discuss what the patient would value and how he or she would define quality of life. I know how I would want to live and how I would not want to live, but that isn’t for me to impose on others. For some people, if they could recognize their families, living in a nursing home on a ventilator might be something they’d be ok with. Others wouldn’t want to go on if they couldn’t be independent.

This is where predicting the future becomes tricky, but you need to lay out the best case scenario, the worst case scenario, and what you think is the most likely scenario. In some cases, the best case (which may still be a long shot) isn’t good enough for what they patient would want.

If the family indicates that the patient would not want to continue, this is when I lay out the options for end of life care. “We can transition to a different type of care in that case. One focused not on cure but on providing comfort and allowing a natural death.” I then will ask them if it’s ok for me to share with them what that looks like. This is all a lot to take in. Some families may need time to process. Simply hearing the poor prognosis may be enough. They may need time to come to grips with that before they’re ready to discuss comfort care.

Goals of care meetings may be one meeting where everything is decided, or they may take multiple days. You’ll need to gauge what they can handle. If they decide they want to continue, I describe the process of comfort care. “We stop doing tests and giving medicines that are not aimed specifically at comfort. Then, when you’ve had time to spend with them, the last step is to remove the breathing tube and take them off the ventilator.”

At this point, I usually ask if they’re waiting on other family members to arrive. If there are others coming within a reasonable amount of time (a few days), I suggest that we continue minimal life support (mechanical ventilation, vasopressors) to keep the patient stable until everyone has had a chance to arrive and say goodbye.

These are some of the most difficult conversations to have and can easily be the most exhausting part of your day. Despite what I said earlier, if you’re not comfortable with this conversation, call your palliative care team. But, use that as an opportunity to learn so that next time, you don’t have to call them. Once you do this a few times, you’ll get comfortable with it and it can become a very rewarding part of working in the ICU. If we only seeing curing patients as wins, then we lose a lot. And that can lead to burnout. However, if you take the view that we did everything we could and now we can focus on keeping them comfortable and allowing them to die with dignity, it can help turn what would normally be perceived as a negative outcome into a positive one.

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