Preparation:
- What information do we need from the patient/family? What are the key decisions we are helping them make?
- What key information do we need to give them? (Usually this info supports item 1.)
- What is the basic prognosis? Days to weeks, weeks to months, months to years, more? What information is essential to clarify this? Can we get the consultants to help clarify?
- Confirm who is the decider. Find the paperwork that confirms the healthcare proxy, which is crucial if the patient lacks capacity.
- Make a brief list of all major organ systems that are impaired.
- Schedule a time and place, try to set aside an hour of your time. Who needs to be there? I try to only include consultants who have known the patient a long time and who the patient identifies as their doctor. Otherwise, lots of providers can make for a confusing and long session.
Get the room ready:
- Get chairs for everyone.
- See if there is a separate room where everyone can meet in and try to reserve it.
Before going in:
- Decide who will be the meeting leader. There should be one point-person that the discussion goes through so that the important items get addressed. Others are there for supporting comments and details.
- Review with the care team what the main decision points are.
During the Meeting:
- Close the door and turn off the TV.
- Introduce everyone by relationship to the patient and by role in the care team, and shake their hand.
- Identify the healthcare proxy and verbalize this.
- Orient yourself initially toward the patient.
- Update the patient about the state of things. Review the major organ systems that are impaired, and the basic treatments in very general terms. "You have an infection in your blood and we are giving you antibiotics. Your heart is weak which makes it hard to breathe, and we are giving you medicine to dry out your lungs. Unfortunately, this medicine uses your kidneys, but they are weak too, and so we are having a hard time. And you are also unfortunately bleeding into your bowel so we are giving you blood transfusions."
- Ask if there are any questions. Answer them in the most general terms possible. Avoid getting too specific about the medical details.
- Get straight to the key question you have. Be straightforward in asking it. If the patient does not have capacity, direct the question at the healthcare proxy. "We need to talk about something we call code status. Do you recall anyone discussing this with you before?"
- Deliver the information that you need to deliver. "We have been giving you a blood thinner to protect from stroke, but this medicine makes you bleed. Since we haven't been able to fix the bleeding, we stopped it."
Closing the Meeting:
- Reassure the patient that we are doing as much as you can and want to make sure that everything we are doing lines up with their preferences and wishes.
- Thank everyone for coming and shake their hand.
- Write a "Goals of Care" progress note that includes the names of everyone present, a brief summary of the discussion, and any major decisions that were made.
Tips:
- Focus on the decider, either the patient if lucid or the healthcare proxy. A family member or friend may be the most engaging. Answer their questions briefly, but bring your attention back to the decider.
- Never argue. Give your impression and understanding and recommendation, but don't argue about details. Allow patients and family's to contradict you. Correct only when they are being disrespectful of the staff, and do so gently.
- Try to let the patient/family do most of the talking. Try to let them finish all sentences before jumping in. Let them set the pace of the conversation.
- Try not to be overly cheery. We instinctively greet people upbeat and happy, but it often doesn't match the context. Smile and be pleasant, but not joyful.
Advance Directive Discussion Tips:
I envision a ladder: Full code -> DNR/DNI -> Do Not Escalate Care -> CMO
I often use language like this:
"For most patients, at some point the burden of treatments reaches a point where those treatments are not worth it. This happens on a spectrum. For an otherwise healthy 24 year old, if they get sick we put them through a lot (machines, lines and tubes, surgeries, etc), because their organs are all healthy and they have so much potential life ahead of them. For an 80 year old with terminal cancer, we don't do that stuff. Most patients fall somewhere in between. Lots of times, patients say 'do what you can using hospitals and intravenous medicines and fluids, but don't hook me up to lines and tubes, don't put me in the intensive care unit.' We call this Do Not Escalate Care. If antibiotics and fluids don't seem to be working and the patient starts declining, we focus on their comfort and let them pass away in peace."
"We think Mr. Smith is at the end of his life. Some people in this situation want as many days as possible. They are willing to go through anything: 'Keep me in the hospital, poke me with needles for labs and imaging, do procedures, hook me up to lines and tubes and machines. Whatever it takes, even if it means I'm in pain and uncomfortable at the end. Other people would prefer a period of calm and some clarity at the end. They want to focus on maximizing the quality of the days remaining, rather increasing the number of days. They say 'Stop checking labs and vitals, stop with the treatments. If something happens, just let it take it's natural course and carry me off.' We call that Comfort Measures Only. The team that makes this happen is called hospice."
We often focus on "making the person DNR" or otherwise getting them to change their code status. This is the wrong approach. It's most important to give the proper information and get a clear decision that the whole family acknowledges.
