In critically ill patients, there are two scenarios: can talk, and cannot talk; however, if they are critically ill, it will be the latter. Both bring their own logistical and ethical complications, but we’ve talked with multiple ICU attendings and fellows to break down these conversations into the most thorough, but also succinct instructions to having death and dying talks with patients and their families in critically ill situations. Essentially, it’s the same conversation in both scenarios, but in one, the patient is telling you their wishes, and the other, the family is making care decisions based on either documented wishes of the patient or what they feel is the right thing to do. Sometimes there is grey area. You will often be the resident on call in the middle of the night asked to make life and death decisions on patients you may not know well with limited clinical information. It sucks, we know – that’s why this website was created.
Dr. Jason Green, DO is finishing up his fellowship in Pulmonary and Critical Care Medicine, and will walk through how he approaches these conversations on a daily basis.
In dealing with family dynamics, you must identify key role players who know the patient well (is it the cousin from Kansas that doesn’t know them or their spouse of fifty years), who may have had conversations in the past “if this happens, I want this done.” You should absolutely ask the family directly if they have discussed what if scenarios with the patient in the past. This will help you guide them in healthcare decisions for their family member. There’s less guilt and emotional trauma around families who have to make decisions when they know their family member’s wishes.
Power of Attorney or Surrogate Selection
In this time of assessing family dynamics, you will also need to determine if there is a legal power of attorney. This would be written in an advance directive if they have one, and in some states, the living will would provide this information. If there is no documentation, a healthcare surrogate can be appointed to make decisions on behalf of the patient, which defaults in a specific order of decreasing priority:
- adult child
- adult brothers and sisters
- adult grandchildren
- adult close friends
There will be times with grey area, for instance with multiple children. Who should be selected as the surrogate? You must assess and determine the following of the potential surrogate:
- ability to make decisions in keeping with the patient’s wishes or best interests
- regular contact with patient prior to and during incapacitating illness
- demonstrated care and concern
- availability to visit face-to-face with patient and medical team in order to fully participate in the decision-making process
Leading Family Meetings
Family meetings with all the decision makers and medical specialists in the same room can be powerful tools. In this way, you can avoid any “he said, she said” and each specialty (surgery, critical care, primary team, etc.) can weigh in. In these times, Dr. Green emphasized,
I always ask, “what is their life like at baseline?” The very best you can hope for is they come out of this really bad place to their previously debilitated state, but chances are, they’ll be worse than that. The majority of people who live to this age would not want to give up their independence and dignity in order to stay alive with artificial means of surviving via a trach and/or peg. I tell families I wouldn’t want this for myself, my loved one, or anyone I care about. I emphasize I’m speaking to them as a human being, not as a physician trying to influence the healthcare decisions for their loved one. Families are often looking for guidance, and are paralyzed with fear, hoping for help in that decision. Fundamentally, I’m trying to assess whether or not we are prolonging suffering without hope of returning to a functioning status, and getting the family to see and understand this.
Ask, Tell, Ask
One communication tool that’s helpful, after you finish your discussion, is to ask them to communicate what they understood. They could have a 2nd grade education or a PhD, and neither one may hear a word you said. Specifically ask the family members, “What’s your understanding of his heart condition and what we talked about?” Be prepared in these situations to be a verbal punching bag, because they may see you as the enemy. There will be lots of guilt in these critically ill circumstances, and you, unfortunately, are the deliverer of the bad news and the one “doing the bad things” to their loved one. Delve into the dynamic and help them as much as you help the patient, because they are going through a very hard and trying time. The last thing you want is unresolved guilt. If the decision at the end of your meeting and after they’ve communicated what they understand about their loved ones illness is to withdraw support, make sure to emphasize they are making a decision to withdraw support that their loved one would not live without. They are not “giving up” as you will often hear from families, and they are not “killing dad.” Rather, they are allowing the human body’s natural progression in its disease state to finalize in death, which you are currently temporarily preventing through artificial means. These are incredibly difficult decisions, and you need to be there medically as much as you are emotionally for family.
Planting a seed early is important, as you will likely have multiple conversations with family as their critically ill loved one progresses over time. Ask what were they like at home and how functional they were in the activities of daily living. This way, you’re building an understanding of what your patient looked like at baseline, how far the patient has deteriorated from that line, and how close you believe they may return to that line. It’s ok to work a slow transition. Don’t bombard them. Don’t lead with “should we go with Hospice?” You should be direct and honest, no matter how you approach the discussion, because family is looking for someone to say it’s ok. Dr. Green uses reassuring language by telling family members “Your loved one is dying because their heart wore out, not anything you did.”
Help Your Colleagues
Always call your consultants when there are complex family dynamics so they’re not walking into a lion’s den blind, “this one’s crazy, this one’s reasonable, this one’s the decision maker, this one hasn’t seen grandma in 30 years”, and also to help them with the medical information you may be privy to.
May your words be kind, gestures gentle, and compassion at the peak of your emotional capacity as a human when talking with families in these moments.