Advertisement

How I conduct the family meeting to discuss the limitation of life-sustaining interventions: a recipe for success

Horace M. DeLisser

Article Figures & Data

Figures

Tables

  • Table 1

    A recommended protocol for success: suggested ways of saying and doing it

    Introductions
        “I want to thank you for taking the time to meet with us. I know the last several days have been difficult for the family. Today I want to update you on Mr R's medical condition and then, together with you, decide where we go next in caring for him. However, before we do that, I would like to have everyone introduce themselves, stating your relationship to Mr R.”
    Eliciting fears, concerns, and goals
        “As we sit here, what is your biggest fear?”
        “What is weighing most heavily on your heart right now?”
        “At this time, what is most important to you?”
        “Do have any concerns about the care we have provided or the way we have treated you?”
        [The responses of the family may provide opportunities to offer empathic statements.]
    Getting the family to talk about the patient
        “I know a lot about Mr R's medical condition, but I really don't know who he was as a person. Please tell me what made him special or unique or different.”
        “What things were important to him?”
        “What activities or hobbies did he enjoy?”
    Determining/clarifying the family's understanding of the medical facts
        “I know the nurses and physicians have tried to keep the family informed about what has been going on with Mr R. However, we may have confused you or even forgot to mention something. Can you [eg, the wife] tell me your understanding of what is going on with your husband?”
        [Their understanding is accurate.] “You are correct. He came to the hospital with a pneumonia that was caused by….” [It is valuable to restate things to ensure that there is no confusion.]
        [Their understanding is inaccurate.] “To what you have said let me add a couple of things….”
    Presenting recommendations and achieving a consensus on the direction of care
        “We are at a point where I can say his chances of ever getting well enough to leave the hospital are very, very small. Based on what you told me about the kind of person he was, and the way he lived his life, it is my sense that he might not want to be placed on ventilator, when there is little chance of recovery? What are your thoughts on that?”
        “It is the conclusion of the medial team, after careful thought, that the chances of Mr R leaving the hospital and doing things he use to enjoy are very small. What do think he would tell us to do if he were here now?”
        “You mentioned earlier that he has been through a lot and that you don't want him to suffer unnecessarily if it does not look like he will get better. I must say that transferring him to the ICU, putting him on a ventilator, starting dialysis, and subjecting him to CPR does run the risk of increasing his suffering without a guarantee that he will necessarily become well enough to return home. Based on that, I believe we should focus on making sure that he is comfortable and that he does not suffer. How does that sound to you?”
    Preparation of the family
        “Going forward, if his heart stops beating we will not attempt to restart it and if he runs into breathing problems we will not put him on a ventilator. Instead, we will keep him on this floor and focus on making sure he is comfortable. We will watch him closely for any signs of distress and will be sure to treat him immediately. To help us do that we will consult the palliative care team. Does this seem clear to you?”
        A response to the question “How long will it take?”: “From my experience, it may take a day or 2 before he dies. Patients, however, sometimes will remain with us a little longer than we anticipate, and therefore it is important to be prepared for that.”
        “I want to stress that as you go through this, the nurses and doctors will be with you.”
    Experiencing the emotions of the moment
        A response to “We really thought he was going to get better.”: “After having such high expectations, all this must be incredibly frustrating and disappointing to you.”
        A response to “He was such a good man. Why should this happen to him.”: “I agree, all this seems so unfair.”
        As the loved ones are weeping and grieving: “I share your sadness that he will not be with us anymore.”
        The challenges of decision-making: “Making these kinds of decisions for loved ones are never easy.”
        [Remember the value of silence.]
    Ending on a positive note
        “Before we close, please tell me something special or funny or memorable about Mr R.”
        “I know that prayer is important to you. I therefore would like to have the chaplain give us a prayer.”
        “I sincerely thank you for being here today and for helping us make these difficult decisions.”
  • Table 2

    Suggested responses to specific statements by the family

    Statements by the familyCommentsSuggested physician responses
    “My dad was always a fighter.”Families want, and need to be assured that every appropriate effort has been made to restore the health of their loved one.Not all fights are meant to be won. Accepting this, but recognizing that your father was a fighter, the key question is, have we done everything we could to make it possible for him to win this fight? I can assure you we have.”
    “My dad would want us to do everything.”“Doing everything” should be understood as doing everything that is medically appropriate. There is no obligation to provide, at the demands of family members, treatments that are medially ineffective or lacking physiological benefit.I can assure you that we have done everything possible to make your father better. To make sure we have not missed anything, we consulted … and did the following studies … (briefly/succinctly list major problems and efforts made to address them). Although we are not able to make him better, we will do everything possible to make sure he is comfortable and does not suffer.”
    “I am not ready to let my husband go.”Expressions of anticipated grief or loss at this time are normal. An effective response is one that compassionately acknowledges the emotions the family is experiencing, while suggesting some things that might help them cope with their loss.“When you love someone as you certainly do, the time will never feel right to let him go. But I do believe there are things you can hold on to, like memories of shared experiences; the pride you both enjoyed around your children or grandchildren; or your hope in seeing him in heaven (if they have that belief).”
    “We know that things are hopeless, but we believe a miracle will occur.”In responding to a family that has this belief, the goal is not to present arguments that intellectually overwhelm the family. Instead, through patient and respectful discussions, the family is provided with information and fresh perspectives that they can use to reshape their thinking and understanding of the current situation. This effort begins by attempting to understand the meaning and significance of a miracle to the family (see DeLisser36 and Feudtner37).“Miracles can mean different things to different people. What does a miracle mean to you? What would a miracle look like?”
    As a subsequent or follow-up question ask:
    “Assuming that a miraculous healing might not occur, are there other things that you would like to hope for?