Shared Decision Making in ICUs
Publication Date: January 3, 2016
Last Updated: October 5, 2022
Summary
Table 1. Examples of Preference-Sensitive Decisions in ICUs
Having trouble viewing table?
- Whether to undergo decompressive hemicraniectomy vs medical treatment in a patient with severe stroke and cerebral swelling
- Whether to convert a child from conventional mechanical ventilation to high-frequency ventilation, which might decrease the risk of morbidity or mortality but which would necessitate deep sedation making it impossible for the child and his/her family to communicate
- Whether to pursue ongoing weaning efforts at ventilator facility or transition to palliative therapy for a patient with advanced chronic obstructive pulmonary disease who has failed several attempts at ventilator weaning in the ICU
- Whether a patient’s quality of life is sufficiently satisfying that he/she would want life-sustaining treatment when a life-threatening event occurs
- Whether to attempt resuscitation in the delivery room and provide subsequent neonatal critical care to an extremely premature infant at the threshold of viability
- Whether to pursue a risky neurosurgical procedure to attempt to cure a child’s seizures vs continuing to treat with medications that may be impairing his/her performance in school
- Whether to proceed with palliative surgical procedures in an infant with complex congenital heart disease
Table 2: Preferred Decision-Making Approach Among Surrogates of North American ICU Patients
Having trouble viewing table?
| Decision-Making Model | Value Neutral | General | Value-Laden | ||
| Johnson et al (22)% | Heyland et al (20)% | Anderson et al (21)% | Johnson et al (22)% | Madrigal et al (23)% | |
| Surrogate decides independently | 1 | 1 | 0 | 10 | 10 |
| Surrogate decides after considering physician’s recommendation | 10 | 22 | 25 | 45 | 30 |
| Shared responsibility for decision-making | 27 | 39 | 58 | 40 | 45 |
| Physician decides after considering family’s opinion | 25 | 24 | 17 | 3 | 15 |
| Physician decides independently | 37 | 15 | 0 | 2 | 5 |
Heyland et al (20) : Surrogates responded to questions regarding general decision-making preferences in 6 tertiary adult Med/Surg ICUs across Canada. Anderson et al (21): Surrogates of patients in medical and surgical ICUs at a tertiary hospital in Pittsburgh responded to questions regarding general decision-making preferences. Johnson et al (22): Surrogates responded to questions regarding value-neutral decisions (antibiotic choice) and value-laden resuscitation preferences in three adult ICUs in San Francisco. Madrigal et al (23): Parents of children in a tertiary pediatric ICU in Philadelphia responded to questions about decision-making preferences for very difficult, value-based choices.
Table 3. Key Communication Skills to Involve Patients or Surrogates in Treatment Decisions
Having trouble viewing table?
- Establish a trusting partnership
- Meet regularly with patients and/or surrogates
- Express commitment to patient and family
- Involve interdisciplinary team in supporting the family
- Provide emotional support
- Acknowledge strong emotions
- Convey empathy
- Explore surrogate’s fears and concerns
- Assess patient’s or surrogates’ understanding of the situation
- Ask open-ended question about what patient or surrogate has been told
- Explain the medical situation
- Use simple language to explain patients illness
- “Chunk and check”—convey information in small aliquots with frequent pauses to assess understanding
- Convey prognosis for both risk of death and risk of functional impairment
- Highlight that there is a choice
- Explain that there is more than one reasonable treatment choice with different risks/benefits
- Explain why surrogates’ input is important
- When necessary, explain surrogate decision making
- Explain surrogate’s role to promote patient’s values, goals, and preferences
- Explain substituted judgment
- Assess patient’s/surrogate’s role preference
- Discuss patient’s/surrogate’s comfort making decisions at that moment
- Explain the range of permissible decision-making models
- Explain treatment options
- Describe the treatment options, as well as their risks and benefits
- Elicit patient’s values, goals, and preferences
- Elicit previously expressed treatment preferences (oral or written)
- Elicit patient’s values about relevant health states
- Ask surrogates what the patient would likely choose if he/she were able to speak for himself/herself
- Deliberate with patients and surrogates
- Discuss the advantages and disadvantages of various diagnostic and therapeutic options
- Explore patients’ or surrogates’ thoughts and concerns
- Correct misperceptions
- Provide a recommendation and explain rationale underlying recommendation
- Make a decision
- Agree on a treatment decision to implement
There is considerable uncertainty regarding the best strategies to achieve the tasks described in the table. Clinicians should therefore consider these recommendations as a conceptual roadmap for clinicians, rather than as a set of clinician recommendations.
Table 4. Example Language for Key Communication Skills
Having trouble viewing table?
- Establishing a trusting partnership
- “Hello, my name is Dr. Smith and I am the attending physician in the ICU. As your father’s attending physician, I am ultimately responsible to the care he receives here. I have personally taken care of many patients with medical conditions similar to your father’s. We have an outstanding team of nurses, respiratory therapists, pharmacists, and other professionals to give your father the best medical care possible. We also have excellent social workers, psychologists, and chaplains who can help you cope with the stress of having your father in the ICU. Many families have told me that having their father in the ICU is the most stressful experience of their life, and we will do everything we can to help your father and you during this time. I will personally work with you to make sure we are giving your father the kind of treatment he would want, and other members of the team with talk with you as well and give you the support you need. We will do everything we can to give your father the best treatment possible. Would you like to tell me a little about your father since I didn’t get to meet him before he was so sick?”
- Providing emotional support
- “Many families of ICU patients tell me that they are having difficulty sleeping and eating, and many even find it difficult to take a shower or brush their teeth. These kinds of feelings can be very normal. I want you to know that everyone on the ICU team cares about you and your family, and we will do whatever we can to help you through this. If you ever want to just sit and talk, there is always a nurse or physician here to talk about your concerns, fears, and feelings. We can also schedule regular meetings for updates if that works well for you.”
- Assessing patient/ surrogate understanding of the situation
- “I know that you have already heard some information, and you probably have some understanding of your father’s illness and just how sick he is. Before I start giving you more information, I would like to get a better sense of what you have been told and your impression of his condition. Can you please tell me what you understand about what is going on and how sick your father is?”
- Explaining the patient’s medical condition
- “Everyone’s brain needs to constantly get blood coming to it from the heart. The blood brings oxygen and nutrients to the brain through little vessels called arteries. Sometimes these arteries get clogged, and blood does not get to the part of the brain where that artery goes, and that part of the brain is injured or dies. Sometimes, that can be a very small part of the brain, but other times it can be a very large part of the brain. In your father’s case, the MRI scan of his brain shows that the blood clotted in a large artery and a very large part of his brain died. When part of the brain dies, there is no way that it will recover. That means that even if your father survives, he will certainly have difficulty because the part of his brain that died controls his ability to speak and understand words. Unfortunately, we do not expect him to ever be able to speak again or understand what people say to him.”
- Explaining surrogate decision making
- “Because your father has had a bad injury to his brain, and because he has a breathing tube in and is on a lot of medications to keep him asleep and comfortable, he cannot make decisions for himself. When patients cannot make decisions for themselves, we work with a family member or a friend to make decisions for him. Your role will be to help us understand your father’s values, goals, and preferences so that you and I can work together to make decisions for him. Our goal will be to make decisions that your father would likely have made for himself. Many families find it difficult to put aside their own values, goals, and preferences, but it is very important that you try to make decisions based on what you think your father would have chosen for himself.”
- Highlighting that there is a choice
- “I know that we have talked about a lot of complicated medical information, but I wanted to make sure that you understood everything to the extent that you want because we need to make a decision about what to do next. I have taken care of a lot of patients in the same condition, and I can tell you honestly that different families make different choices. In a case like this, there is no “right answer.” What we decide to do next depends on what your father would have wanted. There are some interventions that could potentially save your father’s life, and some people prefer one of the options while others want the other option. It really depends on how your father would personally judge the risks and benefits of each. Also, I have taken care of many patients just like your father who believe that living without the ability to talk or to understand what their children are saying is simply not a life that is worth living. In those cases, we decide that it would be better to stop some or all life-prolonging interventions such as the ventilator, or sometimes we decide to continue what we are doing but not add any new treatments. The goal at that point would be to make sure he is as comfortable as possible and not suffering. There is no right answer here, so we just need to talk it out and decide what makes the most sense for your father.”
- Assess patient’s/surrogate’s role preference
- “I’ve explained this to you because you are your father’s next of kin, but every family addresses these issues differently. In general, we try to make decisions like this as a team, bringing together your understanding of your father’s values, goals, and preferences and our knowledge of your father’s injury and the various options. Now that we’ve discussed this a bit, I would like to talk about how comfortable you are making this decision together with me. I would also like to know if there someone else I should be speaking to as well. I have worked with a lot of families, and I have found that different people like to make decisions differently. Most families like to work together with me to share in the responsibility of decision making, but some families prefer that I give them clear and honest information and allow them to make decisions on their own, whereas others want to tell me about their father’s values, goals, and preferences and then prefer that I make decisions for them. If you prefer to take the lead in decision making, I will give you honest and complete information so that you can make the best decision possible. If you prefer that I make some of the difficult decisions, then I will give you as much information as you like and I will tell you what I plan to do before I do it so that you can tell me if you disagree with the decisions I am making for your father. Can you tell me a bit about how you think we should make these decisions for your father?
- Explaining treatment options
- “The two options to try to prolong your father’s life are a surgical intervention or a catheter intervention in radiology. Some people prefer the neurosurgical option because if the surgeon goes in and find the bleeding artery, he will almost certainly be able to stop the bleeding. The downside to the surgical option, though, is that it is very risky since the surgeon needs to go very deep into your father’s brain. Others prefer the radiology approach because it is less risky, but the downside is that there is also a higher chance that the radiologist won’t be able to stop the bleeding. I will explain the advantages and risks of each in much more detail if we decide that doing a procedure makes sense. As we discussed, some families believe that their father would not want to go through all of this to be left unable to speak and understand his family and friends. When families make that decision, we continue to provide high-quality care. If we decide that that makes the most sense for your father, we would continue to give him medication to make sure he is comfortable and in absolutely no pain. We would continue to take care of him and of you. We would make sure he is comfortable, and then we would take out the breathing tube. Once we take out the breathing tube, he would probably die fairly quickly. It is always impossible to know exactly how long a patient will live after the breathing tube is take out, but I have done this many times, and in general, patients die in about 15 min to 4 hr, although some die faster and others live longer. I have even had some patients live several more days or even weeks. However long your father lives after we remove the breathing tube, we would continue to take care of him and of you, and we would make sure his is comfortable and does not suffer.”
- Eliciting patient’s values, goals, and preferences
- “We’ve talked a lot about your father’s condition and the choices we need to make. Because different people make different choices, I need to understand what is important to your father. What makes his life worth living? Knowing him, do you think that he would want to go through these treatments if he would never be able to speak or understand anyone ever again?
- Deliberating with surrogates
- “Based on our conversation, I think that I have enough information about your father to make a recommendation. Before I do that, I want to make sure that you have as much information as you want and need. Is there anything I can clarify or any other information you would like? If not, then it is time for us to start thinking about what makes the most sense for your father. Based on what you have told me, it sounds like your father would want to remain alive as long as possible regardless of his ability to communicate. Based on that, I would recommend we move forward with the neurosurgical option because that option has the highest chance of keeping him alive. As we discussed, there is a very real risk that the neurosurgery will cause more damage to his brain, but it is the best option if the goal is give him the best chance to stay alive. What do you think?”
- Making a decision
- “Based on our discussion, it sounds like your father would not want to go through these procedures because no matter what happens he will never be able to talk or understand what anyone says to him and that is not a life that he would want. Based on that, it seems that it would be best for your father for us to make sure he is comfortable and then take out the breathing tube. We all understand that that means that he will likely die, but we will make sure he does not suffer. Are we all in agreement about that plan?”
Conclusions
- Decision making in the ICU involves choice making for highly value-laden choices, value-neutral choices, and a range of choices between such extremes.
- Data suggest that patient and surrogate preferences for decision-making roles also range from preferring to exercise significant authority to ceding such authority to providers.
- Further, data suggest that while patient and surrogate preferences for decision-making roles may be influenced by the value-content of the choice at hand, some patients/surrogates prefer a very active role even for value neutral choices, whereas others prefer a very passive role even for some highly value-laden choices.
- Clinicians should adapt the decision-making model to the needs and preferences of the patient or surrogate regardless of the value content of the choice.
- Accurately assessing the decision-making model that is preferred by the patient/surrogate at a specific time for a specific choice is extremely difficult; however, allowing for many different models of decision making, ranging from a patient- or surrogate-driven model to a clinician-directed model, is both ethically supportable and necessary to best match patient/surrogate choice-making preferences.
- Because data suggest that most patients/surrogates prefer an approach in which they and their clinician(s) are equal partners in decision making, such a model should be used as the default, including elements specified above, and then the model should be adjusted to best match patient/surrogate preferences in decision-making approaches.
Recommendation Grading
Overview
Title
Shared Decision Making in ICUs
Authoring Organizations
American Thoracic Society
Society of Critical Care Medicine
Publication Month/Year
January 3, 2016
Last Updated Month/Year
April 1, 2024
Document Type
Consensus
Country of Publication
US
Document Objectives
Shared decision making is endorsed by critical care organizations; however, there remains confusion about what shared decision making is, when it should be used, and approaches to promote partnerships in treatment decisions. The purpose of this statement is to define shared decision making, recommend when shared decision making should be used, identify the range of ethically acceptable decision-making models, and present important communication skills.
Inclusion Criteria
Male, Female, Adolescent, Infant
Health Care Settings
Emergency care, Hospital
Intended Users
Healthcare business administration, nurse, nurse practitioner, physician, physician assistant
Scope
Counseling, Management
Diseases/Conditions (MeSH)
D007362 - Intensive Care Units, D000066491 - Clinical Decision-Making, D003657 - Decision Making, D000080536 - Decision Making, Shared
Keywords
Shared decision making, ICU, intensive care unit, decision making
Source Citation
Kon AA, Davidson JE, Morrison W, Danis M, White DB; American College of Critical Care Medicine; American Thoracic Society. Shared Decision Making in ICUs: An American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med. 2016 Jan;44(1):188-201. doi: 10.1097/CCM.0000000000001396. PMID: 26509317; PMCID: PMC4788386.