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How to Conduct Family Meetings When the Patient Is ...
How to Conduct Family Meetings When the Patient Is Dying
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Thank you, let me make sure that this is working okay. And is the timer, all right. I'm talking to you today about family meetings in the ICU when a patient is dying. I have been a critical care physician for 15 years and I'm now doing actually a fellowship in hospice and palliative medicine at Duke University. I have no disclosures. I'm gonna talk a little bit about the challenges of the ICU environment. I'm gonna review some of the essentials of good communication, including the principles of shared decision-making, how to deliver bad news and some of the skills that we can all learn in practice, and then some lessons and conclusions that I've learned over the last several years of clinical practice. So the ICU environment, as you know, of hospitalized patients who die, about 50% actually die in the ICU. We often prioritize the immediate needs of our patients over the family needs and the families are often in crisis. It leads to an emotionally charged environment. It's riddled with bioethical dilemmas, medical complexity that often requires time and lots of collaboration with other providers. We rely pretty heavily on surrogate decision-makers. They have a difficult time, we know, separating their own beliefs from the beliefs of their patients and they're often in an unwelcomed role. Very rarely does somebody wanna make difficult decisions for their loved one. And then the ICU is particularly wrought with discordant perceptions, both between clinicians and family, as well as discordant data. So all of the data doesn't always align and that makes the family members much more dependent on the clinicians to explain the nuances of the data. This all leads to an emotionally charged environment. There are lots of ethics involved. The decisions to do the quote-unquote right thing are very pressured, they may not be clear, and they're often not agreed upon by all members. There are moral imperatives of the patients, there's moral imperatives of the family, those often change. And then there's moral imperatives of the nurses, the therapists, and the physicians, and any member of the IDT team. We have tended to really rely on the ethical principle of autonomy, beneficence, and non-malfeasance, which I'm sure you guys are all aware of. And heavy reliance on either one of those can lead to either patient-driven overtreatment or physician-driven overtreatment, which happens quite a bit in the ICU. And in the background, there's this regulatory push, the need to have documentation say certain things, which can often present a problem for folks who aren't ready to discuss end-of-life, but there's a pressure from the outside to say, hey, we need a code status in the chart somewhere. We often forget the power of our words. We use things like medical futility, and over time that's really shifted to what is a medically inappropriate treatment or what causes physiologic benefit. We forget the layperson's hearing of medical futility. We are very commonly known to discuss withholding certain treatments when we frame it as continuing current treatment versus withholding. That may have a very different impact on the patient and family. We often forget to talk about technology as a tool and that it can't really prolong life indefinitely. It can't change the course of nature. We often use miracles in a non-collaborative sense. We try to focus on transition to comfort and things we can do, but our culture, really, being ICU physicians, is one of not doing and taking away, not this is where we are. So we need to really think about positive framing, and there's several authors who've looked at nudging and the influence of our words on decision-making. If you are having a family meeting and you're talking about mortality, you're gonna have 13% of the people only are gonna choose what you present to them, whereas if you're framing it around survival, the number who will choose your decision goes up to about 25%. And we often forget to use and acknowledge that there is an inherent power dynamic regardless of how we present the conversation. So this is just meant to show you an overall slide of the ethical environment over time in medicine specifically. The idea of patient autonomy and a move away from paternalism really began around 1914 with the idea of patient consent and then informed consent in 1957 for specifically research and risky procedures, and that has evolved over time. You can see that there's a balance between autonomy, futility, paternalism, and then what many authors are calling kind of like an ethical integrity at this point. It's ironic that a society that doesn't mandate sort of a healthcare for all individuals does still seem to promote the idea that healthcares have the right to mandate treatments that aren't physiologically beneficial. So that leads to an environment that demands a lot of balance. We're very, we prioritize patient autonomy, and yet we also need to pay a little more attention to our professional and ethical integrity. So moving on to communication, the data suggests that really there's lots of communication failures between clinicians and surrogates in the ICU, and this has been studied over decades, started in the 1990s, and really all the way through 2021, 2022. There's a failure to conduct timely interdisciplinary meetings. There's often missed opportunities for emotional support to surrogates, and there's an inadequate discussion of prognosis, patient values, and the options of comfort-focused treatment plans. What families want, several meta-analyses have showed that communication really is the most important skill ranked by families of providers. They recognize that difficult decisions often generate conflict. There's a meta-analysis of family member needs, and eight out of the 10 themes actually focused around communication. The highlights were that family members and patients wanted accurate and clear information every day from a physician. They wanted reassurance that they were doing the right things. They wanted the treatment team to leave room for hope, and they had a huge desire to stay physically near the patient. Interestingly, across the board, patients and families actually want both information and opinions from the treatment team, and this has been consistent over time. In 2020, Lopez and Soto et al. actually, during COVID, instituted a family liaison team to do all the communication for family members who were stuck at home when their family members were in the ICU. Ultimately, they looked at 179 family patient dyads, and analyzed over 1,200 video telephone calls, and the patient and family friends felt that they were not told implications. They felt that the communication of facts was adequate, but they didn't understand what those facts would mean, and their request was that the ICU clinicians needed to be more involved so that they could ask and ICU clinicians could answer questions. There was a overwhelming disbelief in the speed of decline of the patients, even with all of the publicity around COVID and the difficulty, and the difficulty in communicating news was especially profound at the end of life. There was a difficulty between the ICU staff and the family liaison team, then from the family liaison team to the patient and family representatives as well. So another group, White et al., actually looked at an RCT of interprofessional family support intervention, primarily to see whether or not it affected long-term outcomes, psychological outcomes in family members. Over five ICUs, 1,420 patients. It turned out that their intervention didn't change the burden of psychological symptoms on the patient and family survivors. However, it did improve the ratings of the quality of communication across the board. It improved patient and family centeredness of care, and it actually reduced the ICU length of stay, and this was actually adjusted for death in the ICU. So what families want for communication? They really want their five basic human needs to be met. They need to feel safe, they need to feel connected, they wanna feel calm, they wanna feel useful, and they wanna feel hopeful. I would argue that we as ICU clinicians aren't very good at keeping the hope in the room. So this leads me to shared decision making. Shared decision making really is a relationship-centered construct, and it's centered around trust. The decisions are often characterized by medical uncertainty, and all these authors on the slide have shown that patients want information in an attempt to kind of grasp for control. They wanna be able to control the outcome. Part of our job in a shared decision making model is accepting that there's uncertainty, and we have to give up that control. Individual decision making preferences do occur, and the percentage that they want the physician to be involved or not involved in dictating the decision, however, across the board, patients and families want the physician expression of uncertainty to be heard and listed, and they want the physician participation and physician advice, which I think was a newer concept to some of the sort of old-term ICU clinicians. In Seattle, White et al. actually looked at a criteria for divining shared decision making. They came up with a tool, 10 different areas to define really good shared decision making, and then they did a study where they looked at 51 shared decision making encounters, and only one of the 51 met all 10 of those criteria. The most common criteria met were the nature and the context of the decision, and the least were the family's role and the family's understanding in the decision, which really should be at the paramount of shared decision making. So the family, they concluded that the families were vulnerable to regrets and poor psychological outcomes, largely because we were not meeting all of the criteria for good shared decision making. So what is successful good communication? It's based off of trust, it's relational. It's based off of honesty, active listening, curiosity. It's based off connection and self-reflection. So every member, both the family member and the clinician, needs to understand what they're bringing to the table in the conversation. I recommend that we approach every single encounter with genuine curiosity, a little bit of humility, a lot of self-reflection, and engage in the silence of a natural communication. So how to build trust? Tulsky et al sort of wrote down some of the best ways clinician can engender trust in their patient and families. It's gotta be earned. You need to encourage your patient and family members to talk, listen to them. Don't undermine previous providers or previous experiences. Acknowledge and acknowledge the errors, but don't say that you're somehow not gonna do those things. Demonstrate humility and respect, and don't force decisions. Decision making must be nimble and must be responsive. When a family or a patient feels pressure to make a decision, they lose trust. So this really leads into the situational awareness in the ICU, that balance between paternalism and patient autonomy. Lots of different authors have come up with different ways of saying, oh, it's neopaternalism, it's maternalism. I think we really have to recognize that a guided recommendation that includes patient values and family member thoughts really is the key to situational awareness and shared decision making. So delivering bad news really is a skill. It's something to be practiced like any other ICU skill or procedure. I'm gonna list a couple of the sort of acronyms that people use in the hospice and palliative medicine world. One is a trauma-informed communication with the acronym BRAVE. You wanna build trust. You wanna reframe the scenario. We all wish that this would go away, but in the idea that it's not gonna go away, here's what we can do. You wanna assess awareness. What do they understand about the medical situation and the inevitabilities going on? Validate their experience. This stinks, it's hard. And then provide and leave room for emotion and empathy. Connection mitigates trauma, and any kind of experience in the ICU can be an emotionally traumatic experience. So family meetings often should have a structure, just like a procedure has a structure. Have a plan. Deliver a unified message. Try to use the architecture of ask, tell, ask so the family feels engaged in the conversation. Align with their hope. Ask permission to go further and share a prognosis, and explore. Some of the other acronyms and skills that we have are SPIKES. There's a setting, you assess the perspective, you obtain an invitation to talk more, you share your knowledge, you expect emotion and show empathy, and then you have a strategic planning and summary for what the next steps are. Recognizing you're not gonna accomplish everything in the first encounter. The NURSE acronym is a way to remember to keep the emotion into a lot of your statements. And then beware of time. Recognize that really, after 30 minutes, everybody's lost in the room. You wanna get the most important information out in the first five minutes. You wanna be talking less than the patient and family. Really 10% or less of the time you should be talking. And then embrace silence. Silence isn't empty, it's full of answers. So in summary, ICU has a balance, the environment between autonomy and professional integrity. We need to remember the elements of good communication that people wanna feel connected and maintain hopefulness. Engage in shared decision making with information and recommendations. Clarify rather than educate and clarify the data based off the patient lens and values. Don't force a decision. Successful communication is relational and depends on trust. We wanna provide a consistent message. Use and statements instead of but statements. And be mindful of time, its value, its recognition as a gift and its recognition as a goal. Be human and acknowledge uncertainty. Remember your situational awareness. Engage in self-reflection and acknowledge what you bring to the table in every conversation. Choose your words carefully. Try to avoid things like withdraw. Try not to focus on a DNR decision. And make a recommendation. Making a recommendation I think is really hard for us as physicians. I would argue that removing the burden from the family members helps alleviate some of their guilt so they can go back and say, you know, we did everything. The doctors told me we did everything. And that's all. This is where we ended up. So the lessons I've learned over the years, essentially the SPIKES and the nurses acronyms can help you. They're not linear. They go all over the place. You're not meant to bump off every single one in every single conversation. Remember the power of asking permission and providing recommendations. People tell you if they don't want to hear your opinion. For the most part they do. Recommendations are based off of a combination of the medical data, your expertise, the family emotions, and the patient values. So it does require quite a bit of understanding and listening on the patient and family behalf. Consider a meeting before the meeting with all of the providers on the same page, everybody involved in the care. Assign roles. Acknowledge a goal. Be consistent. Avoid oppositional positioning. Sit with the family instead of everybody across the table. Talk less and listen more. And allow family members to set the tone on what they're ready to hear and what they're not ready to hear. And avoid an emphasis on code status. Here are some helpful phrases you can look at later. Some of my favorite is, you know, if it would be helpful to you, I can give you my opinion. Have you thought about what might happen if things don't go as you wish? Or we know this support will come to an end and we can use these tools, ventilators, pressors, et cetera to accomplish a goal like seeing other family members. So in conclusion, family meetings in the ICU when a patient is dying are tough. We need to be brave. Connection mitigates trauma. Remember to acknowledge uncertainty and leave room for hope. Practice your skills. Practice sitting in silence, being supportive and asking permission. Engage in shared decision making and provide a recommendation. And remember that time can be the miracle. Thank you.
Video Summary
The speaker discusses the challenges of conducting family meetings in the intensive care unit (ICU) when a patient is dying. They highlight the emotionally charged environment and the bioethical dilemmas that arise. The speaker emphasizes the importance of good communication, including shared decision-making and delivering bad news. They discuss the power of words and framing in influencing decision-making and highlight the need for positive framing. The speaker also explores the ethical environment in medicine, focusing on the balance between patient autonomy and professional integrity. They suggest ways to build trust, such as active listening and acknowledging errors. The importance of situational awareness and understanding the perspectives of both patients and families is highlighted. The speaker emphasizes the need for empathy, connection, and maintaining hope in family meetings. They provide various communication tools and techniques, including acronyms like BRAVE, SPIKES, and NURSE. The speaker concludes by emphasizing the importance of practicing communication skills and providing recommendations based on a combination of medical data, expertise, and patient values. Overall, the goal is to create a supportive and collaborative environment during family meetings in the ICU.
Asset Subtitle
Patient and Family Support, 2023
Asset Caption
Type: two-hour concurrent | Dealing With Death in the ICU (SessionID 1201846)
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Presentation
Knowledge Area
Patient and Family Support
Membership Level
Professional
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Tag
Ethics and End of Life
Year
2023
Keywords
family meetings
intensive care unit
communication
bioethical dilemmas
patient autonomy
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