Communication Strategies for Assessing Diabetic Patients' Understanding and Values in Conversations About Treatment and End-of-Life Care
June 2021
For the Deep Dive in June 2021, our client champion was Dr. Pedro Teixeira, a Vascular and Trauma Surgeon and Associate Professor of Surgery at Dell Medical School. The following summary captures the recommendation that the Think Tank shared during our in-person Deep Dive discussion and list serv circulation.
Background
As vascular surgeon, Dr. Teixeira frequently meets patients with diabetes who after long-term difficulties healing wounds, are faced with making decisions about amputation. Dr. Teixeira shared that by the time someone meets him to discuss possible amputations of a toe, the likelihood of losing their foot or leg or dying in the next year is high. However, for many patients, they are unaware that they are near the end-of-life, and or focus on saving a limb although an amputation in some cases may give a better quality of life. Dr. Teixeira wants to ensure his patients are making informed decisions about surgeries.
Opening the conversation
In many responses, Think Tank members emphasized the sequence of the conversations are of paramount importance - begin the conversation by getting to know the patient and assessing their insight and values. Laying this foundation is necessary for reframing and quality of live conversations to occur successfully thereafter. This kind of conversation requires communication that is validating, tailored to the patient, and shows compassion. The Think Tank shared the recommendations and strategies below with these qualities in mind.
How can a surgeon assess a patient's level of understanding about what the future of their disease progression looks like?
| Takeaways | Recommendations |
|---|---|
| Build rapport and learn about patients' values using open-ended questions | Using an open-ended interview style, you can establish patient trust and learn about their quality of live values around mobility, communication, and independence. Patients can have an unconscious authority bias, so it's important to encourage them to express themselves freely from the beginning of the conversation. The patient's answers to, "Tell me what matters to you," and "What does a good day look like right now for you?" can help you structure later parts of decision-making conversations. |
| Use thoughtful wording when pivoting the conversation to insight assessment. | Identifying patients' obstacles to adherence can provide insight about their understanding. Try asking, "How did you come to be diagnosed with diabetes?", "What are some obstacles day-to-day in managing your diabetes?", "What are your goals for your health?", and "How serious would you say is your diabetes?" Clarissa Johnston noted that wording matters. "What have your doctors told you about your health/diabetes/wound?" instead of "What is your understanding?" The latter phrasing can feel like the patient is being quizzed or tested. |
| Gently and clearly reframe misconceptions to pivot the conversation. | Paraphrase what you heard and then set the agenda for the next part of the conversation, "At your last visit, it sounds like you learned XYZ, and have been struggling lately. I'm glad you were able to meet with me. Things have changed and if it's okay with you, I'd like to ask you some questions so we can figure out your treatment together." |
| Recognize the influence of proxy or family involvement. | Leave room for people who don't want to be influenced by their proxy or family members. Tatiana mentioned that when guiding the creation of advanced directives, they encourage patients to first approach the decisions alone or with their physician so that they patient can process their opinions themselves. Tatiana elaborated, "Put the ball in their court. This could sound like, 'whether they're here or not, it's up to you.'" |
| Avoid battle metaphors and "end-of-life" phrasing. | A couple general notes shared by Shana and Virginia: Patients may have a knee-jerk "yes" reaction to "fighting" or "battling" the disease, even if it's not what they deep down value in regard to quality of life. Tatiana advised to avoid the phrase "end-of-life" when beginning treatment planning conversations. The advice here is not about avoiding discussion of dying, but to sustain hope and center decisions around quality of life. |
| Integrate the Best Case/Worst Case tool into the conversation, and then reverse it. | One place to start with decision-making conversations is using the Best Case/Worst Case tool. This is a graphic that illustrates two or more possible decisions and what the best and worst outcomes of those scenarios look like. Remington shared that, in her experience, this tool works best in reverse, meaning, after explaining the treatment options and possible outcomes, ask the patient to voice what they believe their best, worst, and most probable cases will be. This allows clinicians to further identify the patients' values, how they're weighing risks, and target open-ended follow-up questions. She elaborated on the strength of this strategy, "Using the tool in this way allows the patient to clearly and honestly share their risk analysis without concern for being judged as it feels much more like telling stories than answering a binary question." |
| Validate their fears and emphasize hope during the conversation. | These conversations can bring up a lot of emotions and uncertainty, and it's important to keep hope alive. Use validating responses, "I hear your fear about this - it sounds like you were hoping for this appointment to be the relief you're looking for." Laura, Remington, and David recommended the strategy of responding with "I wish/I hope" statements, "I wish I could take all your pain and fears away right now." Asking questions like, "What are you hoping for?" can be effective in further identifying values. |
| Once you know what the patient values, emphasize what they can control in the situation. | Mike related that when people are presented with choices that don't feel attainable, they go into fear avoidance mode and can shut down the conversation. Helping people understand what they can control can keep patients hopeful. "What I'm hearing from you is that the worst case would be to have a lot of pain and not be able to communicate with your family. With XYZ option(s), you can prioritize pain management and your family being present. What do you think about that?" |
| Present the non-surgical option as an active choice. | Remington offered, "Focus on active verbs. Never say, "We won't do anything." Even if the option is having cake at home while resting on pain medication. Patients want to feel like they have a real choice between doing the procedure, starting hospice, or trying something in between." |
| Ask how much information the patient wants to kinow about the dying process. | An opt-in part of the discussion is to talk about what it looks like to die of a non-healing wound or in hospice care. The information is important (e.g. length of life, pain level, and quality of life) but should be brought up as a question, "We talked about your best-case scenario involving, at some point, passing away at home. I know a lot of patients don't like to talk about dying, but some have found it very helpful to have the conversation ahead of time. I can share more information about what that process looks like, if you want." Remington elaborated that, "A very short description of what it could loook like to die from this can go a long way in helping them make decisions. A brief conversation I had with a patient about heart failure made an immense impact in their well-being and their decisions to engage in aggressive interventions or to begin hospice." |
| You are not alone - take a team approach to conversations. | Several Think Tank members brought up - you are not alone in this conversation. Ask the social workers and chaplains in your system if they would be willing to assist with these conversations. And if you haven't already, connect with a hospice representative to refer initial consults as part of the decision process. Another reason to involve other team members, Karen mentioned, is that caregivers, if involved, need clear and detailed information about loved one's practical needs (e.g. finances and supplies) - and having a point person to answer those questions helps the patient and caregiver feel supported. |
Resources
Think Tank members offered several helpful external resources and forms for having quality of life discussions. Remington produced these three brief videos that are tailored to patients and families preparing to have a planning conversation. The video titled "The Goals of Care" provides concrete examples and discussion points surrounding everyday quality of life questions.
Resources from Texas Talks can help providers and patients discuss and memorialize their preferences for care. KodaHealth offers a guided online platform for completing advance care plans. Both include patient-centered forms created for families to complete at home or with their physicians.