Dr Ross discusses her presentation at Heart Rhythm 2023, which took place May 19-21, 2023. Dr Ross is a nurse practitioner and clinical associate professor at Arizona State University. She also practices with the cardiac arrhythmia group at HonorHealth in Greater Scottsdale, Arizona. 

Transcript

Tell us about your approach to having proactive conversations with your patients and their families about cardiac implantable devices and end-of-life care. 

Ross: When we place implantable cardioverter-defibrillators (ICDs) in patients, one of the things that we know as clinicians is that we may also eventually need to talk about deactivating the device-shocking capability. Patients often do not know that. As clinicians in Western medicine, we have generally been trained to prioritize saving lives. When it comes to the end of a person's life, that focus on saving life may not be appropriate any longer, and it may be more appropriate instead to keep a patient comfortable and help them have a good death. However, a lot of us in the Western world are oftentimes not comfortable talking with our patients about that. It is a real struggle for the heart rhythm team and our patients and their families to figure out how to talk about this very tough topic of end-of-life care. It is also difficult for us to figure out when to talk about it. We do not want to spring this discussion on a patient at the end of their life. Indeed, we have all seen patients who have a lot of stress at the end of their life because they do not know we can turn off the ICD—no one has ever talked to them about it. Some patients do not want to talk about it ever, while other patients do want to talk about it at some point toward the end of life. In addition, there are other patients who say they wish they had known this information all along because they had been harboring this fear about what happens at the end, and if somebody had told them, it would not have been a question mark and they could have been comfortable knowing that they had the choice to make when the time was right. 

With that in mind, there is not a lot of research evidence to guide exactly what to do. The research, as you can imagine, is quite qualitative—it is about how people feel. You cannot really do a randomized, controlled trial on this kind of thing. In general, we are not as good in Western medicine about synthesizing qualitative research like we are with quantitative research. There have been some studies that have started to be put together. While there is not a single definitive answer, we do have some evidence-based guidelines from a variety of national and international associations. One guideline is a class I recommendation to inform patients about ICD deactivation if it is consistent with their goals and preferences. The guideline recommends doing this at a variety of times across the continuum of care, including before implant at the time of consent for implantation of a device, at the time of generator change, and during advanced care planning, which may come up when a patient's overall health condition changes. There is another guideline for heart failure (HF), as most of our patients who have an ICD also typically have heart failure. The class I recommendation is for patients with HF and life-extending therapies such as an ICD, to have the option of discontinuing those life-sustaining therapies, including in an anticipatory way before it needs to be done, and that this should be done across the continuum of care for HF. So those are our 2 guidelines that are based on the existing, largely qualitative body of evidence.

What are your take-home messages?

Ross: As members of the heart rhythm team, we want to know best practices for how the team can talk with patients. There are a few things to keep in mind. The entire heart rhythm team who is caring for the patient at different points in their continuum of care should really feel prepared, educated, and ready to talk with patients about ICD deactivation. It is not just up to the physician, the palliative nurse, or the technicians and nurses who are caring for that patient throughout the life of their defibrillator (and maybe multiple defibrillators!). To that end, it is a good idea to make sure that your whole team is educated. For a lot of us, we are not taught in our training about how to talk with patients and families about end-of-life care and ICD deactivation, so that can feel just as scary for us as it can feel for some patients. Therefore, education is key to feeling prepared and feeling like we have the self-efficacy to talk with our patients and their families. 

Another thing that can help us all be successful in talking with patients about tough conversations like ICD deactivation, or frankly any other health conversation, is to be aware of health literacy. It is important to remember that if we hand a pamphlet to a patient, the most current surveys on literacy in the United States suggest that about 1 in 8 people will not be able to read and understand it. About 55% of the population may be able to read it, but they may not be able to exercise good health literacy, which means to read, understand, and apply that material to their own health. Therefore, it is important that we are thoughtful about how we communicate. Some ways we can do that are to use simple language and pictures in whatever literature we give or show to our patients and their family members. We need to be mindful of the patient’s language, whether they have low English language skills, or maybe English is a second, third, or fourth language for them. Maybe Spanish, Polish, Ukrainian, or Swahili is their first language, so we need to be thoughtful of that. We also need to be thoughtful about patient culture. Different cultures have very different practices and beliefs regarding end-of-life care, so we should know a little about that. This is part of where our education comes in. If you do not know, look it up or ask somebody a few things. 

Also, please do not use jargon. As clinicians, we use many terms that are specific to heart rhythm care. Our patients do not understand that. We must speak in clear and simple language, and using an alphabet soup is not going to get that done. So, be thoughtful about how you would explain this to your grandmother, for example, and use those words, not jargon. 

Finally, when you are talking to patients and their family members, it is always a good idea to use a teach-back method. Ask the patient to explain back to you what you just told them—that is one way you can make sure that they really heard you and processed that information. You will know if they tell you back what you told them, and they did not jumble it around. It also gives you an opportunity to clear up any misconceptions, so always ask questions. What else do they want to know or are they wondering about? Make sure, above all else, that you have an open door for your patients and their loved ones to ask the questions they are wondering about.