End-of-Life Discussions With Cardiac Implantable Electronic Device Patients and Family Members: A Guideline Review and How to Start the Conversation

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EP LAB DIGEST. 2023;23(11):1,8-9.

One of the things that draws many heart rhythm professionals to the field is the knowledge that this work literally saves people’s lives. Nearly every cardiac electrophysiology (EP) lab professional has watched a patient in complete heart block perk right back up as soon as a pacemaker is implanted. For every patient who presents for an implantable cardioverter-defibrillator (ICD), it is clear if they were to experience a sudden cardiac arrest, a lifesaving shock will be deployed that allows them to continue living their life.

However, for many patients, a change in health down the road may revise their long-term goals, so that a normal heart rate or lifesaving shock might no longer be desirable. For those patients approaching end of life, management of their cardiac implantable electronic device (CIED) can shift to include ICD deactivation or pacemaker reprogramming. Heart rhythm professionals across disciplines—from physicians to EP lab technicians—must be ready and able to care for patients as they approach end of life, just as we care for them throughout the course of their CIED care when lifesaving is the goal.

Expert Recommendations Regarding CIED Deactivation

The 2010 expert consensus document¹ from the Heart Rhythm Society (HRS) in collaboration with the American College of Cardiology (ACC), American Geriatrics Society, American Academy of Hospice and Palliative Medicine, American Heart Association (AHA), European Heart Rhythm Association, and Hospice and Palliative Nurses Association, established that CIED deactivation at the end of life, including ICDs and pacemakers, is ethical and appropriate even though some clinicians or patients may not feel personally comfortable with it due to religious or personal beliefs.² The experts recommend that CIED deactivation discussions take place throughout the course of the patient’s clinical experience, starting before CIED implantation, similar to the shared decision-making about ICD implant that is required in the United States. Importantly, this approach with early conversation and advance planning can help to avoid ethical dilemmas at the end of life.

As with the expert consensus statement on CIED deactivation, the 2017 clinical practice guideline on management of patients with ventricular arrhythmias and the prevention of sudden cardiac death³ from the AHA, ACC, and HRS includes a Class I recommendation to inform patients about ICD deactivation if that is in line with their health goals and personal preferences. The document also recommends early conversations starting before ICD implant, at the time of generator change, and during advance care planning when lifesaving therapies may no longer be the goal.

Similarly, the 2022 heart failure management guidelines⁴ from the AHA, ACC, and Heart Failure Society of America recommend that patients with advanced heart failure should be informed of the option to discontinue life-extending therapies such as CIEDs at multiple points throughout their continuum of care, beginning at the time that the therapies are initiated. In the case of CIEDs, that conversation should begin before implant.

EP lab practices are overwhelmingly similar when it comes to CIED implants. However, there is wide variation in practices and team member involvement in CIED management at the patient’s end of life. Practice variation is not due to a lack of evidence or research literature. Many scholars study CIED management at the end of a patient’s life. However, most of the literature is concentrated in palliative care medicine, which means that it is not routinely part of the heart rhythm community conversation. Despite recommendations from the leading experts in cardiology including the AHA, patient-facing educational materials about ICDs from the AHA’s website (www.heart.org) do not mention ICD deactivation or advance care planning.

Team Roles

Currently, physicians are the most likely heart rhythm team members to initiate conversations about CIED deactivation. However, a full team of heart rhythm professionals cares for patients throughout the patient’s experience and across care settings. With that in mind, patient care—including CIED deactivation conversations—should shift to a team approach.

While a physician or advanced practice team member might still be the one to initiate the conversation, every heart rhythm team member should be ready and able to talk with patients and their loved ones about CIED deactivation.⁵

When to Have Conversations

Consistent with the guidelines, start the deactivation conversation before implantation. Sometimes, if the implant is happening in an emergency situation, a detailed pre-implant conversation about future planning may not be feasible or practical. In that case, the conversation can take place as part of the routine teaching that every patient receives before going home from the hospital. In other cases, if a patient is experiencing extreme emotional distress or a mental health crisis, the best way to support that patient may be to hold off on the conversation until their immediate crisis is stabilized.

After the initial implant, revisit the conversation at the time of each generator change, with any significant change in clinical status (eg, with a new diagnosis of cancer or worsening heart failure) and at the time of end-of-life care planning (Figure 1). At each of these times, it is important to reassess the patient’s mental and emotional status; if the patient is in distress or crisis, the most appropriate thing may be to postpone the CIED deactivation conversation to later, when the crisis is resolved.

It is important to remember that every patient is different, and research has shown a range of responses to early discussions about CIED deactivation.⁶ While some patients do not want to contemplate death at all, others appreciate the early and ongoing conversations.

How to Have Conversations

It is important to practice good health literacy. According to the last national survey of adult literacy conducted by the US Department of Education in 2003,⁷ only a small minority of adults are fully proficient with health literacy. About half have “intermediate” health literacy levels. One in 5 adults has only basic health literacy skills, and about 1 in 6 adults has below-basic health literacy. With that in mind, EP lab professionals and heart rhythm team members should always use good health literacy practices—health literacy universal precautions—to communicate about complex topics such as CIED deactivation.  Health literacy universal precautions are relevant whether communicating with patients, family members, and heart rhythm team members from every professional discipline. Tips include:

• Be Clear
  • Use plain and simple language, aiming for a 5th grade reading level with any written materials.
  • Avoid using jargon, acronyms (without explaining them), slang terms, or complicated medical labels.
  • Use pictures to illustrate concepts on any written materials.
• Be Relevant
  • Make sure to communicate in a language that the patient understands. Use a certified interpreter to assist with the conversation if there is any question about language fluency.
  • Be aware of cultural practices that may be important to the patient and their loved ones. Different cultures hold a variety of beliefs and practices related to death and dying. For example, in some cultures, it is taboo to talk about death with the person who is nearing the end of their life, so communication may take place exclusively with family members.
• Be Understood
  • Make sure to ask the patient if they have any questions.
  • Ask the patient to restate the conversation in their own words—this is known as the teach-back method. The patient may understand what was relayed differently than intended.
  • Continue to follow up over time. Often, it takes multiple conversations over days, months, or even years for complex information to sink in, particularly when it is around a stressful subject such as end-of-life care.

How to Frame the Conversation

Particularly when talking with patients about initially implanting a CIED as a lifesaving device, many clinicians fear that talking about end-of-life care can be at odds with the issue at hand, which centers on encouraging patients to adopt a lifesaving therapy. To that end, framing the deactivation conversation as part of the pre-implant or generator change conversation may feel challenging. However, there are some key phrases that can be used to build the congruent case for CIED deactivation, even in the context of managing pre-implant conversations in the most stressful conditions, such as when a patient presents with complete heart block or survives cardiac arrest. For example:

• “The point of the pacemaker/ICD is to allow you to live your life and do the things you want to do without fear of a potentially dangerous arrhythmia.”
• “If or when the time comes that you no longer want an ICD shock to stop a potentially dangerous arrhythmia, we can turn off the shocking capacity of your ICD.”
• “Turning off your pacemaker/ICD is not painful and does not require surgery.”
• “The important thing to know is that the pacemaker/ICD is here to support you as long as you want it.”

The most important thing to include in the conversation is the opportunity for the patient/family to weigh in. Ask them, “What questions do you have?” or “What are you wondering about?” Uncertainty can be the most stressful component of health care experiences for patients and their family members.

Moreover, the advent of social media has meant that many patients and family members seek information on the internet that might not be entirely accurate, leading them down a path of misinformation that can increase misunderstanding and lead to worse outcomes, including increased stress after CIED implantation or refusal of CIED implantation, which could otherwise improve quality of life or avoid arrhythmic morbidity and mortality. Helping patients get the answers to their questions goes a long way toward reducing stress, empowering patients with knowledge and high-quality information, and improving health-related quality of life. 

Disclosure: The author has completed and returned the ICMJE Form for Disclosure of Potential Conflicts of Interest. Dr Ross reports no conflicts of interest regarding the content herein.

References

1. Lampert R, Hayes DL, Annas GJ, et al. HRS expert consensus statement on the management of cardiovascular implantable electronic devices (CIEDs) in patients nearing end of life or requesting withdrawal of T=therapy. Heart Rhythm. 2010;7(7):P1008-1026. doi:10.1016/j.hrthm.2010.04.033

2. Freemantle M, Murtagh F. Implantable cardioverter defibrillator devices: when, how and who should discuss deactivation with patients: a systematic literature review. BMJ Support Palliat Care. 2022;12(4):359-367. doi:10.1136/bmjspcare-2021-002894

3. Al-Khatib SM, Stevenson WG, Ackerman MJ, et al. 2017 AHA/ACC/HRS guideline for management of patients with ventricular arrhythmias and the prevention of sudden cardiac death: a report of the American College of Cardiology/American Heart Association Task Force on Clinical Practice Guidelines and the Heart Rhythm Society. Circulation. 2018;138(13):e272-e391. doi:10.1161/CIR.0000000000000549

4. Heidenreich PA, Bozkurt B, Aguilar D, et al. 2022 AHA/ACC/HFSA guideline for the management of heart failure. Circulation. 2022;145(18):e895-e1032. doi:10.1161/CIR.0000000000001063

5. Hill L, McIlfatrick S, Taylor BJ, et al. Patient and professional factors that impact the perceived likelihood and confidence of healthcare professionals to discuss implantable cardioverter defibrillator deactivation in advanced heart failure: results from an international factorial survey. J Cardiovasc Nurs. 2018;33(6):527-535. doi:10.1097/JCN.0000000000000500

6. Freemantle M, Murtagh F. Implantable cardioverter defibrillator devices: when, how and who should discuss deactivation with patients: a systematic literature review. BMJ Support Palliat Care. 2022;12(4):359-367. doi:10.1136/bmjspcare-2021-002894

7. Kutner M, Greenberg E, Jin Y, et al. The health literacy of America’s adults: results from the 2003 National Assessment of Adult Literacy. NCES 2006-483. U.S. Department of Education, Institute of Education Sciences, National Center for Education Statistics. Published September 2006. Accessed August 31, 2023. https://nces.ed.gov/pubs2006/2006483_1.pdf

8. AHRQ health literacy universal precautions toolkit. Agency for Healthcare Research and Quality. Published September 2020. Accessed August 31, 2023. https://www.ahrq.gov/health-literacy/improve/precautions/index.html