The "Burned-Out Primary" Diagnosis in End-Stage Device Therapy: Recognizing When Cardiac Implantable Electronic Devices Transition from Therapeutic to Burdensome

Dr Neeraj Manikath , claude.ai

Abstract

Cardiac implantable electronic devices (CIEDs)—including pacemakers (PPMs) and implantable cardioverter-defibrillators (ICDs)—represent cornerstone therapies in managing arrhythmias and heart failure. However, as patients progress to end-stage disease states, these once-life-saving devices may transition from therapeutic allies to sources of suffering. This review examines the complex clinical, ethical, and practical considerations surrounding device therapy in terminally ill patients, providing a framework for recognizing when a CIED's primary indication has "burned out" and the device now prolongs suffering rather than meaningful life. We explore the specific clinical scenarios, the harms inflicted by continuing device therapy, communication strategies for difficult conversations, and the procedural aspects of device deactivation. This knowledge is essential for internists, cardiologists, and palliative care specialists managing the growing population of patients with CIEDs approaching end of life.

Introduction

The landscape of cardiac device therapy has expanded dramatically over the past four decades. Approximately 1.4 million pacemakers and ICDs are implanted annually worldwide, with over 3 million Americans currently living with these devices.¹ As device technology has advanced and indications have broadened, we increasingly encounter a paradoxical clinical challenge: patients whose original device indication no longer applies, whose underlying disease has progressed beyond reversibility, yet whose device continues to function exactly as programmed—sometimes to the patient's detriment.

The concept of the "burned-out primary" diagnosis refers to situations where the original therapeutic rationale for a CIED has become obsolete in the context of end-stage disease progression. Unlike device malfunction or infection requiring extraction, this scenario involves a properly functioning device that has outlived its clinical utility and may now actively impede a dignified death. Recognition of this transition point represents a critical competency for modern physicians managing complex cardiovascular patients.

The Clinical Evolution: From Indication to Obsolescence

Original Indications and Their Natural History

CIEDs are typically implanted for well-defined indications based on robust evidence:

Pacemaker Indications:

Symptomatic bradycardia from complete heart block
Sick sinus syndrome with symptomatic pauses
High-degree AV block post-myocardial infarction
Chronotropic incompetence limiting functional capacity

ICD Indications:

Secondary prevention after cardiac arrest or sustained ventricular tachycardia
Primary prevention in patients with reduced ejection fraction (<35%) from ischemic or non-ischemic cardiomyopathy
Specific genetic syndromes (long QT, Brugada, hypertrophic cardiomyopathy)

The Trajectory Toward Obsolescence

Several clinical trajectories lead to device indication burnout:

1. Progressive Heart Failure: A patient receives an ICD for an ejection fraction of 25% following anterior MI. Over 15 years, despite optimal medical therapy, ischemic cardiomyopathy progresses to NYHA Class IV with biventricular failure, severe mitral regurgitation, and cardiac cachexia. The original arrhythmic risk persists, but overall prognosis has shifted from years to months.²

2. Concurrent Terminal Illness: A 78-year-old with a dual-chamber pacemaker for complete heart block develops metastatic pancreatic cancer with 3-month prognosis. The pacemaker, which successfully treated symptomatic bradycardia, now may prolong the dying process.

3. Advanced Age and Frailty: An 89-year-old with an ICD placed at age 75 for ischemic cardiomyopathy now has severe dementia, recurrent aspiration pneumonia, and functional dependence. The device's mortality benefit, calculated over 5-7 years in trials, no longer applies.³

4. Multiple Comorbidity Accumulation: Device recipients often accumulate multiple organ system failures—chronic kidney disease progressing to dialysis, advanced COPD requiring home oxygen, diabetes with multiple complications—each incrementally eroding quality and quantity of life expectancy.

The Specific Harms: When Devices Become Instruments of Suffering

ICD Shocks at End of Life: The Electrical Storm of Dying

The most dramatic and distressing manifestation of device-related harm is inappropriate or appropriate-but-unwanted ICD therapy during the dying process. As the myocardium becomes increasingly irritable in end-stage heart failure or during multiorgan failure, ventricular arrhythmias become more frequent.⁴

The Pathophysiology of Terminal Arrhythmias: Dying patients develop metabolic derangements (acidosis, hyperkalemia, hypoxia) that lower the ventricular fibrillation threshold. The same arrhythmias that would have been appropriately treated when the patient had years of life expectancy now represent the natural mechanism of cardiac death. The ICD, functioning perfectly, delivers painful shocks that neither improve quality of life nor extend meaningful survival.

Clinical Vignette: A 72-year-old man with end-stage ischemic cardiomyopathy, on maximum inotropic support, experiences 15 ICD shocks in his final 6 hours of life. Each 750-volt shock causes visible grimacing and distress. Family members, traumatized by witnessing these events, describe feeling "helpless" as the device "tortured" their dying father. Subsequent psychological studies demonstrate lasting emotional trauma in family members who witness end-of-life ICD shocks.⁵

Pearl: ICD shocks are perceived as equivalent to being "kicked in the chest by a horse"—imagine experiencing this repeatedly while dying. A single shock delivers enough energy to illuminate a 100-watt bulb for 1 second across the myocardium.

Pacemaker-Prolonged Dying: The Cardiac Persistence Paradox

While less dramatically traumatic than ICD shocks, pacemakers can create their own form of suffering by preventing natural death:

The Asystole That Cannot Occur: In natural death from progressive heart failure, declining cardiac output eventually leads to bradycardia, then asystole—typically a peaceful process over minutes to hours. A pacemaker prevents this natural sequence, maintaining mechanical cardiac activity even as other organ systems fail, potentially prolonging the dying process by hours to days.⁶

The Syndrome of Pacemaker-Maintained Circulation: Patients may experience:

Prolonged consciousness during multiorgan failure
Extended duration of pain, dyspnea, or delirium
Delayed family closure and anticipatory grieving
Increased suffering without therapeutic benefit

Oyster: Unlike ventilators or vasopressors which families conceptually understand as "artificial support," pacemakers are often not recognized as life-prolonging technology. Families frequently express surprise when learning that pacemaker deactivation is an option: "We thought it was just helping the heart beat regularly."

The Recognition Challenge: Identifying the Transition Point

Clinical Indicators of Device Indication Burnout

Prognostic Markers Suggesting Obsolescence:

Heart Failure Progression:
- NYHA Class IV symptoms despite maximal medical therapy
- Inability to participate in activities of daily living
- Recurrent admissions (≥3 hospitalizations in 6 months)
- Cardiac cachexia or anasarca despite diuresis
- Need for continuous inotropic support
Functional Decline:
- ECOG performance status ≥3
- Karnofsky score <40
- Complete dependence for self-care
Prognostic Scores:
- Seattle Heart Failure Model predicting <6 months survival
- MAGGIC score indicating very high mortality risk
- Concurrent illness with clear terminal trajectory⁷
Device-Specific Concerns:
- Multiple appropriate ICD shocks (≥5 in one month)
- Electrical storm requiring frequent shocks
- Patient expressing fear or anxiety about future shocks
- Family reporting quality-of-life deterioration related to device

The Differential Diagnosis: Burned Out vs. Salvageable

Critical distinction must be made between truly end-stage disease and potentially reversible deterioration:

Still Salvageable:

Acute decompensation on suboptimal medical therapy
Uncontrolled arrhythmias amenable to ablation or antiarrhythmic adjustment
Volume overload from medication non-adherence
Anemia, thyroid dysfunction, or other correctable factors

Truly Burned Out:

Maximum tolerated heart failure therapy already implemented
Multiple ablation failures or anatomically unablatable substrate
Refractory symptoms despite guideline-directed management
Progressive decline over months despite optimal intervention

Hack: Apply the "surprise question": "Would I be surprised if this patient died in the next 6-12 months?" If the answer is "no," device deactivation discussions should be initiated. Studies show this simple question has 74% sensitivity for predicting 12-month mortality in heart failure.⁸

The Ethical and Legal Framework

Ethical Foundations

Device deactivation at end of life is ethically equivalent to withdrawing other life-sustaining treatments and is supported by major medical organizations:

Key Ethical Principles:

Autonomy: Patients retain the right to refuse any medical treatment, including device therapy, at any time. This extends to previously consented interventions that no longer align with their goals.⁹
Proportionality: Medical interventions should be proportionate to achievable goals. When a device's burdens (shocks, prolonged dying) exceed benefits (meaningful life extension), deactivation is ethically justified.
Non-maleficence: Preventing suffering takes precedence when cure is impossible. Continuing harmful device therapy violates the principle of "first, do no harm."
Distinction from Euthanasia: Device deactivation allows natural death from underlying disease; it does not introduce a new cause of death. This is legally and ethically distinct from physician-assisted suicide.¹⁰

Legal Considerations

Established Precedents:

The 2010 Heart Rhythm Society Expert Consensus Statement affirms that CIED deactivation is legally permissible and ethically appropriate when consistent with patient goals.¹¹
No legal jurisdiction in the United States considers device deactivation as euthanasia or physician-assisted suicide
Deactivation does not require different consent processes than other treatment withdrawal

Protected Practice:

Physicians cannot be held liable for appropriately deactivating devices at patient request
Institutional ethics committees and legal counsel uniformly support this practice
Documentation of decision-making process provides additional protection

Pearl: Despite clear ethical and legal consensus, physician discomfort remains the primary barrier to device deactivation. Studies show only 27% of electrophysiologists report comfort with deactivation discussions, reflecting training gaps rather than ethical ambiguity.¹²

The Conversation: Communication Strategies

Preparation and Setting

Optimal Conditions:

Private, quiet environment
Adequate time (30-60 minutes for initial discussion)
Key family members present if patient desires
Interdisciplinary team representation (cardiology, palliative care, nursing)
Review patient's advance directives and documented wishes beforehand

The Communication Framework

1. Establish Current Understanding: "Help me understand what you know about your heart condition and what your doctors have told you about your defibrillator."

2. Provide Prognostic Information with Compassion: "Your heart has become progressively weaker despite our best treatments. The heart failure has reached an advanced stage where your heart muscle cannot pump effectively anymore. I wish I had different news to share with you."

3. Explore Goals and Values: "Given where things are with your heart, what's most important to you now? What are you hoping for? What are you worried about?"

4. Introduce Device Deactivation Concept: "As your heart becomes weaker, the electrical system also becomes fragile. Your defibrillator may interpret these natural changes as dangerous rhythms and deliver painful shocks, even when your body is naturally slowing down. These shocks won't help your heart get better at this point—they can actually cause more suffering in your final days."

5. Present Options Clearly: "We have the option to turn off the shock function of your defibrillator. This means it won't deliver those painful shocks. The pacing function can remain on if you want—that helps your heart maintain its rhythm. Or we can turn that off too, which would allow your heart to follow its natural course."

6. Address Common Concerns:

"Will I die immediately?" "No. Most patients live days to weeks after deactivation. The device wasn't keeping you alive—it was preventing one specific way of dying. You'll die from the heart failure progression, which typically happens gradually."
"Is this giving up?" "This is recognizing where we are in your illness and choosing comfort and quality over extending the dying process. It's a thoughtful decision about how you want to spend your remaining time."
"Will I feel it turn off?" "No. The deactivation is painless—we use a programmer held over your chest. You won't feel anything at that moment."

7. Provide Reassurance About Ongoing Care: "Turning off the device doesn't mean we're turning off our care for you. We'll focus intensely on keeping you comfortable—managing symptoms like shortness of breath, pain, and anxiety. You'll receive excellent palliative care."

Oyster: Avoid the phrase "there's nothing more we can do." This devastating statement suggests abandonment. Instead: "We're shifting from trying to fix your heart to focusing entirely on your comfort and quality of life—that's not nothing, that's everything."

Addressing Family Concerns

Families often experience moral distress about device deactivation:

Common Family Objections:

"We're killing him"
- Response: "Your father's heart disease is what will cause his death, not our decision to turn off the shocks. We're preventing him from suffering through painful shocks during a natural process."
"He's a fighter—he wouldn't want us to give up"
- Response: "Being a fighter means facing reality with courage. Fighting doesn't always mean aggressive treatment—sometimes it means choosing dignity and comfort when cure isn't possible. What do you think he would say about experiencing repeated electrical shocks in his last days?"
"But his cousin lived for years with a defibrillator"
- Response: "Every person's journey is different. Your father's heart has progressed to a stage his cousin's hadn't reached. The device that helped his cousin isn't helping your father in the same way anymore."

The Procedural Aspects: Device Deactivation

Multidisciplinary Team Involvement

Essential Team Members:

Electrophysiologist or cardiologist: Technical device deactivation
Palliative care specialist: Symptom management planning
Primary internist or hospitalist: Coordinating care
Nursing staff: Ongoing patient/family support
Social work: Psychosocial support and resources
Ethics consultation: For complex or contested cases
Chaplaincy: Spiritual care as desired

The Deactivation Process

Pre-Deactivation Steps:

Documentation:
- Detailed progress note documenting:
  - Clinical rationale (prognosis, symptom burden, goal clarification)
  - Patient decision-making capacity assessment
  - Discussion with patient/family including alternatives presented
  - Patient's stated wishes and values
  - Consensus among medical team
- Formal order: "Deactivate ICD shock therapy" or "Deactivate pacemaker"
- Update advance directives to reflect decision
Symptom Management Planning:
- Anticipate post-deactivation scenarios
- Prescribe anxiolytics (lorazepam 0.5-2mg q4h PRN)
- Ensure opioids available for dyspnea (morphine 2-5mg q2h PRN)
- Consider palliative sedation protocols for refractory distress
- Establish DNR/DNI status if not already in place
Setting Selection:
- Outpatient/Home: Appropriate for stable patients with clear timeline
- Inpatient: Preferred when death anticipated within days
- Hospice facility: Ideal for coordinated end-of-life care
- Consider patient/family preference for location

Technical Deactivation:

ICD Deactivation:

External programmer placed over device
Authentication and device interrogation
Ventricular tachycardia/fibrillation detection disabled
Antitachycardia pacing disabled
Bradycardia pacing typically maintained unless specifically requested otherwise
Procedure takes 5-10 minutes
Patient experiences no discomfort

Pacemaker Deactivation:

Same programmer technique
All pacing functions disabled
Critical to verify patient is not pacemaker-dependent before deactivation
If uncertainty exists about underlying rhythm, may perform temporary deactivation test while monitoring

Hack: For ICD deactivation, consider using a magnet as a temporary measure while awaiting formal programmer access. Placing a magnet over an ICD suspends tachyarrhythmia detection, preventing shocks while maintaining pacing. This can provide immediate relief in emergent situations (electrical storm in actively dying patient) while formal deactivation is arranged. However, magnet application is temporary—formal deactivation should follow.¹³

Post-Deactivation Management

Immediate Follow-Up (24-48 hours):

Contact by palliative care or primary team
Assess symptom burden
Provide psychological support to patient and family
Reinforce availability for questions or concerns

Ongoing Care:

Transition to hospice when appropriate
Continue disease-modifying medications if they provide symptom benefit
Aggressive management of dyspnea, pain, anxiety, delirium
Regular family meetings to discuss progression and expectations

Expected Clinical Course:

Variable survival post-deactivation: hours to months depending on underlying disease burden
Most patients with end-stage heart failure survive days to 2-3 weeks
Death typically occurs from progressive pump failure, not sudden arrhythmic death (since shock function off)
Death is generally peaceful when supported by adequate palliative care

Special Populations and Scenarios

The Cognitively Impaired Patient

Patients with advanced dementia or delirium present unique challenges:

Decision-Making:

Surrogate decision-makers use substituted judgment standard
Review any advance directives or prior expressed wishes
Consider what patient would want if they could meaningfully understand current situation
Ethics consultation helpful if family disagreement exists

Clinical Considerations:

These patients may not report shock pain appropriately
Behavioral changes (agitation, decreased responsiveness) may indicate shocking
Device interrogation may reveal occult shocks
Lower threshold for deactivation given inability to articulate suffering¹⁴

The Sudden Deterioration

Occasionally, previously stable device patients rapidly decompensate:

Acute Scenarios:

Cardiogenic shock requiring multiple pressors
Electrical storm with multiple shocks per hour
Acute multiorgan failure

Accelerated Decision Process:

Emergency palliative care consultation
Abbreviated but meaningful goals-of-care discussion
May need to make decisions within hours
Document thoroughly to prevent later family guilt or second-guessing

Cultural and Religious Considerations

Diverse Perspectives on Device Deactivation:

Some religious traditions view device deactivation as interfering with divine will, while others see continued suffering as contrary to religious values. Key approach:

Explore specific religious or cultural beliefs early
Involve chaplaincy or community religious leaders
Emphasize that deactivation allows natural death, not hastening death
Respect family's timeline for decision-making
In irreducible conflict, ethics consultation is essential

Pearl: Islamic, Jewish, and Catholic bioethics scholars have all published supportive positions on device deactivation when proportionate to patient goals, though individual interpretation varies. Proactive exploration of these issues prevents crisis-level ethical dilemmas.¹⁵

System-Level Considerations

The Role of Advance Care Planning

Proactive Discussions: Device implantation represents an ideal trigger for advance care planning:

At implantation: "This device may need to be turned off if you become very ill in the future. Let's talk about your wishes."
At routine follow-up: "If your heart condition worsens despite the device, how would you want us to approach decisions about the device?"
During hospitalization: Deteriorating status prompts goals-of-care reassessment

Documentation:

Advance directives should specifically address device deactivation preferences
Physician Orders for Life-Sustaining Treatment (POLST) forms should include device status
Regular review and update as clinical status changes¹⁶

Education and Training Gaps

Current Deficiencies:

Only 50% of cardiology fellowship programs include CIED deactivation training¹⁷
Many practicing electrophysiologists report inadequate training in palliative aspects
Nursing and allied health staff often unaware of deactivation option

Educational Solutions:

Integrate device deactivation into fellowship curricula
Simulation exercises for communication skills
Institutional protocols and pathways
Interdisciplinary education (cardiology, palliative care, internal medicine)

Institutional Infrastructure

Elements of Successful Programs:

Clear Policies: Written institutional guidelines for device deactivation
Accessible Expertise: Designated electrophysiologists comfortable with deactivation
24/7 Availability: Programmer access for urgent situations
Palliative Care Integration: Automatic consultation triggers for appropriate patients
Quality Metrics: Tracking of device deactivation rates and timing relative to death
Bereavement Support: Follow-up with families after patient death

Hack: Create institutional "Device Deactivation Order Sets" in electronic medical records that automatically:

Generate appropriate documentation templates
Trigger palliative care consult
Order symptom management medications
Notify electrophysiology for device programming
Update DNR/DNI status This systematizes the process and reduces omissions in high-stress situations.

Pearls and Oysters: Practical Wisdom

Pearls

The 6-Month Rule: If a patient wouldn't qualify for hospice (6-month prognosis), device deactivation discussions are premature for most patients—but not for those experiencing electrical storms or expressing wish for deactivation.
Shocks Beget Shocks: Once a patient experiences one ICD shock, risk of subsequent shocks increases dramatically. This is the moment for urgent goals-of-care reassessment, not after 10-15 shocks have occurred.
The "Graduated" Approach: For ambivalent patients, offer stepwise deactivation: first disable ICD shocks while maintaining pacing, allowing patient to experience freedom from shock anxiety before deciding about pacing deactivation.
Timing Matters: Best outcomes occur when deactivation discussed weeks-to-months before death, not hours-to-days. Earlier discussions are less traumatic, more thoughtful, and allow time for psychological adjustment.
The Visible Device: Patients and families can see and feel the device beneath the skin—this tangible presence makes deactivation feel more "real" than withdrawing medications. Acknowledge this psychological dimension.

Oysters (Hidden Challenges)

The Well-Meaning Technician: Device clinic staff, trained to optimize device function, may resist deactivation discussions, viewing them as "failure." Interdisciplinary education prevents this.
The Implanting Physician Phenomenon: Doctors who implanted devices sometimes struggle more with deactivation decisions due to emotional investment in "their" device. Involving a different physician may facilitate difficult conversations.
The Insurance Paradox: Hospice benefits may not cover device management or deactivation, creating perverse incentives. Proactive negotiation with insurers prevents delays.
The "What If" Syndrome: Families often express guilt after deactivation, wondering if patient would have survived longer. Anticipate and address this explicitly: "We can't know exactly when death will occur, but we can ensure the process is as comfortable as possible."
The Last-Minute Request: Patients may request deactivation in their final hours when truly irreversible dying has begun. While ethically appropriate, practical barriers (programmer unavailability, family present wanting to delay) can complicate. Having 24/7 access protocols prevents suffering due to logistical delays.

Conclusion

The "burned-out primary" diagnosis in device therapy represents a critical inflection point where medicine's technological capabilities must be thoughtfully subordinated to patient-centered goals. As cardiovascular devices become increasingly sophisticated and ubiquitous, recognizing when their primary indication has become obsolete—and when they transition from therapeutic to burdensome—emerges as an essential clinical competency.

The framework presented here provides internists and cardiologists with tools to:

Identify patients whose devices may cause more harm than benefit
Navigate complex ethical terrain with confidence
Conduct compassionate conversations about device deactivation
Implement deactivation procedures safely and legally
Build institutional systems supporting high-quality end-of-life device care

As our patient populations age and live longer with advanced cardiovascular disease, these skills will only grow in importance. The measure of excellent cardiac care extends beyond implantation rates and device longevity to encompass recognition of when technology has fulfilled its purpose and humane transitions to comfort-focused care.

Final Pearl: The goal is not to determine when a patient should die, but to ensure that when death approaches—as it inevitably does—it occurs with dignity, free from preventable technological suffering, surrounded by what matters most to that individual patient.

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Author's Note: This review integrates clinical experience, ethical frameworks, and practical wisdom to guide physicians through one of cardiology's most challenging scenarios. The goal is not simply to know when devices can be deactivated, but to recognize when they should be—and to have the courage and communication skills to shepherd patients and families through these profound transitions with compassion and competence.