The Ethics of Deactivating Implanted Cardioverter Defibrillators

To the Editor:

In his article "The Ethics of Deactivating Implanted Cardioverter Defibrillators," (1) Dr. Berger raises the important issue of advances in technology outstripping advances in ethical decision-making practices. His comparison of deactivating an ICD to discontinuing hemodialysis is valuable in helping to clarify the issues inherent in the decision to remove active and invasive therapies. I hold significant concern, however, about the parallel drawn between deactivation of an ICD and deactivation of a permanent pacemaker. The nature of implanted cardiac devices and their functions related to the dying process is inherently different, and must be considered as such. An ICD delivers therapy to terminate a life-threatening arrhythmia by delivering a shock or overdrive pacing. This therapy is most often sensed by the patient, and is typically associated with marked discomfort. Conversely, a permanent pacemaker, once implanted, is typically not sensed by the patient, and acts to replace the natural electrophysiology of an intact cardiac conduction system.

For those who make such a distinction, deactivating an ICD may be considered a form of passive euthanasia, or removing a barrier to a natural death. Indeed, this is similar to the concept of withholding external cardiopulmonary resuscitation. Deactivating a permanent pacemaker may more properly be considered a form of active euthanasia, in so much as it removes a noninvasive (in the sense that it is not felt by the patient), automatic, and completely internalized surrogate for a natural process. Moreover, in many end-of-life situations, the diagnosis that has brought the patient to the dying process has no relationship to the heart block that is being treated with the permanent pacemaker. By deactivating the permanent pacemaker of a pacemaker-dependent patient, one may be considered to actively kill the patient by a means other than allowing the natural dying process to unfold.

For some patients in some situations, deactivation of either the ICD or the permanent pacemaker may be suitable. To consider the actions similar, and the ethical principles surrounding them to be shared, however, is inappropriate.

References: (1) Berger JT. The ethics of deactivating implanted cardioverter defibrillators. Ann Intern Med. 2005;142:631-634.

Conflict of Interest:

None declared

We welcome Dr Berger's review highlighting the complex end-of-life issues posed by the presence of implantable cardioverter defibrillators (ICDs)(1). This dilemma is particularly difficult for those treating patients with advanced heart failure, a cohort with increasing implant rates and whose prognosis is ambiguous. The ACC/AHA practice guidelines for chronic heart failure offer the consensus view that such devices are of little benefit in those with NYHA class IV symptoms typical of end- stage disease (2).

We agree with Berger that formal guidelines do not exist to address these issues and to date, most discussion has centered on illustrative cases (3). The recent paper by Nathan Goldstein and others in this journal (4) has emphasised the importance of communication in this process. They showed that for 100 unselected patients dying with an ICD in situ, 81 with heart failure, discussion on device inactivation took place in only 27 cases. This discussion was confined to the last few days of life and 21 opted for withdrawal of this therapy. Fragmentation of the care plan was evident in that 27 of these 100 patients received a shock in the month before death, for 8 of these patients in the last few minutes of life. This contributed to the discomfort of dying and was distressing for those around them.

Improving the dying process for patients with ICDs demands open and objective discussion with patients, their families or surrogates on the likely benefits or otherwise of these technologies as the underlying disease progresses. Uncertainties specific to prognostication in heart failure should be acknowledged. Opportunities for such interaction may occur at the time of ICD implantation, when preferences for resuscitation are explored in the setting of advanced disease or close to the dying phase, after withdrawal of anti-arrythmic therapy, or on recovery from a crisis typical of the heart failure disease trajectory. We have recently incorporated ICD deactivation as a formal element of the Liverpool Care Pathway for the care of those dying of heart failure in hospital (5) and will shortly pilot this in a multicenter study in England

James M. Beattie FRCP, FESC Consultant Cardiologist, Heartlands Hospital, Birmingham B9 5SS, UK

Michael J. Connolly MPhil, RGN Nurse Consultant in Palliative Care South Manchester University Hospitals Manchester M23 9LT, UK

John E. Ellershaw MA, FRCP Director Marie Curie Palliative Care Institute Liverpool, L25 8QA, UK

References 1. Jeffrey T. Berger The Ethics of Deactivating Implanted Cardioverter Defibrillators Ann Intern Med 2005;142:631-634. 2. ACC/AHA Guidelines for the Evaluation and Management of Chronic Heart Failure in the Adult: Executive Summary A Report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Committee to Revise the 1995 Guidelines for the Evaluation and Management of Heart Failure). Hunt SA, Baker DW, Chin MH, Cinquegrani MP, Feldman AM, Francis GS et al. Circulation 2002;104(24):2996-3007. [PMID 11739319] 3. Mueller PS, Hook CC, Hayes DL. Ethical analysis of withdrawal of pacemaker or implantable cardioverter- defibrillator support at the end of life. Mayo Clin Proc 2003; 78: 959-63. [PMID 12911044] 4. Goldstein NE, Lampert R, Bradley E, Lynn J, Krumholtz HM. Management of implantable cardioverter defibrillators in end-of-life care. Ann Intern Med.2004;141:835-8.[PMID 15583224] 5. Ellershaw JE, Wilkinson S. Care of the dying: A pathway to excellence. Oxford University Press, 2003.

Conflict of Interest:

None declared

The need to discontinue use of an implanted defibrillator is not an occasional consideration; it is a predictable part of the course to dying for any patient who will die a natural death. With demographics now showing that more than 80% of Americans die while covered by Medicare (elderly or disabled) and 90% live with serious chronic illnesses for many months before dying, recipients of ICDs will routinely be better served to avoid the discomfort and disruption of having shocks while dying.

One obvious ethical response is that patients should know, at the time of implantation, that this device should ordinarily be stopped when life is getting to be short and life's continuation to be tenuous for causes other than arrhythmia, or when dying with an arrhythmia becomes a better course than what otherwise awaits. Since ICDs otherwise are generally "life-long," planning for eventual death should be a standard part of the consent process and the ongoing management for anyone accepting such a device.

The case that this article presents makes the error of having failed to plan ahead and thereby having put the patient in a position of substantial and unwarranted risk to well-being. This error, just like other errors, should necessitate a response by the current responsible physicians to notify the responsible prior provider(s) of care of the need to attend to this part of a complete protocol for consent to ICD implantation. Otherwise, those who provide care "downstream" to such errors just endure the harms with patients and families, and those "upstream" never realize the problems that they cause.

Recently, a hospice patient with fatal cancer endured more than fifty shocks in the last day of life, anguishing between shocks as to whether stopping the now-hated device amounted to mortal sin. While that is a challenging question, surely it would be better to contemplate it back at implantation, or even a few weeks before dying, rather than having patient, family, and caregivers caught up in such torment. Surely, the practitioner responsible should know of the harms caused by failing to consider this outcome. And just as surely, standard practice should require decent notice of such a possibility and the opportunity to avert it.

Conflict of Interest:

None declared

In Response: Ms. Ross argues that disabling a permanent pacemaker is active euthanasia because a pacemaker replaces natural cardiac physiology, it is automatic, it is implanted, and its action is not felt by the patient. These distinctions are not medically or ethically relevant either to decisions regarding the appropriate continued use of pacemakers or to distinguishing active from passive euthanasia. A number of treatments simply replace normal physiology (e.g. renal replacement therapy through hemodialysis, insulin pump, left ventricular assist devices, ventilator), are automatic (ventilator, balloon pumps), or internalized (insulin pump). Furthermore, for many neurologically impaired patients, life-sustaining treatments are "not felt by the patient" yet, contrary to Ms. Ross's criterion, these interventions are not typically considered to be "non-invasive." Continued use of pacemakers should not be accepted because they are already implanted and in use, rather pacemakers are simply another medical intervention that can sustain life, the use of which should be based on whether the patient determines that its net effects are valuable.

I support Drs. Lynn and Beattie and Mr. Connolly in their call for greater attention to advance care planning with regards to ICD's, in addition to other life-sustaining technologies. Advance directives can assist families and physicians in implementing appropriate treatment plans and can remove legal obstacles to appropriate care. Unfortunately, a series of concerns remain with advance health planning including widespread public reluctance to engage in this activity, culturally-based discordance with advance directives, as well as other barriers that limit its influence in treatment.(1-3) These challenges should not dissuade professionals from discussing treatment preferences with their patients. Rather, the health and legal systems should better integrate advance planning as well as family decision making processes for patients who choose not to plan. Barriers to dialogue between physicians and patients should also be further examined.(4,5)

Jeffrey T. Berger, MD Winthrop University Hospital Mineola, New York

References

1. Fagerlin A, Schneider CE. Enough: The failure of the living will. Hastings Center Report. 2004; 34(2):30-42. 2. Berger JT. Cultural discrimination in mechanisms for health decisions: a view from New York. The Journal of Clinical Ethics. 1998;9(2):127-131. 3. Teno JM, Stevens M, Spernak S, Lynn J. Role of written advance directives in decision making: insights from qualitative and quantitative data. Journal of General Internal Medicine 1998;13(7):439-446. 4. Hofmann JC, Wenger NS, Davis RB, Teno J, Connors AF Jr, Desbiens N, Lynn J, Phillips RS. Patient preferences for communication with physicians about end-of-life decisions. SUPPORT Investigators. Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment. Annals of Internal Medicine. 1997;127(1):1-12. 5. Morrison RS, Morrison EW, Glickman DF. Physician reluctance to discuss advance directives. An empiric investigation of potential barriers. Archives of Internal Medicine. 1994;154(20):2311-8.

Conflict of Interest:

None declared

With regard to Dr Berger's article (1) and his response to Ms Ross' point about disabling a pacemaker being a form of active euthanasia, I agree with Dr Berger that disabling a pacemaker is no more "active" an euthanasia than disabling an implantable cardiac defibrillator (ICD) or for that matter stopping insulin, hemodialysis or, mechanical ventilation. However, these different forms of passive euthanasia elicit very different clinical responses from physicians. While turning off a ventilator is something that we often consider, very few have considered turning off a pacemaker, an ICD, or an insulin pump. This is because they are medically different. Although I agree with Dr Berger's claim that these distinctions are not ethically relevant, I strongly disagree with his statement that these distinctions are not medically relevant. I would argue that the outcomes of these different forms of passive euthanasia are medically significantly different. While stopping a ventilator would lead to a patient dying quite quickly of respiratory arrest, stopping dialysis leads to death by uremia, stopping insulin to death by ketoacidosis and stopping a pacemaker leads to fracture neck of femur. The suffering, length, and probability of the resultant death are very different. Stopping a ventilator result in a quick death, while stopping a pacemaker would most likely lead to a fall and a long painful hospitalization rather than death (since most pacemakers are implanted for sick sinus syndrome rather than for complete heart block). Therefore, ethical equality is not the same as medical equality. Patients who require ICDs are desperate patients, usually ones who have survived sudden death with considerable fear, or ones with considerable heart failure. Desperate patients would often accept dramatic help from their physicians hoping that they would be saved. Therefore, it is inadequate to merely discuss when an ICD should be deactivated. I would suggest that the younger generation of cardiologists be wary of their own enthusiasm for new technologies and not to transpose these upon the patient. We should be cautious to suggest these costly and burdensome therapies to desperate dying patients. For what good is an ICD that is deactivated 2 months after implantation? How would an ICD benefit a patient if it only increased his chances of death by heart failure? In the age of CRTD (cardiac resynchronization therapy defibrillators), it would often be less costly and painful to "drop the D".

References : 1. Berger JT. The ethics of deactivating implanted cardioverter defibrillators. Ann Intern Med. 2005;142:631-634.

Conflict of Interest:

None declared