Advanced Directives - Deactivation of the Implantable Cardioverter Defibrillator

We who are involved in Elder Law often have to discuss end-of-life issues with clients, typically in the context of executing advance directives. We try to encourage open and frank dialogue about the clients’ wishes. We counsel them on the likely scenarios and the options available, and facilitate the often-difficult discussion between principal and agent that may theretofore never have been had. We present the standard dreaded scenario of the irreversible vegetative state and explain the legalities, getting the client to think about how he or she would want the situation handled. We may talk about the pros and cons of giving antibiotics, certain procedures, nutrition and hydration, and even CPR. We do this so the client’s wishes are clear and the family can see to it that those wishes are respected. We also relieve the family of the heavy responsibility of having their loved one’s life in their hands and having to “play God” without being sure what the loved one would have wanted. Yet, with all the care we take, we may miss some of the less obvious, sometimes logistical, details which could actually foil the client’s intentions.

For example, imagine this scenario: you make your

wishes known to your family that you do not want to

be kept alive by extreme measures. In fact, you have

signed a Living Will saying so, as well as a Do Not Resuscitate (DNR) order. Yet, in your final hours of life,

your heart is automatically jolted by a series of powerful —yet futile—electric shocks from a defibrillator, violently disrupting the peaceful ending you tried so hard to preserve.

How could this happen? The implantable cardioverter

defibrillator (ICD) that was long ago surgically placed in your chest—to automatically deliver a strong electric shock to restore a regular rhythm to your heart if it starts beating out of synch—unfortunately will continue to do so to the failing heart of someone who is dying.

How bad can it get? The tragic stories include the following: One man on home hospice care suffered

33 painful shocks as he lay dying in his wife’s arms. His ICD “got so hot that it burned through his skin.”1 In another situation, a daughter could not understand why her father’s body was jumping around so much that it looked like it was jumping off the bed when apparently he was no longer breathing.2 Unfortunately, there are many reports in the medical literature and the general media detailing such family distress and patient suffering caused by ICDs in similar end-of-life situations.3

What is perhaps most astonishing is that the solution

is remarkably easy: just turn off the device. Deactivation

of the ICD once the patient is actively dying would prevent this situation from happening. Why, then, does this problem even exist? It turns out that patients and their families are unaware of this problem and its easy solution, largely because doctors and other health care providers are reluctant to discuss it.

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“What is perhaps most astonishing is

that the solution is remarkably easy: just

turn off the [ICD].”

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A recent report published in the American Journal

of Nursing4 that examined the major studies on the

subject5 revealed that deactivation discussions were

uncommon. One study that surveyed the next of kin of

patients who had died with an ICD in place found that

deactivation had been discussed in only 27 of 100 cases.6 Even among patients with DNR orders, deactivation had been discussed with fewer than 45%.7 Another survey showed that just 25% of internists and family practitioners and 40% of geriatricians reported having such discussions.8 Moreover, a survey that assessed the practices of 47 large medical centers in the management of terminally ill patients with ICDs found that deactivation is discussed in only 4% of such centers, that 85% of electrophysiologists and cardiologists discussed deactivation only “in specific cases during the follow-up,” and concluded that patients are provided with surprisingly little information on the possibility of deactivation of ICDs.9

Other studies showed that physicians were more

comfortable talking about DNRs than they were about

the possible impact of an ICD at the end of life. Many

indicated that they would prefer that the patient, or the

patient’s family, bring up the subject—indeed, one cardiologist said she feared that talking about deactivation with patients would be like “shutting off hope.”10

Of course, while it might be hard to suggest deactivation

of the ICD to a dying patient—at the very end, so to speak—it might make sense to include this discussion at the time the device was being implanted, as in, at the very beginning. However, another study showed that only 4% of doctors were routinely discussing the deactivation issue with patients before the ICD was implanted.11

With Americans suffering some 250,000 to 300,000

arrhythmia deaths per year,12 and U.S. patients receiving some 140,000 ICD implants per year,13 it is

clear that this is a widespread problem that needs to

be examined. The devices are life-saving for patients

who are at risk of sudden cardiac arrest because their

hearts can unpredictably spin out of rhythm, beating

either too fast or in an uncoordinated way. The battery operated devices are designed to detect these abnormal

rhythms and to reset the heart by delivering a strong

jolt of electricity. Unfortunately, in the case of patients

who are near death, the heart can get out of synch and

trigger shocks from the ICD as it attempts—futilely and

repeatedly—to restart a normal rhythm to a heart that

is failing. Once implanted, the devices can be turned off

or reprogrammed by a specialist with a computer that

is designed to work with the ICD. Generally, however,

neither the specialist nor the computer would be available in a hospice or similar setting.

Even if patients and their families are not ready to completely turn off an ICD, the device can be

reprogrammed so that it works more like a pacemaker,

delivering tiny jolts of electricity rather than the high voltage shock that completely recalibrates the heart.

Apparently, patients are often left with the impression

that the shock to be delivered by the ICD is, instead, an

all-or-nothing matter rather than one of degree that can

be varied according to the circumstances.14

We who deal with individuals and their families seeking to put advance directives and other planning in place ought to add this issue to our checklists, and perhaps, address it expressly in our advance directives.

_____________________________________________

“We who deal with individuals and

their families seeking to put advance

directives and other planning in place

ought to add…[the ICD] issue to our

checklists, and perhaps, address it

expressly in our advance directives.”

______________________________________________

Similarly, our colleagues that represent hospitals, nursing

homes, assisted living facilities, hospices, and similar

facilities may be well-advised to consider instituting

policy manuals or policy statements addressing this

issue. Physicians, nurses, palliative care providers, and

others in interdisciplinary committees could, together

with their attorneys, examine the issues surrounding

ICD deactivation at the end of life and create guidelines

and policies. After all, it has been shown that such discussions are more likely to happen where a policy is in

place than where none exists.15

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Disclaimer: Nothing in this article should be viewed as

medical advice, and no action or refraining from action

should be based on it. Anyone who needs to deal with

the medical issues presented should consult a health

care professional.

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Endnotes

1. James E. Russo, Original Research: Deactivation of ICDs at the End of Life: A Systematic Review of Clinical Practices and Provider and Patient Attitudes, 111(10) AM. J. NURSING, Oct. 2011, at 26, 26; see also D. Grassman, EOL Considerations in Defibrillator Deactivation, 22(3) AM. J. HOSPICE PALLIATIVE CARE 179, 179-80(2005).

2. See Linda Carroll, Shocking Ending: Implanted Defi- brillators CanBring Misery to Final Hours, MSNBC.COM (Jan. 16, 2012), http://vitals.msnbc.msn.com/_news/2011/10/10/8212715-shockingending-

implanted-defibrillators-can-bring-misery-to-finalhours

(referring to Russo study).

3. See, e.g., B. Meier, Lifesaving devices can cause havoc at life’s end, NEW YORK TIMES, May 13, 2010.

4. Russo, supra note 1.

5. See, e.g., N. Goldstein et al., “It’s like crossing a bridge” complexities preventing physicians from discussing deactivation of implantable defi brillators at the end of life. 23 J. GEN. INTERN. MED., Suppl. 1, 2008, at 2 [Hereafter, Goldstein, It’s Like Crossing a Bridge]; P.J. Hauptman et al., Physician attitudes toward end-stage

heart failure: a national survey, 121(2) AM. J. MED. 127 (2008); N. Goldstein et al.. Barriers to conversations about deactivation of implantable defi brillators in seriously ill patients: results of a nationwide survey comparing cardiology specialists to primary care physicians, 54(4) J. AM. COLL. CARDIOLOGY, 371 (2009) [Hereafter, Goldstein, Barriers to Conversations]; A.S. Kelley et

al., Management of patients with ICDs at the end of life (EOL): a qualitative study, 25(6) AM. J. HOSPICE PALLIATIVE CARE 440 (2008); A.S. Kelley et al., Implantable cardioverter-defi brillator deactivation

at the end of life: a physician survey, 157(4) AM. HEART J. 702 (2009); R. Kobza and P. Erne, End-of-life decisions in ICD patients with malignant tumors, 30(7) PACING & CLINICAL ELECTROPHYSIOLOGY, 845 (2007); W.R. Lewis et al., Withdrawing implantable defibrillator shock therapy in terminally ill patients, 119(10) AM. J. MED. 892

(2006); P.S. Mueller et al., Deactivating implanted cardiac devices in terminally ill patients: practices and attitudes, 31(5) PACING & CLINICAL ELECTROPHYSIOLOGY 560 (2008); S. Sherazi et al., Physicians’ preferences and attitudes about end-of-life care in patients with an implantable cardioverter-defi brillator, 83(10) MAYO CLIN.

PROC. 1139 (2008).

6. Russo, supra note 1, at 31, citing N. Goldstein et al., Management of implantable cardioverter defi brillators in end-of-life care, 141(11) ANNALS INTERNAL MED. 835 (2004).

7. Id. at 31.

8. Id.

9. G. Marinskis and L. van Erven, Deactivation of implanted cardioverter-defi brillators at the end of life: results of the EHRA survey, 12(8) EUROPACE 1176 (2010).

10. See Goldstein, It’s Like Crossing a Bridge, supra note 5; See also Hauptman, supra note 5.

11. See Marinskis and van Erven, supra note 9.

12. G.I. Fishman et al., Sudden cardiac death prediction and prevention: report from a National Heart, Lung, and Blood Institute and Heart Rhythm Society Workshop, 122(22) CIRCULATION 2335 (2010).

13. As of 2009. See S.C. Hammill et al., Review of the registry’s fourth year, incorporating lead data and pediatric ICD procedures, and use as a national performance measure, 7(9) HEART RHYTHM 1340 (2010).

14. See Goldstein, It’s Like Crossing a Bridge, supra note 5; A.S. Kelley et al, Management of patients with ICDs at the end of life (EOL): a qualitative study, 25(6) AM. J. HOSPICE & PALLIATIVE CARE 440 (2008).

15. See, e.g., N. Goldstein et al., Brief Communication: Management of Implantable Cardioverter-Defi brillators in Hospice: A Nationwide Survey, 152(5) ANNALS INTERNAL MED. 296 (2010). An example of an ICD deactivation policy is annexed to that article as a “web only appendix” and is available online at http://1.usa.gov/ilwqs6.