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 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 a person who is dying.
How bad can it get? There are many unfortunate examples in the medical literature and mainstream media.
One man on home hospice care suffered 33 painful shocks as he lay dying in his wife's arms, and his ICD got so hot that it burned through his skin.
In another example, a daughter could not understand why her father's body was jumping around so much that it looked like it was leaping off the bed, when he apparently was no longer breathing.
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.
Then where's the problem? It turns out that patients and their families are unaware of this problem and its easy solution largely because doctors are reluctant to discuss it.
Studies show that deactivation discussions are 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.
Even among patients with DNR orders, deactivation had been discussed with fewer than 45%.
Another survey showed that just 25% of internists and family practitioners and 40% of geriatricians reported having such discussions.
And in a survey of electrophysiologists and cardiologists, 85% of respondents reported discussing deactivation only "in specific cases during the follow-up.
" Other studies showed that physicians were more comfortable talking about DNRs than they were about the possible impact of a turned-on ICD at the end of life.
Many indicated that they would prefer that the patient -- or the patient's family -- bring the subject up.
One cardiologist said she feared that talking about deactivation with patients would be like "shutting off hope".
Of course, while it might be hard to suggest deactivation of the ICD at the very end to a dying patient, it might make sense to include this discussion at the very beginning when the device was being implanted.
But another study showed that only 4 % of doctors were routinely discussing the deactivation issue with patients before the ICD was implanted.
With Americans suffering some 250,000 to 300,000 arrythmia deaths per year, and U.
S.
patients receiving some 140,000 ICD implants per year, 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 at home or in a hospice setting.
Recommendations and Conclusions: Health care providers have to implement systems and guidelines to inform patients and their families of all treatment options, including ICD deactivation.
Even if patients and families are not ready to completely turn off an ICD, the device can be reprogrammed so that it delivers small jolts of electricity to work more like a pacemaker, rather than the high-voltage shocks that completely recalibrate the heart.
Nurses and palliative care providers can certainly bridge the gap created by physicians' reluctance to discuss deactivation.
Interdisciplinary committees could examine the issues surrounding ICD deactivation at the end of life and not only make specific recommendations, but also create guidelines and policies.
Legal professionals can implement guidelines addressing this issue for their institutional clients, and add this consideration to their checklists when doing advance directives for their individual clients.
___________________ Disclaimer: We would be pleased to inspire dialogue on this issue.
However, nothing in this entry 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 issues presented in the entry are advised to promptly consult their health care professional.