When the light fades

With new life extending technology comes new ethical questions – often not can you take advantage of it, but should you? A recent report by the Heart Rhythm Society offered detailed guidelines concerning shutting down a pacemaker or Implantable Cardioverter Defibrillators (ICDs) near the end of life. The purpose of the document is to outline the rights and responsibilities that patients, family, and caregivers have. Fully 10% of doctors may feel that deactivation of a pacemaker – even at the request of the patient or their family – is wrong.  (The percentage that see ICD shutdown as wrong is 1%, as an ICD can be changed to “pacemaker only mode”.)

A recent Mayo Clinic study found that withdrawing a Left Ventricle Assistance Device (LVAD) was ethical, if the patient (or their surrogate) recognized the eventual outcome of such an act.  While a heart may be strong enough to continue beating for a while without a pacemaker, shutting down a LVAD is an extremely serious step. The LVAD is a pump, and the heart is a pump; the only reason to hook a pump to a pump is because the first pump can no longer do its job. Death could come fairly quickly after LVAD shutdown. The writers of the Mayo Clinic study contend that turning off a LVAD (or refusing it altogether) is not physician assisted suicide or euthanasia.

But why would someone want to deactivate a pacemaker or LVAD? There are many illnesses that steal the body while leaving the Circulatory System functional. A stroke or Alzheimer’s can leave you incapacitated while your heart beats on. Or perhaps you have reached the end of your life, and your heart just can’t go any further, so it shuts down…. only to be zapped back to life by an ICD. Blogger Dr. John M. notes that things change, life changes – and occasionally he has to tell a patient “Sir, an ICD will no longer help you.” And Dr. Wes is there as a gentleman plays the last few notes of his life’s song.

80% of all Americans will probably die of an incurable chronic illness. Most of those people want to die at home, with as much dignity as possible and as little pain as possible. I plan to fight for as long as I can stand – Rage, rage, against the dying of the light! But in the back of every CHDer’s mind is the knowledge that one day our hearts will give out… and it will probably happen slowly.

Our light will fade away rather than being snuffed out.

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One Response to “When the light fades”

  1. Basil Rene Says:

    I recently wrote a blog about this very issue recently – http://tiny.cc/9twd6 – and the fact is many AICD patients are unaware of this issue, that their hearts will be restarted by theri device when they are passing away.

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