When Death is Not Death: a Reprise

 

Waterton Waters

Waterton Waters

Perhaps a more appropriate title would be “when dying is not dying.”  This is a follow up to an earlier post about “brain death” for organ donation purposes and how the use of medical technology can ethically complicate a person’s dying.  The Boston Globe had a good article about a source of interference for a terminally ill person’s otherwise natural dying process: the implantable cardioverter defibrillator.  Turns out that prolonging life for someone with a chronic disease can have repercussions when the person is dying of a terminal illness or other natural causes.  Read the article “Lifesaving implants complicate end-of-life care” here.  Another troubling issue which is broader than that of the ICD deactivation is when a pacemaker-dependent patient is terminally ill and requests deactivation of the device.  Doctors distinguish between the ethical decisions of these two actions.  You can read a medical journal article about the 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities here.

The implants are basically small, internal versions of the paddles that emergency rooms use to shock patients’ malfunctioning hearts – and these are saving many lives. But in some cases they also are making the act of dying, the process of letting go and saying goodbye much harder, because they are forcing terminally ill patients and families to make wrenching decisions about turning them off. The devices subject some dying patients to painful jolts and can prolong their suffering.  These jolts to a person’s otherwise dying body are also traumatizing to loved ones and can make the dying process more difficult in unanticipated ways.

Implants aren’t the only complications for end of life issues facing an individual or family.  TPN or total parenteral nutrition has served to extend many lives which would have been shortened due to short bowel syndrome or intestinal failure.  As a medical means of extending life for these conditions, this type of intravenous feeding can also complicate end of life care when a person is suffering the effects of another disease process.  Dialysis can stave off renal failure for many years for those with failing kidneys.  What used to be fatal heart attacks and strokes can be more effectively treated in many elders, but the interventions may result in chronic complications or cognitive decline.

Health care POAs and advance directives are much more important for persons with these implants.  Prolonging life and not impeding dying – how do we separate out the two? Is aging and death a natural part of life or is it something that should be opposed as some would argue, essentially that we should be pursuing a “cure” for aging?

I have previously written a post (or two) about the medical definition of “a good death,” and will avoid a discussion of the difficult distinction between quantity versus quality in end of life care.  These issues affect individuals and family members of elders in a much larger proportion, but the issues surrounding medical intervention at the end of a life are issues for all ages of people, children and young adults on life support are much more challenging to us in many ways because these deaths go against the “natural order” of a parent dying before a child.

How to determine what would be a good death is a very individual choice which doctors and medical providers can help facilitate, but they are not the ones properly in charge of making such a determination for a patient or a patient’s family.  Thinking about these difficult questions now and discussing feelings about these scenarios with family members can lighten a potential burden immeasurably.    So what can you do now to start the difficult conversation?  I still like the American Bar Association’s Consumer’s Toolkit for Health Care Advance Planning because it has great topics to break down the process into manageable conversations around issues like Are Some Conditions Worse than Death? and Personal Priorities and Spiritual Values Important to Your Medical Decisions.

These questions are best discussed by family members in advance of a crisis.  The discussion can avert or greatly diminish potential conflict among family members with differing opinions.  Don’t put this opportunity off until it’s too late, especially when so many helpful resources exist to help you get started.

©Barbara Cashman  2014   www.DenverElderLaw.org

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