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Living wills and what you should know

Many Americans are horrified by the prospect of being kept alive in a persistent vegetative state after brain damage. Visions tubes forced down the throat and a breathing machine delivering oxygen to a barely beating heart seem more appropriate for a nightmare than a place of healing.

For many, this fear stems largely from a reluctance to impose upon loved ones and family members. No one wants to be an undue burden on his caretakers' time and money. But many people fear the unfortunate state itself, and especially the invasive treatments required to stabilize an unresponsive patient.

Often, potential patients pin down "tubes" as metonymic for their apprehension: "I just don't want to be hooked up to all those tubes."

Living wills

In response to this fear, many people prepare living wills, especially in the aftermath of Terri Schiavo's accident and the drawn-out legal battle that ensued.

The Florida woman was kept on life support for 14 years after sustaining severe brain damage when her heart temporarily stopped in 1991. The course of her illness up to her death in 2005 (after having her feeding tube removed) was marked by intense legal conflict and vast press coverage.

Some speculated that if Schiavo had had a living will, the conflict could have been avoided — she could have chosen ahead of time whether to be connected to a feeding tube or not and how long to remain on life support.

As a matter of fact, a living will would have made no difference in Schiavo's case. Technically, for a living will to apply in many states, the patient must be classified as "terminally ill." Schiavo was not classified as such, but rather as "in a persistent vegetative state"; that is, although she may have shown no signs of recovery, she would, with the proper life support, likely have lived to a natural age.

There are problems

Even beyond Schiavo's irrelevance to the living will movement, there are a few very important issues that need to be addressed regarding the efficacy and helpfulness of living wills.

Dr. Fred Mirarchi takes up these issues in his book, Understanding Your Living Will: What You Need to Know Before a Medical Emergency, and his preceding pamphlet, "What's the Patient's Code Status?" Mirarchi highlights the fact that a living will is a legal document usually prepared in legal language, which must be interpreted by doctors, other medical personnel and the family of the patient. The material stresses the importance of an "Advanced Directive" written in medical language that nurses and ER doctors can immediately understand.

Mirarchi says the inability of doctors and lawyers to understand each other regarding living wills can become a problem in three ways:

  1. Living wills are not individualized for a patient's medical conditions.
  2. Many patients don't really understand what they are agreeing to when they sign a living will.
  3. Most importantly, living wills are horribly misinterpreted to mean "do not treat" or "do not resuscitate" (DNR).

Generally, the first two problems only serve to aggravate the third.

Patients who do not intend the real meaning of the DNR order nonetheless can wind up with a living will that is interpreted as such. The patient, who does not want interminable treatment with a tracheotomy and a central IV in his neck, chooses "no ventilation," "no defibrillation," etc. The patient is unaware that, sometimes, indeed most times, such measures are temporary.

Code Status

DNR is a much more restricted status than most people realize. It means essentially, "I know I am dying; do not try to save me." As such, the real Code Status (used by doctors and hospitals) of No Code, or DNR, is reserved for hospice patients. For these patients, the only concern of the doctors is their comfort in their last hours.

The intermediate Code Status is Chemical Code, which designates drugs-only treatment. Thus, no CPR, no intubation and no physical means are permitted under Chemical Code. In case of heart failure, only one round of medications is generally administered, since the blood is no longer circulating, and without CPR or other resuscitative measures, more drugs would be redundant.

The last Code Status, the status for the overwhelming majority of patients, is Full Code. Full Code is exactly what it sounds like: All treatments are available and cardiac arrest events are treated aggressively. Mirarchi specifically refers to seven treatments that are used in conjunction with each other. They are:

  1. Cardiopulmonary Resuscitation (CPR)
  2. Advanced Cardiac Life Support (ACLS) — combines the use of medication with CPR
  3. Endotracheal Intubation
  4. Mechanical Ventilation
  5. Defibrillation
  6. Invasive Procedures — may include surgeries, or simply the introduction of an IV
  7. Intravenous Fluids (IV)

The effects of the problem

Frightened by the prospect of Schiavo's catastrophe or encouraged by friends and family, middle-aged and elderly citizens may find a lawyer and prepare a living will. All too often, that living will contains some mention of refusing life support that's not clearly phrased in terms of Code Status.

Mirarchi's book contains numerous tragic anecdotes of patients whose living wills were interpreted as DNRs and who were therefore denied treatment by doctors and hospitals. Sometimes the patient made a narrow escape and recovered without the full range of treatment. Sometimes the family arrived in time with a power of attorney and instructed the doctors to treat the patient. But sometimes the families arrived and clarified that the patient wanted full treatment too late.

What should I do?

Preparing documents to express your preference of emergency medical treatment without a doctor doesn't make sense. Make sure your physician is with you and can talk to you about your options and how to make your preferences clear on your Advanced Directive.

It is also prudent to appoint a Durable Power of Attorney for Health Care, who can make further decisions when you are incapacitated. Since living wills are often inapplicable until you are deemed "terminally ill," having a loved one able to make decisions in the emergency interim is reassuring.

A living will can certainly be a good idea. But when you decide who will write it, think about who will need to read it.

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