Are You Prepared

Responding to life, death with dignity

The Terri Schiavo case has brought to the forefront critical and unresolved issues in our American culture. Ethics, religion, law and politics all collided around one person, one precious and fragile human life. And after the dust has settled, most of us are left confused as to what we should think, or how we would act if a situation like the Schiavo case came into our life.

As medical technology has advanced, the realm of medical decision making has become increasingly complex. So many decisions about life and death that were once out of our hands have become emotional and spiritual quandaries for many families. What should we do? How should we proceed when making a decision for someone who cannot make that decision himself or herself?

Since most of us do not have the medical or scientific knowledge to truly understand the technical information being brought to us when a loved one is seriously ill, we feel at a loss as to how to make these decisions. Is it okay to turn off the ventilator? What should we do about tube feeding? Are we allowing the patient to die or are we killing him? What would she want? Are we “playing God?”

Frame of Reference
Any time we are faced with challenging decisions, it helps to establish a frame of reference. This is all the more vital when facing life’s ultimate question, death, and how we respond. Right to Life of Michigan is dedicated to promoting and preserving not only the right to life for each individual but also the dignity and value of each person. Right to Life of Michigan begins with the basic premise that life is to be valued and preserved, because the dignity of each person demands such.

Life, in and of itself, is good and precious; it is a gift. The more we respect it and steward it well, the greater goodness that flows from it. Even in its weakest, most vulnerable moments, human life is of immeasurable worth and has the capacity for good to spring from it. These concepts are not regularly reinforced in our culture that glorifies youth and productivity. Truth and values have become relative and human beings have become dispensable. To the contrary, popular movies like Million Dollar Baby and The Sea Inside are winning acclaim while promoting the value of human life as a “function of functionality” (i.e. what you are capable of doing or contributing is the measure of your value).

It is neither naive nor illogical to embrace hope in the face of a life-and-death situation. Health care providers and their prognoses are frequently wrong and sometimes even biased toward death. There are many “walking dead” with us today who doctors were certain would “never survive” or “never walk or talk again.” Studies have shown that some patients, because of their gender, race, age, disability or economic status, are not offered the same treatment options as other patients. These biases can lead to advice or recommendations contrary to a life-affirming perspective.

This presumption in favor of life, however, must be balanced with the reality of human frailty and the limits of medical intervention. No one lives forever, and medical treatment cannot cure every disease. “To everything, there is a season; a time to be born and a time to die.” The wisdom to know this balance, and the strength to accept it, is not taught to doctors in medical school nor to lawyers and judges in law school. It is not the purview of lawmakers, either.

There is no magic formula that will make finding the balance and coming to the decision easily. Your faith and values, or those of a patient for whom you are making a decision, are important. It is not the case that only “clinical considerations” should carry the day. Keeping the focus on the good of the patient and respecting and valuing life will be the best course for making decisions that are just and truly compassionate.

Informed Consent & Advanced Directives
A central element of appropriate care for any patient is assuring that fully informed consent is given by the patient or the patient’s surrogate. Decisions must be made based on the present information, the current diagnosis and the prognosis of the various treatment options. Patients and their families should be conscious of this principle when considering how to make plans for future medical decisions. Just as health care providers’ crystal balls are faulty, so too are the preferences that a person may forecast into an advanced directive (“living will” or health care power of attorney). Most studies on the implementation of advanced directives show that the real life scenarios in which the patient is found rarely matches the imagined scenarios covered in the advanced directive.

Trying to use a generic instruction in a living will to make a decision for a patient whose condition doesn’t match the instructions totally undermines the principle of informed consent. For this reason, RLM has always opposed stand-alone living wills in favor of the appointment of a patient advocate under a durable power of attorney for health care document. Patients can and should express their values and beliefs about life and their treatment preferences in writing. But they should do so understanding that at the time a decision must be made, it will be made by the advocate who can assess the entire situation with the flexibility to make an informed decision.

See the Questions & Answers article on the next page for more information about a durable power of attorney for health care.

Back to the Basics
Yes, a frame of reference is as important as having a realistic perspective on advanced directives. But how does one know how to make a decision when the time comes?

If you have to make a decision for a loved one:

Get all the facts first. Ask questions, lots of them if necessary.

Keep a journal or log of the consultations and discussions you have with health providers so you can keep the facts straight.

Distinguish if the patient is in the end stage of a terminal illness, or instead capable of recovery or at least improvement to a stable condition. The former is likely the time to “let go;” the latter is more likely not such a time.

Don’t hesitate to seek a second opinion and the advice of others outside the medical community.

Err on the side of life. Hope is powerful.