When Why Is More Vital Than What : Life: Unanswered questions raised by a grandfather’s living will led to confusion, guilt and heart-rending choices.

My grandfather died this morning. It is finally his release from the cruel devastation of his aging, a labyrinth which by 88 had usurped his mind, his body and his dignity. My deep sadness is tempered with my relief that our troubled journey is over, for I had accompanied him as the one he entrusted to make his medical decisions. For me, his death finally heralds my release from an anguishing responsibility I had lovingly, but naively, assumed.

When Grandpa asked me if I would someday act in his medical behalf, I accepted. He had already drafted a living will, making him one of only 10% of the competent adults in San Diego County to have done so. Together we discussed his directives, and I typed them into a durable power of attorney for health care, a legal document that assigns medical decisions to another person in the event the patient is incapacitated. The document further allows the patient to stipulate certain conditions of future care.

Grandpa did not want to be kept alive by artificial means or heroic measures, if there was no reasonable expectation of his recovery from physical or mental disability. He asked that medication be mercifully administered to alleviate suffering. He did not want kidney dialysis or amputation of either leg, nor did he want to submit to the surgical removal of malignant brain tumors.

Clearly stated, Grandpa’s affairs seemed in order. My eventual responsibility would be nothing more than reading from his papers, guiding doctors to decisions with the words I had typed. Words that would circumvent the tangle of later emotions. Words that would support the precautionary measures Grandpa had taken.

Words that would later show me how much my complacency had deluded me.

Grandpa enjoyed his life in a little cottage at Fredericka Manor, a retirement community in Chula Vista. He loved playing darts and pool with his cronies, and visiting with my family at our home in San Carlos.

After some time, however, the cracks began appearing in Grandpa’s good health. With an MBA from Harvard, he was stymied during a card trick to come up with a number between 15 and 21. He started falling, the result of apparent blackouts. Then the call came that Grandpa was in intensive care at Scripps Memorial Hospital, having suffered a stroke and renal failure.

I grabbed the medical document and rushed to the hospital. A doctor’s consultation became my nightmare.

He informed me that Grandpa would likely die unless I authorized short-term kidney dialysis. I was dumbfounded by the inanity of the words I had typed for Grandpa, dictating no dialysis.

I had never asked him why he didn’t want it, nor had I asked him to qualify his feelings between short- and long-term dialysis.

Without understanding Grandpa’s reasons for refusing dialysis, there was no comfort in the document I held in my hand. The words were useless in helping me decide whether to adhere to them, or to a life.

I was snared in the very tangle of emotion we had sought to avoid. Tormented that I would be causing his death, I did not authorize the procedure because the words I had typed said, “No dialysis.”

But I was lucky that time. He lived, without the dialysis.

Now residing in the convalescent hospital at Fredericka Manor, Grandpa continued to be debilitated by further strokes, which left him a demented shadow of the grandfather I adored. Finally, with Grandpa semi-comatose, a blood clot lodged in his leg. Gangrene set in.

This time the doctors asked me to authorize amputation. They said refusal to do so would lead to his painfully slow and putrid death, a horrific throwback to the Civil War.

My nightmare returned. “No amputation of either leg,” Grandpa had dictated and I had written. But now these were merely empty words on a medical document, without the spine of clarification.

I had never asked Grandpa why he was so opposed to losing a leg. Since he wasn’t diabetic, the procedure seemed an impossibility. It had never occurred to me to explore with him other circumstances that could necessitate amputation, such as gangrene from a clot.

In not asking him to choose between hypothetical options, I suddenly had to do it for real.

After three agonizing weeks, I finally authorized the amputation. Knowing that he would have died a horrible death was something I could not live with, but a part of me died anyway.

Grandpa lived eight months longer, never knowing he had lost his leg. Another massive stroke, and he was released from the continuing assaults on his body’s integrity.

I am now released from the maintenance of that integrity, and the guilt that my own ignorance somehow failed to preserve it. I did what I could, but I am not confident that it was what Grandpa would have wanted.

The Patient Self-Determination Act, which took effect nationally on Dec. 1, will unquestionably hand more people the awesome task of acting on the medical behalf of a loved one. According to the law, all health care facilities that receive Medicare or Medicaid funding must inform patients of their right to accept or reject medical treatment that would prolong life.

Furthermore, documents such as living wills and durable powers of attorney must be provided to patients who choose to have their wishes recorded and followed. Such documents will then become part of the patients’ records.

I am encouraged by the heightened awareness of advance directives to physicians and family members. It is essential that we contribute to the architecture of our own physical destinies, as much as circumstances will allow. The arsenal of technology must be halted when the soul would be sacrificed to save the body.

But words alone will remain impotent unless they are empowered with significance for those who are left to interpret them. I ignored many opportunities to ask Grandpa about medical situations that could arise, or to have explored the reasons behind his desires I had typed. I ignored them because the “whats” on the paper had seemed like enough. I now know the “whys” would have let me sleep through the night.

While medical clairvoyance is not possible, we can identify many of our own treatment limitations and express such boundaries to loved ones. Dialogue needs to occur between young and old alike, since accidents or illness can render anyone a sudden victim of arbitrary medicine. If documents are prearranged, the “whys” for final directives must be explained, before it becomes necessary for one to step inside another’s heart, searching for an answer.

Only then can words be written to last a lifetime.