The New Grief

How families find renewal through loss.

The Conversation Project

It's time we started talking about end of life.

My father passed away on July 6th of this year, one month short of his 89th birthday. His health had been declining steadily for the past five years, and when he finally passed, his death certificate listed COPD, congestive heart failure and kidney failure. In the past couple of months, his Parkinson's had gotten so bad that he had trouble making entries in his check book. A month earlier he'd suffered a severe heart attack and was told that surgery was not an option. The last thing he said to me as I stood up to leave after sitting with him for a visit was "Goodbye." He died about two hours later. I thought he meant until the next day, but I realize now he meant something else.

There has been more and more talk in the print and visual media lately about "end-of-life planning." The reason is obvious: Modern medicine has become increasingly effective in its war on death. Twenty years ago my father's heart attack, given his other medical conditions, would have most certainly been fatal. Today, he was able to survive (though his quality of life slipped yet another notch). The result has been that the bulk of our health care costs as a society are devoted to treating men and women in the last year of their lives. More and more men and women spend the last months or weeks of their lives in intensive care units. After my father's heart attack, when he'd been moved to a transitional care center, he asked me what I would do in his situation. An option he'd been considering was refusing further dialysis treatments, which his doctors had already deemed risky, given his frail condition.

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It was my father, not I, who initiated the end-of-life "conversation" that would extend over more than two years. It began when he asked me to come over so we could review some "materials" he'd put together.

The Black Book

After I sat down at my parents' dining room table with a cup of coffee, my father came in carrying a black three-ring binder and set it down on the table. My father, schooled in accounting and business administration, was nothing if not organized. Accordingly, what he referred to as (and we in turn came to call it) his "black book" contained a wealth of information and instructions about my parents' finances, his instructions for his funeral and what I needed to do afterward.

The Black Book was neatly divided into sections, complete with labels such as "funeral," "life insurance," "annuities," "social security," "banking" and so on. Each of these sections was regularly updated. The one we spent the most time actually talking about that day, though, was the first one: funeral. As it turned out, that discussion expanded over time to include a diversity of related topics.

Initially I found myself feeling uncomfortable talking with my father about his own funeral arrangements. As he went over them with me, though, it was clear that he was not at all uncomfortable about it. On the contrary, I could tell that he was relieved.

After an hour or so we had gone through the entire black book. I noticed that my father had left clear instructions, along with phone numbers, to guide me in things like submitting life insurance claims and arranging for annuities to continue paying out to my mother. At one point -- as a measure of my growing comfort with this conversation -- I asked my mother for a pen and paper and started taking notes.

The Conversation

My father and I continued this conversation that he'd started on and off until his death. There were times we laughed together, for example, when I read my father's instructions about his casket: "Do not spend a lot of money on a casket as everyone will forget about it as soon as I'm in the ground." My father, as you might have guessed, was not big on extravagance. The tombstone that he and my mother had already paid for and placed on their prepaid gravesite was a pleasant but fairly modest piece of rose-colored granite, complete with their names and the years of their birth. I took down the name and address of the cemetery and stopped by to look at it. By this time -- a year or so after we started the conversation -- I was no longer uncomfortable about things like that. In fact, I experienced a degree of closeness to both my parents when I visited their eventual gravesite. It was, in a most exquisite and poignant way, an intimate experience.

Then there were his instructions for the funeral itself, which included three songs he wanted to be sung, including "God Bless America." That didn't strike me as a Catholic mass option, but as it turned out, it was. Another instruction, referring to the two years my father had spent in the Air Force during the second World War was this: "I am no hero, but I would like to have an American flag on my coffin." My father had never served overseas, but after looking into it, I learned that, foreign service or not, he was entitled to a military gravesite ceremony, complete with honor guard. When I told him about that several months later he seemed pleased.

And so it went. The Black Book served its role as the facilitator of my conversation with my father about end of life. Like many fathers and sons, he and I had had our ups and downs over the years. There had been times when we had not been on speaking terms for months. My father was not one to bite his lip or hold back his opinion, especially when he disagreed with something I was doing. But on a deeper level, I knew he was proud of me. My father wasn't a warm-and-fuzzy kind of guy; he was much more about responsibility and respect. So on one level we had never been very intimate -- at least in the sense of sharing private thoughts or feelings. Yet our ongoing (though albeit intermittent) conversation about my father's mortality brought us closer together.

The End

One day, I went to visit my father at his nursing home and as I sat beside him he asked me, point blank, what I would do in his situation. It was then that our conversation came in handy. I was not shocked or particularly caught off guard, as might well be the case if we'd never crossed this bridge. I found myself responding quite spontaneously. I told him that there was a good chance that I would have to face the same decision one day, and that I was grateful that we'd had the chance to talk about the things that were in his black book, as well as related issues, over the past year or two. I then said that I thought I would like to think that I would make such a decision based on my quality of life. My father looked up.

"I have no quality of life," he said, to which I had no response, because I knew he was basically right.

At that point he could barely stand without assistance. He could not dress himself or write at all. He had already gone three days without a dialysis treatment -- a decision his doctors had no argument with, given his weak heart. Then I said what I'd been thinking for the past few days.

"What I worry about most," I said, "is that something else is going to happen to you, and that you will end up back in an intensive care unit on life support."

My father's gaze turned down and I could see that he was deep in thought. Then he nodded.

"You have the copies of the will, the health care proxy, the do not resuscitate orders and the power of attorney that mother and I gave to you?" he asked.

I said that I did. "And you know where the black book is?" he asked. Again I said yes.

I saw my father three times after that. I'd visit every day after work. I usually found him in his bed in the nursing home, watching Animal Planet on the television. We spent time reminiscing, but we also continued the conversation. "I think I'd like to be buried in my maroon sports coat," he said, "And no tie. Ties are so formal. I think I'd rather look a little sporty." Indeed, he did.

The Conversation Project

A website has recently been launched which seeks to facilitate end-of-life conversations. Dubbed The Conversation Project, it does not advocate any particular end-of-life decisions; rather, its goal is to encourage families to initiate the conversation, as opposed to avoiding it. Despite any hesitation they may have, I can attest that such conversations can be deeply satisfying for all concerned. Ellen Goodman, a Pulitzer Prize winning author, is a co-founder of The Conversation Project. Readers can visit it at www.theconversationproject.org, where they can also download a "getting started" packet. Additional resources can be found by visiting www.newgrief.com

Joseph Nowinski, Ph.D., is the supervising psychologist at the University of Connecticut Health Center.

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