Krista's Journal: Leaving One's Legacy

December 1, 2005

The genesis of this program was the Terri Schiavo case — one family's personal tragedy that became a public drama, political football, and media spectacle. The debate over Terri Schiavo's life became a kind of archetypal moment in American life. Somehow, what was happening to one woman in Florida, along with her divided family and her doctors, was of import to all of us. But that story moved forward by way of legal decrees. It became difficult to separate out what was genuinely at stake for all of us. What basic human hopes and fears did her tragedy bring to the surface? What confusion did it stir that would not go away when her life ended?

On one level, the answer to that question is simple. Wondrous advances in medical technology present ethical decisions that human beings have never before faced. Terri Schiavo's fate brought new medical/ethical vocabulary and debates into the open. But in fact, decisions about prolonging life or allowing death are already being faced by countless families in hospitals, hospices, and homes across this country on a daily basis. Most often, they are resolved peacefully and with dignity. The controversy around Terri Schiavo focused almost exclusively on the "right to life." Missing was a real attention to the qualities and the meaning of death. And that is what Joan Halifax addresses, with unusual perspective, in this week's program.

Death in America, she says, was long treated as a "management problem" and a biological evil — a technical failure to fight at all cost. On the contrary, with a manner that is at once compassionate and refreshingly unsentimental, Joan Halifax describes the fact that human beings are naturally equipped to die. She knows death not as something to hasten or anticipate, but as an eventual part of the fabric of every life. Death is viewed in some cultures, and experienced in some lives, as an opportunity rather than a defeat. It is always, she says, a mystery, whether that word is imbued with religious connotations or not. Moreover, the way we die can be a legacy many of us leave to those we love, as powerful as the legacy of the lives we lived.

We discovered Joan Halifax after delving into the topic of death in America and discovering the fascinating recent history of a sea change in the American medical profession's approach to death. Beginning in the 1960s, amidst many consciousness-raising movements, caregivers and family members developed new practices for what they called "conscious dying." Psychiatrist Elisabeth Kübler-Ross theorized there are stages toward the acceptance of death. She also described her controversial but influential studies of near-death experiences, opening up a new public contemplation of death as a part of the journey of life. The hospice movement created the means for medical professionals and families to accompany people compassionately into natural death. In the ensuing years, the field of palliative care to ease extreme pain at the end of life has become far more advanced. And there is an expanding universe of study and conversation — across medical, psychological, and spiritual disciplines — to support the human experience of dying. For example, the Open Society Institute of philanthropist George Soros, recently concluded a far-flung, three-year Project on Death in America.

As part of that project, Joan Halifax was asked to share her experience and knowledge on the "inner life" of the dying. And that is what she shares with us, along with the effect this work has had on her. This is not a saddening hour of radio, as one might expect; it is a frank and intriguing exploration of a natural part of human experience. Listening to Joan Halifax, paradoxically, has a life-giving effect. She is at once a spiritual presence to dying people and their families and an intensely practical person, and her perspective merges an acknowledgement of mystery with a high regard for medical advances in alleviating the pain of dying people. She has worked with the best physicians in this country on end of life issues, and has also consulted the Dalai Lama about the field of palliative care.

Joan Halifax suggests that, just as we educate our young on sexuality, there should be some place in the spectrum of American life for education and reflection about dying, as yet another inevitable passage of life. Perhaps more than ever before in human history — as complex medical decisions are possible in each of our lives and further debates in our public life are inevitable — we need to understand the beliefs that shape us and that we wish to guide us. Joan Halifax proposes the following questions for consideration: Do we approach death as a mystery, a liberation, or a defeat? Do we believe in an afterlife? What is loss, and how do we live with it?

I understand better than before, after this conversation, that as human beings we will be enriched by engaging these large and enduring questions that legal and medical processes ignore or obscure. Reflection on the quality of death can be a clarifying part of our individual and communal reflection — both moral and medical — on the quality of life.

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is a medical anthropologist, Buddhist teacher, and founder of the Project on Being with Dying.