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| Schiavo Case Underscores Need for End-of-Life Discussion | |||||||
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The past few weeks have been rough for me. The spectacle surrounding the Terri Schiavo case has evoked personal memories that cut deeply. I've thought about this intensely, prayed about it and tried to put it in perspective. Four years ago this July, my spouse, our daughters and I, sat for three excruciating weeks at the bedside of our dying son and brother. It was an experience I would not wish for anyone. To be clear, our circumstances were different from Ms. Schiavo's. Matt had prepared an advance directive. We followed his wishes. His condition was different from Ms. Schiavo's, but the decision to not intervene with extraordinary measures is the same emotionally devastating decision, regardless of the circumstances. When House Majority Leader Tom DeLay said that withholding a feeding tube was a barbaric act, it was as if someone put a branding iron to my heart. It was searing and insensitive. Ms. Schiavo's 15-year ordeal is over, but I know that as I write this, parents, husbands, wives and children are sitting in a hospice, or a hospital room, waiting as we did for a loved one to reach life's end. And they are aware of the public debate that has raged during the months leading up to Ms. Schiavo's death. They have heard the inflammatory rhetoric and have perhaps questioned their own decisions. As they undergo their own private ordeal, they will look deeply at their motivations, painfully evaluate negative characterizations about this most sacred human experience, and struggle with difficult decisions they must make about life support and palliative care. The kindest, most loving thing they can do may be to allow their loved one to die naturally without intervening, but Rep. DeLay has framed this as a barbaric act. They deserve better. They deserve support, compassion, affirmation and sensitive listening. They wait in agony, grasping to understand circumstances that none of us is prepared for, trying to make a loving decision under extraordinarily difficult conditions. They face stress now, and they will face it later. Bereavement following the loss of a child can lead to mental illness, disintegration of marriages, depression and abuse of alcohol and drugs, according to a study conducted by the Danish Epidemiology Science Center and appearing in The New England Journal of Medicine. But these families are not receiving compassion. They're hearing words tossed about such as "starvation," "barbarism," "euthanasia" and "assisted suicide." No loving parent wants to watch a child die. It's not how life is supposed to be. But rail as we might against the injustice of it all, it happens. And there's no way out of it but through it. For me, it was the most painful yet sacred experience I've ever been through-and also the most confusing. I experienced a jumble of emotions that went to the core of my soul. It was heartbreaking and spiritually elevating at the same time. I never felt more alone, or more connected to and loved by those around me. I became afraid of the dark, and yet I felt as close to the presence of a loving God as I've ever been. As I read the Scriptures, they came alive in a way I'd never experienced before. I've not written publicly about this because it's been too painful and too private. But I write today after prayerfully reflecting upon the trauma inflicted by the political debate surrounding Ms. Schiavo. It's been hurtful in more ways than the politicians will ever understand. Their intervention-and that of the clergy who have given them theological cover-is breathtaking for its insensitivity and lack of compassion. The politicians did not have to step into this broken family's dispute. They made an extraordinary effort to create this spectacle, betraying their own claims about respect for the sanctity of life and the dignity of all persons. And the clergy could have spoken of the need to offer pastoral care and counseling to the family, of the fullness of life under God and the great moral challenges that we face in circumstances such as this. But that is not the path either group chose. We need serious discussion about end-of-life care, genetic therapy, medical research and access to health care. If we had this conversation, we would talk seriously about what makes for a life of quality. And we would discuss the insight contained in the sacred writings and holy scriptures of the world's religions. We would talk about our responsibility to care for citizens with disabilities and ensure their rights. We would talk about preventive care and guidelines for end-of-life intervention. We would talk about adequate funding for all of us to have access to health care. And we would talk about holistic life, a life imbued with the sacred; life as body, spirit and soul. My family's experience with Matt was not barbaric, it was sacred. For me to remain silent in response to the intemperate language and political grandstanding of the Schiavo case seems a betrayal of my son and the awe-filled experience we shared together at his passing. In a March 23 op-ed piece in The Tennessean, Dr. Rubel Shelly, an ethicist at Vanderbilt University wrote, "Perhaps death itself needs to be reconsidered by all of us. It is not an absolute evil. Sometimes the real evil lies in forcing someone to endure existence that is no longer really life." As a Christian, I believe death is not the end. It is a transition. I believe with Paul that "We do not live to ourselves, and we do not die to ourselves. If we live, we live to the Lord, and if we die, we die to the Lord; so then, whether we live or whether we die, we are the Lord's." (Romans 14:7-8) We are Easter people, and that means in the darkness we look to the coming dawn, and in the gathering light we see the renewing presence of a loving God who calls us to heal the wounded, comfort the afflicted, bring wholeness to the broken and to live a life imbued with sacred value. Whether we live, or whether we die, we are the Lord's. The end of life is not about politics. It's about faith. |
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