• 100th International Peace Meditation “Knowing When to Live and When to Die”

    “Knowing When to Live and When to Die”

    April 3, 2005–The plight of Ms. Terry Schiavo in Florida has captured much media attention, and created a challenge for many of us. The situation of a woman suspended between no life as one choice, and a very limited life as another choice, causes us discomfort as we contemplate not only her situation, but future situations with which we may each be faced.

    It is important to acknowledge that each person involved in her situation did what he or she believed was best for Ms. Schiavo. Each may have spent countless hours wondering, advocating, praying, and acting in what each hopes to have been her best interest. We can all learn from this difficult and painful situation.

    Knowing when to fight for life, and when to let go, is an age-old question. When faced with the decision, we may act as if we are sure that we have the right answer. But, behind the actions, in the time between actions, lies the time for reflection and questioning. When does life begin? When does it end? What do we mean by “brain-dead”? What do we mean by “vegetative state”? Who decides? How is the decision made? How much do we really know about the human brain? the human mind?

    Perhaps the answer was easier before the advent of life-sustaining technology that we have today. And there will be many future changes. It may not be possible to say today what we would each want when we don’t know the options, and ramifications of those options, in the future. What will stem cell research hold? What if ventilators become user friendly and affordable? What if we let go of older notions of what prolonging life means, and become open as a society to what we now call life supports in the same way that glasses are vision supports, and hearing aids are hearing supports?

    What if we can make the technology more freeing for the patient so that they can move about? Can we redesign ventilators so that one is not hooked up by long hoses to a large and loud machine? Can we construct feeding devices that are easy to operate and less obvious?

    Feeding tubes may be required for those with swallowing disorders. They become necessary when one would aspirate food into the lung if one were to attempt to swallow. Why do we hesitate at feeding tubes that help when one can no longer swallow without aspiration, but accept heart pacemakers that regulate electrical impulses? Do we find it easier to accept technology placed outside the body, or inside the body? Are we allowing outdated modalities and moralities to keep us from moving toward new solutions? Are we preventing medical research from developing innovative technology solutions due to fear of looking directly at the issue of new supportive devices for the most challenged?

    My Mother was on a ventilator for 18 months, and on a feeding tube for 23 months. This conjures up for many a picture of a comatose patient with family desperately and selfishly clinging to any life remaining. However, the picture that most of us have been given is not accurate. There are people, like my Mother, whose mind is alert and active, but who have an inability to speak. In my Mother’s case, this confused some of the medical staff because they were unable, or unwilling to take the time, to try to communicate with her. I could read her lips. She could shake her head. When her hands became too weak to write, I could also speak and watch for her eyes to respond. There are many ways to communicate. She was strong through multiple pneumonias, and hospital-acquired illnesses, which many of us felt was part of her communication about her desire to live. Her actions did not fit the expectations of the neurologists who read and discussed her brain scans, leaving questions about what we really know.

    I fought for her to live, and ached seeing her suspended, with a mind that was very alive and a body that had become weakened because of being kept in bed due to the restrictions of her medical devices. As she weakened, her heartbeats would become irregular with movement, and thus she became more and more inactive.

    I was pressured by some to turn off her ventilator, as was the frequent outcome for other patients. Rehabilitation is often required to wean one off a ventilator, and rehabilitation services were denied to those without insurance. We were fortunate to have insurance, and the benefit of those services as long as they were a medical option. When she was ready to be released from the hospital on a ventilator, no nursing home in her home state of West Virginia would accept her, as there was no reimbursement rate for this service. When I attempted to meet with the health committee of the West Virginia State Legislature, my phone calls were not returned.

    Healthcare is a big business. It is expensive. However, we have learned that the retail cost of medications may far exceed their production costs. There may be options other than renting ventilators at a huge cost per day to cover servicing by the rental company. It may be that the public must insist on more research for life supporting technology that is user-friendly and allows for a better quality of life.

    Christopher Reeves had a ventilator attached to his wheel chair. His quality of life was impacted by his injury, but the potential he lived for was hope for a cure. I am neither advocating nor rejecting stem cell research. I am, however, hopeful that more people will educate themselves regarding options available now, and potential options for the future. We must not be swayed by those who fear escalating healthcare costs as the population continues to live longer. Costs can be manipulated by supply and demand, and by competition. If more people wanted better technology for a better quality of life for a longer period of time, money would be designated for research and development, and the demand for this technology would lower the cost.

    Signing healthcare documents without understanding current, and especially future potential options, may be signing one’s life away unnecessarily. Keeping an open mind to the future is essential. Keeping insurance companies, and hospital medical ethics committees, separate is critical. Accepting money or services from the companies that stand to gain financially from policies or laws, is unacceptable. Demanding that politicians educate themselves to options, rather than simply react to the fear of rising medical costs, is imperative. Bringing together the best minds to explore life supporting, not prolonging, technologies is a must.

    We don’t like to contemplate issues that we fear; yet each of us may be faced, as I was, with making ultimate decisions about the fate of another. To do so without looking at the opportunities for hope, without questioning whether “quality of life” is cast about as an excuse for terminating life, or without a sense of wonder at this very thing we call “life”, would be a mistake.

    Sue Kidd Shipe
    Executive Director

    In December of 1996, after eight years battling lung cancer, Sue’s mother went into Ruby Memorial Hospital in Morgantown, West Virginia. Except for three weeks at home on life supports, her mother stayed in the hospital until her passing on Nov. 9, 1998. Sue’s experiences attempting to support her mother’s choice to live, in spite of the necessity for life supports for 18 months, brought Sue into contact with many others on similar journeys, but without adequate supports. As she and her father observed and experienced together the limited options available to those in the most dire of need, both vowed to address the problems witnessed in hopes of improving life options for those less fortunate. However, Sue’s father passed away 41 days after her mother, leaving Sue to educate and raise consciousness about issues of healthcare hidden in the intensive care rooms of hospitals, and little known to the general public.

    From United We Stand: Reflections On a True Democracy by Sue Kidd Shipe

    Sue’s father was United States District Judge William M. Kidd in Clarksburg, West Virginia. Her Mother, Madelyn Conrad Kidd, was a much-loved teacher in the Sutton and Gassaway public high schools.
    Thank you for joining us for the 100th International Peace Meditation. This Meditation is dedicated to all caregivers of the critically ill. May you be blessed with joy that comes from giving, peace that transcends human understanding, and fulfillment that comes from living one’s spiritual purpose.

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    501 ( C )( 3 ) tax-exempt organization recognized by the United States Government. Your contribution within the USA is tax-exempt.
    Sue Kidd Shipe, Executive Director
    International Institute For Human Empowerment, Inc.
    P. O. Box 3920
    Albany, New York  12203   USA
    (518) 393-9491

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