International Association for Hospice & Palliative Care

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IAHPC Hospice and Palliative Care Newsletter


2005; Volume 6, No 4, April


The Terri Schiavo Case in the US

Janet L. Jones, B.S., R.N., FAAMA
( USA )

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The Terri Shiavo Case in the US

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The Terri Schiavo Case in the US

I had originally planned to write a description of the comprehensive hospice and palliative care program that Alive Hospice offers in the Middle Tennessee area, but, as circumstances would have it, the most crucial thing happening right now in the United States is the controversy over the Terri Schiavo case. As one who has been intimately involved in end-of-life ethics for the past 20 years, I feel compelled to address this issue. I’ll begin with a history of the case.

Terri Schiavo is a 41-year-old woman who suffered a cardiac arrest at age 26 that is thought to be a result of an eating disorder. She was deprived of oxygen for 10 minutes prior to being resuscitated. Over the past 15 years she has been unconscious, with apparently only brain stem functions intact for that entire time, and she has been sustained via a feeding tube. Michael Schiavo, her husband of five years at the time of her collapse, states that Terri’s wishes about not wanting to live like she is now were made clear to him after they watched a similar situation on television prior to her attack.

In 1993, Bob and Mary Schindler, Terri’s parents, fought with Michael over a medical malpractice award of $1 million dollars given to the Schiavos. Both parties disagreed about Terri’s wishes, and, in 1998, Michael began battling in court over the right to remove the tube so that Terri’s death could occur naturally. The malpractice award given to the Schiavos has since been almost totally consumed by the costs of medical care and attorneys’ fees.

In 2001, and again in 2003, the courts decided that the tube could be removed, but those decisions were later reversed. In the 2003 decision, the governor of the state of Florida, where Terri resides, intervened in the case and ordered the tube reinserted. That order was later deemed unconstitutional. The courts then reinstated the order to remove the tube, and on March 18, 2005 , the tube was removed. The United States Congress intervened by passing a law allowing the parents to take their plea to federal court. After the federal appeals court denied their request to reinsert the feeding tube, the Schindlers filed an appeal with the Supreme Court, and that appeal was also rejected.

Terri remains without the feeding tube at the time of this writing, and she is receiving care from a hospice in Florida. That hospice has remained steadfastly supportive of her, and the staff has consistently communicated that it is not their role to decide or opine what the right thing to do is in regards to the feeding tube. The hospice’s role is to provide excellent comfort care to Terri and support for her family members in whatever ways are appropriate. The staff has been doing this since the time the first feeding tube was removed and doing so under a microscope. In my opinion, they have been phenomenal role models of hospice and palliative care.

Regarding some of the ethical issues involved in this case, there are several that are troubling and several that provide opportunities. Those I find most troubling include: 1) Confusion on the part of the general public between euthanasia and allowing death to occur from natural causes – although this is arguably a gray area, there is general agreement from ethicists and religious leaders alike that sustaining life by artificial means is not required to be maintained and that removal of such artificial devices or means does not constitute euthanasia; 2) Misunderstanding on the part of the general public about suffering occurring from starvation or dehydration – medical experts generally agree, and have evidence, that suffering is not present when food and fluids are not forced; in fact there is evidence to the contrary that endorphins produce a sense of euphoria in these cases, and for those who are imminently dying forcing food and fluids produces distressing symptoms; 3) Governmental intervention in private concerns – for purposes of this article I am assuming that the court rulings are evidence of sufficient testimony to ascertain Terri’s wishes and that she would not have wished to be kept alive by artificial means. From my personal perspective this situation is highly personal and intimate. I believe that the United States legal system is an appropriate forum for the argument. It is inappropriate, however, for the government to interfere with due process to enforce their personal beliefs. We do pride ourselves in America on having certain inalienable rights as individuals. I think we are dangerously close to having government dictate personal morals in this case.

On the opportunity side, I am pleased to see the amount of conversation that has been generated in the media and in the general public about the issue of how one would wish to live at the end of life. In a society that normally denies death and fails to discuss it in any way, this has made it much more personal to us all. As we watch the struggles this family endures, we begin to realize the gift we can each give our loved ones just by having the conversation and documenting our wishes for all to see. I hurt for the parents and husband of Terri Schiavo, and certainly for her, but I know that they are inadvertently giving us all a tremendous gift by living in this glass house. And I am ever grateful for my calling in the hospice field - to walk with those who are making the ultimate transition is a blessing. I’m glad that Terri has hospice walking with her on this journey.

The opinions expressed here are the personal views of Jan Jones and are not those of Alive Hospice, or IAHPC. Ms. Jones is President/CEO of Alive Hospice in Nashville and a Member of the IAHPC Board of Directors


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