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THE CASE OF TERRI SCHIAVO

WHY IS HOSPICE INVOLVED IN THE SCHIAVO CASE?

March 29,2005

STATEMENT BY THE HOSPICE FOUNDATION OF AMERICA
CONCERNING HOSPICE, FEEDING TUBES AND THE TERRI SCHIAVO CASE:

The Terri Schiavo case has brought attention to the role of hospice in end-of-life care, but unfortunately due to misstatements and misconceptions, the case has the potential to damage the essential work carried out daily in more than 3,000 hospices nationwide. And although caring for the dying is essential, it is neither simple nor easy.

It is important to understand that the Hospice Foundation of America (HFA) takes no position in the Terri Schiavo case. Hospice Foundation of America has never taken a position on artificial feeding and hydration, nor any other medical intervention or treatment. However, HFA believes it is important to clarify the role of feeding tubes and hospice care, as well as the role of hospice care in our health care system. Hospice Foundation of America believes that the role of hospice care has not been properly addressed in this case.

Based on a steady stream of correspondence we have received in regard to this case, we understand that for many with only cursory knowledge of hospice care and the Schiavo case, hospice may erroneously be held responsible for the fate of Terri Schiavo. Nothing could be further from the truth.

Nationwide, more than 885,000 people approaching the end of life received comfort care from hospices in 2003. That number is expected to grow to one million in 2005. They chose hospice care because they knew it would support their desire to live their remaining months free of pain and with dignity. For them, it was an appealing alternative free from tubes, surgery, chemotherapy, radiation and other futile attempts to prolong their lives.

Hospice is not for everybody; but it is always a care choice that is made by legally qualified people. People are never forced to enter hospice care because of a doctor’s order or a court order, and many people have died in hospice care with feeding tubes in place. In other words, removal of a feeding tube is in no way a condition of entering hospice care.

Terri Schiavo is in a hospice because hospice clinicians, unlike clinicians who are not trained in end-of-life care, are capable of removing a feeding tube and caring for the patient and his or her family if the patient or legally authorized surrogate asks for the tube to be removed. In this particular case, the primary decision-maker was Mrs. Schiavo’s husband, which is appropriate under our laws and cultural values.

Removal of artificial nutrition and hydration is not an unusual decision to make near the end of life, but as a society, our views on artificial feeding and hydration are emotionally charged. Indeed, there are various religious views regarding artificial feeding and hydration. Some religions condemn the removal of artificial feeding and hydration and believe that feeding tube treatment is morally obligatory; other religions see it as unnecessary medical intervention that is qualitatively different from feeding someone with a cup and spoon. In addition to varied religious positions, this case involving a feeding tube is obviously highly complicated because of the family situation, Mrs. Schiavo’s age and the lack of written documentation regarding Mrs. Schiavo’s treatment preferences.

Regardless of the opinion one holds in this case, or in other cases involving artificial nutrition and hydration via a feeding tube, courts in the United States have upheld the right to have a feeding tube discontinued when its removal is requested. The body of U.S. law holds that artificial nutrition and hydration is a medical treatment and may be discontinued or removed under the same conditions as any other form of medical treatment. Hospice is not responsible for making those rulings of law, but hospice upholds the law. Because this was the plan of care selected, i.e. to discontinue feeding and hydration, Mrs. Schiavo was deemed to have a life-limiting condition and was therefore an appropriate hospice referral.

Those who choose removal of a feeding tube have two major reasons for doing so: they believe that it is unnecessarily and artificially prolonging life, or, in the case of many people who are close to death, people may make the choice of removal because it can complicate the dying process. As an underlying illness or condition progresses, the body begins to shut down and becomes increasingly unable to process the nutrients. As a result, the terminally ill person may vomit, become bloated and experience painful abdominal cramping, or experience fluid overload in the heart and body tissues. As the body fails so too does metabolism, and so there are fewer places for the hydration and nutrition to work.

The decision to enter hospice care as a way to peacefully live out remaining days, is an option that terminally ill patients and their families make in growing numbers each year. Hospice admits people to its care after an attending physician, unassociated with a hospice, determines that the person’s life expectancy is about six months, but the admission is always the choice of the terminally ill person or, if they are incapacitated, their family members.

Most often, hospice care is delivered in a person’s home. Other hospice settings include nursing homes, hospitals, and inpatient hospices, such as the inpatient hospice that houses Terri Schiavo.

Hospices are uniquely qualified to handle the dying process by delivering the best care available, which includes supportive care when treatment to cure is either not possible or no longer desired. The major focus of hospice is to control pain and manage the discomfort of symptoms, while easing the physical, psychological and spiritual pain that may be associated with death. Its ability to use pain relieving techniques is unsurpassed by other medical specialties. Hospices care for people by using a team of medical, social and spiritual professionals, as well as volunteers from the community.

Hospices throughout the country also recognize that people and families hold their own religious and cultural beliefs about the end of life and how they want to experience it. Recognizing the variations among us in regard to end-of-life care, Hospice Foundation of America recently published Ethical Dilemmas at the End of Life, a 357 page book written by some of the nation’s leading authorities on ethics in end of life care.

Consumers and Health Care Professionals please note: The Schiavo case and other typical but difficult end-of-life ethical dilemmas will be discussed during HFA’s April 20th teleconference, Ethical Dilemmas at the End of Life. This program is free to everyone. See more information and locate a site here.

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