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Pinellas Park, FL, a suburban enclave nestled between Tampa Bay and the warm waters of the Gulf of Mexico, has become the epicenter of the debate over euthanasia. At the height of the drama that unfolded in October, protesters on both sides of the debate stood outside Woodside Hospice and weighed in on whether relatives and health care providers should be allowed to remove a feeding tube from one of its patients — an action that would ultimately lead to her death.
Inside the hospice, 39-year-old Terri Schiavo, who has been in a persistent vegetative state since she suffered a heart attack in 1990 and is thus likely unaware of the controversy swirling around her, continued to be cared for like the other patients staying in the inpatient hospice facility.
"Our main objective through all this was to keep our focus on the patient and family," says Louise Cleary, public relations and marketing director for Woodside Hospice.
It would have been easy, perhaps understandable, if hospice officials and employees found themselves overwhelmed by attention, both good and bad. The Schiavo story ran nationally from the time Terri’s husband, Michael Schiavo, won the right to remove the feeding tube that was keeping her alive to the moment Florida Gov. Jeb Bush and the state legislature intervened and passed "Terri’s Law" to have the tube re-inserted.
The frenzy is expected to pick up once the Florida State Supreme Court rules on whether Bush’s and the legislature’s actions were constitutional. Almost lost in the salvos lobbed by right-to-life activists, including many from the anti-abortion movement, and proponents of euthanasia, such as End-of-Life Choices (formerly the Hemlock Society), was any message about the importance of preparing advance care directives.
But among the letters to the editors of the two local papers — the Tampa Tribune and the St. Petersburg Times — were those that told how an ounce of prevention could have kept the Schiavo case from becoming so controversial.
The National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA, used the opportunity to remind people to prepare living wills or advance directives. "The NHPCO urges everyone, regardless of their age, to take this opportunity to discuss their end-of-life wishes with family members and put it in writing with advance directives," the trade group said in a written statement. "The National Hospice Foundation, NHPCO’s development arm, has developed a number of brochures to help families begin these important discussions."
While the message was aimed at the general public, industry leaders also hoped hospices would use the Schiavo case as a soapbox to remind people in their own communities to put their wishes in writing and share those wishes with loved ones.
"We’ve seen hospices pick up the ball and run with it," says Jon Radulovic, senior communications officer for NHPCO.
"As the very public and tragic battle surrounding Terri Schiavo’s life has played out in the national media, I suspect many Americans have been asking themselves a troubling question: If I were in her position, what would I want? And, perhaps even more importantly, would anyone know what I want?’" Donald Schumacher, president of NHPCO wrote in an op-ed piece. "We need to start asking these questions out loud, in conversations between husbands and wives, adult children and their elderly parents, caregivers and friends and loved ones of all kinds. Indeed, if there is any good to come out of the firestorm over Ms. Schiavo’s case, let it be increased awareness of the need for and use of advance directives’ — the umbrella term for documents that spell out in writing how you wish to spend your final days."
Since the case was publicized, Partnership for Caring (PFC), the only consumer group to offer free advance directive documents for all 50 states, has fielded thousands of requests for living wills and for advice on how to complete the documents.
PFC reported that in the weeks surrounding coverage of the Schiavo case, the number of advance directives downloaded daily from its web site increased from an average of 150 to over 1,000. And the number of calls to its toll-free hotline that counsels consumers on how to complete the forms jumped from 20 to 150 a day.
"Regardless of the countless parties weighing in on the Schiavo controversy, the essence of the matter is that this terrible family tragedy was preventable," says a position statement prepared by the Last Acts Partnership.
In 2001, Hospice Management Advisor published an article offering guidance to its readers on the importance of advance care directives. The article stressed the importance of educating the public, and experts advised that the time to educate people about advance directives is not in the hospital before a procedure, but in the physician’s office while they are healthy or in a lawyer’s office while preparing their will. At that time, people should receive literature that explains such intensive care treatments as cardiopulmonary resuscitation, ventilators, and artificial nutrition and hydration.
The topic of dying is a complicated subject. Perceptions of end-of-life care vary from one person to the next, one religion or culture to another. There is no one-size-fits-all approach to getting the discussion rolling, experts say. People can benefit from examining their feelings about death before they are confronted with it. Everyone should explore their attitudes toward death and how denial, anger, spiritual crisis, or acceptance can play a role.
Hospices take a variety of approaches to death education. For example, information about what to expect during a terminal illness and near death should be available so caregivers will understand that when their loved one becomes withdrawn or disoriented, that is part of the natural process of dying.
Other programs help people access their own resources. For example, while a daughter may not have lost her mother to breast cancer before, she has dealt with other losses, challenges, and crises. She can take what she has learned from these past experiences and apply it to the current situation. For example, keeping a journal, writing poetry, and taking long walks may have helped this person adjust to her divorce. Those learned coping skills may be used to deal with her current situation.
Another way to promote advance care planning is to provide supportive counseling for patients and family members in the medical office setting where life-limiting illnesses are diagnosed. It is common for family members to misunderstand the concept of withdrawing life support. Their image usually is one of pulling a plug, as opposed to decreasing ventilator support gradually, accompanied by measures to keep the patient comfortable with medication.
In addition to raising awareness about advance care directives, the Schiavo case has potential both to contribute to public misunderstanding of the hospice mission and to provide an opportunity to educate the public about hospice care. "Unfortunately, hospice got dragged into the story," Radulovic says. "Some hospices got calls, and we got a lot of calls. There were misconceptions about hospice, that euthanasia and hospice were related."
Recognizing the legal complexity and emotional breadth of the Schiavo case, the NHPCO used the stage to clarify the role of hospice in end-of-life care. "Hospice does not make decisions for patients or families, nor sit in judgment of their choices," the NHPCO said in a written statement. "Instead, hospice provides information on care options and compassionately carries out those decisions with respect for their wishes and the laws of the land. This enduring focus on the patient’s wishes and the provision of interdisciplinary care are the cornerstone of hospice."
The NHPCO also used the opportunity to distinguish inpatient hospice from the more common home hospice. "Ms. Schiavo is currently receiving care in a hospice residence in Pinellas Park, FL," the NHPCO statement continued. "While approximately 80% of hospice care is provided in the home, many hospice providers have residences for patients who cannot be cared for in their own homes. Residential hospice programs provide compassionate hospice and palliative care in a home-like setting 24 hours a day, seven days a week. Neither the specific hospice or NHPCO is involved in the legal proceedings associated with the patient or the decisions to remove the feeding tube. Hospice provides state-of-the-art medical care reflecting the highest standards of practice and compassion. Hospice also offers bereavement services for family members."