Posted on 04/02/2005 3:04:50 PM PST by Halls
PINELLAS PARK - The room was quiet Friday. The stuffed animals and family pictures were gone. The air mattress that protected her skin from bedsores is neatly covered with a pink and blue blanket.
Only a few clues marked her passing: a bouquet of flowers, still fresh in their vase. An electric candle, ceramic angel and farewell note left by the staff.
Four boxes of facial tissues were strewn on two chairs.
For the first time in five years Friday, life at Hospice House Woodside went on without Terri Schindler Schiavo.
About 50 patients were fed and bathed. An elderly woman with cancer died just before noon. Workers who helped keep Schiavo alive for so long reined in their emotions and plowed through another day.
"It's been very hard watching a circus outside and be there with her while she was dying," said Susan Agines, a senior nursing supervisor. "I think what finally did it was when the juggler came. To me it was ... awful."
Hospice workers are accustomed to death. Their job is to help families through it. But never has the journey exacted such a toll as this one, said Woodside manager Becky McAllister.
For two weeks, nurses, aides and volunteers had to pass through yelling throngs to get to work. Angry voices accused them of murder.
"Today, we are feeling a mixture of relief, exhaustion and satisfaction that we were able to take care of her as well as we did," McAllister said, "and pride in our staff that we were able to continue in spite of having to run this gantlet."
Losing a patient is never easy, McAllister said. Hospice workers deal with patients and families on intimate levels and tend to get attached.
One patient always walked around with a red mark on his cheek, bragging about his daily kiss from the receptionist. An AIDS patient, after several days of extensive wound treatment, told staff that "no one would ever touch him before that," McAllister said. "He felt loved here."
The bonds with Terri Schiavo also were strong. Her five-year stay was two years longer than any other patient. She originally came in 2000 after Pinellas-Pasco Circuit Judge George W. Greer ordered her feeding tube removed for the first time. People expected her to die soon, but litigation stretched on and on.
The staff took pride that she never developed a bedsore. With twice as many nursing aides per patient than the average nursing home, Woodside workers were able to turn her every two hours.
"She wasn't able to verbalize," said Agines, the nursing supervisor. "But if she was uncomfortable, because the staff had been with her so long, we knew. If she moved, we knew what it meant. We knew when she should settle down with a different piece of music."
For five years, the staff also made connections with Terri's two families - her birth family and marriage family. Some of the staff had moral reservations about removing her feeding tube, others were fine with it, McAllister said. But they were trained to keep those feelings to themselves and try to support everyone equally.
"I said, "This isn't my battle,"' Agines said. "I'm there as a nurse caring for patient. I am caring for the wife of Michael Schiavo, the daughter of Bob and Mary Schindler and the sister to Suzanne and Bobby."
Agines, McAllister and Hospice of the Florida Suncoast president Mary Labyak said their biggest regret was not helping Michael Schiavo and the Schindler family bury their differences, at least long enough for everyone to be present at her death.
Family members have given conflicting versions of what transpired in Schiavo's last few hours Thursday, and the hospice workers declined to elaborate, citing confidentiality.
About 7,000 people die a year under Hospice of the Florida Suncoast care, mostly at home and in nursing homes, Labyak said. Conflict is common as families decide when to treat infections, when to put in feeding tubes, when to disconnect ventilators, when to sign do-not-resuscitate orders.
Mediating disputes "is a way of life for us," Labyak said.
The Schiavo case is the only one she could remember where disagreements kept family members from a bedside at death.
"What saddened us with Terri was all our hoping for reconciliation," Agines said. "To see a family so torn and divided ... I think that was the hardest."
Labyak said it was too early to assess the financial impact of the publicity and furor. She has seen no significant effect on donations.
"Some people wrote letters and said they were not going to donate anymore because they were against" the removal of Schiavo's feeding tube, Labyak said. "Others sent contributions because they said they were proud of what we were doing."
Woodside, with room for 70 patients, is a small part of Hospice's $90-million-a-year operations. Hospice paid about $40,000 for off-duty Pinellas Park police officers to provide security, in addition to officers assigned there by the Police Department, Labyak said. That money came from a "quality of life" reserve fund that usually fulfills last wishes such as helping one patient fly to Peru to visit her mother.
Lasting impact on potential clients is yet to be discerned.
"If anything, I fear that when people need us, they will think of hospice as those signs, those statements, instead of the compassion and dignity and we will not have people dying well in our community because of something they saw on TV," Labyak said. "That would be the ultimate tragedy."
Dr. Theresa Buck, the staff physician, understands the danger. Her own mother and step-mother refused to believe her assessment of Schiavo's condition because of what they saw on television.
"They said she is talking and asking for things," Buck said. "I had dinner with them Wednesday night and couldn't convince them that's not true. And I'm here every day."
Gulfport resident Delys Cavalaro, 82, loves how hospice workers are treating her. "We smile at each other. It's a bond. We don't see many frowns," said Cavalaro, who has breast cancer.
She has a living will and does not want to be kept alive through a feeding tube. "I want to go peacefully. If God chooses to let us live a little longer, I guess that's good fortune."
But she also feels for Mary Schindler. She never met Michael Schiavo, but wished "he would have given her back to her mother. It would have solved a lot of problems."
Jane Burnham knows Michael Schiavo, who lived at Woodside after his wife's feeding tube was removed March 18. His room was next door to the room where Burnham's mother, Betty, 74, lives as she copes with chronic lung disease.
Jane Burnham and Michael Schiavo talked every day.
The day Terri Schiavo died, Burnham's mother was reeling under an infection and was not eating. As they left the hospice, Michael and his brother Brian stopped to say goodbye.
"With all that going on in his life, he knew I was having a rough day," Burnham said. "He came by and gave me a hug and said I was in his thoughts and prayers. He is the nicest man."
Burnham said protesters often yelled at her during her daily visits to her mother. "They have called us murderers," she said. "They say, "Why are you going to go in there where they kill people?' They have no idea what really goes on in here."
McAllister said she expects a new patient to take over Schiavo's room on Monday. It's in the back of the building and looks out over 9 pine-wooded acres. Sometimes, people hold memorial services out there, and weddings, including one between two patients, McAllister said. Afterward the staff welded their hospital beds together.
What you can't see from Schiavo's room is the front of the hospice, where protesters bore witness for two weeks. On Friday, only a few remained.
There is actually a beautiful children's book called "The Clown of God" by Tomie De Paola. It is about a juggler. Here is an Amazon link so you can take a peek:
http://www.amazon.com/exec/obidos/tg/detail/-/0152191755/102-1069774-2485764?v=glance
I can't read this book without tears in my eyes.
Perhaps that juggler read this book. Who knows!!
Hmm.. this is wierd. lol
Huh? A doctor can tell a nurse to kill a patient? And she has to obey?
Really?
"you'd take the word of a doctor who may see the patient once a week over the word of a nurse who sees the patient many times a day?"
I worked as a nurse in long term care for several years. In most cases, the doctors did MONTHLY rounds of their patients. Many times when they came into the facility they spent most of their time at the nurses's station, reading the charting, done by NURSES, on their patients. If they saw the patients at all, it was just for five minutes or so. Most orders were based on what the nurses had charted, AND their brief visit with the resident.
The nurses, as well as our CNA's, were the ones who constantly observed the residents. After all, we worked in their homes, which is what a long term care facility IS. We may not know all the medical ins and outs the physician does, but we are not just pill pushers and shot givers. We are trained to OBSERVE our patients and report our observations to the doctors. Constant assessment is part of the job, and it is ongoing. In long term care, we are the eyes and ears of the physician. A GOOD one recognizes our role, and takes into consideration what we observe as he/she prescribes treatment and writes orders.
pattyjo
that's exactly what I thought.
My Gosh...there are good hospices, there are bad hospices, there are good schools, there are bad schools, there are good restaurants, and there are bad restaurants. What exactly is your point?
What an odd thing to say UNDER THE CIRCUMSTANCES! This is ghoulish and gives me the creeps. Those people in there are MONSTERS from the pit of hell!!!
Your comment seemed to me to be an unqualified endorsement of hospice, period. I used to have such a view and simply wanted to warn any who may hold such a view to realize that they need to check out the hospice as carefully as they would any other service. Many don't come close to living up to their mission statements.
I certainly did not mean to upset you. I am glad you have found good hospice care for your relatives. My thoughts and prayers are with you and your mother.
Ninety-two-year-old Mary Hier had lived in a state hospital for more that fifty- seven years. Elderly and demented, she thought she was the Queen of England. She was not terminally ill. Because of a Zenkers diverticulum in Mr. Hier's pharyngeal esophagus made it almost impossible for adequate food and fluids to pass down her esophagus to her stomach, she had received food by means of a gastrostomy tube for many years. When, in an unexplained incident, Ms. Hier's gastrostomy tube became dislodged, the care facility sought to replace the tube.Although her guardian ad litem argued that nutrition should be differentiated from treatment, the Court declared, "We do not agree that such a distinction should be drawn as a matter of law." (74) The Court noted that the 1983 President's Commission for the Study of Ethical Problems in Medicine had taken the position that "artificial feeding" should be thought of as a "treatment" decision. (75) Additionally the Court found that replacing Ms. Hier's gastrostomy tube would entail a "major medical procedure" that was "highly intrusive" and entailed a "relatively high risk to the patient due to her age." (76) Permission to replace the tube was denied.
Mary Hier's story and her life might have ended there had it not been for the fact that, just as her case was being reported, another story appeared in the same newspaper. It concerned a ninety-four-year-old woman who was doing well following "minor surgery to correct a nutritional problem." The surgery had been performed on an outpatient basis under local anesthesia. The woman's name was Rose Kennedy and the "minor surgery to correct a nutritional problem" was insertion of a gastrostomy tube. (77) For ninety-four-year old Rose Kennedy, matriarch of a rich and powerful family, tube feeding was a mere correction of a nutritional problem. For ninety-two-year-old Mary Hier, poor and mentally ill, it was termed "medical treatment" that was too invasive and risky for a woman of her age.
Last minute intervention by a local physician and an attorney did eventually lead to Mary Hier' s tube feeding being provided again, and both Mary Hier and Rose Kennedy lived for many additional years.
(75.) President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment, (1983), p. 90.
I'm sorry. Whatever nicety it is called, it's starvation/dehydration.
It happens all the time. So I've been told. So does abortion. To me, both are murder.
Before anyone gets hysterical because you had this done to a loved one......I'm not judging you. What I think doesn't matter. Ok?
>>>Perhaps that juggler read this book. Who knows!!
You could be right. It is hard to be optimistic when flash mobs are always deployed for this type of stunt.
"It happens all the time. So I've been told. So does abortion. To me, both are murder."
I agree on all points. So does my wife who is an RN w/ACLS. We both think the whole thing will cause horrible things to happen and have heard of first hand cases of it already starting.
It has the potential to seriously extend a death culture that the abortion laws started. Shocking what a probate judge can order in the USA.
"Please point out where a nurse said that she was talking and asking for things."
See this post:
http://www.freerepublic.com/focus/f-news/1376271/posts?page=124#124
Why did they bother playing music for Terri if she was in PVS?
This is rotten to the core.
Here are some more dots to connect:
Mary Labyak, the CEO of the hospice that killed Terri, is also on the board of directors of "Partnership For Caring" (a pro-euthanasia group formerly known as the "Euthanasia Society of America").
Dr. Ronald Cranford was a member of the board of the former "Euthanasia Society of America".
George Felos used to be the chairman of the board of that hospice until Terri was moved there. He wrote a right-to-die book entitled "Litigation as Spiritual Practice" that contains some really fruit-loopy self-professed comments about his ability to telepathically discern a patient's wish to die.
Barbara Sheen Todd, who's on the hospice's board of directors, serves as a Pinellas County commissioner. Judge George Greer served with her for eight years.
Former Sheriff Everett Rice, who also has a prohibited conflict of interest with Judge Greer, is a member of the board of directors of the Hospice Foundation of Florida Suncoast, a subsidiary of the corporation operating the hospice where Terri Schiavo was a resident.
Dr. Peter Bambakidis' brother is a friend and associate of George Felos. Dr. Peter Bambakidi is the doctor who was called in to break the tie between the doctors who disagreed about Terri’s diagnosis.
Judge John Lenderman, Judge greer's fellow judge on the 6th circuit court, joined the Advisory board of the Hospice of the Florida Suncoast for the year 2000.
Martha Lenderman, sister of Judge John Lenderman, was also on the board of the Hospice of the Florida Suncoast. (She isn't on the board now, though.)
In 1998, the florida legislature created the Florida Panel on End-of-Life Care for the purpose of revising the 765 statute for end-of-life issues. The legislature gave them the authority to dictate what changes the legislature would put in their bills. So, the role of the End-of-Life panel was not just to make recommendations, they were also given the authority to determine what changes would be made into law. And, it's these changes that finally sealed Terri's fate.
Mary Labyak (mentioned above) was appointed directly to the End-of-Life panel.
William Bell, a VP on the board of the hospice that killed Terri, was appointed as an alternate panel member of the End-of-Life panel.
Another group of people, which also included Mary Labyak, and others with connections to the Hospice of the Florida Suncoast, became involved with the End-of-Life panel as formal advisors.
This is just the tip of the iceberg. If you want to know how deep and dirty things really are, read this thread:
http://www.freerepublic.com/focus/f-bloggers/1371538/posts?page
Thanks. It doesn't say when that nurse worked with Terri. It's quite possible she was communicating with the nurses. Hadn't her condition deteriorated over the years with no therapy or other stimulation?
thank you, schmelvin; although I did know about the things you posted, yours is quite succinct....and thanks, also, for the link.
I was just posting more connect-the-dots to Halls and others, as I don't believe we've come across the additional information I have just posted.
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