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.
"I'll take the doctor's word over that of a nursing supervisor...
I'm not at all certain that's a valid choice."
Doctors are like managers in a big company. They do not see the day to day. They read charts and prescribe drugs. Nurses have the contact and do the work.
Doctors mostly sign orders and prescriptions.
Exactly!
Scumbags. Just like the Nazis, those nurses can participate in starving people and rationalize it.
Apparently, it hasn't.
According to my post #128, the Pennsylvania Court of Common Pleas justified its termination of nutrition and hydration, by ordering a hospice to withhold such, by stating it was authorized to do so according to this:
Noting that Fiori's life was without content much less quality, the court ordered the nursing home to end all nutrition, hydration, medication, and other life-sustaining procedures. The court based its decision on a best interests standard derived from a report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.
When I googled that in, this is a website it took me to, some with available documents. THEY ARE VERY LONG.....one is about 180 pages in length....obviously, I haven't read them....but, if the Court in Pennsylvania is stating they get their authorization to withhold nutrition and hydration, due to the President's commission (George H.W. Bush), to CONGRESS. Therefore, somewhere that language to withhold nutrition/hydration is in one of those documents, maybe more. There are letters in at least a couple of them addressed to then President George H. W. Bush and members of Congress were involved with this, as well.
This Congressionally mandated group was formed in 1978, succeeding the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. It worked independently from January 1980 to March 1983.
* Defining Death (1981) (pdf format)
* Protecting Human Subjects (1981)
* Whistleblowing in Biomedical Research (1981)
* IRB Guidebook (1981)
* Compensating for Research Injuries (1982)
* Splicing Life: The Social and Ethical Issues of
Genetic Engineering with Human Being (Nov 1982)(pdf format)
* Making Health Care Decisions (1982-83) (Nov 1982) (pdf format)
* Deciding to Forego Life-Sustaining Treatment (1983) [NOTE: NOT AVAILABLE AT SITE]
* Implementing Human Research Regulations (1983)
* Screening and Counseling for Genetic Conditions: The
Ethical, Social, and Legal Implications of Genetic
Screening, Counseling, and Education Programs (Feb
1983) (pdf format)
* Screening and Counseling for Genetic Conditions: The
Ethical, Social, and Legal Implications of Genetic
Screening, Counseling, and Education Programs (Feb
1983) (pdf format)
* Securing Access to Health Care (1983) (pdf format)
* Summing Up (1983) (pdf format)
Considering flash mobs are used for everything from protests to infiltration....
I wouldn't lend weight to >>>Schindlers' supporters weren't very nice to patients' relatives.<<<. We have no idea who was doing what there.
Or do you actually think it was any of Terri's supporters that was doing the juggling?
Certainly. What some people fail to grasp is that working with such people takes a lot of hours over a lot of days/months/years. Nurses and nursing staff can do this. Doctors, by the nature of their job, generally cannot.
Although I don't know how one could prevent abuse of the system by the submission of "phony" PVS cases, one thing I'd like to see would be a rule that would require that, before a patient could be declared PVS, they'd have to be examined for some period of time by doctors who would be paid if, and only if, they could provide a certain level of proof that the patients in question weren't PVS. Although the exact means of proof would vary from patient to patient, a typical method of proof might be to hook the patient to a polygraph and show them a series of randomly-sequenced photographs at 30 second intervals. The photographs would be chosen by the doctor as falling into two categories, but the sequence would be random. The doctor would not be shown the sequence of photographs but would receive the polygraph record. The doctor's job would then be to determine which photographs were in which class by examining the polygraph. If the doctor could do this with an accuracy level significantly above chance, that would prove the patient wasn't PVS.
Although one would have to ensure that the system wasn't abused by doctors who had phony PVS patients admittd for testing (so they could reap the rewards for finding them non-PVS) such a system would be much better than the present one insofar as doctors would have a strong incentive to find proof that patients weren't PVS.
Every single one of those nurses had to knew very well, that whether Terri was PVS or not, was the central point in determining whether she could be killed. AND THEY REMAINED SILENT, JUST TO KEEP THEIR JOBS!
Was that you 'juggling' at the hospice?
/sarc.
When I read about what an angry, rude mob we were, it makes me laugh. WHAT A BUNCH OF LIES. The local papers are still saying we were loud. Our signs spoke volumes so we didn't have to. There were very few outbursts but considering the circumstances, who can blame someone for venting????
I have found out the hard way that hospice care varies tremendously. I have had family members under hospice care in certain states, where the hospice workers were truly angels on earth. But I have also had the misfortune of running into very poorly run hospices that did not even provide the most basic care to ease a patient's suffering.
Generalizing that all hospice workers are wonderful, caring, nurturing people can make for some very unfortunate surprises at the worst time--when a loved one is dying.
I was being a tease about the juggler.
I just wanted you to post that here because there are a few flies buzzing around here. Wanted your comments here :)
Interesting, when I googled that title, here's what came up:
Dr. Cranford has specialized in the field of clinical ethics since the early 1970s. During this time, he served as a consultant to several national commissions on right-to-die issues. These included the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, primarily the reports on "Defining Death" and "Deciding to Forego Life-Sustaining Treatment".....
"Defining Death" and "Deciding to Forego Life-Sustaining Treatment are both in that list I provided in my post #144. "Defining Death" is available in pdf.
There are dots waiting to be connected, IMHO.
you have freepmail.
Bump!
This comment is obviously nothing more than the reflexive twitching of a skull full of grey cells and some sparks of electricity.
Very, Very interesting!!!
In agreement with you.
What was it someone wrote about Terri's family not being nice to the families of the patients?
I, for one, would want someone to be VERY NASTY to someone in my family who was trying to kill me.
Just because those people don't accept euthanasia as murder doesn't stop it from being murder.
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