Internet is a valuable resource for hospice info
June 1, 1999 6 minutes read
Internet is a valuable resource for hospice info
Web sites educating public on end-of-life care
The Internet is teeming with life. You can shop, invest, meet friends, and plan vacations, all with a click of a mouse. A person can practically live on line. So it should come as no surprise that dying — the final stage of life — has its place in cyberspace.
For one Florida hospice, the Internet is the main messenger spreading the word about hospice and end-of-life care. What started as a pet project of a nurse/computer enthusiast has grown to become one of the most comprehensive hospice resources on the Internet.
In many respects, the Hospice of North Central Florida (HNCF) in Gainesville is much like any other hospice around the country. HNCF, which provides home hospice care and residential facility care to about 250 patients, also struggles with census and patient-stay issues. A large part of the problem, as most hospices can attest, has been the public’s lack of knowledge about end-of-life care. This includes physicians who largely are responsible for sending patients to them.
Filling a need
In 1997, HNCF’s Webmaster, Jim Nash, RN, and a nurse at the hospice tinkered with a personal Web site that offered links to other hospice sites on the Internet. In his cyberspace travels, Nash began to realize there was need for a hospice resource on the Net, one that brought together the fragmented pieces of information that already existed.
"I originally started it as a personal project," he says. "Initially, my goal was to disseminate information. Our purpose has changed since then. Now we are trying to promote hospice on a large scale as well as promote our organization."
HNCF’s Web site is divided into two sections. One promotes its hospice, including an interactive tour of the residential facility, and provides information about its services. The other, called Hospice Hands, is a gathering place for people to become familiar with hospice care through original articles, a chat room, and an index to other sites.
Nash has built a tool that takes one of the most basic events of life and connects it with one of the century’s biggest technological phenomena. Judging from comments e-mailed to Nash, the HNCF Web site is educating and comforting people in its own community and around the world.
Voices from the Internet
Here is a sample of visitors’ feedback:
• "My sister is in the dying stage. I am flying to Calgary to be with her and the family. Your Web site has helped me understand the process of dying. She is going to be in the most peaceful place, free from pain. Before I fly home to say goodbye, I just wanted to take this opportunity to share with you how much support I received through your Web site. I can say goodbye to my sister with a peace in my heart."
• "I read a number of articles here at your Web site. I wish this information had been available to me when I was going through my parents’ deaths. My mother passed away 8-1-94, and my father passed away 11-19-96. I didn’t understand the process of death and dying — didn’t understand everything my mother was going through. I read one of your articles, which explained the process, and I cried as I read it. Even though it is after the fact for me, it was still helpful — although I wish I had done some things differently. I’m sure it is a great comfort to people experiencing death processes now."
• "I am a faculty member in the Department of Pharmacy Practice at the School of Pharmacy at Texas Tech University Health Sciences Center. My practice interest is hospice care/palliative medicine, and because of this interest, I will be preparing material for a lecture series for our students on death and dying. Your article on your Web page is excellent. I would like to quote this article in my lectures."
As evidenced by the above comments, HNCF’s Web site has, at least in small part, helped educate the public and physicians who are uniformed about palliative care. Its early success has opened the eyes of HNCF’s administrator, Patrice Moore, MSN, who now is a strong advocate of using the Internet to promote hospice care.
"This is an effort to get the word out in any way we can," she says. "We thought we could use the Internet to promote our services within the community and create something that could be used as a resource outside our community."
While its Web site has generated some referrals from local physicians, it may be getting more than it expected from the global community. A chance meeting of hospice professionals based in Oklahoma and Germany in the chat room resulted in the organization of an American-German hospice conference last June in Germany, where U.S. hospice professionals shared experiences with their German colleagues.
The chat room also was the site of hospice care via the Internet. According to Moore, an Australian woman living in a remote area with her dying mother solicited the advice of the hospice professionals who regularly visited the Hospice Hands chat room. The clinicians were able to advise the woman on how to care for her mother and make her as comfortable as possible until her death.
"The usual things that we do in hospice, we did on line," said Moore.
She says her hospice’s Web site has become an integral part of the organization’s overall strategy to educate the public and referral sources. HNCF’s routine campaigns to educate physicians through letters and brochures, for example, also includes invitations for prospective referral sources to visit the Web site. The same is true for donors and others on its mailing list.
More info is needed
Moore would like to see the Web site expanded to include telemedicine capabilities, in which patients in remote areas with computer literacy can communicate with interdisciplinary team members.
As the Internet becomes an even greater source of health care information, other hospice providers will turn more and more to the growing medium to educate referral sources and the public, either through Web sites of their own or by referring people to other sites.
While HNCF represents a responsible information source, one of the biggest challenges will be keeping consumers away from dubious information. The Internet is a vast, unregulated medium. Information about hospice or end-of-life care can range from personal experience to local hospice promotion. According to Nash, most hospice information available on the Internet is good but unorganized.
"Most of what is out there are on-line pamphlets," Nash says "But there is some good information out there."
What separates the good sites from the mediocre ones is the organizations’ commitment level — the addition of new articles, attention to the length of time between updates, and the services they offer to visitors, such as chat rooms or hospice searches.
Become a better judge
So how can hospice care professionals discern the good Web sites from the not-so-good ones? Moore and Nash suggest using the following checklist:
Look for established hospices and organizations. Start with the "About Us" section. Find out how long the hospice has been in business and make a judgment in context with the information they are providing. You can’t go wrong with established organizations such as the National Hospice Organization. Look for sites that update information regularly. Web sites normally show the date they were last updated. There is no specific rule as to how often, Moore says, but the articles should reflect the latest available information. "There’s a lot of information on end-of-life issues, and things are ever-changing," she says. "They should keep up with them." The site should be monitored by someone with a clinical background. For example, Nash is a nurse by profession whose responsibility as Webmaster includes making sure the information presented is accurate. Look for links to other sites. This shows a willingness to share information and not operate in a vacuum, Moore says. Look for the hospice philosophy. Sites should promote hospice and clearly establish its philosophy and goals. Sites that do so not only educate people on what hospice is, they also dispel what it isn’t, including false notions that hospice speeds up the dying process.Still, to many hospice administrators, the Internet is a low priority compared with the everyday demands they face.
"Someone might ask, Why do you bother to dedicate so much time to your Hospice Hands Web site? Does anything concrete ever come out of it?’" Nash says. "The answer from Berlin, Germany, is a resounding, Yes.’"
(Editor’s note: Hospice of North Central Florida’s Hospice Hands World Wide Web site can be found at www.hospice-cares.com.)
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