Hospice / Palliative Care: Lack of Awareness Continues to Challenge

By Tracy Hulett
As seen in Chicago Hospital News

Published November 2007

In an article published by the National Association of Social Workers, oncology social workers reported an overwhelmingly positive view of hospice philosophy and care. Yet, they referred fewer than 50% of their patients to hospice care. The chief reason cited for the low referral rate was resistance from patients’ families to discontinuing active treatment. One of the great challenges in providing hospice care is educating those who can most benefit from it - at a time when they are not interested in listening. One expert in senior services believes the time for education comes long before the crisis.

Linda Dolan, Director of Leisure Services at the Wheaton Park District, promotes early education for patrons and ’ their families. "We offer workshops that address many of the aspects of aging - from legal and insurance issues to health care issues like hospice. The workshops answer questions people don’t like to ask. As the population ages, we’re seeing a lot more interest from the children of our patrons in leaming about hospice. Most of them have a general idea, but are usually unaware of the resources available not just to the patient, but to family members as well."

When families have a lack of knowledge about hospice it results in shorter stays in hospice programs, which keeps patients and their families from receiving the full benefit of hospice team services. In 2004, according to the National Hospice and Palliative Care Organization, the average amount of time a patient was enrolled in hospice in the United States was 57 days. 35 percent of the patients died within one week of admission.

"I wish Dad had spent more time in hospice," recounts Nancy, whose father passed away in May. "He started hospice and eight days later he was gone. The nurses, chaplain and volunteers were wonderful, but we just didn’t start soon enough. It was almost as much of a shock learning what we missed out on as it was losing Dad so quickly. But how do you know something like that?"
Susan Levitt, Executive Director of CNS Home Health & Hospice in Carol Stream, says, "A number of our families have indicated they didn’t know enough about hospice before they were faced with a critical situation.

Now patients have access to palliative care programs as well. Its such a valuable option, but again, its just not something people know much about. That’s why we’ve begun presenting sessions on aging-related issues. We never want a patient or a family to be deprived of what palliative and hospice care have to offer simply because they aren’t aware of it."

"An employee is the session’s inspiration. As the only sibling local to her parents, she managed matters during her father’s extended illness and after his death. She said there was so much she didn’t know -~ then heard the same thing from friends with aging parents. She suggested we put something together as a public service."

The program, "Aging Parents: What You Need to Know," provides an organizational checklist for the adult children to discuss with parents including:
• Do they have an attorney?
• Do they have an accountant?
• What insurance do they have and where are the policies kept?
• Where do they keep track of medical information, physician phone numbers and prescriptions?

The program also covers matters unfamiliar to many, but vital when dealing with a serious illness. What is palliative care? If Mom needs it, how is it paid for? What are advance directives? What is a DNR and when is it implemented?

"We offer other programs, like fall prevention and safety in the home, managing grief, and cardiac health," says Levitt. "But we feel the Aging program will have a broad appeal because it answers so many questions - kind of an Aging 101."