Focus on dying – Making choices

By Todd Cohen

CHARLOTTE, N.C. — A recent PBS special, Time magazine cover story and hearing in Congress have spurred a national debate about dying.

That’s encouraging news for Hospice at Charlotte, which for 22 years has waged a local campaign in a national struggle to increase awareness about the hard work of making their final days easier for dying patients and their families.

Confronting dying is a tough challenge in a culture that celebrates youth and health. Americans don’t like to deal with death, and our health-care system is geared to keeping terminally ill people alive, not providing end-of-life care that aims to relieve their pain and their family’s suffering.

So to do its job, Hospice tries to get the word out that people have choices about the kind of care that’s available when they’re dying.

And faced with limited support by government and the health-care and insurance industries for its services, Hospice aims to deliver the best care it can in the short time it has to work with patients.

“The work to be done has to do with having the patient feel as well as possible so that the patient and family can experience the end of life in such a way that’s meaningful to them,” says Sharon Dixon, Hospice’s senior vice president for clinical services.

Meaningful experiences for dying people, she says, can range from reconnecting with family members and coming to terms with spiritual issues to dealing with property and writing wills.

“But the bottom line is that people have to feel like doing these things,” says Dixon, the first nurse that Hospice at Charlotte hired in 1978. “Their symptoms have to be well-enough controlled so they can have interactions with their loved ones and experience whatever experiences are important for them.”

Funded mainly through Medicare reimbursements and private insurance, Hospice at Charlotte on a typical day serves 225 patients and their families in a nine-county area.

With offices in Charlotte, Davidson and Lincoln County, Hospice workers and volunteers visit patients in their homes, nursing homes and other locations.

Hospice teams – including a nurse, social worker, in-home aide, grief counselor, chaplain and volunteers – deliver services that range from administering medicine, physical care and grief counseling to helping with financial planning, cooking for patients and simply spending time with them.

One of Hospice’s biggest challenges is to raise awareness among patients, health-care providers and insurers about end-of-life care – known as “palliative” or comfort care — as an important option for dying patients.

Another big challenge, says Dixon, is helping patients prepare for death in a period of time that is too short.

People tend to wait until the end is near before entering hospice programs, she says, both because of a lack of awareness about hospice and because many people interpret Medicare rules to mean they will get coverage for no more than six months.

“So we need to adjust how we provide care to be able to do it as well as possible for someone who’s under care for two days, as well as someone who’s under care for two months,” says Dixon.

For patients who are expected to die within a matter of days, for example, Hospice is assigning a grief counselor to work with the family as soon as a patient signs up, instead of waiting until the patient has died.

Hospice also is freeing its nurses from some paperwork so they can devote more time to meeting patients’ needs.

Financing its work also is a challenge for Hospice, which has increased its annual fundraising to $1 million from $100,000 in the past eight years.

During that time, the average number of patients under care at any given time has more than doubled.

 “The agency has grown by leaps and bounds,” says Susan Ehrman, director of development. “Our development work reflects that.”

While the bulk of private funds are in the form of gifts made in memory of people who have died, as well as income from special events and direct-mail appeals, Hospice increasingly is focusing on planned gifts typically made through wills or estate plans.

Hospice, for example, has created an estate planning advisory council. Chaired by John Giannuzzi, a Hospice board member and partner at CPA firm Arthur Andersen, the group has developed a marketing plan rooted in raising awareness about the organization.

The main focus will be on people who have had a loved one die under Hospice’ care.

“They are the people who know first-hand the value of what we’ve done,” says Ehrman. “They are the ones who are most invested in making sure we continue to do what we do.”

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