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November is hospice awareness month

MARIETTA — For all its inevitability, death is a difficult topic of discussion.

As a result, terminally ill people sometimes don’t know their end-of-life options. Only about half of eligible patients decide to take palliative or hospice care, and of those only 25 percent use the full benefit, according to spokespeople for Amedisys, the nation’s third-largest provider of hospice services.

November is national palliative and hospice care awareness month, and a group of representatives from Amedisys and the Memorial Health System sat down to discuss the services offered to Marietta-area residents.

Memorial and Amedisys have a joint agreement for provision of hospice care, and Memorial has a dedicated palliative care department headed by Dr. Holly Freed.

People in general don’t have a clear understanding of either discipline, Freed said.

“Palliative care provides quality of life for patients who have serious and life-limiting conditions,” she said.

“It offers counseling, from spiritual matters to financial concerns, all the problems involved in having a serious illness, along with appropriate medical care.”

It may be offered as an alternative to patients whose quality of life is being affected in a negative way by medical treatments that might not be effective as a cure or prolonging life. For those who are terminally ill, with six months or less to live, hospice is another option.

The notion of spending their final hours, days or even weeks under invasive and futile medical care horrifies most people. In addition to making end-of-life time more comfortable for both the patient and the family, palliative and hospice care can also have life-prolonging effects.

“Research show that patients do better, and cancer patients, for example, tend to live longer,” Freed said.

Maggie Haines, a clinical liaison for Amedisys, said on average cancer patients in terminal condition live 81 days longer under hospice and palliative care.

Yvette Young-Epling of Amedisys said it’s focused on the patient’s desires.

“It extends life when compared to aggressive medical treatment,” she said. “When given that option, we speak in terms of life, not death. We sit down with the patient and fill in thought bubbles, identify what matters most to them.”

That may not necessarily be a bucket-list exercise, she said, but some patients have things that have been life-long wishes or just something immediate that would make them happy.

“It might be a trip to Disneyland with the family,” Young-Epling said.

“One patient just wanted to see the newest Terminator movie at the theater and then have a meal at Wendy’s,” Haines said.

Bringing up the option of palliative care or hospice is a sensitive and sometimes difficult matter, Freed said.

“Doctors tend to be wildly optimistic about prognoses, especially if it’s for a patient with whom they have a long-term relationship,” she said. “The question they need to ask themselves is, would you be surprised if this patient died within the next year? Is the patient getting repeats of the same treatment and still exhibiting declining abilities? What are the risks and benefits of treatments, and are they aligned with the patient’s goals? The doctor needs to talk to them about resuscitation, the possibility of being on a ventilator — each patient needs to make their own decisions about that.

“We’re a medical culture of cure, but we need to want outcomes that are best for the patient, we have to have honest discussions with them.”

Those discussions are often difficult, she said.

“The topic includes a lot of emotions, and doctors have to develop a sense of how to approach people. It’s hard to have these conversations, it’s something no one wants to think about,” she said. “People respond in different ways, they can be sad, relieved, angry.”

Hospice care is 100 percent covered by Medicare, including medical supplies such as oxygen, and patients design their own care regimen.

“For 80 percent of patients, their No. 1 desire is not to die in pain, and pain control is something we take very seriously,” Young-Epling said. “Many worry about the circumstances of the surviving family members, and Medicare also provides benefits to cover bereavement counseling. There is a lot of empowerment for patients to design their own care, and we’re here to accompany them, not to guide them.”

The care is most often provided in the patient’s home or in an assisted living facility, she said, although the hospital also has options.

Hospice and palliative care are both underutilized and misunderstood.

“Fifty percent of the people who are eligible use them, and those who do use it for only 25 percent of the time they’re entitled to,” said Young-Epling.

Heidi Jackson, a clinical liaison for Amedisys, said she thinks people misunderstand the objective of hospice.

“The biggest misunderstanding is that in hospice we give people the medicine they need to die,” she said.

Haines said people in hospice sometimes become well enough to live longer.

“Some decline and plateau in condition,” she said. “We’ve had people in and out of hospice on and off for five years or more.”

Hospice and palliative care are decisions patients can make about the course of care, one option they can select to determine their immediate future.

“Prognostication is an art, not a science,” Young-Epling said. “I read in a book once that life is a story, and stories deserve good endings. We’ve had many, many good endings.”

Michael Kelly can be contacted at mkelly@mariettatimes.com.

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