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Hospice Care Isn't About Dying—It's About Fully Living

by Karen Haywood Queen / November 9th, 2014

When doctors told Angela Esposito's father that he had stage IV lung cancer and bone cancer, they never said he had only months left to live. Instead, surgeons put rods in his legs so he could walk—giving the family false hope that he would be OK. But he died less than two months after the diagnosis. He spent just one week in hospice, a type of care that treats the physical and mental needs of the terminally ill. "Whenever they said 'This is not curable, but it is treatable,' Daddy should have gone into hospice," says Esposito, who has been a hospice nurse for two years. "But how do you tell your father who has just been told he has this horrible illness that he needs to go to hospice? It sounds like you've given up. It sounds like you're saying 'You're dying, so let's put you in hospice so you can die.' It's a taboo subject."

Who is eligible?

Choosing hospice needn't mean giving up. In fact, a study published in 2007 in the Journal of Pain and Symptom Management reported that hospice patients live 29 days longer than similar patients who were not receiving hospice care. But nearly 36% of hospice patients received care for a week or less, according to the National Hospice and Palliative Care Organization's (NHPCO) 2012 fact sheet. Hospice isn't just for your last week of life. Patients are eligible for hospice when they have about six months left to live, says John Mastrojohn III, executive vice president and chief operating officer for the NHPCO, based in Alexandria, Va. Nearly 45% of all deaths in the United States were under the care of a hospice program, the NHPCO estimates, but the median length of service per patient in 2011 was 19.1 days, according to the NHPCO. Patients who are continuing to decline, even after six months, can remain in hospice care, says Mastrojohn.

What hospice provides

Hospice care helps manage the patient's pain and symptoms; assists the patient with the emotional, social, and spiritual aspects of dying; provides needed drugs, medical supplies, and equipment; coaches the family on how to care for the patient; delivers services such as speech and physical therapy; provides short-term respite care; and provides bereavement care and counseling to survivors, according to NHPO. Your hospice team likely will include doctors, nurses, spiritual counselors, social workers, bereavement counselors, home health aides, therapists, and volunteers.
Ask if the hospice offers additional services such as art therapy, music therapy, massage and pet therapy.
Although hospice doesn't provide aggressive treatment for terminal patients, hospice does offer such care on a case-by-case basis to relieve pain and symptoms, Mastrojohn says. In the case of Esposito's father, hospice arranged for palliative radiation that helped shrink the tumor and relieve pain as well as for treatment of elevated calcium levels that were causing confusion, she says. As a nurse, Esposito is familiar with hospice patients being treated for pneumonia and urinary tract infections to relieve pain.

Where hospice services are offered

One misconception is that hospice is a place, Mastrojohn says. Although there are hospice houses for inpatient care, hospice care most often is provided where the patient lives with 42% dying at home, 18% in a nursing home, and 7% in another residential facility. Beyond that, 26% die in a hospice inpatient facility and 7% die in an acute-care hospital, according to NHPCO.

Paying For hospice

Usually patients and their families receive hospice services at little or no out-of-pocket cost. Eighty-four percent of people receiving hospice care are covered by Medicare's hospice benefit, Mastrojohn says. Another 15% are covered by a hospice benefit in a private insurance plan, he says. Only a little more than 1% of patients don't have any of those benefits, and many hospices will provide charity care free of charge, he says.

Choosing hospice

The first criteria is obvious—does the hospice serve your geographic area, Mastrojohn says. Even small rural areas such as Esposito's home, Stanly County, N.C., population 60,576, offer more than one hospice.
Some counties may offer as many as 10 hospice choices while others may offer only one.
Some counties may offer as many as 10 hospice choices while others may offer only one, says Melissa D. Aldridge Ph.D., associate professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mt. Sinai Hospital in New York and lead author of a study comparing for-profit and nonprofit hospice status.

Evaluating quality

Next, ask about certification and accreditation. Most hospices are Medicare-certified, and also can choose to be accredited. National accrediting organizations are The Joint Commission, Community Health Accreditation, and the Accreditation Commission for Heath Care, Mastrojohn says. Although hospices aren't required to be accredited, "Having someone come in and be surveyed from the outside who is focused on quality is really important," he says. A majority of hospices conduct family surveys, Mastrojohn says. "Ask for their scores," he says. "See how previous patients and their families rated that service." Ask about the hospice's rate of disenrollment—those patients who left hospice care, Aldridge suggests. You also may want to evaluate for-profit versus not-for-profit hospice care, Aldridge says. For-profit hospices were more likely to disenroll patients prior to death, the study found. For-profit hospices also were more likely to serve patients in nursing homes and other facilities as opposed to the patient's own home, and they were three times as likely to exceed Medicare's annual reimbursement cap, the study found. On the other hand, for-profit hospices were more likely to report greater outreach to low-income and minority communities. Ask if the hospice offers additional services such as art therapy, music therapy, massage and pet therapy, say Aldridge and Mastrojohn. Some hospices have volunteer attorneys available, too, he says.
Although hospice doesn't provide aggressive treatment for terminal patients, hospice does offer such care on a case-by-case basis to relieve pain and symptoms.
If the patient is a veteran ask if the hospice is a We Honor Veterans Partner, committed and trained to working with the special needs of veterans. "As veterans are dying, they often want to talk about their war experience," Mastrojohn says. "Families can find it a challenge."

Tough conversations

For Esposito, it was difficult watching her dad suffer pain because her mother was worried he'd become addicted to pain meds. "That was Mama's big thing—she didn't want Daddy to die an addict," Esposito says. "Pain medications were made to relieve pain. He needed more pain relief. Cancer had eaten away the top of his femur, and they were giving him Tylenol." Food is often another area of disagreement. Family members who don't know better are concerned that the dying patient is starving to death, Mastrojohn and Esposito say. "People say 'I'll fix whatever he wants—he's got to eat,' Esposito says. "We know food is love. But the body is preparing for death. We teach families to offer food, but not force food." Forcing food and fluids the body doesn't want can cause problems such as food souring in the stomach, Esposito says. Giving fluids via IV can cause infection and cause fluid to end up in the lungs or cause swelling in the patient's legs, Mastrojohn and Esposito say. Patients can offer comfort by holding the patient's hand, wiping off the patient's face, or putting lip balm on dry lips, he says. "Family dynamics are complicated," Esposito says. "Even in the best, closest families, death is a stressor and can cause people to act in ways they wouldn't act." If she had it to do over, Esposito would get her dad into hospice care sooner. "That's the big thing people need to know," Esposito says. "You don't need to wait until the last minute. Hospice is about living, not dying. It's about living the last part of your life as comfortably as possible."

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