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Understanding the benefits of hospice care
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According to the National Hospice and Palliative Care Organization (NHPCO), 60% of people who receive hospice care receive services at home, but it can also be delivered in hospice-specific facilities, hospitals, or long-term care facilities. Hospice, however, is not a place; it’s a concept of care.
“Many people think of hospice as the end of life, but it is in fact a way to continue your life in the time you have left,” says Greg Lomax, director of sales development for Erickson Living Health Services.
Hospice is changing
An NHPCO survey shows that the number of people receiving hospice services has risen from about 1.2 million in 2008 to 1.5 million in 2012. “More people are aware of hospice than in previous years,” says Tracey Nauer, B.S.N., R.N., director of home care, hospice and palliative care for Akron General Visiting Nurse Service in Akron, Ohio.
Hospice can be used for any life-limiting illness with a prognosis of six months or less. It isn’t only for people with cancer. In 2012, about 63% of hospice patients had a diagnosis other than cancer. “Patients have terminal illnesses such as end-stage heart disease, strokes, kidney disease, and lung disorders.” Nauer says. “Advanced dementia-related illness in particular is one area where the use of hospice is growing.”
“Hospice is as much for family and loved ones as it is for the patients,” Lomax explains. “Erickson Living’s programs, for example, provide bereavement support for loved ones up to 13 months after the patient has passed.”
“Hospice can make the dying process less stressful for everyone,” Nauer says. “We help patients and families resolve their main concerns. Patients can leave this world knowing that they’ve left all of their affairs in order.
“Some people don’t have any physical pain,” Nauer continues. “They have psychosocial or spiritual pain, and we have someone available to meet whatever needs people have.”
A hospice team typically consists of physicians; nurses; nursing assistants; physical, occupational, and speech therapy social workers; chaplains; bereavement specialists; and volunteers.
Myths about hospice
Although more people are aware of hospice, some misunderstand the goals of these programs.
For instance, although pain control is often a main concern, making someone comfortable does not necessarily mean sedating them to the point that they can’t interact with family and loved ones. “There are a variety of medication regimens that can be used for people in pain,” says Scott Vouri, Pharm.D., B.C.P.S., C.G.P., assistant professor of pharmacy practice at St. Louis College of Pharmacy in St. Louis, Mo. “Opioids, which many people are concerned about, come in a variety of potencies and they do not all act the same in your body.”
Your doctor can work closely with a pharmacist to develop a pain control plan. “Medications can be started at low doses and increased gradually to minimize the chance of oversedation,” Vouri explains.
“In hospice, we don’t want people to take more medication,” Nauer says. “We want to eliminate any that are not necessary or that interact negatively with others.”
To be eligible for hospice services, a doctor must certify that a patient has six months or less to live. But six months is only an estimate. “If someone lives longer, they don’t have to leave the program,” Nauer says. “There have even been people who actually become better and are no longer considered terminally ill.”
Many people think once someone enters hospice that they cannot leave the program if they change their mind. “That’s not the case,” Lomax says. “People may leave hospice care for a number of reasons, including deciding to seek a cure for their disease. Everyone has to accept and respect the patient’s wishes.”
Another myth is that you must have a “do not resuscitate” order to begin hospice, and that you have to give up your regular doctor. Neither of these is true.
Deciding to have hospice care
Preparing for hospice means making plans long before you are faced with a terminal diagnosis. That’s why advance directives are necessary. “Advance directives are essential so that families know if their loved ones would want hospice care if faced with that situation,” Nauer says.
You don’t have to be on death’s door to start hospice. “A 2008 poll of hospice patients showed that about 99% of them wished they had started hospice sooner so they could make full use of the services,” Nauer explains. “They want to be able to participate in all decisions and plan their care. Hospice is about quality of life, not quantity. Patients and families need comprehensive physical, psychosocial, and spiritual care as they cope with a life-limiting illness.”