End-of-Life Care Can Help Patients and Families
Hospice care helps terminally ill patients prepare for death, treating their symptoms and pain, and preparing them - and their families - for the end.
Patients maintain their dignity and some semblance of control over their life. Their families receive counseling to help them come to terms with their impending loss.
It is humane. It is caring. It is thoughtful.
Why, then, do so few Americans chose to receive hospice care, even though Medicare covers the expense?
A study published in the New England Journal of Medicine found that only one-third of Americans die under the care of hospice, despite hospice being essentially free of charge.
Dr. Donald Schumacher, president of the National Hospice and Palliative Care Organization, says those who avail themselves of hospice care often are not getting the full benefit of it.
"They hold off the ultimate [decision] until they finally have to face it," says Dr. Schumacher. "And when we speak to families, the question we hear over and over again, is, 'Why didn't we come into hospice sooner?'"
Currently, there are more than 3,500 hospices in the US, and more are being built every year, says Dr. Schumacher.
"Approximately 500 new hospice licenses were issued over the past two years," he says.
Hospice care is end-of-life care provided by health professionals and volunteers. The hospice plan provides medical, psychological, and spiritual support, the goal of which is to help people who are dying experience peace, comfort, and dignity.
Caregivers control pain and other symptoms as much as possible, so a person can remain as alert and comfortable as possible.
But hospice also focuses on the family members as well, helping them deal with the reality of death, says Carol Spence, director of research for the National Hospice and Palliative Care Organization.
"We outright make the patient's family our unit of care, so there's a lot of attention given to the family caregivers, including bereavement care following the death of the patient," she says.
Usually, patients are given hospice care when they are expected to live six months or less. Hospice care can take place at their home or in a hospice center. Seeing the value of the care, hospitals and nursing facilities also are opening hospice units to help the dying.
Part of the difficulty in choosing to use a hospice can be how hard it is to really know how much time a person has left, says Spence.
"It's difficult in general to come up with an accurate picture of disease projections," notes Spence. "People are living with chronic illnesses that will have an inevitable downward course, but knowing precisely when death will approach is not an easy thing.
"Bringing hospice in doesn't mean they're going to die tomorrow," continues Spence. "It means a better quality of life for whatever amount of time you have left, whether it's a week or a month or six months."
Another possible reason for people failing to use hospice can be found in American attitudes toward dying - going to hospice can seem the equivalent of "failing" or "giving up," she says.
"Our American culture is death-averse," says Spence. "The medical community and the general population, the attitude is shown in the metaphors used, whatever the disease you have - 'I'm going to fight it, I'm going to beat it.' "
There is also some misunderstanding over who can utilize hospice care, with many people believing it is mainly for those dying of cancer.
In fact, about 40 percent of US hospice admissions are for patients suffering from some other life-ending disease, such as end-stage heart disease, dementia, lung disease, or stroke, according to the National Hospice and Palliative Care Organization.
The misunderstandings also involve the cost of care. Many people believe hospice is too expensive or out of their price range, even though Medicare or private insurance covers the full cost of hospice care.
Despite all this, the number of hospices and the number of people turning to them are expected to grow as baby boomers enter retirement age and begin facing their own mortality, says Dr. Schumacher.
"We're as much a part of this death-denying culture as anyone, but we are consumers, and we look for alternatives," he says. "I think in the long run, we will be a group who will choose this option much sooner."
Always consult your physician for more information.
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Hospice care, unlike home health care, provides treatment to manage pain and symptoms associated with a terminal illness.
In addition, hospice care gives support - emotionally, spiritually, and socially to the patient and the family.
The goal of hospice is to provide comfort and care, not "cure" the illness or disease, like home health care.
Types of hospice care services provided depend on the patient's needs and preferences.
Services may include:
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nursing care
In consultation with the physician, a registered nurse will set up a plan of care. Nursing care may involve administering medication, monitoring the condition of the patient, controlling pain, and providing other health support.
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medical social services
Medical social workers provide various services to the patient, including counseling and locating community resources to help the patient and his or her family. Some social workers are also the patient's case manager when the patient's medical condition is very complex and requires coordination of many services.
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physician services
The physician plays an important role in determining the plan of care with the hospice care team.
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spiritual services
Depending on the patient's religious or spiritual beliefs, hospice care can include support from clergy or other spiritual counselors for the patient and the family.
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home care aide or homemaker services
Home health aides can help the patient with his or her basic personal needs such as getting out of bed, walking, bathing, and dressing. Some aides have received specialized training to assist with more specialized care under supervision of a nurse. A homemaker or attendant can maintain the household with meal preparation, laundry, grocery shopping, and other housekeeping chores.
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24-hour care or on-call care
Hospice care teams are usually available 24 hours a day, seven days a week. Visits or phone consultations can often be made any time of day.
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hospice inpatient care
At times, it may become necessary to move the hospice patient from the home to a hospital or other care facility. The hospice can arrange this care and then resume hospice care when appropriate.
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volunteer care
Volunteers are often part of hospice care teams, providing services ranging from companionship to carpooling. Volunteers often fill in the gaps for families dealing with a terminal illness and provide support for both the patient and the family.
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physical, occupational, and/or speech therapy
As a terminal illness progresses, the patient may lose his or her ability to accomplish basic daily tasks such as dressing or feeding. Physical, occupational, and/or speech therapists can work with the patient to find new ways to accomplish lost functions.
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respite care
Caring for a terminally ill patient 24 hours a day can be exhausting for a family. Respite care gives the family a much-needed break by arranging for a brief in-patient stay for the patient, or extra services in the home.
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bereavement support
Care for the family does not end with the death of a patient. The hospice care team works with the surviving family members to help them cope with the grieving process. Bereavement support may include counseling, support groups, or medical referrals.
Always consult your physician for more information. |
