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The challenges of caring for the dying at home are well-known — caregivers overwhelmed by the emotional burden of watching a loved one die, inundated by the responsibilities of meeting their everyday needs and preparing them for the inevitable.
The problem is that most caregivers are ill-prepared for the task. Because death is a subject not often talked about, family members of dying patients aren’t aware of their loved ones wishes or how to spot the telltale signs that death is near. The harsh reality is that most are unprepared for the challenges of caregiving.
"Families need to know that they have options," says Audrey Cochran, MSN, PHN, CNS, RN, CS, CCN, a clinical specialist in gerontological nursing. As a way to address the lack of information available to dying patients and their caregivers, Cochran teaches a course at Bakersfield (CA) Community College called "Dying at Home." The three-hour course helps terminally ill people and their families prepare for death in the home. Through videotapes and guest speakers, Cochran shows participants what to expect and steers people away from assisted suicide.
"I try to affirm that death is another part in the process of life," she says. Her class covers:
• societal attitudes about death;
• understanding depression and malnutrition, and spotting true signs of death;
• physical changes that occur just prior to death;
• living wills and durable power of attorney;
• making funeral arrangements;
• avoiding calling 911 when the patient is close to dying;
• spiritual and emotional support.
Unfortunately, Cochran says, her class is never well-attended. She blames the lack of attendance on two factors: Society’s attitudes toward death prevents people from talking about it, and her lack of funds to publicize the class. "In theory, it’s a great idea, but without publicity, people won’t come," she says. But she believes hospices should try to do similar classes in their own communities because they have the resources and experts.
Studies of caregivers certainly point to their need for information. A recent study in New York City illustrated the challenges caregivers face. Approximately one million people in New York City are family caregivers, and most have received little or no training from health care professionals to provide the complex care needed.
Researchers conducted a random telephone survey of New York City caregivers, which was representative of the city’s overall population. 7The survey found that nearly 60% of caregivers reported that they received no training from health care professionals for essential care responsibilities, such as bathing, feeding, or moving a patient from bed to a chair. While those tasks may appear simple, they can be extremely difficult to perform when a patient is ill or disabled.
The study was funded by the United Hospital Fund and the Visiting Nurse Service (VNS) of New York. In July, the fund, in partnership with VNS, published the findings in a special report, A Survey of Family Caregivers in New York City: Findings and Implications for the Health Care System.