Caregivers’ burden grows with impending death
Education must address psychosocial aspects
Many terminally ill patients die at home with family members in attendance. As a result, family caregivers must learn about the physical, psychological, and spiritual aspects of the dying process at the same time they are struggling to come to terms with the situation themselves. At these times, education and support must be ongoing, with health care workers tailoring information to fit each family’s needs.
Time must be spent determining how much the family members know. They often have a lot of misinformation that must be corrected, says Susan Prather, RN, MA, nurse consultant for United Hospice Inc. in Lilburn, GA. For example, the caregiver may be reluctant to give the patient the pain medication he or she needs for fear that there won’t be anything to control the pain if it gets worse later. "A lot of effort must be put into re-education, because people pick up misinformation from neighbors and friends," she explains.
There are many psychosocial issues for the family to address. For example, patients are not only losing their lives; as they become sicker, they often lose their ability to do the things they love, such as a favorite hobby. They may have already had to give up their job, and they can no longer drive. "We try to find things that are purposeful they can do and feel a sense of accomplishment, such as organizing photos in a collection," says Jim Nash, RN, a hospice nurse and Webmaster at Hospice of North Central Florida in Gainesville.
Because patients lose control of so many aspects of their lives, they may become very demanding about the small details over which they still have some control. For example, the caregiver may set a glass on the table, and the patient will insist it should be placed someplace else. It is helpful for the caregiver to understand the motivation behind such demands.
Being a caregiver for a terminal patient is very challenging. This means respite time is critical for the family. Volunteers or other family members should be asked to give the caregivers a break by watching the patient for them. "It is easy for a caregiver’s world to shrink to the point where he or she is just caring for the person who is dying and there is no time or energy for anything else," says Nash.
As death becomes more imminent, the caregiver may not want to leave the patient’s bedside. At these times, volunteers can get groceries or take care of other daily tasks.
Volunteers also can help with the isolation the patient sometimes feels if friends no longer stop by because they feel uncomfortable around a person with a terminal illness, says Prather.
One of the most difficult parts of the education is preparing the caregiver for the actual dying process. "It is important for caregivers to know the signs and symptoms of approaching death so they will know if something is an emergency or is to be expected," says Nash. Preparation takes some of the anxiety out of the situation. (For more information on the signs and symptoms of approaching death, see Editor’s note at the end of this article.)
There also are comfort measures that patients can learn, says Nash. For example, people near death tend to sleep a lot and sometimes don’t even respond to stimuli. Yet they usually can still hear, and family members can speak softly and naturally to them and reassure them. Also, patients may keep their eyes open to the point of drying out unless the caregiver administers artificial tears, or they may keep their mouths open constantly, requiring the caregiver to learn about and administer mouth care.
Repetition is important when teaching about the signs and symptoms of dying, for it is a difficult topic for the family members, says Prather. It’s important to provide the information in several different ways. "We need to provide the information over and over, because people are at different stages of their acceptance of the illness," she explains.
More frequent visits from the visiting nurse near the time of death are important, because caregivers have a lot of questions and need more support, says Nash.
(Editor’s note: For a detailed description of the signs and symptoms of approaching death, visit the Hospice of North Central Florida’s Web site at www. hospice-cares.com.) n
For more information about education and support for family caregivers of terminally ill patients, contact:
• Jim Nash, RN, Webmaster, Hospice of North Central Florida, 4200 Northwest 90th Blvd., Gainesville, FL 32606. Telephone: (352) 378-2121. Fax: (352) 379-6291. E-mail: [email protected].
• Susan Prather, RN, MA, Nurse Consultant, United Hospice Incorporated, 3945 Lawrenceville Highway, Lilburn, GA 30047. Telephone: (770) 925-4788. Fax: (770) 925-0922. E-mail: [email protected].
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