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End Stage Care Choices |
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by Betsy Murphy, FNP, CRNH Manager, Long Term Care Liaison Services Hospice of Northern Virginia All families struggle with making the right decisions for their loved one with advanced Alzheimer's disease. Without a road map to follow, each decision becomes agonizing. One of those decisions is whether or not to send the patient to the hospital. Many families do not realize that sending a patient to the hospital is optional, not mandatory. Some nursing homes and assisted living facilities send the patient to the hospital because they assume this is what the family would want. If the patient is living with their family, they are sometimes sent to the hospital because the family fears they are not taking good enough care of the patient. Weighing the benefits and burdens of care in the hospital before the need arises will make the decision easier for families. The course of Alzheimer's is predictable but the sequence of symptoms is not. Patients can become prone to infections in the lung and bladder; they can have difficulty swallowing and become dehydrated. Although these symptoms are expected, the absence of a plan as to how to treat them forces the decision to transfer to the hospital. It can be helpful to look at all the options before a physical change has occurred in order to make the best possible decision for the patient. The first step is to establish where the patient is in the disease process and what the goals of treatment are. If a goal is established to obtain the best possible comfort care for the patient, the questions should be asked, if the best place to give that care is in a hospital. What will the patient gain and what will they lose during the hospital stay? The reality is that most patients with late stage dementia lose ground while in the hospital. They may lose ground in three areas: nutrition, level of orientation, and vulnerability to infection. Dementia patients usually need assistance with feeding. In the hospital, they will have new caregivers that do not know their likes and dislikes and who have little time to attend to them. A recent study showed that all elderly patients lose weight during hospital stays. (JAMA, June 1999). In a study of 497 patients over the age of 65, 21% of those patients consumed less than 50% of the energy they needed to remain stable. Because 60% of all elderly patients are estimated to be malnourished on admission, the impact of a major weight loss can be severe. The dementia patient who is already malnourished and unable to communicate their preferences is particularly vulnerable. The human body, mind and spirit require a comfortable surrounding in order to heal. Transferring an acutely ill patient from a familiar to an unfamiliar environment causes them to become more confused and frightened. Many hospital employees do not understand about the disease with its inherent communication problems and effective communication is not established. There is an increased possibility that the patient will be put in restraints because they are misunderstood. These patients tend to deteriorate rapidly in situations where their needs are not met. The culture of the hospital is to "cure" patients. When a patient is sent to the hospital, the hospital assumes that the patient and family want the patient to receive whatever care is necessary for cure. In that culture, aggressive treatments and diagnostic testing becomes a reality. These treatments, which are sometimes painful, can increase the patient's sense of isolation and suffering. Finally, the patient is at a much higher risk for infection in a hospital. They may enter the hospital with one infection and return to the nursing facility more ill with multiple infections. Questions for the family to ask the patient's physician should include:
In the Northern Virginia Chapter Service Area, for more information about End Stage Care Choices, please contact the Chapter's telephone Helpline at (703) 359-4440 or 800-207-8679. Outside Northern Virginia, please contact your local Chapter.
Last updated: July 19, 1999
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