Pneumonia and urinary tract infections are common in the last stage of Huntington's.
The persons advance directive should indicate whether preventive measures such as pneumonia vaccines and antibiotics may be
used. If the Huntington's patient does not wish to receive these, care providers can use medications to reduce pain and make
the person more comfortable.
If the patient cannot talk, it is important to look for behavioral clues
such as depressive or psychotic symptoms, anxiety, and sleep and activity disturbances that may indicate he or she is experiencing
pain or discomfort.
Restraints may be used in long-term care settings and hospitals as a means
to control Huntington-related behavior problems such as agitation, and combativeness. They are also used to prevent patients
who are receiving artificial nutrition from pulling out the feeding tube.
Although restraints are intended to protect the safety of the patient, their
use can cause harm as well as jeopardize the individuals independence and dignity.
According to the Joint Commission on Accreditation of Health Care Organiza-
tions (JCAHO), an organization that evaluates and accredits
health care organizations, studies have demonstrated that effective programming can
eliminate the need for restraints.
Physical restraints restrict the persons ability to move and, as a result,
can cause incontinence, loss of muscle tone, pressure sores, depression, and decreased appetite.
People with Huntington's have the right to receive care without the use of
physical or chemical restraints that are not needed to treat a medical condition. Care providers have an obligation to try
alternatives to restraints, such as diversions for aggressive behavior or safe places to wander.
One unique care option is hospice. The underlying philosophy of hospice focuses
on quality and dignity by providing comfort, care, and support services for people with terminal illnesses and their families.
Hospice places an emphasis on maximizing patient comfort and providing counseling
and bereavement services to the family before and after their loved one dies.
To qualify for hospice benefits under Medicare, a physician must diagnosis
the person with Huntington's disease as having less than six months to live.
It is important for caregivers to seek support, particularly during this
difficult stage of the disease. HD Support Information lists support groups and help
lines by state that allow caregivers to deal with the emotions they may be experien-ing, including stress, grief, guilt,
anger, and depression.
Adapted From An Alzeheimer's Article