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Huntington's Disease Caregiving

Late Stage Care
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Swallowing~Giving Medication
A Practical Guide: Nutrition and HD & Resources
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Nutrition and Huntington's Disease
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CLINICAL DEFINITIONS
Late-Stage Care
Comfort, dignity, and respect these are important words for caregivers to remember in ensuring quality of life during the late stage of Huntington's disease.
 
At this point in the disease process, people typically lose the ability to talk and walk and experience difficulties with eating. Families and care providers play a critical role in
making tough decisions that ultimately respect the persons end-of-life wishes and at the same time maintain the persons dignity and comfort.
Advance directives
 
Ideally, discussions about end-of-life issues should take place while the person with the disease still has the capacity to make decisions.
 
People with Huntington's have the legal right to limit or forgo medical or life-sustaining treatment, including the use of
mechanical ventilators, cardiopulmonary resuscitation, antibiotics, and artificial nutrition and hydration. These wishes
can be expressed through advance directives.
 
Two common forms of advance directives are a living will and a durable power of attorney for health care. A living will states the individuals choices for future medical care decisions. The durable power of attorney allows the person with Huntington's to designate a surrogate, usually a trusted family member, to make specific decisions about treatment on his or her behalf.
 
Family members should not equate the refusal or withdrawal of treatment, including treatment for life-threatening illnesses (infections, hemorrhaging, heart attacks, etc.) as euthanasia or assisted suicide. In fact, aggressive medical treatment may feel like torture to an individual who is in unfamiliar surroundings and does not understand the intentions of the care providers.
 
If there are no advance directives in place, families and care providers should try to make decisions consistent with what
they think the individuals wishes would have been. Typically, nursing homes and hospitals have ethics committees that can facilitate the decision-making process if there is a conflict between family members or with the care provider.
 
 
People with Huntington's may also refuse to eat and drink.   Such cases should be evaluated to make sure that they are not due to conditions, such as constipation, kidney failure, nausea, and fluid and electrolyte imbalance, that could be reversed with medications.
 
One of the more difficult decisions for families to make is whether or not to withhold nutrition and hydration in response to a patients refusal to eat or drink. Many families and care providers believe that it is appropriate to do everything in their power to get the person to eat or drink.
 
In older or cognitively impaired patients, the use of feeding tubes and intravenous (IV) hydration is often assumed to prolong life when in fact it could be lengthening the dying process. This is a very difficult and personal decision. 
 
The cognitive Huntington patients wishes should be revisted with them should a time for artificial feedings become necessary as their current quality of life may influence their final decision. 
 
Families or health care surrogates should remember that if these artificial means are used they may eventually be faced with the tough decision about whether or not to withdraw such treatment.
 
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
Resources
Advanced Stages of HD-Caregivers Handbook  Our Final Journey-Estate Planning