Help Near the End of a Long Journey: Hospice and Huntington's Disease

Terry Warren watched his wife fight the difficult battle with Huntington’s disease. Now, he calls it “the world’s cruelest” disease. It’s easy to understand why Terry and many others feel this way. Imagine having Alzheimer’s, ALS and Parkinson’s disease all at the same time, for a period of 10 to 25 years. It’s a long journey for the patient and their loved ones. Hospice can bring comfort and relief near the end.

Huntington's Disease

Huntington’s disease is a genetic neurological disorder that causes nerve cells in the brain to break down over time. It is incurable and typically affects people between the ages of 30 and 50. During the disease progression, the Huntington’s patient experiences a steady deterioration in mental and physical capabilities, including:

• Forgetfulness and impaired judgment
• Mood swings and depression
• Noticeable changes in personality
• Involuntary movements (chorea) and unsteady gait
• Slurred speech
• Difficulty swallowing and significant weight loss.¹

In Huntington’s advanced stage, patients are totally dependent on others for their care. They can’t walk or communicate with their loved ones, although they are generally able to understand what is being said and who everyone is. Also, dysphagia develops so that swallowing becomes difficult, weight loss and poor nutritional status often follow, which predisposes the patient to aspiration pneumonia, other infections, malnutrition or other complications that bring about death.

Donate to Huntington's disease research: HDSA.org

The Family Disease

Everyone carries the gene associated with Huntington’s disease. Some people inherit the expansion of that gene, which is what causes the disease to develop. A child of a parent with Huntington’s has a 50/50 chance of carrying the expanded gene and can pass it along to their children. It is a rare condition; today, approximately 30,000 people in the United States have Huntington’s disease, with another 200,000 at risk of inheriting it.¹

How Can Hospice Help?

If you have a loved one with Huntington’s disease, hospice can help them retain the best quality of life possible and offer much-needed help and emotional support to you. Hospice provides an interdisciplinary team—physician, nurse, social worker, hospice aide, chaplain, volunteer and bereavement specialist—working on a daily basis to provide physical care and emotional and spiritual support to patients and their families. Hospice offers patients with Huntington’s disease:

• Pain control—Hospice specialists in pain management ensure patients are kept comfortable.
• Symptom control—Addressing difficulty breathing, difficulty swallowing, problems eating and drinking, difficulty communicating, pressure ulcers, anxiety and depression
• Coordinated care at every level—A plan of care is developed with the advice and consent of the patient’s neurologist or other physician. A team manager ensures that information flows between all physicians, the nurse, social worker and, at the patient’s request, clergy. In addition, hospice coordinates and supplies all medications, medical supplies and medical equipment related to Huntington’s disease to ensure the patient has everything they need.
• Temporary continuous care—When medically necessary, shifts of acute symptom management are brought to the home.
• Inpatient care—When symptoms can’t be managed at home, hospice provides 24-hour inpatient care until symptoms are under control and the patient can return home.
• Emotional and spiritual assistance—Hospice can offer emotional and spiritual support to help patients and families cope as the patient nears the end of life.

Your loved one’s neurologist or personal physician may recommend hospice when the time is right. But you can be your own advocate as well. You, your loved one or your physician may request an evaluation to see if hospice is an appropriate option for care.

¹http://hdsa.org/what-is-hd/