Palliative care aims to improve the quality of life of patients facing life-threatening illness, and relieve pain and other distressing symptoms. Palliative care addresses spiritual and psychological needs, and is intended to help patients live as fully as possible. Some describe palliative care as helping chronically ill people “live until they die.”

For people with Huntington’s disease, palliative care can be provided at any time during the illness. However, it is likely to become a greater focus as the person nears the end of life. Caregivers may ask their doctor for a referral to palliative care specialists. A hospice program is one way, but not the only method, of receiving palliative care.

Late stages of Huntington’s disease

As Huntington’s progresses, patients may show signs of dementia and lose their ability to walk, talk, eat or drink. A person in the late stages of the disease is likely to be confined to a wheelchair or bed.

The movement disorders that characterize Huntington’s may change over time. The patient is likely to become more rigid and may have difficulty changing positions voluntarily or controlling movement. Irregular, involuntary movements known as chorea may lessen or increase.

Medication may be prescribed to alleviate movement disorders, pain, and emotional distress. Infections, choking episodes, incontinence, and constipation are other symptoms frequently experienced in advanced stages of Huntington’s. A patient in the advanced stages of the disease may have severe difficulty swallowing and lose a significant amount of weight. 

Quality Of Life

Whether treatments will improve quality of life or may prolong suffering is an issue for caregivers to discuss with medical professionals. Ideally, a patient with Huntington’s disease will participate in advanced care planning while they can make informed decisions and communicate them to others. 

Hospice care

Hospice care is considered appropriate when a patient is expected to live six months or less. Hospice care may be provided on an inpatient basis or in one’s home.

The long-term nature of Huntington’s makes it difficult to determine when the end of life is near. Some common end-of-life symptoms include significant weight loss, episodes of fever, respiratory distress and sleeping or deep unresponsiveness for most of the day.