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. Patients or 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.
Padding of furniture and fixtures can help prevent injuries from involuntary movements. Specialized wheelchairs with additional padding and adjustable positions are available to improve safety and comfort. These measures may also reduce the risk of skin breakdown.
Medication may be prescribed to alleviate movement disorders, pain, and emotional distress. Stronger pain medicine may be needed over time.
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. A feeding tube may be considered.
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. The person can spell out their wishes regarding issues such as hospitalization, resuscitation, use of a feeding tube, and organ donation for research.
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.
Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.