If you’re caring for someone with late-stage Huntington’s disease, you probably don’t need us to explain the challenges that come with the disease. We recognize that what families need from us is clear information and practical support.
Our first step is listening to your concerns. Huntington’s has a complex mix of physical and emotional problems unique to each patient and family. That's why your needs guide our care.
Some families tell us they’re reluctant to ask for a hospice evaluation because it feels like giving up. Hospice is not about dying. It’s about reducing pain, anxiety and other symptoms so patients and families can focus on the best quality of life possible. Hospice also addresses the emotional and spiritual needs of patients, as well as family, who often need as much support as patients themselves.
Families dealing with Huntington’s should ask for a hospice or palliative care referral as early as possible. Hospice social workers can help you with an advance care directive, or living will. These are legal documents that specify what medical actions should be taken or withheld if a patient is no longer able to speak for themselves. Documenting preferences before a medical emergency can reduce stress later on.
An example is planning for swallowing problems common is late stages of Huntington’s disease. Swallowing often becomes so difficult that patients can’t eat enough to maintain their weight. Understanding the benefits and drawbacks of artificial feeding, and sharing your thoughts with medical providers, enables you get the medical treatments you want.
Hospice referrals for Huntington’s can be challenging because it's difficult to predict decline. Common end-of-life signals include significant weight loss, difficulty swallowing or breathing, recurrent aspiration pneumonia and uncontrolled pain. Staff at our locations are available to talk about eligibility requirements.
- Hospice eligibility for Huntington’s disease
- Huntington’s patients benefit from more hospice involvement (Huntington’s Disease News)
You can also talk to your doctor about palliative care. Palliative care is for people at any stage in their illness, while hospice is for patients with a life expectancy of six months or less. Both types of care are available at home, in nursing facilities or hospitals.
Your hospice team includes a doctor, nurses, social worker, counselor, chaplain, home health aide, and trained volunteers. They work with you and your doctors on a personalized care plan.
A study in the in the Journal of Pain and Symptom Management noted that pain was the symptom most troubling to patients. Hospice providers have specialized training to manage pain, especially for those who have difficulty communicating.
Other services from the hospice team
- Medicines and strategies to manage breathing and swallowing problems
- Controlling nausea
- Managing anxiety and difficult emotions
- Reducing incontinence or constipation issues
- Preventing pressure ulcers and other skin-related problems
- Inpatient respite care when family caregivers need relief
- Coordinating with nursing facilities if a loved one needs continuous care
- Emotional and spiritual support for patients and family
- Grief support for up to 13 months after the death of a loved one
Family caregivers who find meaning and purpose in their journey are healthier, happier and experience less burnout. Learn to step back and find your source of joy. The best caregivers are those who learn to care for themselves
Hospice social workers, chaplains and others support families through:
- Services that reduce caregiver burden and burnout
- A listening ear; backed up with practical resources
- Emotional and spiritual support
An evaluation is the first step for hospice or palliative care. Doctors typically recommend care, but you, your family or caregivers may request an evaluation. Call a local Compassus office to learn about referrals and care for advanced Huntington’s disease.