Hospice Care for CJD Patients
What is hospice care?
Hospice care provides palliative care to relieve suffering and improve the quality of life for people who are suspected to live for less than six months. People with CJD often qualify for hospice due to the rapid disease course. Like palliative care, hospice care can be provided at home, an assisted living facility, a nursing facility or a hospital.
Choosing a hospice care provider
Finding the right provider does not have to be difficult. As soon as CJD is diagnosed, you or your medical team should initiate a hospice information/referral call or visit. As a first step, create a written assessment of your situation (see Planning Care for Someone with CJD) to help you determine what services you will need. Your medical team and family can help complete this assessment. Once you have an idea of what you will need, ask your medical team for specific recommendations or use the directories in the Resources section below to find providers in your area.
Next, the local hospice workers will meet with the doctor, patient and family to discuss available services and expectations and to develop a plan of care designed specifically for your loved one tailored to the family needs.
You may want to ask questions about insurance plans and payment requirements.
- Ask what expectations the hospice will have from the patient and the patient's support system.
- Ask what kind of support and training program the hospice has for caregivers.
- Ask about bereavement support programs.
Hospice care is a covered benefit under Medicare for patients with a prognosis of six months or less. Medicaid covers hospice services in most states. Many private health insurance policies and HMOs offer hospice coverage and benefits. Hospice services are also covered under TRICARE, the Department of Defense's health care program for members of the uniformed services, their families and survivors. Frequently, hospice expenses are less than conventional care expenses during the last six months of life.
- End of Life Issues: Hospice Care—articles from the National Caregivers Library to help you understand hospice care and find the right service for your loved one.
- Questions about Hospice Care (PDF)—a checklist of questions to ask as you try to find the right hospice service for your loved one.
- UCSF Department of Medicine Palliative Care Service—UCSF's Palliative Care Service provides interdisciplinary consultation for patients with serious illness, at the request of an attending physician, focused on expert symptom control, clear communication about goals of care and treatment decisions, and referral to community resources such as hospice.
- Hospice Foundation of America—a site that offers testimonials, educational programs, videos, downloadable fact sheets about end-of-life care and a hospice directory of providers in the US and Canada.
- HospiceNet—a website for patients and families facing life-threatening illnesses.
- National Hospice and Palliative Care Organization—an organization is committed to improving end of life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones.
- American Academy of Hospice and Palliative Medicine—a professional organization for healthcare providers dedicated to expanding access of patients and families to high quality palliative care and advancing the discipline of Hospice and Palliative Medicine through professional education, support, research and public policy.
- Hospice and Palliative Nurses Association (HPNA)—a professional nursing organization dedicated to promoting excellence in hospice and palliative nursing care.