Home hospice care for ALS patients
Some ALS patients wish to use hospice programs and/or home care services.
Hospice is a specialized system of care for terminally ill patients in the final
stages of their disease. It emphasizes the management of pain and other symptoms
while providing care for the family as well. Care is provided by a team of health
care workers, including physicians, nurses, social workers or therapists, and/or
home health aides. Hospice care can often be provided in the patient’s home.
Home care refers to the delivery of medical and community services to an individual's
home. Home care can meet many needs, from help with household chores and personal
care (dressing, feeding, bathing) to nursing care and respiratory, physical, occupational,
or speech therapy (see Therapies).
Many home care agencies and hospice programs are available throughout the country.
The services they provide and their sponsorship may vary. Before choosing a home
care/hospice program:
- Consult state agencies or local advocacy groups
- Ask for references from hospitals, physicians, state, and community agencies.
- Check to see if the program is licensed or certified by the state for payment by
Medicare or Medicaid.
- Check private health insurance policies to determine home care/hospice coverage.
- Ask the provider for a written statement describing services, eligibility requirements,
fees, and funding sources.
The following associations and organizations may assist you in determining which
program is right for you.
National Association for Home Care & Hospice (NAHC)
National Association for Home Care and Hospice (NAHC) is the largest and most respected
professional association representing the interests of Americans who need home care
(including acute, long-term, and terminal care) and the caregivers who provide them
with in-home health and supportive services. NAHC is the nation's largest trade
association representing the interests and concerns of home care agencies, hospices,
home care aide organizations, and medical equipment suppliers. Simply put, NAHC
is the one organization dedicated to making home care and hospice providers' lives
easier. NAHC develops and promotes high standards of patient care in home care services.
Individuals seeking approved home care agencies in their area may call NAHC for
assistance and referral.
228 7th Street, SE
Washington, DC 20003
Phone: (202) 547-7424
Fax: (202) 547-3540
www.nahc.org
The National Hospice and Palliative Care Organization (NHPC)
The goal of the National Hospice and Palliative Care Organization (NHPCO) is to
lead and mobilize social change for improved care at the end of life. The NHPCO
offers information and referral to hospice programs in the United States through
a toll-free hospice helpline. Hospice services differ from program to program, so
it is important to make sure that the agency you choose provides the services you
need.
1731 King Street, Suite 100
Alexandria, VA 22314
Phone: (703) 837-1500
Toll Free HelpLine: (800) 658-8898
Fax: (703) 837-1233
www.nhpco.org
Eldercare Locator
The Eldercare Locator is a public service of the U.S. Administration on Aging and
is administered in partnership with the National Association of Area Agencies on
Aging and the National Association of State Units on Aging.
Established in 1991, the Eldercare Locator links those who need assistance with
state and local area agencies on aging and community-based organizations that serve
older adults and their caregivers. Whether an older person needs help with services
such as meals, home care or transportation, or a caregiver needs training and education
or a well-deserved break from caregiving responsibilities, the Eldercare Locator
is there to point that person in the right direction.
Just one phone call or Web site visit provides an instant connection to resources
that enable older persons to live independently in their communities.
You can find the information resources you need by calling toll-free at 1-800-677-1116
weekdays, 9:00 a.m. to 8:00 p.m. EST and speaking to an Eldercare Locator information
specialist. Or you can log on their Web site.
Phone: 1-800-677-1116 Monday through Friday 9:00 AM to 8:00 PM (ET)
www.eldercare.gov/Eldercare.NET/Public/Index.aspx