Most Americans don't know what hospice is, according to research conducted by the National Hospice Foundation. Nearly 75 percent don't know that hospice care can be provided at home and less than 10 percent know it provides pain relief for the terminally ill. Nearly 80 percent don't think of it as a choice for end-of-life care and 90 percent don't know that Medicare pays for it.
Here are some questions to ask when you're looking for a good hospice program:
- What services does hospice provide?
- What kind of support is available to the family/caregiver?
- What roles do the attending physician and the hospice physician play?
- What does the hospice volunteer do?
- How will hospice meet spiritual and emotional needs?
- How does hospice work to keep the patient comfortable?
- How are hospice services provided after hours?
- How and where does hospice provide short-term inpatient care?
- Can hospice be brought into a nursing home or long-term care facility?
Medicare and private insurance, including new long-term care policies, cover many, if not most, hospice services for anyone with a terminal illness, including cancer and non-cancer diseases. While you should check with your insurance provider for specifics on your coverage, here is a list of what Medicare covers:
- Physician services for the medical direction of the patient.
- Regular home visits by registered and licensed practical nurses.
- Home health-aide and homemaker services, such as dressing and bathing.
- Social work and counseling services.
- Chaplain services for the patient and loved ones, if desired.
- Medical equipment, such as hospital beds.
- Medical supplies, such as bandages and catheters.
- Drugs for symptom control and pain relief.
- Volunteer support to assist patients and loved ones.
- Physical therapy, speech therapy, occupational therapy, and dietary counseling.
Keep in mind that hospice care is intended to supplement care giving by families or other loved ones, so Medicare will not cover primary care giving. For those who don't have family or other loved ones to provide care, hospices will work with the patient to find the care they need to be safe at home or help them move to another setting. New long-term insurance policies also may cover these caregiving expenses when Medicare doesn't.
National Hospice and Palliative Care Organization, (703) 837-1500, http://www.nhpco.org: Offers a hospice database and provides statistical and educational material about hospice care. Or call the toll-free HelpLine at (800) 658-8898 to find a hospice near you.
National Hospice Foundation, 1-800-338-8619, http://www.hospiceinfo.org: Consumer-oriented site, with tips for communicating end-of-life wishes and guidelines for choosing a hospice program.
HospiceWeb, http://www.hospiceweb.com: Offers a message board, a list of frequently asked questions about hospice and links to numerous hospice-related sites throughout the world.
American Academy of Hospice and Palliative Medicine, (847) 375-4712, http://www.aahpm.org: Includes a selection of links to general hospice informational sites.
The Hospice and Palliative Nurses Association, http://www.hpna.org: Check on background and credentials for hospice nurses.
Hospice Foundation of America, (800) 854-3402, http://www.hospicefoundation.org: The site does not have a searchable database but does provide guidelines for choosing hospice, tips for dealing with grief and other consumer resources, such as a collection of hospice readings and Web links. Call the foundation to find a hospice near you.
American Hospice Foundation, (202) 223-0204, http://www.americanhospice.org: Includes a collection of articles with practical information for the dying or the grieving. Offers "Grief at School Training Guide & Video" to help teachers respond to grieving children and choose on-site training workshops.
"The Hospice Handbook: A Complete Guide," by Larry Beresford (Little and Brown, 1993; $14.95)
"Hospice: Practice, Pitfalls, and Promise," by Stephen Connor (Taylor & Francis, 1998; $28.95)
"All Kinds of Love: Experiencing Hospice," by Carolyn Jaffe and Carol Ehrlich (Baywood, 1997; $29.95)
"The Hospice Choice: In Pursuit of a Peaceful Death," by Marcia Lattanzi-Licht, John J. Mahoney and Galen Miller (Simon & Schuster, 1998; $12)
For more resources and contacts on end-of-life issues, go to www.findingourway.net.