The final stages of a terminal illness are emotionally and physically devastating to both patients and caregivers. Hospice provides critical at-home care and eases the burden for the whole family as they transition toward death. Knowing when and how to set up hospice care requires much thought and planning.
1. Determine if hospice care is appropriate. When a life-limiting illness no longer responds to cure-oriented treatments, hospice care can provide comfort and support to patients and their families. The patient, family and/or physician can initiate a hospice information or referral call.
2. Know what expectations the hospice will have from the patient and the patient’s support system, and what kind of support and training program the hospice has for caregivers.
3. Research insurance coverage and payment options. Hospice care is a covered benefit under Medicare for patients with a prognosis of six months or less, and Medicaid covers hospice services in 41 states. Many private health-insurance policies and HMOs offer hospice coverage and benefits as well. Frequently, hospice expenses are less than conventional care expenses during the last six months of life.
4. Investigate the hospice. Find out if its accredited by a national organization like the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), Medicare certified, and certified by your state, if required. Also check it out with the Better Business Bureau (bbb.org) and/or the state attorney general’s office and ask for references.
5. Verify that the hospice’s policies and philosophy are a good fit with your family’s medical, financial, emotional and spiritual needs. Ask about specialized services, billing procedures, planof- care document, designated caregiver requirement, flexibility with balancing the family’s other responsibilities and the hospice’s procedure for resolving issues. Also pay attention to the general level of concern and competence you observe when communicating with hospice employees.
6. Ask for help. Family members, friends, co-workers, clergy and people who belong to community organizations can all pitch in. Some can help with planning, and others can help with carrying out those plans and giving support.
7. Talk to the hospice about the challenging role of caregiver and find out how they will support you. You will be tending to the patient’s constant physical demands, supporting his or her spiritual concerns and helping resolve unfinished business, in addition to dealing with health professionals, family and friends, and taking care of your own needs. Hospice can provide trained volunteers to offer respite care to give family members a break.
8. clear and firm about what you want when working with health professionals. Prepare lists of questions and concerns, and have all the information they may need ready when you call.
9. Get help as you and your loved one move into the final stages. Hospice offers a variety of bereavement and counseling services to families before and after a loved one’s death. In addition, publications like “Journeys,” a monthly newsletter to help in bereavement published by the Hospice Foundation of America, can help during this difficult time.