How Hospice Works

Working Through the Hospice Process

Dame Cicely Saunders Dame Cicely Saunders
Dame Cicely Saunders, the founder of hospice. Robert van den Berge/Sygma via Getty Images

Contrary to popular belief, a person doesn't necessarily require a referral to receive hospice care. However, a doctor must sign an attestation stating that the patient has an estimated six months or less to live. You also don't have to wait for your doctor to suggest hospice care for your loved one. You can bring it up to your doctor if necessary.

By electing to receive hospice benefits, patients effectively disengage from traditional insurance. "When folks say that they want to elect their Medicare hospice benefit they're saying, 'I want a treatment plan that is comfort oriented. I understand my disease is not curable. I have approximately six months or less to live,'" Mastrojohn says. You're not necessarily locked in place once you sign on the dotted line, however. The patient can unenroll from hospice at any time, for instance if a promising new therapy becomes available. "The hospice will not say you can't. The person elects and can revoke their hospice benefit."

The benefit doesn't end once the clock strikes six months, either. Patients are re-evaluated periodically to make sure that they're still hospice benefit-eligible. Occasionally, patients see improvement significant enough to warrant coming off hospice altogether. In Mastrojohn's experience as a former hospice nurse, some patients start to turn around once they're receiving the proper medication, personal care and food. Once all these services are provided through hospice care they sometimes get better," Mastrojohn says. "When they improve, and are no longer terminally ill, other plans are made for that patient in collaboration with the physician."

Another major change is that standard insurance is no longer in effect, so the hospital is not the place to go in an emergency. Instead, the hospice should be contacted directly (an emergency contact should be accessible 24 hours a day) to address pain or other issues. "They should be able to get there quickly and control it in the home or move into a facility," Mastrojohn says. So, instead of calling 911 or heading to the ER, you or your family member would call hospice. A nurse will come right to your home, no matter what time of day, to figure out the problem and take steps to eliminate the pain.