Hospice: What You Need to Know

Frank remembers that when he arrived at his parents’ house with his kids, his mother was in a coma in a hospice-supplied hospital bed. “I talked with her, telling her I was back,” he says. “I held her hand, told her a few things about what was going on with the grandkids, and so on. She did not open her eyes or otherwise respond. I honestly can’t recall if I brought my kids into the room that night to see her; I think I did, and told her they were there with me. Of course she was not able to react.” Frank’s mother died in her sleep that night. “I have always strongly believed that sheer force of will kept her alive,” he says, “until she knew that all of her children, and all of her grandchildren, were in the house. She had always been like that: She would stay awake until we were home safely from dates or trips, and only then would she let down her guard. I’m sure that’s what happened when she died.”

Adapted from Caring for Your Parents

When people hear the word hospice, they may become frightened. That's because there are many myths and misconceptions about what hospice is and what it can do for people who are nearing the end of thier lives.

As our population ages, the need for hospice services grows. So too does the need for a better understanding of it. This article introduces you to hospice and shows you how it may help you and your loved ones during life's final journey.

What Is Hospice Care? It’s a holistic approach to caring for people who are terminally ill. Hospice involves a team of specially trained professionals, available 24 hours a day, who provide expert medical attention, pain management, and emotional and spiritual support tailored to the individual’s needs and wishes. Hospice doesn’t cure, it cares. The hospice team also provides compassion and support to the patient’s grieving loved ones during the illness and beyond.

Introduced in England in the 1960s, the hospice philosophy upends old stigmas and treats death as a natural part of life. It does not prolong suffering, nor does it hasten the end. Hospice simply allows nature to take its course, with a sole focus on living life to its fullest in the final days.

Take the Hospice: What to Ask checklist with you as you compare different hospice programs.

Who Can Receive It? Anyone, regardless of illness, culture, age, gender, or financial status. A medical professional must give the individual a prognosis of six months or less. The individual must certify that he or she doesn’t wish to pursue curative treatment.

How Does It Work? The medical professional makes a referral to hospice. Then, members of the hospice staff will come and conduct an assessment of the patient’s overall needs as well as establish a care team. Along with the primary caregiver (usually a member of the family), the hospice team and the patient will outline an appropriate care plan.

From the moment a patient enters into hospice care, he or she may access a wide range of services, such as:

• Physician services
• Regular home visits by registered and licensed practical nurses
• Home health aides to assist in activities of daily living, such as dressing and bathing
• Social work and counseling services
• Medical equipment, such as hospital beds and oxygen
• Medical supplies, such as bandages and catheters
• Pain management and symptom control
• Volunteer support to assist exhausted caregivers and family members
• Specialized services, such as nutrition counseling and physical, speech, and occupational therapy

Where Do I Find Hospice Care? You don’t go anywhere—hospice comes to you. Whether you are in a nursing home, hospice facility, hospital, or in your own home, hospice professionals will provide services wherever you are most comfortable. This flexibility anchors the hospice mission and lets patients live their lives as they wish during this difficult time. Your physician and other medical professionals will know of hospice programs in your community. Two other resources are the National Hospice and Palliative Care Organization (703-837-1500) and the Hospice Foundation of America (800-854- 3402). Both organizations have databases of hospice programs located throughout the United States to make your search easier.

How Do I Pay for It? Medicare usually pays. Medicaid pays in 43 states. Many other types of health plans, including Health Maintenance Organizations (HMOs) and Preferred Provider Organizations (PPOs), cover the costs of hospice care. For patients who do not have insurance and do not qualify for Medicare/Medicaid, many hospice programs will offer their services free of charge.

Are All Hospices Alike? Not quite, but similar. Each hospice program has its own characteristics and strengths that set it apart from others. All adhere to the core value of bringing comfort to the terminally ill. It’s important to find out all you can about a hospice program you’re considering.

Who Regulates It? Federal, state, and professional organizations evaluate them. Ongoing surveys ensure that hospice programs meet the standards developed by the National Hospice and Palliative Care Organization. The state licenses and Medicare certifies all hospice services.

What Makes Hospice Unique? It addresses all the needs of the dying patient, including physical, emotional, and spiritual concerns. Moreover, it provides support to family members and friends through bereavement counseling during and following the illness.

Some of this material appears in slightly different form in Caring For Your Parents: The Complete AARP Guide.

© 2003, 2004, 2007 AARP. Reprinting by permission only.