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Palliative Care

Introduction
Supportive Care
Hospice Care
Available Hospice Care Services
How to select a program?
Care over Cure

• Affirm life and regard dying as a normal process
• Provide relief from pain and other distressing symptoms
• Integrate the psychological and spiritual aspects of patient care
• Offer a support system to help patients live as actively as possible until death
• Offer a support system to help the family cope during the patient’s illness and in their own bereavement

Supportive care should be fully integrated with diagnosis and treatment. It encompasses:

• Self help and support
• User involvement
• Information giving
• Psychological support
• Symptom control
• Social support
• Rehabilitation
• Complementary therapies
• Spiritual support
• End of life and bereavement care

Until the 20th century, most people spent their last days at home, surrounded, cared for, and comforted by family and friends. That tradition faded as hospitals became places of healing in many Western countries. Hospice care began in England as an inpatient facility providing care and comfort for the dying. In the United States, people usually receive hospice care at home, since most Americans prefer to spend their final days at home.

With hospice care, instead of spending your last weeks or months in a hospital, you're with loved ones in the home or a homelike setting. Although 90 percent of American hospice care is provided at home, hospice is available wherever you actually live, including nursing homes or assisted-living residences. Some residential hospices designed specifically for hospice care also exist.

Many people receiving hospice care have cancer, but hospice is available for people with any terminal illness such as heart disease, dementia, chronic obstructive pulmonary disease or any other condition.

Hospice care services offer a multidisciplinary team of professionals that work to maximize comfort for the terminally ill person and to help support the family members and loved ones. A hospice care team consists of:

• Doctors. Both your loved one's primary care doctor and the hospice's medical director oversee his or her care. The primary care doctor remains the main doctor, but the hospice medical director often has added expertise in symptom management and end-of-life care that can supplement the care provided by the primary doctor.
• Nurses. Nurses come to your loved one's home or other care setting for regular evaluations and report back to your loved one's doctors. Nurses also provide help and support for family members and friends. They can address any concerns you have about end-of-life issues and symptom management. How often nurses visit depends on how much care your loved one needs. Nurses are available at all times for emergency visits in case a change or crisis develops. They can also offer support and guidance at the time of death.
• Home health aides. Home health aides and homemaker services can assist you in caring for your loved one. Home health aides provide extra support for routine care, such as dressing, bathing and eating.
• Spiritual counselors. Chaplains, priests, lay ministers or other spiritual counselors are available to your loved one and his or her family. Many people in hospice care have connections to some spiritual services in their community, but the hospice can provide additional services, if desired.
• Social workers. Social workers provide counseling and support. They can also help you sort out insurance and other financial concerns.
• Volunteers. Trained hospice volunteers provide a variety of services, such as staying with your loved one while you run errands, providing transportation assistanc or juset being a companion by playing cards with your loved one or reading to him or her.
• Bereavement counselors. Trained bereavement counselors offer support and guidance for your loved one's family during and after his or her death. Bereavement counselors continue to provide support for up to a year after your loved one's death.

While the majority of people using hospice care receive care at home, sometimes it's necessary to be admitted to the hospital. For instance, anytime a symptom can't be managed by the hospice care team in the home setting, your loved one may need to be temporarily admitted to the hospital. Also, your loved one can be admitted to the hospital for up to five days in order to give his or her caregiver a rest from the stress of caregiving. This is called respite care.

Most palliative care programs are run by nonprofit, independent organizations. Some are affiliated with hospitals, nursing homes or home health care agencies, and some are for-profit organizations.

You can learn about existing hospice programs from doctors, nurses, social workers and your local or state office on aging. You also might check with friends or neighbors who may have used such services before, or search the Yellow Pages. The National Hospice and Palliative Care Organization offers more information on hospice, including a provider directory, on its Web site. Also check to see if your state has a statewide hospice organization.

When evaluating available programs, ask the following:

• Is the hospice Medicare-certified?
• What services are available to the patient?
• What services are offered to the family?
• What bereavement services are available?
• How involved are the family members?
• How involved is the doctor?
• Who makes up the hospice care team, and how are they trained or screened?
• How will the individual's pain and symptoms be managed?
• If circumstances change, can services be provided in different settings? Does the hospice have contracts with local nursing homes? Is residential hospice available?
• Is the program reviewed and licensed by the state or certified in some other way?
• Are all costs covered by insurance?

How much you pay for hospice care can vary greatly depending on the length and type of care necessary and your insurance coverage. Medicare and most private insurance plans, including managed care organizations, cover hospice care. Hospice is also covered by Medicaid in most states. Some hospice programs provide services on a sliding fee scale, based on your ability to pay, and may also provide some durable medical equipment for support within the home.