What hospice care is, and what it is not

Hospice is a model of care for people with a serious illness who are no longer pursuing treatment aimed at a cure, and who a physician believes are likely to have six months or less to live if the illness runs its usual course. The goal shifts to relieving pain and other symptoms, maintaining dignity and comfort, and supporting the family through the illness and after the death.

Hospice is not a building, and it is not a decision to stop caring. Most hospice care in the United States is delivered wherever the person lives: a house, an apartment, an assisted living community, or a nursing facility. A smaller number of patients receive care in an inpatient hospice setting when symptoms cannot be managed at home.

It is also voluntary. A patient can leave hospice at any time, for any reason, including to resume treatment. If they leave and later qualify again, they can return.

Hospice is for people with any terminal illness, not only cancer. The most common diagnoses are cancer, heart disease, dementia, chronic lung disease, stroke, and kidney disease, but the qualifying question is not the diagnosis. It is whether the person’s condition and trajectory suggest a limited prognosis and whether the focus of care has shifted to comfort.

A physician must certify that the patient is terminally ill, and Medicare requires that a second physician also certify. Eligibility is reviewed over time, and patients can remain on hospice longer than six months if the illness continues to follow a declining course.

If you are unsure whether someone qualifies, that is exactly the question to ask. An evaluation is a clinical assessment, not a commitment.

Under the Medicare hospice benefit, a certified hospice must provide a defined set of services. In practice, that means:

• Physician services. A hospice medical director oversees care and works with the patient’s own physician where that physician remains involved.
• Skilled nursing. A registered nurse manages the care plan and visits regularly. The benefit also requires on-call nursing access, so urgent questions have somewhere to go between visits.
• Medications. Drugs for pain and symptom management related to the terminal diagnosis, along with related supplies.
• Equipment. A hospital bed, wheelchair, walker, commode, and other items related to the terminal diagnosis.
• Home health aide. Help with personal care such as bathing and grooming, for a limited number of visits per week.
• Social work. Help with family conflict, benefits, placement questions, and practical planning.
• Spiritual care. Chaplain support for the patient and family, in line with their own beliefs.
• Volunteers. Trained volunteers for companionship and caregiver respite, where the program has them.
• Bereavement support. Support for the family for up to a year after the death.

The specific number of visits and aide hours varies by agency. It is a reasonable question to ask before you choose a provider, and to ask again if the patient’s condition changes.

Hospice is delivered by an interdisciplinary team rather than a single clinician. In a typical week, a patient might see a nurse once or twice, an aide two or three times for personal care, and a social worker or chaplain occasionally. The patient’s own physician may stay involved by phone and records.

The team meets regularly to review the plan. If symptoms change, visit frequency should change with them.

Our page on the care team explains each role in more detail, including what each person does and does not do.

The misunderstandings here cause real harm, so they are worth stating directly:

• Hospice is not 24-hour bedside caregiving. It provides scheduled visits and around-the-clock access to advice by phone. Continuous bedside caregiving is a separate service, usually private pay.
• Hospice does not hasten death. The purpose of hospice medication is comfort. Doses are adjusted to symptoms.
• Hospice does not always mean dying within days. Some patients are on hospice for months. Others are admitted very near the end.
• Hospice is not free in every circumstance. The Medicare hospice benefit covers most hospice services for eligible patients, but room and board in a facility and around-the-clock attendant care are not covered.
• Hospice does not require you to abandon your doctor. Many patients keep their primary physician or specialist involved.

We are a hospice provider based in Arcadia, caring for patients where they live. The core hospice services described on this page are what hospice care consists of under the Medicare hospice benefit: nursing, physician oversight, medications and equipment related to the terminal diagnosis, aide visits, social work, chaplaincy, and bereavement support.

Providers differ in what they operate themselves and what they arrange. Some hospices run their own inpatient unit; most do not, and arrange that level of care elsewhere. Ask any provider directly what they operate, what they contract for, and who answers the phone at night. Those answers matter more than a website paragraph.