Hospice Care and What to Expect

In the United States, hospice care development and services are guided by the Medicare Hospice Benefit (MHB). Because 95% of hospice care is in the form of routine home care, clinicians and patients may not be aware that there are 4 distinct levels of care. Patients may be admitted into a hospice program at any level and may transfer between levels as needed.

Hospice Care Levels

Routine Home Care
The most common type of hospice service in the United States is routine home care. A trained hospice team provides core services in the patient's home, whether a private residence, an assisted living facility or nursing home, essentially anywhere the patient may live. Hospice care includes physician or specialist visits as needed, along with nursing and home health aide visits 1-3 times per week. Counseling, medications, medical equipment and supplies, lab services and physical therapy are also included.

Respite Care
Respite care allows family members time away from the emotional and physical demands of care-giving. When the patient is not qualify for inpatient or continuing home care, respite care is available for the full-time caregiver. This is short-term in-patient care, limited to 5 consecutive days. The patient will be admitted to a hospice facility so that care-takers can relax, knowing the patient is well-cared for.

General Inpatient Hospice Care
The MHB provides for care in an acute care hospital or other setting where intensive nursing and other support may not be possible in the patient's home. This might be necessary in situations of uncontrolled and distressing physical symptoms or psycho-social problems. If around-the-clock support is deemed necessary, there are three kinds of inpatient facilities offering hospice care:

1. Free standing facility - These are owned and operated by a hospice company and are staffed with hospice trained staff. There is a limited supply of these types of facilities and may not be an option for everyone in need.

2. Hospital - A hospice company may lease a unit in or contract with the hospital to provide inpatient care. In this case, hospice-trained staff would provide around the clock care.

3. Long term care facility - A hospice company may lease of contract with a facility to provide hospice care.

Inpatient care is considered short-term and would be re-evaluated, allowing the patient to move to another level of care at any time.

Continuous Home Care
Continuous home care is intended for patients who qualify for general inpatient hospice care, but who prefer to stay in their own homes and need support through brief periods of crisis. The services of a home health aide or general homemaker services may be provided for 8-24 hours per day. This is a more intense form of support than routine home care, with the nurse and/or home health aide remaining in the patient's home to administer medications, treatment and support until the crises is under control.

What to Expect in Hospice Care
First, a referral is made by a physician, another medical professional or even the patient or family member. Then a doctor must sign an order stating that the patient is terminal, with fewer than six months to live. If a patient is terminal and wishes to receive hospice care, but the doctor is reluctant to sign the hospice order, then it is the patient's decision to do so-not the doctor's.

Next, the patient is admitted to hospice by a social worker and a nurse. They will meet with the patient and the family to explain hospice, develop a plan of care and complete paperwork.

Once a patient is admitted to hospice, he or she will be visited by several members of the hospice team. The staff members include nurses, chaplains, social workers, home health aides and trained volunteers. The nurse will provide a weekly assessment, and will make more visits if needed. During the visits, a patient's physical, spiritual, emotional, and social needs are determined and addressed. A typical visit consists of checking health status, administrating medications, changing bandages and providing equipment. Visits may also include engaging the patient in a favorite activity or special event. Some visits may involve assisting with funeral arrangements, power of attorney and living wills. The hospice experience has proven to be an important part of medical care and has become a valuable and comforting support for patients and families.