Hospice care is considered to be the for quality, compassionate care for people facing a life-limiting illness or injury. Hospice and palliative care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.

Hospice focuses on caring, not curing, and in most cases, care is provided in the patient’s home. Hospice care is also provided in hospitals, nursing homes, and other long-term care facilities. Hospice services are available to patients of any age, religion, race, or illness and is covered under Medicare, most private insurance plans, HMOs, and other managed care organizations.

Typically a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on call 24 hours a day, seven days a week.

The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control. The team usually consists of:

• The patient’s personal physician
• Hospice medical director or physician
• Nurses
• Home health aides
• Social workers
• Clergy or other counselors
• Trained volunteers and
• Speech, physical, and occupational therapists if needed.

The interdisciplinary hospice team:

• Manages the patient’s pain and symptoms
• Assists the patient with the emotional and psychosocial and spiritual aspects of dying
• Provides needed , medical supplies, and equipment
• Coaches the family on how to care for the patient
• Delivers special services like speech and physical therapy when needed
• Makes short-term inpatient care available when pain or symptoms become too difficult to manage at home, or the caregiver needs respite time and
• Provides bereavement care and counseling to surviving family and friends.

There are many hospices to choose from in the State of Oklahoma. Most hospices are individually owned, and not all hospices provide exactly the same services. Hospices are required by law to provide basic services, but how these services are provided and whether additional services are provided varies with each hospice. We suggest you interview several hospices before selecting one. Although your physician may suggest a particular hospice, you are free to choose whatever hospice you wish. If you or your loved one is a resident of a nursing home, you may be limited in your choice of hospices by the nursing facility. By law, the facilities are allowed to do this.

The Hospice Association of Oklahoma cannot recommend a particular hospice, but we have developed the following questions to ask before you decide.

• Are you required to sign a “Do Not Resuscitate” order before being admitted?
• Are you allowed to retain your personal physician?
• Will the hospice admit a patient without a primary caregiver? If so, what happens when the patient can no longer care for his/herself?
• Will the hospice accept a patient with a PEG tube? Someone receiving TPN? Does it provide tube feedings and/or dietary supplements (like Boost, Ensure, etc.)?
• Does the hospice have a provision to care for patients without Medicare and without insurance? How do you qualify for courtesy care if it exists? Does the hospice limit the number of courtesy care patients it admits? What services do courtesy care patients receive compared to patients with insurance?

• How many patients are assigned to each hospice nurse? (The National Hospice and Palliative Care Organization recommends no more than 10-12 per nurse.)
• How many volunteers have been trained to work with patients and families? Are there enough volunteers to provide help to all the families who request them? What does the training consist of?
• How often will home health aides be provided to the patient? What are they going to do? (Most aides visit homes 3-5 times per week depending on the family’s needs, but can be assigned every day if necessary. These aides provide personal care, change bed linens, and can cook light meals for the patient.) Are the aides certified in hospice and palliative care?
• How many of the hospice nurses are certified in hospice and palliative care?
• What is the typical caseload for the social workers? (NHPCO recommends no more than 20-30 patients/licensed social worker.)
• What is the typical caseload for the chaplains? (NHPCO recommends no more than 40-60 patients/chaplain).

What bereavement services does the hospice offer and for how long? Are these services provided by the hospice or contracted out to another organization? Which family members and friends are included in the bereavement support? Does the hospice sponsor a support group of some kind?

• Does the hospice provide physical therapy, occupational therapy, speech therapy, and dietary counseling on a regular basis or only occasionally? How is the need determined?
• What medical equipment is typically provided to a patient? (Equipment can include fully electric hospital beds, alternating pressure mattresses, bedside commodes, walkers, wheelchairs, shower chairs, oxygen if ordered by your doctor, nebulizers if ordered by your doctor, and more.) How quickly can the equipment be delivered, and how is it maintained? What if there’s a problem with a piece of equipment “after hours”?
• How does the hospice determine what medications it will provide if the patient is enrolled in the Hospice Medicare Benefit?
• How often does each of the staff members visit the patient?
• How is on-call service provided after hours and on weekends? How rapid is the response?
• What is the hospice’s policy on palliative radiation and chemotherapy? How does the hospice define these therapies?

• With what hospitals, nursing homes, and equipment companies is the hospice contracted?
• Is the hospice a member of the Hospice Association of Oklahoma, the National Hospice and Palliative Care Organization or the National Association of Home Care?
• Does the Joint Commission on Accreditation of Healthcare Organizations accredit the hospice?
• What were the results of the most recent survey by the Oklahoma State Department of Health? If any deficiencies were found, what were they, and what has been done to correct those deficiencies?
• Does the hospice measure family satisfaction with their service? How is it measured, and what are the results of the most recent survey?
• How long has the hospice been operating?

• Call the Oklahoma State Department of Health, 1-800-658-8898

An Advance Directive allows you to determine how much treatment you will receive if you have a terminal disease and are unconscious or are in a persistently vegetative state (coma). The following site, sponsored by the Attorney General of the State of Oklahoma, explains the provisions of the Advance Directive law and also has forms available for download: http://www.oag.state.us.