Chapter 30

Hospice Care

Whatever God has brought about / Is to be borne with courage.

—Sophocles, 401 B.C.

 

The modern concept of hospice care started in the early part of the twentieth century as a reaction against the intense pain and suffering people experienced dying in hospitals apart from their families. Hospice care is a concept, rather than a place. It focuses on the comfort of the patient, rather than the fight against the illness. It can be provided at home or in hospice facilities, which can be located in hospitals or nursing homes. It has more to do with life and dignity than with death and loss of hope. There are a great many misconceptions about the idea of hospice care.

Hospice care is a team approach involving experts from different backgrounds. Instead of continuing to treat a condition when a cure is virtually impossible and available treatments are not working, hospice care focuses on providing quality of life and relief from pain and other symptoms. It helps people live until the last moment, working to keep patients alert, pain-free, and as productive as they would like to be for as long as possible. The patient’s comfort overrides all other concerns. For example, even in a hospital setting, visitors, including children and possibly pets, are allowed twenty-four hours a day as compared to restricted hours with no children or pets allowed. Support is also available to help family members choose the care they want for their loved ones.

There is always the right to reinstate traditional care at any time, for any reason, such as when a condition goes into remission.

The variety of services provided round the clock by a hospice care team include

• physician care provided by the patient’s primary physician and the medical director of the hospice organization.

• nursing care provided by trained nurses.

• medical social services.

• spiritual support and counseling.

• home care aide and homemaker services.

• physical, occupational, and speech therapies.

• help with food planning provided by a dietitian.

• continuous care in the home.

• support services provided by trained volunteers.

• hospice inpatient care if necessary.

• for the family, respite care, counseling, and bereavement support.

To provide as much privacy as possible, hospice workers do not generally wear uniforms. While some religious groups have hospices, they do not usually require patients to follow their beliefs. Hospices respect advance directives, since they do nothing either to prolong life or to shorten it.

Hospice care is becoming increasingly more flexible, and you may negotiate which therapies you will retain and which you’ll give up. Some hospice patients have even entered experimental studies or begun promising new treatments.

Under Medicare regulations, hospices without an inpatient facility must contract for beds at a hospital, nursing home, rehabilitative center, or other institution in order to provide care. In this case, the hospice rules are followed, not the institution’s.

Choice. It is always your right to decide whether hospice care is appropriate and which program suits your needs. However, before entering a hospice program, a physician must certify that a patient has been diagnosed with a terminal illness and has a limited life expectancy (usually six months or less).

Section 1. Locating a Hospice Agency

Generally the best way to find hospice care is through your physician specialist. Hospices, or the personnel they employ, must be licensed in some states, usually by the state Department of Health. Having a license does not assure quality, but not having one may indicate a problem.

A certified hospice is eligible for Medicare and Medicaid payments. To become certified an agency must show that it meets basic federal and state standards for financial management and patient care. Specific standards and their enforcement vary by state.

Tip. If you are having difficulty finding a hospice program or need additional information, contact the Foundation for Hospice and Homecare (202-547-6586) or the Hospice Association of America (202-546-4759). You can also call the Hospice Hotline at 800-658-8898 or write the National Hospice Organization, 1901 N. Moore Street, Suite 901, Arlington, VA 22209.

Section 2. Assessing a Hospice Agency

When evaluating the quality of care provided by a hospice, either you or someone on your behalf should consider the following.

Qualifications and references.

• Is the agency accredited, certified, and/or licensed for hospice care? If so, for what services and by what organization?

• What does your GuardianOrg say about the agency?

• What references can the agency provide from professionals who have used this agency? Call these references and ask these people about their experiences.

• Does the agency have malpractice and liability insurance? Are they willing to supply you with a copy of these policies or at least a certificate showing the coverages?

Plan of care.

• Will the agency provide you with a written statement outlining a plan of care for you and costs? The plan of care should list specific duties, work hours/days, and the name and telephone number of the supervisor in charge.

• Does the agency provide a plan of care that is prepared for you specifically by an experienced registered nurse or social worker, not an agency clerk? Is the determination of your needs conducted in the home instead of on the telephone? Who determines what you can do for yourself? Was your plan of care created after consultation with family physicians and/or other professionals already providing you with health and social services? With your prior authorization, were other members of your family consulted?

Services.

• Where are the services offered?

• If the agency does not provide full services, what can the agency do to obtain other home care services as needed, such as home-delivered meals?

• What role does the family physician play?

• What are the educational levels and qualifications of their professional staff?

Costs.

• What are the costs? Do you have to use the services for a minimum number of hours per day or days per week? Who pays for the employee’s Social Security or other insurance? Are there additional charges for travel, supervision, home evaluation, or medical supplies? How does the agency handle payment and billing?

Other matters.

• What procedure does the agency have for emergencies? For complaints?

• Who handles paperwork for Medicare, insurance, and hospital billing?

• Will the hospice honor your advance medical directives?

Tip. Either you, a family member, or a friend should be sure that each person from the hospice agency who comes to your home sees the plan of care so everyone understands the ground rules.

Section 3. Evaluating Hospice Services

Look for the same factors as discussed in chapter 27, section 3.3, about home health care companies.

Section 4. Payment

With hospice care, a patient pays only for the services she or the family cannot provide and that are not covered by insurance. In 1995, the charges were estimated at $1,810 for a day in a hospital and $323 for a day in a skilled nursing facility. In contrast, hospice care was estimated at only $105 per day of care. A study by Mor and Kidder compared the costs of both home care and hospital-based hospice programs to those of conventional care for cancer patients. The cost of treatment for conventional care patients was nearly three times as high as that of home care hospice patients.

If hospice care is not covered under your health policy, negotiate, or have someone negotiate on your behalf, with the insurance carrier. Private insurers are concerned about the high costs of medical care and are increasingly willing to reimburse for optional services that can be demonstrated to be appropriate, cost-effective alternatives to hospitalization.

Hospice services are covered under Medicare. At least thirty-eight states currently offer hospice care as an option under their Medicaid programs.

Hospice care is also a covered benefit under most private insurance plans and managed care organizations. Military personnel and their dependents are covered for hospice care under CHAMPUS. If you choose to leave hospice care and either reinstate traditional care or dispense with care entirely, you can still return to hospice care, and Medicare, Medicaid, and most private insurance companies and MCOs will allow readmission.

If there is no coverage at all, the National Hospice Organization standards do not permit rejection based on inability to pay. Costs are paid by private donations.