How to Choose a Home Care Provider:

What is Home Care

"Home care" is a simple phrase that encompasses a wide range of health and social services. These services are delivered at home to recovering, disabled, chronically or terminally ill persons in need of medical, nursing, social, or therapeutic treatment and/or assistance with the essential activities of daily living.

Generally, home care is appropriate whenever a person prefers to stay at home but needs ongoing care that cannot easily or effectively be provided solely by family and friends. More and more older people, electing to live independent, non-institutionalized lives, are receiving home care services as their physical capabilities diminish. Younger adults who are disabled or recuperating from acute illness are choosing home care whenever possible. Chronically ill infants and children are receiving sophisticated medical treatment in their loving and secure home environments. Adults and children diagnosed with terminal illness also are being cared for at home, receiving compassion and maintaining dignity at the end of life. As hospital stays decrease, increasing numbers of patients need highly skilled services when they return home. Other patients are able to stay at home to begin with, receiving safe and effective care in the comfort of their own homes.

Who Provides Home Care?

Home care services are usually provided by home care organizations but may also be obtained from registries and independent providers. Home care organizations include home health agencies; hospices; homemaker and home care aide (HCA) agencies; staffing and private-duty agencies; and companies specializing in medical equipment and supplies, pharmaceuticals, and drug infusion therapy. Several types of home care organizations may merge to provide a wide variety of services through an integrated system.

Home care services generally are available 24 hours a day, seven days a week. Depending on the patient's needs, these services may be provided by an individual or a team of specialists on a part-time, intermittent, hourly, or shift basis. Following are descriptions of the various types of home care providers.

Home Health Agencies

The term home health agency often indicates that a home care provider is Medicare certified. A Medicare-certified agency has met federal minimum requirements for patient care and management and therefore can provide Medicare and Medicaid home health services. Individuals requiring skilled home care services usually receive their care from a home health agency. Due to regulatory requirements, services provided by these agencies are highly supervised and controlled. Some agencies deliver a variety of home care services through physicians, nurses, therapists, social workers, homemakers and HCAs, durable medical equipment and supply dealers, and volunteers. Other home health agencies limit their services to nursing and one or two other specialties. For cases in which an individual requires care from more than one specialist, home health agencies coordinate a caregiving team to administer services that are comprehensive and efficient. Personnel are assigned according to the needs of each patient. Home health agencies recruit and supervise their personnel; as a result, they assume liability for all care.

Hospices

Hospice care involves a core interdisciplinary team of skilled professionals and volunteers who provide comprehensive medical, psychological, and spiritual care for the terminally ill and support for patients' families. Hospice care also includes the provision of related medications, medical supplies, and equipment. It is based primarily in the home, enabling families to remain together. Trained hospice professionals are available 24 hours a day to assist the family in caring for the patient, ensure that the patient's wishes are honored, and keep the patient comfortable and free from pain. Most hospices are Medicare certified and licensed according to state requirements.

Homemaker and Home Care Aide Agencies

Homemaker and HCA agencies employ homemakers or chore workers, HCAs, and companions who support individuals through meal preparation, bathing, dressing, and housekeeping. Personnel are assigned according to the needs and wishes of each client. Some states require these agencies to be licensed and meet minimum standards established by the state. Most homemaker and HCA agencies recruit, train, and supervise their personnel and thus are responsible for the care rendered.

Staffing and Private-duty Agencies

Staffing and private-duty agencies generally are nursing agencies that provide individuals with nursing, homemaker, HCA, and companion services. Most states do not require these agencies to be licensed or meet regulatory requirements. Some staffing and private-duty agencies assign nurses to assess their clients' needs to ensure that personnel are properly assigned and provide ongoing supervision. These agencies recruit their own personnel. Again, responsibility for patient care rests with each agency.

Pharmaceutical and Infusion Therapy Companies

Pharmaceutical and infusion therapy companies specialize in the delivery of drugs, equipment, and professional services for individuals receiving intravenous or nutritional therapies through specially placed tubes. These companies employ pharmacists who prepare solutions and arrange for delivery to patients. Nurses also are hired to teach self-administration in patients' homes. Some pharmaceutical and infusion therapy companies are home health agencies, certified by Medicare. In addition, some states require these organizations to be licensed. Each company assumes responsibility for personnel and the services rendered.

Durable Medical Equipment and Supply Dealers

Durable medical equipment and supply dealers provide home care patients with products ranging from respirators, wheelchairs, and walkers, to catheter and wound care supplies. These dealers employ staff who deliver and, when necessary, install these products as well as instruct patients on their proper in-home use. Durable medical equipment and supply dealers usually do not provide physical care for patients, but there are a few exceptions. Some dealers offer pharmacy and infusion services, where a nurse administers medication and nutritional formulas to patients and teaches them the proper techniques for self-administration. Some companies also provide respiratory therapy services to help individuals use breathing equipment. Durable medical equipment and supply dealers that bill the Medicare program are required to meet federal minimum standards. Some states require that these organizations be licensed. Each dealer is liable for its personnel and the services provided to patients.

Registries

Registries serve as employment agencies for home care nurses and aides by matching these providers with clients and collecting finder's fees. These organizations usually are not licensed or regulated by government. Registries are not required to screen or background-check the caregivers, but some do undertake these tasks routinely. In addition, although not legally required to, some registries offer procedures for patients to file complaints. Clients select and supervise the work of a registry-referred provider. They also pay the provider directly and must comply with all applicable state and federal labor, health, and safety laws and regulations, including payroll tax and social security withholding requirements.

Independent Providers

Independent providers are nurses, therapists, aides, homemakers and chore workers, and companions who are privately employed by individuals who need such services. Aides, homemakers, chore workers, and companions are not required to be licensed or to meet government standards except in cases where they receive state funding. In this arrangement, the responsibility for recruiting, hiring, and supervising the provider rests with the client. Finding back-up care in the event that the provider fails to report to work or fulfill job requirements is the client's responsibility. Clients also pay the provider directly and must comply with all applicable state and federal labor, health, and safety requirements.

What Types of Services Do Home Care Providers Deliver?

Home care providers deliver a wide variety of health care and supportive services, ranging from professional nursing and HCA care to physical, occupational, respiratory, and speech therapies. They also may provide social work and nutritional care and laboratory, dental, optical, pharmacy, podiatry, x-ray, and medical equipment and supply services. Services for the treatment of medical conditions usually are prescribed by an individual's physician. Supportive services, however, do not require a physician's orders. An individual may receive a single type of care or a combination of services, depending on the complexity of his or her needs. Home care services can be provided by the following professionals, paraprofessionals, and volunteers.

Physicians visit patients in their homes to diagnose and treat illnesses just as they do in hospitals and private offices. They also work with home care providers to determine which services are needed by patients, which specialists are most suitable to render these services, and how often these services need to be provided. With this information, physicians prescribe and oversee patient plans of care. Under Medicare, physicians and home health agency personnel review these plans of care as often as required by the severity of patient medical conditions at least once every 62 days. The interdisciplinary team reviews the care plans for hospice patients and their families at least once a month, or as frequently as patient conditions and/or family circumstances require.

Registered nurses (RNs) and licensed practical nurses (LPNs) provide skilled services that cannot be performed safely and effectively by nonprofessional personnel. Some of these services include injections and intravenous therapy, wound care, education on disease treatment and prevention, and patient assessments. RNs may also provide case management services. RNs have received two or more years of specialized education and are licensed to practice by the state. LPNs have one year of specialized training and are licensed to work under the supervision of registered nurses. The intricacy of a patient's medical condition and required course of treatment determine whether care should be provided by an RN or can be provided by an LPN.

Physical therapists (PTs) work to restore the mobility and strength of patients who are limited or disabled by physical injuries through the use of exercise, massage, and other methods. PTs often alleviate pain and restore injured muscles with specialized equipment. They also teach patients and caregivers special techniques for walking and transfer.

Social workers evaluate the social and emotional factors affecting ill and disabled individuals and provide counseling. They also help patients and their family members identify available community resources. Social workers often serve as case managers when patients' conditions are so complex that professionals need to assess medical and supportive needs and coordinate a variety of services.

Speech language pathologists work to develop and restore the speech of individuals with communication disorders; usually these disorders are the result of traumas such as surgery or stroke. Speech therapists also help retrain patients in breathing, swallowing, and muscle control.

Occupational therapists (OTs) help individuals who have physical, developmental, social, or emotional problems that prevent them from performing the general activities of daily living (ADLs). OTs instruct patients on using specialized rehabilitation techniques and equipment to improve their function in tasks such as eating, bathing, dressing, and basic household routines.

Dietitians provide counseling services to individuals who need professional dietary assessment and guidance to properly manage an illness or disability.

HCAs/home health aides assist patients with ADLs such as getting in and out of bed, walking, bathing, toileting, and dressing. Some aides have received special training and are qualified to provide more complex services under the supervision of a nursing professional.

Homemaker and chore workers perform light household duties such as laundry, meal preparation, general housekeeping, and shopping. Their services are directed at maintaining patient households rather than providing hands-on assistance with personal care.

Companions provide companionship and comfort to individuals who, for medical and/or safety reasons, may not be left at home alone. Some companions may assist clients with household tasks, but most are limited to providing sitter services.

Volunteers meet a variety of patient needs. The scope of a volunteer's services depends on his or her level of training and experience. Volunteer activities include, but are not limited to providing companionship, emotional support, and counseling and helping with personal care, paperwork, and transportation.

Who Pays for Home Care Services?

Home care services can be paid for directly by the patient and his or her family members or through a variety of public and private sources. Hospice care generally is provided regardless of the patient's and/or family's ability to pay. Public third-party payors include Medicare, Medicaid, the Older Americans Act, the Veterans Administration, and Social Services block grant programs. Some community organizations, such as local chapters of the American Cancer Society, the Alzheimer's Association, and the National Easter Seal Society, also provide funding to help pay for home care services. Private third-party payors include commercial health insurance companies, managed care organizations, CHAMPUS, and workers' compensation.

Self-pay

Home care services that fail to meet the criteria of third-party payors must be paid for "out of pocket" by the patient or other party. The patient and home care provider negotiate the fees.

Public Third-party Payors

Medicare
Most Americans older than 65 are eligible for the federal Medicare program. If an individual is homebound, under a physician's care, and requires medically necessary skilled nursing or therapy services, he or she may be eligible for services provided by a Medicare-certified home health agency. Depending on the patient's condition, Medicare may pay for intermittent skilled nursing; physical, occupational, and speech therapies; medical social work; HCA services; and medical equipment and supplies. The referring physician must authorize and periodically review the patient's plan of care. With the exception of hospice care, the services the patient receives must be intermittent or part time and provided through a Medicare-certified home health agency for reimbursement.

Hospice services are available to individuals who are terminally ill and have a life expectancy of six months or less; there is no requirement for the patient to be homebound or in need of skilled nursing care. A physician's certification is required to qualify an individual for the Medicare Hospice Benefit. The physician also must re-certify the individual at the beginning of each six-month benefit period. In turn, the patient is required to sign a statement indicating that he or she understands the nature of the illness and of hospice care. By signing this statement, the patient surrenders his or her rights to other Medicare benefits related to terminal illness.
Medicaid
Administered by the states, Medicaid is a joint federal-state medical assistance program for low-income individuals. Each state has its own set of eligibility requirements; however, states are only mandated to provide home health services to individuals who receive federally assisted income maintenance payments, such as Social Security Income and Aid to Families with Dependent Children (AFDC), and individuals who are "categorically needy." Categorically needy recipients include certain aged, blind, and/or disabled individuals who have incomes that are too high to qualify for mandatory coverage but below federal poverty levels. Individuals younger than 21 who meet income and resources requirements for AFDC, yet otherwise are ineligible for AFDC, also qualify as categorically needy. Under federal Medicaid rules, coverage of home health services must include part-time nursing, HCA services, and medical supplies and equipment. At the state's option, Medicaid also may cover audiology; physical, occupational, and speech therapies; and medical social services. Hospice is a Medicaid-covered benefit in 38 states. The Medicaid hospice benefit covers the same range of services that Medicare does.
Older Americans Act (OAA)
Enacted by Congress in 1965, the OAA provides federal funds for state and local social service programs that enable frail and disabled older individuals to remain independent in their communities. This funding covers HCA, personal care, chore, escort, meal delivery, and shopping services for individuals with the greatest social and financial need who are 60 years of age and older. Increasingly, individuals who can afford to pay for some of these services are being asked to contribute in proportion to their income. Individuals often request the services they need through an Area Agency on Aging, which will provide them directly or in cooperation with local organizations.
Veterans Administration
Veterans who are at least 50% disabled due to a service-related condition are eligible for home health care coverage provided by the Veterans Administration (VA). A physician must authorize these services, which must be delivered through the VA's network of hospital-based home care units. The VA does not cover nonmedical services provided by HCAs.
Social Services Block Grant Programs
Each year states receive federal social services block grants for state-identified service needs. The government allocates these funds on the basis of the state's population and within a federal limit. Portions of the funding often are directed into programs providing HCA and homemaker or chore worker services. Individuals should contact their state health departments and local offices on aging for additional information.
Community Organizations
Some community organizations, along with state and local governments, provide funds for home health and supportive care. Depending on an individual's eligibility and financial circumstances, these organizations may pay for all or a portion of the needed services. Hospital discharge planners, social workers, local offices on aging, and the United Way are excellent sources for information about community resources.

Private Third-party Payors

Commercial Health Insurance Companies
Commercial health insurance policies typically cover some home care services for acute needs, but benefits for long-term services vary from plan to plan. Commercial insurers, including Blue Cross and Blue Shield and others, generally pay for skilled professional home care services with a cost-sharing provision. Such policies occasionally cover personal care services. Most commercial and private insurance plans will cover comprehensive hospice services, including nursing, social work, therapies, personal care, medications, and medical supplies and equipment. Cost-sharing varies with individual policies, but often is not required.

Individuals sometimes find it necessary to purchase Medigap insurance or long-term care insurance policies, for additional home care coverage.

Medigap insurance is designed to bridge some of the gaps in Medicare coverage. Some Medigap policies offer at-home recovery benefits, which pay for some personal care services when the policyholder is receiving Medicare-covered skilled home health services. The policyholder's physician must order this personal care in conjunction with the skilled services. Home care coverage in Medigap policies is not designed to cover extended long-term care. This type of coverage is most helpful to individuals recovering from acute illness, injuries, or surgery.

Long-term care insurance primarily was intended to protect individuals from the catastrophic expense of a lengthy stay in a nursing home. However, as the public need and preference for home care has grown, private long-term care insurance policies have expanded their coverage of personal care, companionship, and other in-home services. Considerable care should be taken in selecting a long-term care insurance policy, as home care benefits vary greatly among plans. Consumers should be aware of limitations on coverage, such as prior hospitalization requirements, and pre-existing condition exclusions. Some policies may only pay for services that are already covered by Medicare.
Managed Care Organizations
Managed care organizations (MCOs) and other group health plans sometimes include coverage for home care services. MCOs contracting with Medicare must provide the full range of Medicare-covered home health services available in a particular geographic area. Medicare beneficiaries who are enrolled with an MCO may elect their hospice benefit from the hospice of their choice. These organizations only pay for services that are pre-approved.
CHAMPUS
On a cost-shared basis the Civilian Health and Medical Program of the Uniformed Services (CHAMPUS) covers skilled nursing care and other professional medical home care services for dependents of active military personnel and military retirees and their dependents and survivors. CHAMPUS offers a comprehensive hospice benefit to its terminally ill beneficiaries, which covers nursing, social work and counseling services, therapies, personal care, medications, and medical supplies and equipment.
Workers' Compensation
Any individual requiring medically necessary home care services as a result of injury on the job is eligible to receive coverage through workers' compensation.

What Are the Standard Billing and Payment Practices?

When services are covered by Medicare and/or Medicaid, home care providers must bill their fees directly to the payor to Medicare or Medicaid. Providers often will bill other third-party payors directly as well. Any uncovered costs are later billed to the client. However, if a client receives services from a registry or independent provider, he or she must pay the provider directly. Later the client may file for reimbursement from the insurance company if the services qualify as covered benefits. Payment options are detailed below.

Home Health Agencies

Medicare, Medicaid, and most private insurance plans pay for services that home health agencies deliver. Payment from these sources depends on whether the care is medically necessary and the individual meets specific coverage criteria. Individuals may opt to pay out of pocket for services that are not covered by other sources. Some agencies receive special funding from state and local governments and community organizations to cover the costs of needed care when other options are not available.

Hospices

Coverage for hospice care is available through Medicare, Medicaid programs in 38 states, and most private insurance plans. If insurance coverage is insufficient or unavailable, the patient and his or her family may pay for services out of pocket. Most hospices may provide free services to individuals who have limited or no financial resources.

Homemaker and Home Care Aide Agencies

Individual consumers usually pay for services from homemaker and HCA agencies. However, some states contract with these agencies to deliver personal care and homemaker services within their social services and medical assistance programs. On rare occasions, commercial insurers may pay for a portion or all of the costs of these services. Some agencies draw assistance from charitable community funds when other sources of payment are not available.

Staffing and Private-duty Agencies

Typically, the individual or his or her commercial insurance carrier pays for services provided by staffing and private-duty agencies, provided that the insurance policy's coverage requirements are met. Some staffing agencies contract with state Medicaid programs to provide nursing and personal care services.

Pharmaceutical and Infusion Therapy Companies

Pharmaceutical and infusion therapy supplies and services are almost always paid for by commercial insurance companies and Medicaid. Medicare covers the cost of nutritional supplements and certain medications when the situation meets strict coverage criteria.

Durable Medical Equipment and Supply Dealers

Fees for durable medical equipment and supplies are usually covered by Medicare, Medicaid, and commercial insurance programs, provided that the products are ordered by a physician and are medically necessary to treat an illness or injury.

Registries

The individual client generally pays for registry services. In some cases, commercial insurance companies may reimburse a portion or all of these costs.

Independent Providers

Usually the individual pays for services rendered by independent providers. Some commercial insurance policies will provide reimbursement if the services qualify as covered benefits.

How Do I Find Home Care Services?

Finding the home care provider best suited for your needs requires research, but it is time well spent. Important factors include the quality of care, availability of needed services, personnel training and expertise, and coverage provided by the payor. Before starting a search, it is important to determine which types of services you need. You may wish to consult with your physician, a hospital discharge planner, or a social service organization, such as an Area Office on Aging, for assistance in evaluating your needs. Once you've completed this assessment, you will be able to identify the type of home care provider most appropriate to assist you.

Fortunately most communities have a variety of providers to choose from. Your physician or hospital discharge planner can help you locate home care providers in your area. Contact your state's departments of health, aging, and social services to obtain a list of licensed agencies. In addition, most state home care and hospice associations maintain directories of existing home care organizations and can assist you in identifying an appropriate provider. Telephone numbers for the units on aging and home care and hospice associations representing each of the 50 states, the District of Columbia, and Puerto Rico, are provided on pages 21 through 28 of this brochure.

Home care providers also are listed in the yellow pages under "home care," "hospice," or "nurses." If your community has information and referral services available through an Area Agency on Aging or a local chapter of the United Way, check with them. Your place of religious worship may also have information about local home care providers.

How Do I Select the Right Home Care Provider?

Once you acquire the names of several providers, you will want to learn more about their services and reputations. Following is a checklist of questions to ask providers and other individuals who may know about the provider's track record. Their insight will help you determine which provider is best for you or your loved one.

How long has this provider been serving the community?

Does this provider supply literature explaining its services, eligibility requirements, fees, and funding sources? Many providers furnish patients with a detailed "Patient Bill of Rights" that outlines the rights and responsibilities of the providers, patients, and caregivers alike. An annual report and other educational materials also can provide helpful information about the provider.

How does this provider select and train its employees? Does it protect its workers with written personnel policies, benefits packages, and malpractice insurance?

Are nurses or therapists required to evaluate the patient's home care needs? If so, what does this entail? Do they consult the patient's physicians and family members?

Does this provider include the patient and his or her family members in developing the plan of care? Are they involved in making care plan changes?

Is the patient's course of treatment documented, detailing the specific tasks to be carried out by each professional caregiver? Does the patient and his or her family receive a copy of this plan, and do the caregivers update it as changes occur? Does this provider take time to educate family members on the care being administered to the patient?

Does this provider assign supervisors to oversee the quality of care patients are receiving in their homes? If so, how often do these individuals make visits? Who can the patient and his or her family members call with questions or complaints? How does the agency follow up on and resolve problems?

What are the financial procedures of this provider? Does the provider furnish written statements explaining all of the costs and payment plan options associated with home care?

What procedures does this provider have in place to handle emergencies? Are its caregivers available 24 hours a day, seven days a week?

How does this provider ensure patient confidentiality?

In addition, ask the home care provider to supply you with a list of references, such as doctors, discharge planners, patients or their family members, and community leaders who are familiar with the provider's quality of service.

Contact each reference and ask:

Do you frequently refer clients to this provider?

Do you have a contractual relationship with this provider? If so, do you require the provider to meet special standards for quality care?

What sort of feedback have you gotten from patients receiving care from this provider, either on an informal basis or through a formal satisfaction survey?

Do you know of any clients this provider has treated whose cases are similar to mine or my loved one's? If so, can you put me in touch with these individuals?

Where Can I Find Additional Information about a Provider's Services?

To determine the caliber of a Medicare-certified provider, you can review its Medicare Survey Report. For assistance in obtaining this document, contact your state's health department or health insurance counseling program, which offers free information specifically about the Medicare home health benefit. These offices also can direct you to the state's Medicare hot line for information about the quality of services provided by Medicare-certified home health agencies and hospices in your area. Telephone numbers for the health insurance counseling programs representing each state, the District of Columbia, and Puerto Rico are listed on pages 21 through 28.

In addition, many states require home care providers to earn a license to operate. To obtain a license, a provider must meet the basic legal and operating standards imposed by the state department of health. Your state health department can provide you with information on its licensed providers.

Last, several professional organizations have established standards to define quality in home care services. Through a voluntary process, many home care providers seek accreditation from these organizations to signify that they have met national standards for quality care. Home care accrediting agencies include the Accreditation Commission for Home Care, Inc., the Community Health Accreditation Program, the Joint Commission on Accreditation of Healthcare Organizations, the National Committee for Quality Assurance, and the National HomeCaring Council. Consider contacting one or more of these organizations for information about their accredited members. Their telephone numbers are provided on page 21 of this brochure.

What If a Problem Develops?

If you invest some time and follow the steps outlined in this brochure, you most likely will receive high-quality, safe, and effective home care. If a problem develops, however, or if you would like to issue a complaint, notify the home care provider's chief supervisor or administrator, the state health department or state Medicare hot line, and/or the local Better Business Bureau.

Although rare, cases of fraud do exist in some health care operations. These fraudulent activities waste valuable health care dollars. If you suspect fraud, even on the slightest scale, you should report these activities to your state department of health. If a case involves the delivery of Medicare home care services, contact the Office of the Inspector General hot line at 800/HHS-TIPS.

What Are my Rights as a Patient?

Federal law requires that all individuals receiving home care services be informed of their rights as a patient. Following is a model patient bill of rights the National Association for Home Care (NAHC) has developed, based on the patient rights currently enforced by law.

Home care patients have the right to:

be fully informed of all his or her rights and responsibilities by the home care agency;
choose care providers;
appropriate and professional care in accordance with physician orders;
receive a timely response from the agency to his or her request for service;
be admitted for service only if the agency has the ability to provide safe, professional care at the level of intensity needed;
receive reasonable continuity of care;
receive information necessary to give informed consent prior to the start of any treatment or procedure;
be advised of any change in the plan of care, before the change is made;
refuse treatment within the confines of the law and to be informed of the consequences of his or her action;
be informed of his or her rights under state law to formulate advanced directives;
have health care providers comply with advance directives in accordance with state law requirements;
be informed within reasonable time of anticipated termination of service or plans for transfer to another agency;
be fully informed of agency policies and charges for services, including eligibility for third-party reimbursements;
be referred elsewhere, if denied service solely on his or her inability to pay;
voice grievances and suggest changes in service or staff without fear of restraint or discrimination;
a fair hearing for any individual to whom any service has been denied, reduced, or terminated, or who is otherwise aggrieved by agency action. The fair hearing procedure shall be set forth by each agency as appropriate to the unique patient situation (i.e., funding source, level of care, diagnosis);
be informed of what to do in the event of an emergency; and
be advised of the telephone number and hours of operation of the state's home health hot line, which receives questions and complaints about Medicare-certified and state-licensed home care agencies.
NAHC's affiliate, the Hospice Association of America, has developed the following model bill of rights for all individuals receiving hospice care. It also is based on the patient rights currently enforced by law.

Hospice patients have the right to:

receive care of the highest quality;
have relationships with hospice organizations that are based on ethical standards of conduct, honesty, dignity, and respect;
in general, be admitted by a hospice organization only if it is assured that all necessary palliative and supportive services will be provided to promote the physical, psychological, social, and spiritual well-being of the dying patient. However, an organization with less than optimal resources may admit the patient if a more appropriate hospice organization is not available, but only after fully informing the client of its limitations and the lack of suitable alternative arrangements;
be notified in writing of their rights and obligations before their hospice care begins. Consistent with state laws, the patient's family or guardian may exercise the patient's rights when the patient is unable to do so. Hospice organizations have an obligation to protect and promote the rights of their patients;
be notified in writing of the care the hospice organization will furnish, the types of caregivers who will furnish the care, and the frequency of the services that are proposed to be furnished;
be advised of any change in the plan of care before the change is made;
participate in the planning of the care and in planning changes in the care, and to be advised that they have the right to do so;
refuse services and to be advised of the consequences of refusing care;
request a change in caregiver without fear of reprisal or discrimination;
confidentiality with regard to information about their health, social, and financial circumstances and about what takes place in the home;
expect the hospice organization to release information only as consistent with its internal policy, required by law, or authorized by the client;
be informed of the extent to which payment may be expected from Medicare, Medicaid, or any other payor known to the hospice organization;
be informed of any charges that will not be covered by Medicare, and the charges for which he or she may be liable;
receive this information orally and in writing within 15 working days of the date the hospice organization becomes aware of any changes in charges;
have access, on request, to all bills for service the patient has received regardless of whether they are paid out of pocket or by another party;
be informed of the hospice's ownership status and its affiliation with any entities to whom the patient is referred;
be informed of the procedure they can follow to lodge complaints with the hospice organization about the care that is, or fails to be, furnished, and regarding a lack of respect for property;
know about the disposition of such complaints;
voice grievances without fear of discrimination or reprisal for having done so; and
be told what to do in the case of an emergency.