All About Hospice: A Consumer's Guide Hospice is rooted in the centuries-old idea of offering hospitality to those on a long journey. Today the hospice movement continues to represent a supportive philosophy and concept of care available to those whose life expectancy is measured in weeks or months. Hospice recognizes death as the final stage of life and serves to enable hospice patients and families to live their final days to the fullest in the comfort of home, surrounded by their loved ones. One patient described hospice this way: "Hospice has turned an eternal secret into a living principle-that what's truly important is life lived richly, deeply, meaningfully, for as long as it lasts. Dignity, family, comfort, and caring are hospice, an idea whose time has come, and just in time for me." Today hospice care is comprehensive palliative medical care (treatment to provide for the reduction or abatement of pain and other troubling symptoms, rather than treatment aimed at cure) and supportive social, emotional, and spiritual services to the terminally ill and their families, primarily in the patient's home. The hospice interdisciplinary team, composed of professionals and volunteers, coordinates an individualized plan of care for each patient and family. Hospice reaffirms the right of every person and family to participate fully in this final stage of life's journey. There is no age limit for hospice care. Children as well as adults can receive the support of a hospice program during their final stages of life. What You Should Know The time to read this information is now-before you, a relative, or a friend who depends on you is faced with a terminal illness. To make informed decisions about hospice care, you need to learn as much as you can about- what services are available to you; how to get those services; how to pay for those services; and what benefits you are entitled to under Medicare, Medicaid, or private insurance. You are encouraged to ask questions of the social workers, clergy, counselors, doctors, nurses, and other professionals who provide your care. Home care agencies and hospices in your area are good sources of information. Hospice Services The structure and services offered will differ from program to program and from state to state. To the greatest extent possible, care is structured to keep families together and services are provided in the least restrictive environment possible. In-patient care, provided by a licensed hospital, licensed skilled nursing facility, or the hospice's own in-patient facility, is kept to a minimum. A wide range of services is provided by nurses and other health care providers within the hospice program. The variety of services provided by the hospice care team include the following. 1. Nursing Care Registered nurses coordinate the care for every patient, provide direct patient care, and check symptoms and medication. Patient and family education is an important part of every visit. The nurse is the link between the patient and his or her family and the physician. The nurse can also help evaluate the patient's condition. 2. Medical Social Services The social worker provides advice and counseling to the patient and all family members during the crisis period. The social worker assists other care team members in understanding the family dynamics and acts as an advocate for the patient and family in making use of community resources. 3. Physician Services The patient's physician approves the plan of care and works with the hospice team. In a full hospice program a hospice medical director is available to the attending physician, the patient, and the hospice care team as a consultant and a resource. 4. Spiritual Support and Counseling Clergy and other counselors are available to visit and provide spiritual support to the terminally ill at home. Programs also use churches and congregations to aid the patient and family as requested. 5. Home Care Aide and Homemaker Services Home care aides provide personal care for the patient, such as bathing, shampooing, shaving, and nail care, and homemakers may be available for light housekeeping or meal preparation. 6. Continuous Care in the Home If the patient's needs require it, or if the family can no longer manage the level of care required around the clock, hospice staff will provide care for eight-hour to 24-hour periods on a short-term basis. 7. Trained Volunteers for Support Services Early hospices were founded and operated by volunteers. These dedicated people continue to be the backbone of today's hospice. They are trained in good listening skills and provide compassionate support for both patient and family. They offer companionship and help with everyday tasks such as shopping, babysitting, and car pooling, which are part of the family's routine. Volunteer services may also include professional and personal care services as described in the above sections. 8. Physical, Occupational, and Speech Therapies Daily living tasks such as walking, dressing, or feeding oneself can become frustrating and impossible during an illness. Therapists help the patient develop new ways to accomplish these tasks. 9. 24-Hour On-call Availability A hospice team member is on call 24 hours a day, seven days a week. If a problem should arise, the team member may offer advice over the phone and, if necessary, make a visit. 10. Hospice In-patient Care Although hospice care is centered in the home, it sometimes becomes necessary to admit the patient to a hospital, extended care facility, or the hospice in-patient facility. The hospice can arrange for this care and will stay involved in the patient's treatment and with the family, resuming in-home care when appropriate. 11. Respite Care To provide relief for family members, the hospice may arrange a brief period of in-patient care for the patient. 12. Bereavement Support Bereavement is the time of mourning that we all experience following a loss. The hospice care team works with surviving family members to help them through the grieving process. Support may include a trained volunteer or counselor visiting the survivors at specific periods during the first year, or phone calls and/or letter contact and the opportunity for family members to participate in support groups. The hospice will refer survivors to medical or other professional care if necessary. Paying for Hospice Care Insurance coverage for hospice care is available through Medicare, Medicaid, and most private insurance plans. The patient and family should discuss payment options with the physician and hospice staff. 1. Medicare Hospice Benefit In 1982 Congress expanded the Medicare insurance program to include hospice care, thus providing coverage for a number of health and social services not previously covered. Medicare regulations require that most of the patient's care be provided in the home setting, with short stays in an in-patient facility. In order to qualify for the Medicare Hospice Benefit: A physician must certify that the patient has less than six months to live if the disease runs its normal course. The physician must recertify the individual at the beginning of each benefit period (two periods of 90 days each, one of 30 days, and an indefinite fourth period). The patient signs an elective statement indicating that he or she understands the nature of the illness and of hospice care. By signing the statement, the patient surrenders rights to other Medicare benefits related to the terminal illness. (A family member may sign the election statement if the patient is unable to do so.) 2. Medicaid In general, Medicaid is designed to help public aid recipients and people whose incomes are higher than public aid eligibility limits, but who meet other criteria and cannot pay for medical services. Thirty-eight states now offer the hospice benefit under Medicaid. 3. Private Insurance Most private insurance companies include hospice care as a benefit. Be sure to inquire about your insurance coverage, not only for hospice, but also for home care. 4. Private Pay If insurance coverage is not available or is insufficient, the patient and the family can engage providers and pay for services out of pocket. Most hospices provide services without charge if patients have limited or no financial resources. What Does Hospice Cost? Generally hospice costs less than care in hospitals, nursing homes, or other institutions for one basic reason: in those facilities you are charged each day for all general services such as nursing, food services, and basic medical supplies. With hospice you pay only for the services you or your family cannot provide. Institutions provide 24-hour care. Care at home generally is provided for periods of less than 24 hours. Some services such as Meals on Wheels, friendly visiting, and telephone reassurance usually operate at little or no cost because of volunteer help. The same may be true in some cities where transportation and escort services operate as community services. As a rule of thumb, you can expect hospice care will cost more when: additional services are needed; service periods are long and/or frequent; or services are provided by highly trained personnel. For example, per hour charges for RNs are usually more than for LPNs, and LPN fees are normally greater than fees for home care aides or homemakers. How to Find Services How easy or difficult this task is will depend on the resources available in your community and the particular services you need. When looking for hospice services be patient, be persistent, and be thorough. It's easier to choose a good agency if you understand certain key terms. Licensure In some states, hospices or the personnel they employ must be licensed to operate. The state department of health usually oversees these licenses. In either case, an agency or individual must meet basic legal and operating requirements to obtain a license. Generally these requirements do not guarantee the quality of services an agency provides. But if your state requires that an agency be licensed, failure to be licensed may indicate a problem. Bonding To become bonded, an agency pays a fixed dollar amount and obtains a bond that acts as a kind of insurance policy. If the consumer has a problem with the agency or its employees and sues the agency in court and wins, any court judgments awarded to the consumer can be paid from the bond. Certification In all states the state health department certifies hospices. A certified hospice is one that is eligible for payment for Medicare and, in some states, Medicaid hospice services. To become certified an agency must show that it meets basic federal and state standards, where required, for financial management and patient care. However, specific standards and their enforcement vary by state. Certified health personnel must meet the specific standards set by the national organization representing their profession. For example, the American Dietetic Association represents and certifies dietitians. The standards usually require passing a national test and/or providing proof of work experience. Social workers and therapists are among health personnel who are generally certified. Home care aides may be certified by some states. The Foundation for Hospice and Homecare offers national certification for home care aides. In general, state licensure and certification help protect the public against unqualified health personnel working in hospice, home care, health facilities, and in private practice. Some Additional Information If you have difficulty finding a hospice program or need additional information, you can contact your state hospice or home care association, the Found-ation for Hospice and Homecare (202/547-6586) or the Hospice Association of America at (202/546-4759). A Consumer Checklist for Hospice Once you have found a hospice resource, your consumer homework begins. This list has been developed to help you evaluate your hospice options and avoid problems. Be ready with paper, pen, and plenty of questions. Ask: About an Agency's Services and Structure Is it currently accredited, certified, and/or licensed for hospice? For what services? By what organization? Consumer followup: Confirm this information first hand with the organizations named. Does it have written statements outlining its services, eligibility criteria, costs, and payment procedures, employee job descriptions, malpractice, and liability insurance? Consumer followup: Ask for a copy of this material (any agency should provide it freely). Read it carefully. If limited services are available, what assistance can be provided to obtain other home care services as needed, such as home delivered meals? Consumer followup: Ask for the name of the agency person who will assist. Speak directly to him or her about actual help provided. Can it provide you with references from professionals, such as a hospital or community agency social workers, who have used this agency? Consumer followup: Ask for specific names and telephone numbers (a good agency will provide references on request). Talk to these people about their experiences. Also check with the Better Business Bureau, local Consumer Bureau, or the State Attorney General's office for information about their experience with the agency. About an Agency's Plan of Care (Treatment of Services) Is the plan carefully and professionally developed with you and your family? Or is it based solely on your own view of the home situation and request for services? Consumer followup: Ask for a professional evaluation before contracting with the agency. Look for these clues to quality. The evaluation- is done by an experienced registered nurse or social worker, not an agency clerk; is conducted in the home, not on the telephone; determines what you can do for yourself; and includes consultation with family physicians and/or other professionals already providing you with health and social services. In addition (if you agree), other members of your family are consulted. Once developed, is the plan of care written out? Are copies given to the workers in the home? Consumer followup: Ask for a copy of the plan of care. Check to see that it lists specific duties, work hours/days, and the name and telephone number of the supervisor in charge. When personnel report to the home, ask if they have seen the plan of care. If necessary, provide a copy and discuss each person's duties. About the Personnel If you are dealing with an agency, are references required by the agency and on file? Consumer followup: Individual references cannot usually be verified because of employer/employee confidentiality. If this is the case, ask the agency how many references it requires. Any agency should require several references (two or more). About Costs What are the hourly fees? Are there minimum hours per day or days per week required? Who pays for the employee's social security or other insurance? Are there any additional costs such as travel? For supervision or home evaluation? Medical supplies such as dressings? (Most quality agencies include supervision and evaluation in their fees.) How does the agency handle payment and billing? Consumer followup: Get all financial arrangements-costs, payment procedures, and billing-in writing. Read the agreement carefully before signing. Be sure to keep a copy. When Services Begin How to Evaluate Services Even when you carefully select an agency or an employee, problems can occur once services begin. When care is not for yourself, but for young children or someone living alone, be extra alert to signs of trouble. Poor Work Habits. Is the worker frequently late or absent? Does he or she leave early or do just enough to get by? Indifferent Care. Does the worker provide rough care? Fail to respond to reasonable requests? Act in a rude or discourteous manner? Untrustworthy Behavior. Is money or personal property missing? Are toilets, bedpans, or bathtubs dirty? Poor Personal Care. Is clothing improper for weather or living conditions? Are there unexplained or unusual marks, cuts, or bruises? Are bed sores developing or getting worse? Are there signs of unhappiness, fear, or depression? A "yes" to any of these questions points to problems-usually with the worker. However, unhappiness, fear, or depression may mean that the mental or physical health of the person receiving care is declining or there is a worsening of social factors in the home. How to Handle Problems If you suspect problems or if they have already occurred, do not delay. Take action at once before the situation gets worse. If the problems appear not too serious, you may wish to discuss them first with the worker. If a serious situation exists, call and discuss the problem with the agency supervisor, not the hospice worker. Put your complaint in writing as well. Keep a copy of your letter. Do not wait long to see results. If there is no improvement in one to two weeks (depending on the nature of the problem), complain again. Consider changing agencies. Contact the police first in cases of clear-cut theft, fraud, physical or mental abuse, or suspected child abuse. Don't hesitate to exercise this basic consumer right to protect yourself and others. Finally, if problems cannot be resolved to your satisfaction, you can and should take additional consumer action: Make your complaints a matter of public record. Contact the appropriate agencies, such as the city, county, or state consumer affairs or protection offices, or get in touch with the state attorney general. If your community has a Better Business Bureau, register your dissatisfaction there. If the hospice workers or agencies at fault are licensed or certified, or if an agency is accredited, notify the accrediting organization. Find out where the agency gets its financial support and complain there. If public funds such as Medicare or Medicaid are involved, complain to your elected federal, state, county, or city officials as well as to the state agencies in charge. As public advocates, they may be more responsive to consumer charges. Although complaints can usually be made with a phone call, it is often more effective to put it in writing. Be specific in your charges. Back them up where possible with proof that problems exist-for example, with copies of written complaints you have already made to an agency. Keep a record of all complaints made, the office or party contacted, dates contacted, and any followup. Your action will not always solve your problems, but it will help. It will forewarn other consumers and alert key public and private organizations and officials. Licensure, certification, and accreditation can be revoked for unsafe care and unethical practices. Hospice Patients' Bill of Rights The Hospice Association of America has developed the following Hospice Patients' Bill of Rights. Patients have a right to be notified in writing of their rights and obligations before 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, including the following: Dignity and Respect Patients and their hospice caregivers have a right to mutual respect and dignity. Caregivers are prohibited from accepting personal gifts and borrowing from patients/families/primary caregivers. In addition, patients have the right: to have relationships with hospice organizations that are based on honesty and ethical standards of conduct; to be informed of the procedures 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 (to lodge complaints call the hospice); to know about the disposition of such complaints; and to voice their grievances without fear of discrimination or reprisal for having done so. Decisionmaking-Patients have the right: to be notified in writing of the care that is to be furnished, the types (disciplines) of caregivers who will furnish the care, and the frequency of the services that are proposed to be furnished; to be advised of any change in the plan of care before the change is made; to 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; to refuse services and to be advised of the consequences of refusing care; and to request a change in caregiver without fear of reprisal or discrimination. The hospice organization or the patient's physician may be forced to refer the patient to another source of care if the client's refusal to comply with the plan of care threatens to compromise the provider's commitment to quality care. Privacy-Patients have the right: to confidentiality with regard to information about their health, social, and financial circumstances and about what takes place in the home; and to expect the hospice organization to release information only as consistent with its internal policy, required by law, or authorized by the client. Financial-Patients have the right: to be informed of the extent to which payment may be expected from Medicare, Medicaid or any other payor known to the hospice organization; to be informed of any charges that will not be covered by Medicare; to be informed of the charges for which the patient may be liable; to receive this information, orally and in writing, within 15 working days of the date the hospice organization becomes aware of any changes in charges; to have access, on request, to all bills for service received, regardless of whether they are paid out of pocket or by another party; and to be informed of the hospice's ownership status and its affiliation with any entities to which the patient is referred. Quality of Care-Patients have the right: to receive care of the highest quality; to 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. An organization with less than optimal resources may, however, 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; and to be told what to do in the case of an emergency. The hospice organization shall assure that: all medically related hospice care is provided in accordance with physician's orders and that a plan of care, which is developed by the patient's physician and the hospice interdisciplinary group in conjunction with the patient, specifies the services to be provided and their frequency and duration; and all medically related personal care is provided by an appropriately trained home care aide who is supervised by a nurse or other qualified hospice professional. © 1994 Foundation for Hospice and Homecare