Hospice Care

Hospice, in the earliest days, was a concept rooted in the centuries-old idea of offering a place of shelter and rest, or "hospitality" to weary and sick travelers on a long journey. In 1967 Dame Cicely Saunders at St. Christopher's Hospice in London first applied the term "hospice" to specialized care for dying patients. Today, hospice care provides humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.

Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. The goal of hospice is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and does not hasten or postpone death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. It provides family-centered care and involves the patient and the family in making decisions. Care is provided for the patient and family 24 hours a day, 7 days a week. Hospice care can be given in the patient's home, a hospital, nursing home, or private hospice facility. Most hospice care in the United States is given in the home, with a family member or members serving as the main hands-on caregiver.

Hospice care is suitable when you no longer benefit from cancer treatment and you are expected to live 6 months or less. Hospice gives you palliative care, which is treatment to help relieve cancer-related symptoms, but not cure the disease; its main purpose is to improve your quality of life. You, your family, and your doctor decide together when hospice care should begin.

One of the problems with hospice is that it is often not started soon enough. Sometimes the doctor, patient, or family member will resist hospice because he or she feels it sends a message of no hope. This is not true. If you get better or the disease goes into remission, you can be taken out of the hospice program and go into active cancer treatment. You can go back to hospice care at a later time, if needed. The hope that hospice brings is the hope of a quality life, making the best of each day during the last stages of advanced illness.

Hospice care services
There are many things about hospice care that set it apart from other types of health care.

Interdisciplinary team
In most cases, an interdisciplinary health care team manages hospice care. This means that many interacting disciplines work together to care for the patient. Doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers care for you and offer support based on their special areas of expertise. Together, they provide complete palliative care aimed at relieving symptoms and giving social, emotional, and spiritual support.

Pain and symptom control
The goal of pain and symptom control is to help you to achieve comfort while allowing you to stay in control of your life. This means that side effects are managed to make sure that you are as free of pain and symptoms as possible, yet still alert enough to make important decisions. To learn more on this topic, please see Pain Control: A Guide for People with Cancer and their Families.

Spiritual care
Hospice care also tends to the spiritual needs of you and your family. Since people differ in their spiritual needs and religious beliefs, spiritual care is set up to meet your and your family's specific needs. It may include helping you to look at what death means to you, to say good-bye, or to perform a certain religious ceremony or ritual. To learn more on this topic, please see Spirituality and Prayer.

Home care and inpatient care
Although hospice care can be centered in the home, you may need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. The hospice can arrange for inpatient care and will stay involved in your treatment and with your family. You can go back to in-home care when it is suitable. To learn more on this topic, please see Home Care.

Respite care
At some point during hospice care, your family and caregivers may need some time away from intense care-giving. Hospice service may offer them a break through respite care, which is often done in 5-day periods. During this time you will be cared for either in the hospice facility or in contracted beds in nursing homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get much-needed rest at home while you are cared for in an inpatient setting.

Family conferences
Through regularly scheduled family conferences, often led by the hospice nurse or social worker, family members can stay informed about your condition and what to expect. Family conferences also give you all a chance to share feelings, talk about expectations, and learn about death and the process of dying. Family members can find great support and stress relief through family conferences.

Bereavement care
Bereavement is the time of mourning after a loss. The hospice care team works with surviving family members to help them through the grieving process. A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and/or letter contact, as well as through support groups. The hospice team can refer family members and care-giving friends to other medical or professional care if needed. Bereavement services are often provided for about a year after the patient's death. To learn more on this topic, please see Coping with Grief and Loss, Bereavement Information for Children and Parents.

Volunteers
Hospice volunteers play an important role in planning and giving hospice care in the United States. Volunteers may be health professionals or lay people who provide services that range from hands-on care to working in the hospice office or fundraising.

Staff support
Hospice care involves staff members who are kind and caring. They communicate well, are good listeners, and are interested in working with families who are dealing with a life-threatening illness. Yet because the work can be emotionally draining, it is very important that support is available to help staff deal with their own grief and stress. Ongoing education about the dying process is also an important part of staff support.

Coordination of care
The interdisciplinary team coordinates and supervises all care 7 days a week, 24 hours a day. This team is responsible for making sure that all involved services share information. This may include the inpatient facility, the home care agency, the doctor, and other community professionals, such as pharmacists, clergy, and funeral directors.

Hospice care settings
Hospice care is defined not only by the services and care provided, but also by the setting in which these services are delivered. Hospice care may be provided in your home or in a special facility.

Most cancer patients choose to get hospice care at home. In fact, more than 90% of the hospice services provided in this country are based in patients' homes.

Before making a decision about the type of program that is best for you and your family, it is important to know all your options and what each requires. Your doctor, hospital social worker, or discharge planner can be very helpful in deciding which program is best for you and your family.

Home hospice care - Hospice Home Care
Many, if not all, of the home health agencies in your community, as well as independently owned hospice programs, will offer home hospice services. While a nurse, doctor, and other professionals staff the home hospice program, the primary caregiver is the key team member. The primary caregiver is usually a family member or friend who is responsible for around-the-clock supervision of the patient. This person is with the patient most of the time and is trained by the nurse to provide much of the hands-on care.

It is important to know that home hospice may require that someone be home with you at all times. This may be a problem if you live alone, or if your partner or adult children have full-time jobs. But creative scheduling and good team work among your friends and loved ones can overcome this problem. Members of the hospice staff will visit regularly to check on you and your family and give needed care and services.

Care begins when you are admitted to the program, which generally means that a hospice team member visits the home to learn about your situation and needs. Return visits are set up so that your needs can be re-evaluated regularly. To handle around-the-clock patient needs or crises, home hospice programs have an on-call nurse who answers phone calls day and night, makes home visits, or sends the appropriate team member if needed between scheduled visits. Medicare-certified hospices are required to provide nursing, pharmacy, and doctor services around the clock. To learn more on this topic, please see Caring for the Patient With Cancer at Home: A Guide for Patients and Families.

Hospital-based hospices
Hospitals that treat seriously ill patients often have a hospice program. This arrangement allows patients and their families easy access to support services and health care professionals. Some hospitals have a special hospice unit, while others use a "hospice team" of caregivers who visit patients with advanced disease on any nursing unit. In other hospitals, the staff on the patient's unit will act as the hospice team.

Long term care facility-based hospices
Many nursing homes and other long-term care facilities have small hospice units. They may have a specially trained nursing staff to care for hospice patients, or they may make arrangements with home health agencies or independent community-based hospices to provide care. This can be a good option for patients who want hospice care but do not have primary caregivers to take care of them at home.

Independently owned hospices
Many communities have "freestanding," independently owned hospices that feature inpatient care buildings as well as home care hospice services. As with long-term care facility hospice programs, the freestanding hospice can benefit patients who do not have primary caregivers available at home.

WHO PAYS FOR HOSPICE CARE

Home hospice care usually costs less than care in hospitals, nursing homes, or other institutional settings. This is because less high-cost technology is used and because family and friends provide much of the care at home.

In most states, many sources such as Medicare, Medicaid, the Department of Veterans Affairs, most private insurance plans, HMOs, and other managed care organizations pay for hospice care. Along with this, community contributions, memorial donations, and foundation gifts allow many hospices to provide free services to patients who can't afford payment. Other programs charge patients according to their ability to pay. To get payment from Medicare, the agency must be approved by Medicare to provide hospice services.

Medicare hospice
To qualify for the Medicare hospice benefit, a doctor and the hospice medical director (also a doctor) must certify that the patient has less than 6 months to live if the disease runs its normal course. The doctor must re-certify the individual at the beginning of each benefit period (2 periods of 90 days each, then an unlimited number of 60-day periods). The patient signs a statement that says he or she understands the nature of the illness and of hospice care, and that he or she wants to be admitted to hospice. By signing the statement, the patient declines Medicare Part A and instead chooses the Medicare hospice benefit for all care related to his or her cancer. The patient can still receive Medicare benefits for other illnesses. A family member may sign the statement if the patient is unable to do so.

Medicaid coverage
In 1986, legislation was passed allowing the states to develop coverage for hospice programs. Most states do have a Medicaid hospice benefit, which is patterned after the Medicare hospice benefit.

Private insurance
Most private insurance companies include hospice care as a benefit. Be sure to ask about your insurance coverage, not only for hospice, but also for home care.

Private pay
If insurance coverage is not available or is not enough to cover the costs, the patient and the family can hire hospice providers and pay for services out-of-pocket. Most hospices will provide services without charge if patients have limited or no financial resources.

WHAT QUESTIONS SHOULD I ASK ABOUT HOSPICE CARE

There are a number of things you might want to ask about when deciding on a hospice program. We will review some of them here.

Accreditation
Is the agency accredited (certified and licensed) by a nationally recognized group, such as the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)? The JCAHO is an independent, not-for-profit organization that evaluates and accredits health care organizations and programs. It is an important resource in selecting quality health care services.

Certification
Is this hospice program Medicare certified? Medicare-certified programs have to meet at least minimum requirements for patient care and management.

Licensure
Is the program licensed by the state, if required by your state?

Consumer information
Does the agency have written statements outlining services, eligibility rules, costs and payment procedures, employee job descriptions, and malpractice and liability insurance? Ask them to send you any brochures or other available information about their services.

References
How many years has the agency been serving your community? Can the agency give you references from professionals -- such as a hospital or community social workers -- who have used this agency? Ask for names and telephone numbers. A good agency will give you these if you ask for them. Talk with these people about their experiences with the hospice. Also, check with the Better Business Bureau, your local Consumer Bureau, or the State Attorney General's office.

Admissions
How well does hospice work with each patient and family to apply policies or negotiate differences? If the hospice imposes conditions that do not feel comfortable, it may be a sign that it is not a good fit for you. If you are not sure whether you or your loved one qualifies for hospice -- or whether you even want it -- is the agency willing to meet with you to help you talk through these concerns?

Plan of care
Does the agency create a plan of care for each new patient? Is the plan carefully and professionally developed with input from you and your family? Is the plan of care written out and are copies given to everyone involved? Check to see if it lists specific duties, work hours/days, and the name and telephone number of the supervisor in charge. Is the care plan updated as your needs change? Ask if you can look at a sample care plan.

Primary caregiver
Does the hospice require you to have a primary caregiver as a condition of admission? What responsibilities are expected of the primary caregiver? Will someone need to be with you all the time? What help can the hospice offer to organize and assist the family's efforts? Can the hospice fill in around job schedules, travel plans, or other responsibilities? If you live alone, what other options can the hospice suggest?

Initial evaluation
Does a nurse, social worker, or therapist come to you to talk about and evaluate the types of services you may need? Is this done in your home, rather than over the telephone? Does it highlight what you can do for yourself? Does it include input from your family doctor and/or other professionals already involved in your care? Are other members of your family included in this visit?

Personnel
Are there references on file for home care staff? Ask how many references the agency requires for each staff member who gives home care (2 or more should be required). Does the agency train, supervise, and monitor its caregivers? Ask how often the agency sends a supervisor to the patient's home to review the care being given to the patient. Ask whether the caregivers are licensed and bonded. Who do you call if you have questions or complaints? What is the procedure for resolving issues?

Costs
How does the agency handle payment and billing? Get all financial arrangements -- costs, payment procedures, and billing -- in writing. Read the agreement carefully before signing. Be sure to keep a copy. What resources does the agency provide to help you find financial assistance if it is needed? Are standard payment plan options available?

Telephone response
Does the agency have a 24-hour telephone number you can call when you have questions? How does the hospice respond to calls? Does the telephone staff seem caring, patient, and competent from the first contact, even if they need to return your call? Do they speak in plain, understandable language? What is the procedure for making and resolving complaints?

How did the hospice respond when you made the very first contact with them? How a hospice responds to your first call for help may be a good sign of the kind of care to expect.

Emergency
Does the agency have an emergency plan in place in case of a power failure or natural disaster? Ask to see a copy of the plan. In case of an emergency, you need to know whether the agency can still deliver its services to your home.

Services
How quickly can the hospice start services? What are its geographic service boundaries? Does the hospice offer specialized services such as rehabilitation therapists, pharmacists, dietitians, or family counselors when these could improve your comfort? If needed, does the hospice provide medical equipment or other items that might improve your quality of life?

Limits on treatment
During your first visit be sure to talk about all of the treatments you are currently getting. If you want to continue these things you must make that clear to the hospice provider. Some hospices will not cover things like dialysis, total parenteral nutrition (TPN, or intravenous feedings), blood transfusions, or certain drugs. But some hospices, most often the bigger ones, do offer open-access care which allows you to add hospice care to your current medical treatment. Still, this is not always an option. Find out how the hospice would handle your current treatments before committing to their services.

Inpatient care
What are the program's policies regarding inpatient care? Where is such care provided? What are the requirements for an inpatient admission? How long can the patient stay? What happens if the patient no longer needs inpatient care but cannot go home? Can you tour the inpatient unit or residential facility? Which hospitals contract with the hospice for inpatient care? What kind of follow-up does the hospice provide for inpatients? Do nursing homes contract with the hospice? Does the hospice provide as much nursing, social work, and aide care for each patient in the nursing home as it does in the home setting?
Patient's rights and responsibilities
Does the agency explain you rights and responsibilities as a patient? Ask to see a copy of the agency's patient's rights and responsibilities information.