Frequently Asked Questions

• What is Hospice?
• How is Hospice Different?
• How do I choose a Hospice?
• What kind of services should I expect from a hospice?
• How does hospice care begin?
• What kind of support is available to the family/caregiver?
• What role does the physician play?
• Will I be the only hospice patient that the hospice staff serves?
• What role does the hospice volunteer serve?
• How does the hospice work to keep the patient comfortable?
• Is hospice available after hours?
• Can I be cared for by hospice if I reside in a nursing home or other type of long-term care facility?
• What happens if I cannot stay at home due to my increasing care need and require an alternative place to stay during my final phase of life?
• How do I ensure that quality hospice care is provided?
• Do state and federal reviewers inspect and evaluate hospices?
• How do I pay for hospice care?
• When is the right time to ask about hospice?

1. What is Hospice?

Hospice care is considered the model for quality compassionate care for people with a life-limiting illness. Hospice encompasses expert medical care, pain management, and emotional and spiritual assistance designed to meet the patient’s (and their loved ones’) needs and wishes.

Hospice care is delivered in the patient’s home, freestanding hospice centers, hospitals, nursing homes, and other long-term care facilities. Hospice care is open to any terminal patients regardless of age, religion, or race. Caring for the patient becomes the focus in hospice—as opposed to curing the patient.

An entire team works to address the patient’s and family’s needs. This team consists of staff in the medical, spiritual, therapeutic, and social work professions. Specially trained volunteers also assist in the care of the patient and provide respite and comfort to their loved ones.

Hospice Cares Compassionately for Terminally Ill People by:

• Providing comprehensive palliative care when there is no cure, with an emphasis on pain and symptom control.
• Enabling a person to live the last weeks and months of life as fully and comfortably as possible, with dignity, at home or in a home-like setting. Today, ninety-five percent of hospice days of care are provided at the patient's residence.
• Helping others accept death as a natural part of life, seeking neither to hasten nor prolong the dying process.
• The Hospice Care Team--Hospice care is provided on an as-needed basis - 24 hours a day, 7 days a week, by an interdisciplinary team consisting of:
  • Physicians
  • Nurses
  • Home Health Aides
  • Social Workers
  • Spiritual Care Counselors
  • Bereavement/Grief Counselors
  • Specially Trained Volunteers
  • Therapists

2. How is Hospice Different?

• Hospice offers palliative, rather than curative treatment. Under the direction of a physician, hospice uses sophisticated methods of pain and symptom control that enable the patient to live as fully and comfortably as possible.
• Hospice treats the person, not the disease. The interdisciplinary hospice team is made up of professionals who address the medical, emotional, psychological, and spiritual needs of the patient and loved ones.
• Hospice emphasizes quality, rather than length of life. Hospice neither hastens nor postpones death. It affirms life and regards dying as a normal process.
• Hospice considers the entire family, not just the patient, the unit of care. Patients and their loved ones are included in the decision-making process, and bereavement counseling is provided to the family after the death of their loved one.
• Hospice offers help and support to the patient and family on a 24-hour-a-day, seven-days-a-week basis. For hospice patients and their loved ones, help is just a phone call away.

3. How do I choose a Hospice?

The following are questions to consider when choosing a hospice:

CAN I RECEIVE HOSPICE CARE IN MY HOME? Hospice care takes place in the home. For some, “home” may mean a house or an apartment. For others, it may be some form of extended care facility, such as a nursing home or assisted living facility. In addition, there are hospice residences exclusively for hospice patients.

IF I STAY IN MY HOME, WHO WILL CARE FOR ME? The majority of hospice patients live in their own home with the help of a family member or friend who serves as the “primary caregiver.” The caregiver, however, is not alone. Nurses, social workers, doctors, volunteers, bereavement counselors and others that comprise the hospice team help the caregiver provide for the patient’s daily needs.

HOW CAN I FIND A HOSPICE NEAR ME? The Illinois Hospice & Palliative Care Organization maintains a complete and current listing of hospices within the state, as well as a national listing in the event you are seeking help for a loved one living elsewhere in the country. You may call IL-HPCO at 888-844-7706.

ARE ALL HOSPICES THE SAME? All full service licensed hospices in Illinois provide the same basic core services. Please make sure the provider is licensed as a FULL SERVICE. Hospices may be freestanding, community based organizations, or they may be affiliated with hospitals, home health agencies, health care facilities, or health care systems. Both non-profit and for-profit hospices are required to provide the same core services.

ARE THERE STANDARDS FOR HOSPICE PROVIDERS? Medicare certifies the majority of hospices nationwide and Illinois licenses providers in the state. In addition, most Illinois hospices currently belong to the Illinois Hospice & Palliative Care Organization, a non-profit organization, which promotes access to quality hospice care in our communities. Many hospices also maintain membership in the National Hospice & Palliative Care Organization, which encourages sharing of ideas and solutions at the national level. Many hospices have become accredited by the Joint Commission on the Accreditation of Health Organizations or by Community Health Accreditation Program, Inc. (CHAP), to further ensure quality care.

WHO IS ELIGIBLE FOR HOSPICE? Hospice serves patients with a terminal illness resulting in a life expectancy of six months or less as determined by the patient’s physician. Care is provided regardless of diagnosis, age, gender, nationality, race, creed, sexual orientation, disability or ability to pay. The patient makes the decision to choose hospice in partnership with his or her physician and the hospice team, after a thorough review of all the care options. In the state of Illinois, the time frame has been extended to one year, although Medicare and Medicaid is restricted to six months.

WHEN IS IT TIME FOR HOSPICE? When the goal of treatment begins to shift from curing the illness to providing comfort, it is time to consider hospice. This time may come well before a physician indicates that the patient’s life expectancy is six months or less (or one year in Illinois for non - Medicare and non Medicaid patients). Sadly, many people wait until their final days to involve hospice. By contacting the hospice early in the diagnosis, the patient and family reserve time to understand their options and choose the path that will have the most positive impact on quality of life. The best time to learn about hospice is before your need it.

WHY SHOULD WE CHOOSE HOSPICE? The decision to choose hospice is a very personal one. It directly involves the patient, family physician, and any loved ones that may serve as caregivers. Here are a few things you should consider.

• Hospice’s expertise in palliative, or “comfort” care, assures the patient of state-of-the-art pain control and symptom management.
• Hospice enables patients to focus on living their remaining days fully at home, among family and friends.
• Hospice’s emphasis on family involvement—understanding that everyone’s definition of “family” is unique—helps individuals to support each other during this time of life.

WHAT MAKES HOSPICE CARE UNIQUE? Hospice care centers on the patient and family. The goal of the professional hospice care team is to empower you to make your own choice with its support and assistance. The team serves as your advocate, helping you to access the information and resources you need during this very challenging time. In addition to providing the care directly, hospice tem members serve as teachers, enabling the family to care for their loved one at home. Hospice recognizes that the family and caregivers need and extra measure of support both during and after their experience of caring for a terminally ill patient.

4. What kind of services should I expect from a hospice?

• Management of patient’s symptoms and pain
• Assistance with emotional, spiritual, and psychosocial aspects of dying
• Drugs, medical supplies, and equipment
• Instructions to family on how to care for the patient
• Special services such as speech therapy or physical therapy when needed
• Short-term inpatient care when pain or symptoms increase to the point that patient is difficult to treat at home; or when the caregiver needs respite
• Bereavement care and counseling to surviving family and friends

There are two types of care: home-based and inpatient.

Home-based care includes routine home care (in which the patient receives hospice care at the place he/she resides) and continuous home care (in which the patient receives care by licensed nursing staff on a continuous basis at home during periods of crisis and only as necessary to maintain the terminally ill patient at home).

Inpatient care consists of general inpatient care and impatient respite care to provide respite to the caregiver.

5. How does hospice care begin?
Hospice care often starts as soon as the patient's doctor makes a formal request or referral. Usually a hospice program representative will make an effort to visit the patient within 48 hours of the day the referral is made, providing the visit meets the needs and schedule of the patient and family/caregiver. Care is ready to begin within a day or two of a referral. In urgent situations, service may begin sooner.

6. What kind of support is available to the family/caregiver?
In many cases, family members are the patient's primary caregivers. Additionally, hospice recognizes that loved ones have their own special needs for support. As a relationship with the hospice begins, hospice staff will want to know about the primary caregiver's priorities. They will also want to know how best to support the patient and family during this time. Support can take many different forms, including visits with the patient and family members; telephone calls about the patient's condition to loved ones, including family members who live at a distance; and the provision of volunteers to assist with patient and family needs.

Counseling services for the patient and loved ones are an important part of hospice care. After the patient's death, bereavement support is offered to families for at least one year. These services can take a variety of forms, including telephone calls, visits, written materials about grieving, and support groups. Individual counseling may be offered by the hospice or the hospice may make a referral to a community resource.

7. What role does the physician play?
It is important to find out what the role of the patient's primary doctor will be once the patient begins receiving hospice care. Most often, hospice patients can choose to have their personal doctor involved in the medical care. Both the patient's physician and the hospice medical director may work together to coordinate the patient's medical care, especially when symptoms are difficult to manage. Regardless, a physician's involvement is important to ensure quality hospice care. The hospice medical director is also available to answer questions you or the patient may have regarding hospice medical care.

8. Will I be the only hospice patient that the hospice staff serves?
Every hospice patient has access to an interdisciplinary team consisting of a registered nurse, social worker, home health aide, and chaplain. This team writes a care plan with the patient/family. Typically, full-time registered nurses provide care to about a dozen different families. Social workers usually work with about twice that number. If needed, home health aides, who provide personal care to the patient, will visit most frequently. All visits, however, are subject to the patient and family needs as described in the care plan, and the condition of the patient during the course of the illness. The availability and frequency of spiritual care is often dependent upon the family request. Travel requirements and other factors may cause some variation in how many patients the hospice staff can serve effectively.

9. What role does the hospice volunteer serve?
Hospice volunteers enhance quality of life and help reduce the burden of caregiving. They are generally available to provide different types of support to patients and their loved ones including running errands, preparing light meals, staying with a patient to give family members a break, lending emotional support and companionship to patients and family members, and helping out with light housekeeping.

Because hospice volunteers spend time in patients' and families' homes, it is important for a hospice program to have some type of application and interview process. In addition, hospice programs should have an organized training program for their patient care volunteers. Areas covered by these training programs often include confidentiality, listening skills, signs and symptoms of approaching death, working with families, loss and grief, and bereavement support.

10. How does the hospice work to keep the patient comfortable?
Many patients experience pain and other distressing symptoms as illnesses progress. Hospice staffs receive special training to effectively anticipate, assess, treat, and prevent all types of physical symptoms that cause discomfort and distress. Because symptom management, especially pain, is such an important component of hospice care, many hospice programs have developed ways to measure how well they do in this area through surveys and studies. Hospice staffs work with the patient's physician to make sure that medication, therapies, and procedures are designed to reach the goals outlined in the patient's care plan. That plan is evaluated frequently to reflect changes and new goals.

11. Is hospice available after hours?
Yes. Hospice care is available 'on-call' after the office has closed, seven days a week, 24 hours a day. Most hospices have nurses ready to respond to a call for help within minutes. Some hospice programs have chaplains and social workers on call.

12. Can I be cared for by hospice if I reside in a nursing home or other type of long- term care facility?
Hospice services can be provided to a terminally ill person in a nursing home or long-time care facility. This means the patient receives specialized visits from hospice nurses, home health aides, chaplains, social workers, and volunteers, in addition to other care and services provided by the nursing home. The hospice and the nursing home should have a written agreement in place in order for the hospice to serve residents.

13. What happens if I cannot stay at home due to my increasing care need and require an alternative place to stay during my final phase of life?
A small, but growing, number of hospice programs have their own hospice facilities or have arrangements with freestanding hospice houses, hospitals, or inpatient residential centers to care for patients who cannot reside in a private residence. These patients may require an alternative place to live during this final phase of their life when they need extra care. It is best to find out in advance whether insurance covers this type of care and how the hospice arranges for payment.

14. How do I ensure that quality hospice care is provided?
Many hospices use tools to evaluate how well they are doing in relation to quality hospice standards. In addition, most programs conduct family satisfaction surveys to get feedback on the performance of their programs. To assist hospice programs in these efforts, the National Hospice and Palliative Care Organization has developed recommended standards, entitled Standards of Practice for Hospice Programs as one means of self- and field-evaluation.

Voluntary accreditation organizations may also evaluate hospices to protect consumers. These organizations can conduct surveys and review practices of the hospice, policies and procedures, medical records, personal records, evaluation studies, and more.

15. Do state and federal reviewers inspect and evaluate hospices?
There are state licensure requirements that must be in place in order to protect consumers. Hospices must also comply with federal regulations in order to get reimbursed by Medicare. Hospices also undergo periodic inspections to ensure regulatory standards are being met.

16. How do I pay for hospice care?
Medicare, private health insurance, and Medicaid (in 45 states) cover hospice care for patients who meet eligibility criteria. As with any healthcare program, there may be co-pays and deductibles that families pay to receive care. Many hospices also rely on community support for donations. While each hospice has its own policies concerning payment for care, it is a tradition of hospice care to offer services based upon need, rather than the ability to pay.

17. When is the right time to ask about hospice?
Now is the best time to learn more about hospice care and ask questions about what to expect. Although end-of-life care may be difficult to discuss, it is best for family members to share their wishes long before it becomes a concern. This can greatly reduce stress when the time for hospice becomes apparent. By having these discussions in advance, patients aren't forced into uncomfortable situations. Instead, they can make an educated decision that includes the advice and input of loved ones.