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Hospice is a way of caring for the terminally ill that helps them to live their final days to the fullest, as free as possible from disabling pain and mental anguish, usually in the setting of their own home. Hospice is concerned with the whole person, with emotional as well as physical problems, and also with the family's needs.

Is hospice a place that takes care of the dying?
No. Hospice is primarily a concept of care, not a specific place. It is a special way of caring for patients, usually in their own homes, in their final days. But most important, hospice is about living, not about dying.

What does that mean?
Hospice is concerned about enhancing the quality of a dying patient's life, no matter how short. It is a program that emphasizes the dignity of the individual and the strength of the family. Hospice personnel give care when it is no longer possible to cure. They also help patients find a sense of peace and dignity.

How does hospice do this?
Hospice follows a concept of care that has developed carefully over many years. It is a combination of medical and emotional care that involves not only the patient, but also the family or others concerned with caring for the patient. Medical attention is directed toward the patient's physical comfort and mental alertness.

Who is a potential hospice patient?
A hospice patient is someone who has a limited life expectancy (less than 6 months) and is no longer receiving treatment toward a cure, but requires very close medical attention. The patient must choose hospice care with a clear understanding of its philosophy and services. There must be a family member or other appropriate person(s) willing to care for the patient at home, with help, if necessary, and to share in decision making.

Why does someone seek hospice care rather than other types of care?
Many patients who know they are dying want to stay at home in familiar surroundings. They do not want to be in an impersonal hospital or undergo many tests and procedures. They want to spend their last days in the normal routine of their lives, surrounded by family and friends.

Can hospice really do this?
Yes. A basic part of hospice philosophy is that patients should be able to choose how they will spend their final days. They should be kept as comfortable and as free from pain and other disabling symptoms as possible in order to enjoy those days. Hospice has had long experience in controlling pain and limiting distress of all kinds.

Can pain really be controlled?
Yes, it can.

Who takes care of the patient?
Family members or friends coordinate the care of the patient at home with the support and guidance of the hospice team. As required, a member of the team provides care directly.

What is a hospice team?
The team is a group of hospice staff members who coordinate their efforts on behalf of the patient and family. The team usually consists of a nurse, physician, social worker, trained volunteer, dietitian, and chaplain. Other trained personnel are called upon if and when the need arises for example, health aides, practical nurses, and physical therapists.

How often does someone from hospice visit a patient's home?
Members of the team make regular home visits, some on a weekly basis or more often. The schedule is adjusted to a patient's needs. In addition, a nurse and physician are on call 24 hours a day, 7 days a week for phone advice and for visits whenever necessary.

What does the hospice team do?
The nurse makes scheduled visits to the home and is the primary contact between the patient and family and all hospice resources. In addition to nursing duties, he or she is trained to recognize and respond to emotional and psychological problems. Home care team members can counsel on practical matters of concern and guide the family in caring for the patient. They will also arrange for necessary supplies or additional help when it is needed. In short, the home care nurse and his or her team become the family's and the patient's central support system.

What kind of "practical matters" come up?
Some concerns that would ordinarily be minor loom very large under stress conditions for example, skin care or how to bathe someone in bed. On the other hand, a patient may need the services of a lawyer to make a will. From large problems to small, hospice can help. The hospice nurse knows how to listen and where to seek help.

Can patients continue under the care of their personal doctors?
Yes, indeed. In fact, Hinsdale Hematology Oncology physicians will continue caring for their patients in conjunction with hospice.

Must a patient's physician recommend the patient to hospice?
No. Anyone can. Usually the patient's family or friends make the first call to their local hospice. However, a patient's attending physician must be consulted before actual admission.

Can a patient withdraw from hospice after starting in the program?
Yes, anytime.

What if a patient's care requires skills that the family cannot provide?
Many hospices have an inpatient unit to provide short term, around the clock care when needed for the control of symptoms. Many are licensed as special hospitals that provide acute level care in a home like setting. Visiting hours are unrestricted, and every effort is made to adjust to the individual's needs and wishes. Usually the aim of an inpatient stay is to prepare the patient and family for a return to home care. Hinsdale Hospital provides this kind of unit.

When should someone seek hospice care?
The earlier, the better. The greatest service can be rendered when there is time to fully understand the patient's and family's needs and to develop a suitable plan of care. Perhaps most important of all, if a relationship of trust between patient and hospice can develop over several months, the patient enjoys the full benefit of hospice care.

But how does one know it is time?
Experience has shown that certain events often trigger the first contact with hospice for example, when a patient realizes that cure is not possible or that treatment is aimed only at maintaining comfort. In addition, there may be significant signs of family stress and a sense of helplessness. This may be the time to call hospice.

Should one call hospice even though uncertain?
Yes. If hospice care is not suitable, you will be told. It is not the right choice for everyone. But the earlier hospice can work with patient and family, the more effective it can be.

What are the actual steps toward entering the hospice program?
With the permission of the patient, the hospice admissions team and the patient's physician discuss the patient's medical condition to determine if he or she is appropriate for hospice care. After that, a hospice nurse visits the patient to answer questions, discuss and obtain consent forms, and begin to plan for the patient's care.

How is payment for care made?
All or part of hospice services are covered by Medicare, Medicaid, Blue Cross, and most insurance companies. Medicare has a special hospice benefit; ask the admissions office for more information.

What if one doesn't know if insurance covers hospice?
Call your insurance company or call your local hospice.

What if one doesn't have adequate resources for payment?
Patients who request hospice care and who qualify are not denied services based on inability to pay. Financial assistance may be available. A representative from the hospice finance office will help in assessing financial need.

Aside from medical care, how can the patient be helped?
The emotional stress and practical problems faced by a patient and family often can be as great a concern as the disease. How is the fact of death going to be faced by them? How will they cope? Hospice nurses, social workers, and other team members are specially trained to counsel, assist, and aid. All hospice resources and experience are geared toward helping families facing terminal illness. In addition, a trained volunteer will be available to lend a helping hand to the family by doing errands or even staying with the patient when the family needs a break. Hospice calls forth a wide circle of care.

Can a patient really be cared for at home?
Yes. Thousands of patients have, with the help of hospice. And the benefit is not only to the patient but also to the family members and others involved who know they have given the truest measure of their love. Hospice has follow up care for survivors who seem to recover from their loss with added strength because they actively have helped to take care of their loved ones.

What kind of follow up care does a family receive?
Hospice can offer the support of meeting others who have recently lost a loved one. Bereavement counselors can provide guidance on personal problems that may arise or the friendship of a trained volunteer who understands what has happened. Special activities are available for children who have experienced a loss. For a year and a month after the death of the patient, hospice will be in touch. Best of all, perhaps, the family knows during these months of adjustment that "hospice is there."

Is hospice only for adults?
No. Children require special attention as part of the family. At times the focus is helping the child deal with the impending death of a parent or of a sibling. At other times, it is the child who is dying, and hospice is there to help provide the support and care needed.

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