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Hospice-Inspired Care For Children

Do dying Children have needs that might be met more adequately by hospice-inspired care?

*case study of Marie

*thoughts of Ida Martinson, a nurse who has played a significant role in the development of palliative care programs for children

Hospices For Children

1) Camp Mariposa

2) Oasis Children's Cancer Hospice

3) Derian House Children's Hospice

*the house helps parents bridge the gap between needing to cling to a child as long as possible and having to let go

-currently assists 170 families

-the house does not charge for the hospice care provided

-supported by about $800,000 annually in donations

New Therapy and Fund Raisers In Childrens' Hospice

1) Episcopal Schools Art at the Park

2) Griefdramatics

Case Studies and Personal Stories of Hospice

1) *Mother's Last Moments; A Daughter's Experience

Then Came the Storm

The Calm After the Storm

2) *Helping Mrs. Doe: Exerpts from a Clinical Record

Members of the Hospice team visited Mrs. Doe regularly, looked after her medications, and made visit-by-visit reports.

These were some of the wishes feelings, and problems of the patient:

These were some of the services that the registered nurse representative of Hospice provided:

3) My Aunt

Hospice provided:

4) My Grandmother

Since she lived alone, Hospice provided:

"In spite of distressing symptoms, the sensitive and effective care of Hospice allows families to keep their lives together through the chaos."

-Robert J. Kastenbaum Death, Society, and Human Experience

"Whenever we enter this world we are surrounded by love, comfort, and care. Don't we deserve the same when we leave?"

Hospice quotation, appropriate for both children and adults

What Is Hospice?

When medical science can no longer add more days to life, hospice adds more life to every day.

Who uses hospice?

Hospice is for patients whose illnesses are no longer responding to aggressive, cure-oriented treatments, and who need pain relief and management of physical symptoms, as well as emotional and spiritual support.

Hospice patients typically are in the last six months of life.

What Is The Philosophy And Practice Of Hospice?

Hospice can be traced back to the times of early western civilization. It was used to describe a place of shelter for weary or sick travelers on long journeys. This term was first applied in 1967 at the St. Christopher's hospice in London. Around the world today, hospices are growing due to their emphasis of providing humane and compassionate care for the terminally ill. Hospice care is designed to provide comfort and support to patients and their families in the final stages of terminal illness.

Hospice care differs from other types of healthcare by offering sensitivity and support to people in the last stages of their illness. Hospice offers palliative care and treats the person rather than the disease. It's emphasis is on quality rather than length of life. Hospice does not try to speed up or slow down the dying process. It simply provides interdisciplinary care that focuses on the patient and the family as the unit of care. This interdisciplinary care is focused towards making the last days to months of life as comfortable and as productive as possible.

Hospice is used by various people with different health conditions. These patient's health condition's are no longer responding to cure-oriented treatments and they are in need of pain relief and management of their symptoms. Hospice services are provided for patients with end-stage heart, lung , and neurological disorders, cancer and AIDS as well as others. Whatever the disease hospice provides professional medical care, to manage pain and other symptoms, and to meet the social, emotional, and spiritual needs of each patient and their families.

The Cost of Hospice Care

* Studies a decade ago, conclude that hospice has not been found to increase the cost of terminal care and compared to nonhospice patients it is a substantial savings.

* The reason for these savings have been found that conventional care has been more intensive such as chemotherapy, radiation therapy, and surgery in the last few weeks of life, as well as more tests. Also hospice patients spend more time at home and not in the hospital

Who Pays for Hospice Programs?

Initial Funding:

Ongoing Financial Support:

Reimbursement for Services:

* Medicare

* Medicaid

* private insurance carriers

Who Pays For Hospice Care?

Services Offered by Community Hospice

For Medicare and Medicaid Clients:

Community Hospice has a commitment to provide its services to all people who seek and are eligible for Hospice care, regardless of their ability to pay.

History of Hospice

The Modern Hospice Movement came to the United States in the early 1960's. There are many significant milestones between the 1960's and the present, which have shaped hospice care in the U.S. into what it is today. The Modern Hospice Movement is credited to Dame Cicely Saunders. In 1968, she founded what would become the model for the modern hospice, St. Christopher's in Suburban London. Dame Saunders came to the United States in the early 1960's for two lecture tours. Her speeches and demonstrations inspired the hospice movement in the United States. A small group of volunteers, with Dame Saunders as their mentor, opened the first hospice in the U.S. in 1974 in Connecticut. As the hospice movement grew, volunteers opened a hospice in New York, St. Paul Marion County, and other cities across the country. Hospice Inc. sponsored the first national gathering of hospice workers with attendants from seventeen different states. The increasing number of hospice care providers identified a need to create an organization, which would bring unity to this newly developed health care provider community. As the hospice movement continued, the demand for hospice services became greater that what the volunteer agency could provide. As a result, the government recognized the need to establish a payment source for hospice services. Late in 1978, the Health Care Financing Administration awarded 26 demonstration project grants to hospices in 16 states. The Medicare benefit was activated in August of 1982 as a result of the data collected from these demonstration projects.Today there are over 2500 hospices in the U.S. and the National Hospice Organization estimates that in 1994, 340,000 patients received hospice care. This means that a hospice program (Employee Orientation Manual) cared for one out of every seven deaths in American from all causes.Present attitudes on death and dying vary from population to population and religion to religion. The modern hospice movement is not attempting to change or infer attitudes about death and dying. The modern hospice wishes to recognize a dying, incurable patient, and create an environment suitable for a dignified and comfortable death for the patient and family. The modern hospice will accomplish these goals by emphasizing palliative care and symptom management rather than curative care and experimental treatments. The history of the Hospice of the Bluegrass Organization can best be told in the words of the CEO Gretchen Brown. "Beginning a small scale volunteer effort, the hospice movement has grown into a major healthcare provider. Demand for home-based care through hospice has expanded tremendously since those early years. Here is a time line of 20 years of care:
20 Years of Care

Hospice of Bluegrass has served 10,400 patients during its history. Here are a few highlights of the past years:

Description of Presentation Research

The research completed by the group consisted of Internet surfing, consultation with Hospice professionals and the use of an audiovisual aid. The Hospice Foundation of America, and The National Hospice Organization provided the website information. The hospice professionals contacted were from Community Hospice of Ashland, and Hospice of the Bluegrass. These organizations provided pamphlets that were distributed during our presentation. The audiovisual aid was borrowed from the Health Sciences Learning Center and was titled Hospice Care: An Interdisciplinary Approach. The book Death, Society and the Human Experience by Robert J. Kastenbaum were also used to obtain information (pg. 119-145). The information provided by all these resources was used throughout our presentation.


I) This presentation focused mainly on the philosophy and guidelines of Hospice, full-service and partial-service, palliative care, Dr. Kevorkian, what Hospice is like for a patient, adult respite care, Hospice-inspired care for children, case studies, pain control, cost, and access to Hospice. The main ideas of the Hospice care for children can be seen in the attached copies of overhead materials and include such ideas as case studies, feelings of family members with terminally-ill children, different locations and descriptions of children's Hospices, and types of therapy for terminally-ill children. The Hospice case studies presented described two cases in the book, as well as two personal stories from Chris' family.

The presentation went fairly well, but we received such comments as "people read their presentations," and "people spoke with a monotone voice." We believe, however, that Hospice is a serious topic and can not really be made entertaining. Also, group members read parts of their texts to ensure that they covered everything, since there is so much material about Hospice.

II) Chris started by reading what the textbook had to offer about children's Hospices and case studies of Hospice. She then browsed the Internet and located numerous descriptions of Hospice programs for children across the country, as well as new techniques of therapy for terminally-ill children. Next she read some pamphlets from a Hospice center to find out more about children in Hospice. Last, she gathered details from family members about her aunt's and grandmother's experiences with Hospice to report as case studies.