Do dying Children have needs that might be met more adequately by hospice-inspired care?
*case study of Marie
-The decision to select Hospice care involves the acknowledgment of impending
death
-It is very difficult to "let go" of a child as one might
let go of an adult, so Hospice care for children has not been common in
America
*thoughts of Ida Martinson, a nurse who has played a significant role in the development of palliative care programs for children
-Hospice care for children provides education and reassurance for parents,
and it helps lessen their distress
-The opportunity to stay home in a child's last days helps him avoid such terrors as being alone
Hospices For Children
1) Camp Mariposa
-annual service provided by Nathan Hospice
-main focus is fun and laughter
-children explore the healthy processes of grief
-under professional care, children discover:
-it's ok to talk about loss
-it's ok to remember those who have died
-it's ok to grieve
-it's ok to cry and be angry
-shared experiences help put life in perspective
-facing death will provide new, helpful skills
2) Oasis Children's Cancer Hospice
-still under design
-goal of the facility is to build a respite care home in London, England for children with cancer or terminal illnesses
-project goal is to raise 2 million pounds for the facility
3) Derian House Children's Hospice
- "To discover that your child's life is to be cut tragically short
is probably the worst thing any parent can contemplate." --Derian
House
-The Derian House is a haven for such families
-the house provides children with happiness, fun, and friends in their
short lives
-opened October, 1993
*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
-Bogue Falaya Park, Covington
-50 of the area's best painters, jewelers, and craftsmen display and sell their work
-the goal is to encourage children to create their own works of art and give back to the community
-admission ticket sales go to Hospice
2) Griefdramatics
-new approach to help grieving and distressed children heal using creative drama as expressive therapy
-geared to minister to a child's emotional and mental health
Case Studies and Personal Stories of Hospice
1) *Mother's Last Moments; A Daughter's Experience
They were very close and at the end were able to share:
-a time of closeness and serenity together
-touching--make-up, body lotion, hair brushing
- "She looked more beautiful and glowing than at
any time during her illness."
Then Came the Storm
"Oh, no! You're not going to take my mother away!"
"They're not going into the room!"
"I resented the people who were supposed to be there,
the things that were supposed to happen, I resented it all!"
The Calm After the Storm
"I realized she had gone without a struggle."
"She looked very good."
"It was really right, it was all right."
"It was the right time, and she was ready to go."
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:
-At first contact, Mrs. Doe said that she and her husband could talk about her situation, but she didn't want their children to know about it yet.
-She was not afraid of death but was "scared of pain and really panicked...."
-A "pleasant lady" who spoke openly about her
condition, Mrs. Doe "cried when she talked about leaving her husband
and children."
These were some of the services that the registered nurse representative of Hospice provided:
-she taught Mr. Doe how to give his wife good skin care treatment so he felt more useful
-she monitored medication, brought in an oxygen tank, shared updates in the treatment plan, did much listening, and offered suggestions when appropriate
3) My Aunt
-diagnosed with an inoperable terminal brain tumor and
lived less than six months
Hospice provided:
-professional medical service in the home
-expertise in what to expect and when
-education to her father, husband, and son about death and the dying process
-information about the stages of death and how to deal with them
4) My Grandmother
-had lived for many years with chronic leukemia
Since she lived alone, Hospice provided:
-a sense of someone always there to care
-moral support to face the inevitable
-the experience necessary to cope with her final days
-the courage to "keep on a keepin' on"
"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:
* grants
* contributions from private foundations
* local government funds
* individual contributions
Ongoing Financial Support:
* local fund-raisers
* memorial gifts
* voluntary contributions
* fees for patient services
Reimbursement for Services:
* Medicare
* Medicaid
* private insurance carriers
Who Pays For Hospice Care?
Hospice care is completely covered by Medicare except
for the 5% monthly related medication fee, although community hospice does
not bill for this co-payment. Many HMOs and commercial insurance carriers
now cover Hospice care also.
Services Offered by Community Hospice
For all clients with or without payment sources:
* Weekly nursing visits and as needed based on
the client's condition. Also, 24 hour availability of nursing staff for emergency situations.
* Medical social worker services.
* Chaplain services.
* Certified home health aide services and homemaker services if needed.
* Interdisciplinary bi-weekly staff meetings.
* Volunteer services if requested.
* Bereavement services for one year after the client's
death.
For Medicare and Medicaid Clients:
They will receive all of the above services plus:
* 100% payment of all drugs.
* Necessary supplies related to home care.
* Nutritional supplements.
* Durable medical equipment is covered.
* Labs, x-rays, and etc. related to the terminal illness are covered if ordered by the physician.
* In-patient hospital care related to the terminal illness is covered when ordered by the physician.
* Respite care for up to 5 days in a nursing home is covered if needed.
* Therapy, such as physical or occupational, related to
the terminal illness are covered when ordered by the attending physician.
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:
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.
Self-Evaluation
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.