Children and adolescents who have a terminal illness may benefit from continuing in the school because of socialization, but expectation should be realistic.It is usefull to have a plan to allow the teachers and other pupils the opportunity to understand the medical situation and to be aware of the course of the illness.
If there is awareness of the potential for a crisis to occur at school, it is necessary to define the responsibility of the school personnel in the event that an emergency situation arises.If it is appropriate, a DNR (Do Not Resustitate) order is written so that the child is not subjected to aresuscitation that is not indicated, should a cardiac arrest occur.There should be a physician order as well as permission from the parents in writing.It is sensible for the child to wear an ID bracelet indicating the DNR order.The school does not legally have to honor the DNR order and, at the beginning of the school year, parents should present the case to the school board for approval.
Death and Dying
Infact mortality is the death rate during the first year of live.The rate varies from country to country.At the beginning of the 20th century in the United States the rate was about 200 infact per 1,000 live birth and in 1994 it was 7.9 per 1,000 live birth.Despite these numbers the United States lags behind many developed countries.Japan has the lowest infant mortality rate and the United States does not figure in the 20 lowest mortality raet countries.After 1 year of age there is a dramatic change in the causes of death with injuries being the most common cause.The death rates have increased since the early 1900s among African-Americans and males.Mortality rates have declined in most areas in childhood expect for injuries.Drowning and burns are the second and third leading causes of death in boys aged 1-14 years and these diagnoses are reversed in girls.Firearms are a major cause of death in boys but not in girls.
Children who have been ill for a long time often understand more about death and dying than would be expected by their age.This is particularly si if the child has been attending a clinic or has been hospitalized and there has been exposure to other children who have died, perhaps of the same condition.How much information about dying and death is communicated to the child by clinicians is usually discussed with the parents.Adjustment after a child dies may be a very difficult and long process for the family.It is usually considered that after an interval of time, resumption of activity and work are beneficial.
Hospice
The first true hospice was opened in Sydenham in Southeast London in 1967 and named St. Christopher’s.It was described by Dame Cicely Saunders, who founded the modern hospice movement, as a “safe haven for the dying.” The role of hospice has been to manage pain and the symptoms of disease and to provide grief support for the terminally ill and their families.Hospice means care for the dying.Its role is to help patients and families make the most of the time that remains and to make the process of dying more comfortable and bearable.It is implied that hospice is not going to cure disease and that dying appears inevitable.Medical care that has been directed toward fighting a disease or an illness is no longer to be necessary.
There has been a major change in the last few decades about how and where we die.There is more discussion about issues of dying and terminal care has more options.Having said this, the picture for children could be better.It used to be that the majority of children with a terminal illness died in the hospital.Hospices do wonderful work with terminally ill patients and their families and may be a consideration for a child.It is often difficult to make a decision in the midst of a crisis and it helps to have the opportunity to make decision in advance.One of the problems with choosing hospice is coming to the realization that death may be imminent and accepting the finality of the situation.
The admission policies for hospice may be complicated and should be looked into in advance. There are specific criteria that need to be met and there are exclusions which vary from institution to institution.For example, if the level of nursing care is beyond the capabilities of the hospice, admission will be refused.Although hospice is a place that care for patients who are dying, their philosophy is to make the time of living as positive and comfortable as possible.Hospice provides comfort or palliative care which isdirected at the symptoms of the illness.The technology that is used in conventional medicine is not going to be avaiable in the hospice setting and CPR is not appropriate.
The majority of patient who seek hospice have cancer.It is not intended to be an environment for neourologically devastated children who are stable and may have a long life span.Although only 1percent of admissions are less than 18 years of age, many hospices will accept children.The usual admission criteria are:(1) a medical diagnosis of a terminal illness that is likely to end in death within 6 months; (2) the patient is seeking comfort-oriented care rather that attempting to cure a disease or illness; (3) the patient and the family as well as the physician consent to care; and (4) consent is given for DNR (do not resuscitate) that implies that CPR will not be given.
Hospice functions with an interdisciplinary team.There is a medical director and nursing and social work staff who coordinate the services.Hospice provides much of the care in the home with home visits at least weekly.The nurse will communicate with the physician.If the chlid is at home, much of the responsibility of the nurse will be to be provide education to the caregivers.Between visits, the family will have access to an on-call nurse who will be able to assist.
The social worker responds to issues related to the family and the environment.Much of the work will involve insirance issues, financial issues, legal questions, and helping with the arrangements after death.It is likely that the social worker will provide counselling for the patient and family.This will mostly focus on the present situation, resolving conflicts and fears related to dying.
The hospice team may include an aide who functions in many ways.Aides provide care for those unable to look after themselves. This may include bathing, mouth or hair care, skin care and generally helping in the activities of daily living.Aides will tend to visit the home a few times a week for 1-2 hours per visit depending on the needs of the family.
Most hospices will have a chaplain who is able to provide spiritual care for the terminally ill.This tends to be nondenominational and nonsectarian.Alternatively there will be someone on call in the community who can provide assistance that is appropriate for the family.
At some point there may be consideration that the care can no longer be provided in the home and in-patient hospice services may be appropriate.In patient hospice care may be in a freestanding structure or may be part of a hospital or nursing home that has been designated for such care.Such units usually are able to admit patient for short periods.
There are various types of hospice.They may be communitybased, independed nonprofit corporations that are governed by a community board of directors.Home health agency-based hospices are part of home-care agencies which may be a separate unit within the organization or intergrated into the home0care programs.Hospital-based hospices are part of the parent organization but still may provide services in the home.
Certification of hospices implies that they are eligible to participate in Medicare and if the state has a Medicaid hospice benefit (half do) then they are eligible also for Medicaid.Joint Commission on Acccreditation of Healthcare Organizations (JCAHO) no longer accredits hospicesn and so there is no national program for evaluation of hospices.Medicare benefits are paid on a per diem basis depending on the level of services.It is implied that all of the services that are needed will paid from this flat rate.
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