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Hospice

2004-01-01 13:00:00

Is hospice a facility or service?

: Are pediatric patients treated in the same type of facility that an older hospice patient is?

Question: Are pediatric patients treated in the same type of facility that an older hospice patient is?Answer: Hospice must first be understood as a service rather than a specific facility or location.    Hospitals, for example, are associated with a building/facility in which patients are provided highly skilled and often very technical services to take care of medical needs.Hospice services are provided in a variety of settings: home, long term care facilities, assisted living residences, and (in some hospice programs) in inpatient units. This inpatient facility is for hospice patients with acute needs.   Patients who are admitted to this unit may require more intensive care for pain control and symptom management than can be provided in the home setting. In some instances families may not be able to give all the care needed to keep a loved one at home, and as death appears to be imminent, their loved one is admitted to the inpatient unit.Regarding the question of pediatric patients and hospice, there are many variations among different hospice programs. Some programs, for example, do not admit patients under a certain age. However, most hospice programs do not have admissions limitations determined by age. Admission is dependent on prognosis:   determination made by the referring physician that according to her/his best reasonable medical judgment the patient has six months or less to live, no matter what the age of the patient or the underlying life-threatening condition.There are even cases of patirnts who have yet to be born. Prenatal testing had determined the baby had a congenital condition that would not allow it to live beyond a limited time after birth. The mother wanted to take the baby home to care for it lovingly until death, but realized she needed support to manage the care required. She and her unborn child were taken under care immediately, and this continued for several weeks after birth. This case also illustrates that the unit of care in hospice is the patient and the family.I suspect the reader's question as to whether "pediatric patients are treated in the same facility as older patients" also relates to the type of care required for pediatric cases. We all react differently to a child's death versus that of an older individual. Children are not supposed to die. As has often been stated, parents expect to be buried by their children; they do not expect to bury their children. Also, a child's death seems so unfair. It is considered totally untimely; the child is cheated out of a normal span of life. Hence, the emotional strain is frequently much more heightened when a child is dying.    The hospice providing care must be aware of this and pay even closer attention to the family than might be the case of an older individual, for example, the death of a great grandparent.    The death of an older individual does not affect the functioning of the family unit in the same way as does the death of a child.     In pediatric cases, the psychosocial/spiritual services provided are especially necessary and invaluable.In addition to the strain on the family, this can also be difficult for the hospice staff providing care for the pediatric patient.   Many of these hospice staff members are also young parents, and caring for this young patient who is dying makes them aware that this could possibly happen to one of their own children.   The hospice administrative staff needs to be aware of this and provide appropriate professional support to its patient care staff.Caring for pediatric patients may offer unique challenges to the hospice staff, but at the same time these challenges are offset with the satisfaction of knowing critical support has been given to the family going through a difficult time.   A volunteer recalls how she held a three month old child in her arms as it died, providing it warm comfort in the moment of transition.  She states it is a moment she will never forget.Even though most hospice programs are receptive to pediatric patients, at the same time pediatric patients comprise a small portion of those cared for by hospice.   This is so for various reasons, the primary one being the excellent curative medical interventions modern medicine has available, preventing the untimely deaths of children that occurred in previous generations.    But due to the issues previously mentioned, frequently, aggressive curative interventions are extended beyond a realistic expectation of a beneficial outcome.  It is extremely difficult to acknowledge that "enough is enough" when it comes to treating a child. Modern medicine strives mightily to prevent children from dying.  This well-intended effort often results in hospice not being involved for the final part of a dying child's life journey. As I have stated in previous articles, hospice dare not be seen as a program about death.   Hospice is all about life and living: maximizing that gift to the last second, to the last breath taken.Hospice is about care-giving, not cure-giving.    We as adults want to live every moment of our lives as fully and as well as possible.   So, too, do children. As death is imminent, adults want the opportunity to put closure on their life's journey: to exchange expressions of love, to resolve conflicts, to say goodbye, to reassure that despite the painful and sad separation of death things will be ok.  So do children.  A good hospice program will facilitate these exchanges between the dying child and her/his loved ones.   We should not cheat our dying children out of these opportunities by denying them access to hospice.