* Professor Emeritus Dept. Hematology/Oncology, G. Gaslini Research Children's Hospital, Genova, Italy
# Responsible Clinical Psychology Unit DIMEL, University of Genova, Italy.
Introduction
Health care of children and adolescents with cancer continues to grow in complexity. While in many cases physicians are winning the fight, quality of life (QoL) is always a problem to face and a challenge, mostly when it is the principal important goal. Today, the strategic approach of pediatrics is the adoption of a global therapy, which includes among active interventions home care, particularly useful to terminally ill patients affected by any disease.
The costs of hospital care are high everywhere, especially those for salaries of staff doing shift work during the whole week. Detailed analysis comparing costs of hospital care towards home care delivered by the same hospital showed that the latter are reduced and that home care is better accepted by patients and families. Because of increasing pressures from shrinking health care budgets, several governments encourage a widespread use of home care to old people, to patients with cancer, mental diseases or AIDS, to early discharged patients, and generally to those affected by any disease treatable at home with constant specialized help and guide by the hospital.
Home care in pediatrics
During the long diagnostic and therapeutic course of a child with a chronic disease pediatricians should always consider whether hospital care is mandatory. When home care delivered by the hospital is adequate, it should be chosen not only to reduce costs but mostly for psycho-social reasons. Families and especially mothers have always been directly involved in the treatment and care of their child, mostly when affected by a severe disease. Today, this involvement is strongly suggested and almost imposed by physicians. Since diagnosis, parents and often other family members are given detailed instructions and information. For this reason, it is not difficult for the family to accept home care as an alternative to hospital care. Many large and important studies on home care are reported in the literature. This process in health care is worldwide, involving both rich and poor countries. Race and culture do not seem to play any role.
Strong motivations support pediatric home care. The life rhythms are better preserved if the whole family is at home. Parents must be taught how to cope and how to talk with their children, the sick ones and their siblings. The dialogue is easier at home. Home care respects the needs of the siblings. Adjustment to daily life is easier at home, taking into consideration the active help of relatives and close friends. Children need stability and honesty.
Pain is a source of great distress for children. When possible, pain control must be obtained or at least tried at home. The child may find a better comfort when in his own bedroom and, if he feels better, he can play at home. When the child is dying the treatment is focused on a good QoL and no more on cure: school aged children and adolescents can feel the change. The difference is impressive if they are followed at home and not only in hospital. Volunteer Associations can help the child's family better at home than in hospital.
Home care for terminally ill children and adolescents
Home care can be very useful in the terminal stage, when QoL is the primary goal. The WHO has defined palliative care as "integrating the psychologic and spiritual aspects of patient care, affirming life, and regarding dying as a normal process; neither hastening nor postponing death, offering a support system to help patients live as actively as possible until death; and offering a support system to help the family cope during the patient's illness and their own bereavement." Recently this aim is considered also for children. Pellegrino underlines the emerging ethical aspects, the responsibility of physicians towards a terminally ill patient in pain, the inadequacy of palliative care when delivered by not adequately trained physicians. Pellegrino also considers the ethical aspects of euthanasia, defined as 'assisted suicide' and the so-called 'slow euthanasia', consisting in high dose sedation of pain not aimed at causing patient's death. The reasons for home care of terminally ill children are many and have been illustrated not only by pediatricians and nurses but also by other health care professionals, such as ethicists, psychologists, sociologists, educators.
The home care team
Home care cannot be delivered by volunteers with humanitarian vocation. It must be skilfully planned. The team is generally coordinated by a physician in charge and includes physicians, many specialized nurses (who represent the mainstay of this activity), social workers, psychologists and a family/home caregiver. In most countries health professionals now rely on family caregivers or home caregivers. A large variety of literature reports on home care, which is looked at in different ways according to the different local situations. The creation of a bridge between hospital and home is always suggested. Hospital nurses at home provide adequate psychological support and information, minimizing the risk of complications, delivering nursing care, administering antibiotics, chemotherapy, analgesics, parenteral nutrition, etc. The family caregiver is a family member ready and capable to learn and carry out this task. It is not always easy to find such a person inside the family. Thus, it is necessary to engage a 'home-caregiver', a trained professional, usually a nurse, keeping in touch with the family of the patient to whom the home care is delivered by the hospital. Home care lasts at least two months.
The caregiver and the home care staff should be able to give the patient and his/her family confidence, support, immediate help in case of emergency, help in case of non emergency but important problems, high cultural level, attention and pain control, help during the dying process, help after death. The American College of Physicians has recently published the caregiver guidelines, which can be consulted on the web. The Penn State Milton S. Hershey Medical Center has created a web site on home care for children with cancer, which is constantly updated. Both organizations indicate four key ideas for the education and training of a caregiver, in order to succeed in solving problems. These key ideas can be remembered by thinking of the word COPE:
C for Creativity,
O for Optimism,
P for Planning,
E for Expert information.
The education and training of a home caregiver is very complex. He/she is in charge of the organization of the COPE items. According to the above-mentioned guidelines, 'planning' includes the knowledge of each patient's and his family's problems, of the moment when to ask for the help of the physician, coordinating nurse, social worker, psychologist, etc., a large range of duties, the ability of carrying out and, when necessary, modifying the planned intervention, the development of an orderly and systematic plan, the choice of the best strategy, the evaluation of obstacles. The guidelines can be improved, mainly thanks to the support of experts. All the authors reporting on their experience in home care of children and adolescents underline the importance for home caregivers to know very well the most frequent symptoms, to learn how to control pain, and to know both pain origin and analgesia.
Conclusions
Today, several measures are necessary. First, home care should become part of health care programs of most countries. Each one should provide guidelines for a correct approach to the problem, and to allocate adequate funds. Children's Hospitals and Research Institutes can start home care following the indications provided by the international literature. It is to be hoped for that a larger number of professionals with different competences will take charge of home care and that the strategy used will gain not only moral, psychological, social rewarding, but also financial recognitions. Concerning pediatrics, this project should be implemented as soon as possible, since hospitals, especially those carrying out teaching and research activities, are rarely on a pediatric scale, they can be upsetting for the child, and psychological troubles and traumas can be a consequence. Home care delivered by the children's hospital can become an alternative approach for those patients, especially terminally ill, who do not require hospitalisation. In conclusions, it should be necessary that scientific pediatric societies, health care professionals and Parents' Associations push politicians and implement the integration of several types of services for treatment of children, including home care, offering their collaboration in the global therapy design.
A detailed list of references can be obtained from the authors.