BASIC PRINCIPLES OF PALLIATIVE CARE
Basic Principles Of Palliative Care
- provides relief from pain and other distressing symptoms;
- integrates the psychological and spiritual aspects of patient care;
- enhances quality of life and positively influences the course of illness;
- affirms life and regards dying as a normal process;
- intends neither to hasten nor postpone death;
- offers a supporting system to help children and adolescents live as actively as possible until death;
- offers a supporting system to help family cope with the problems caused by child’s illness;
- continues throughout the course and the terminal stage of illness, while concurrently ensuring adequate family support during bereavement , for as long as required;
- uses a multidisciplinary approach to address the needs of patients and families;
- is applicated early in the course of illness, in conjunction with other therapies, intended to prolong life and includes those necessary investigations for the optimal understanding and management of distressing clinical complications;
- should be accessible to families regardless of their social, cultural, religious, financial or insurance status.
Basic Conditions For The Provision Of Quality Pediatric Palliative Care
The Greek Society of Pediatric and Adolescent Palliative Care, according to the basic principles, formulated in 2010 the following conditions, which are required to ensure quality palliative care:
- Regarding the nature of care: The focus of care is the seriously ill child/adolescent and his/her family. Concurrently with the provision of medical and nursing care to the child/adolescent with the aim to alleviate his/her pain and other symptoms, psychological, social and spiritual support are offered to the patient, siblings, parents and immediate family, according to their individual needs in every phase of child’s illness. The needs and wishes of each child and family should be frequently assessed throughout the illness course, and should also be taken into account at decision making and care plan.
- Parental participation in care: The parents or the legal guardians of the child/adolescent should be informed about their child’s illness, the available therapeutic options and potential outcomes, and acknowledged as fully participating in all aspects of care and all decisions regarding the care of their child.
- Child/ adolescent participation in care: Every child or adolescent has the right, provided it is wished, to be informed in accordance with his/her age and developmental stage, about the illness, the treatment options and possible outcomes and also to participate, according to his/her age and maturity level, in discussions and decisions regarding his/her care, in cooperation with parents/legal guardians and with the support of the multidisciplinary team.
- Interdisciplinary team: Pediatric palliative care is provided by an interdisciplinary healthcare professional team, appropriately specialized and supported throughout the provision of care. The interdisciplinary team develops cooperative relationships with other scientists, organizations and services, so as the needs of the child/adolescent and his/her family are comprehensively met, including long- term support during bereavement.
- Provider of service: The service that offers pediatric palliative care should have the proper infrastructure in order to meet the needs of every child/adolescent and his/her family members referred to the service. Provision of services should be made available on a 24hour basis, all days of the year.
- Home care: The child/adolescent’s home remains the focus of care, whenever this is the wish of the family. In this case, parents should receive appropriate training and preparation as well as immediate access to the appropriate medical and nursing equipment, the necessary aids and the required practical support to make feasible the care of child/adolescent at home.
- Ensuring continuation of care: The organizations / services supporting the family should cooperate so as to ensure the continuation of care of the child/adolescent and his/her family. Particular attention should be given in the case of transfer of adolescents’ care to adult facilities.
- Volunteer support groups: In order to meet the multiple needs of families with a seriously ill child/adolescent, it is advisable to have a network of volunteers to work alongside the professional healthcare team. These volunteers should be offered training, supervision and support by the palliative care service provider.
- Service Evaluation: The quality of pediatric palliative care services should be periodically audited, in accordance with the aforementioned standards. Qualitative and quantitative methods can be used for the evaluation of provided services by a) the members of the healthcare team, b) the recipients of the service, c) the cooperating agencies/organizations, and d) an external independent evaluator, experienced in the evaluation of palliative care services. Evaluation outcomes will be taken into consideration in the continuous improvement of the quality of the services as well as their further development.