Children with life-limiting and life-threatening disease and their families have diverse and mutable priorities that include clinical needs (symptom assessment and management, patient care planning and sharing clinical, organizational and social decisions) [4, 9], psychosocial needs (of the children and their families) [1], social needs (education, play, economic support and services), and spiritual needs (of the children and their families) [1]. To provide adequate patient care, however, it is also important to contextualize and assess the needs of the team taking care of these patients and their families, and of the institutions that have to meet these new needs and find new ways to provide patient care.
The child's needs
The priority is symptom control. The literature [3, 5] confirms major shortcomings in the provision and efficacy of treatment for patients with terminal disease. Even now, most children with life-threatening and terminal illness have many, often severe symptoms that have a dramatic, negative impact on their quality of life: about 90% of them experience generalized suffering; more than 70% suffer pain, which is controlled in less than 30% of cases. Little is known about how dyspnea and respiratory distress are controlled in these patients, but the proportion of cases given effective treatment is limited to around 20%. There are numerous options available, but their application in daily clinical practice is wholly inadequate.
Needs relating to the psychological, communication, social exchange and spiritual spheres are also often not satisfied: these problems are delegated to the family, and only rarely considered part of a global patient care project [9].
In every single case, the patient's needs are continuously changing, in both intensity and prevalence, in relation to the child's natural psychological, physical and emotional development, and to the trend of the disease and its effects on the child's growth and developmental progress.
However short the patients' future life expectancy might be, and however severely these lives are affected or underdeveloped, the acquisition of new functions and abilities, and the child's development and maturity are core issues that must guide any action undertaken, from the more traditional healthcare measures (pharmacological treatments, supplementation or substitution of vital functions or organs, etc.) to those involving other sectors of society, to assure an adequate personal growth, provide an education, deliver cultural and creative input, and support the patients' spirituality and their social role in the community.
The family's needs
The family is a fundamental part of any pediatric palliative care program: it is actively involved in providing care and has a great deal of responsibility for caring for the child, having to make often difficult decisions in the child's best interest, and paying the social and economic price of incurable disease; without adequate support, its burden is often too heavy to bear [1, 10]. The needs of the family are numerous and include:
- educational needs, i.e. training on various aspects of patient care and support;
- psychological needs: they require assessment, support and treatment for sentiments such as guilt, rage, depression, anticipatory grief, and escape;
- spiritual needs: a competent source of answers, open to an exchange of ideas and respectful of people's cultural background and religious beliefs;
- financial and social needs: practical proposals for coping with a situation of isolation, loss of identity and financial insecurity for families whose members often lose their jobs, as well as supporting the cost of patient treatment and care.
The grief associated with the incurable disease and death of a child has devastating, long-term implications for the whole family. The child's siblings have special needs during the child's illness and after their death. These brothers and sisters are at high risk of subsequent problems at school and in their relationship with their parents, as well as other psychological and social problems after their sibling's death. These problems are less evident if the disease and death are managed at home rather than in hospital [11].
Other members of the expanded family (grandparents, uncles and aunts, and friends) can play an important part in creating a supportive, sharing and affective network during the child's disease and after their death: these people also need support and supervision.
The needs of the team
- Education and training for healthcare professionals: several studies conducted in Europe and the United States have emphasized an important shortage of know-how among public health operators as regards the fundamentals of palliative care [12, 13]. Various types of expertise are required: in addition to the technical abilities needed for diagnosis and treatment, it is indispensable to have skills relating to communication (with the children and their families), teamwork and service organization.
- Supervision: the emotional impact and stress are undeniable and are often considered responsible for situations of severe burnout, leading to a rapid turnover of the professionals involved at the expense of the acquisition of the necessary experience and professional skills. These people needs support, sharing and supervision to help them cope with the problems of death and incurable disease, so that they can be useful to others, without losing their own identity and personality.
- Resources: little interest has been paid so far to pediatric palliative care as a need that healthcare organizations must meet, and the professional expertise of people working in this field has received scarce acknowledgement. It is now clear to all, from the literature and in daily clinical practice, that pediatric palliative care is a fundamental issue and warrants the allocation of specific resources, and that it is currently falling very short of meeting the real needs.
- Public education: people need to learn that palliative care should be seen as serving a right to quality of life: well-informed users know what to ask for, and this facilitates the work of healthcare operators and enables better forms of cooperation and a sharing of the problems and potential solutions.
The needs of institutions
Institutions are faced with an entirely new and complex demand for care, as regards both the type of patient and how their needs can be met, in a context where little information is available, research has been limited and much remains to be done in terms of social and healthcare programs, the availability of monitoring tools, and cost analyses [1].
It is consequently important to produce:
- epidemiological data on the numbers, diagnostic categories, age ranges and locations of children with life-limiting or life-threatening conditions, in the light of current patient care methods and the related costs;
- tools and indicators/standards for monitoring the quality of care and the quality of life of such young patients and their families;
- assessments of the best practices in pediatric palliative care in all settings and situations in which is it needed.