Pediatric palliative care

from Wikipedia, the free encyclopedia

Pediatric palliative care (PPV) is aimed at terminally ill children and adolescents and their families. Characteristic of the PPV is the comprehensive care not only of the life-threatening ill child, but also of the parents and siblings.

Goals & definition

Pediatric palliative care begins with the diagnosis of a life-threatening illness and accompanies the young patient throughout the course of the disease. It can take place in parallel with curative or life-extending therapies. During the dying and the first time after the death of the young patients PPV still is the grieving family aside.
The aim of the PPV is to relieve painful symptoms while taking into account a medical-psycho-social-spiritual treatment concept in the sense of palliative care .

According to a group of experts called IMPaCCT (International Meeting for Palliative Care in Children, Trento), pediatric palliative care is defined as follows:

“Palliative care for children means active and comprehensive care that takes body, soul and spirit of the child equally into account and guarantees the support of the affected family. It begins with the diagnosis and is independent of whether the child is receiving therapy with curative objectives. It is the job of the professional helpers to assess and minimize the extent of the physical, psychological and social stress on the child. Effective pediatric palliative care is only possible with the help of a broad, multidisciplinary approach that involves the family and public resources. It can be implemented successfully even when resources are scarce. Child palliative care can be provided in hospitals of the highest level of care, in municipalities and at the patient's home. "

Levels of Pediatric Palliative Care

The content of the JPA is based on the needs of the children and their families. A distinction is made between three levels of specialization in pediatric palliative care.

  • Level 1: All professionals involved in the care of critically ill children apply the principles of palliative care appropriately.
  • Stage 2: Life-threatening ill children and their families benefit from general palliative care; At home by the pediatrician and outpatient child care services, in the inpatient area by medical and nursing teams. Hospice support offers supplement the care if required.
  • Stage 3: Special palliative care is required by children with a serious life-threatening illness and a complex set of symptoms.
    At home, this is done in cooperation with the teams of the specialized outpatient pediatric palliative care (SAPPV) for children and adolescents, a service anchored in the 5th Social Code (SGB V). Inpatient care for children and adolescents is possible in children's and youth hospices and on a palliative ward in the hospital. The first palliative ward for children and adolescents has existed since 2010 at the Vestische Children's and Youth Clinic, Datteln - University of Witten / Herdecke under the direction of Boris Zernikow .

Target groups of the PPV

According to epidemiological data from England, out of 10,000 children (up to the age of 19) 32 children are critically ill. According to the Federal Association of Children's Hospices, there are around 40,000 life-threatening children and adolescents living in Germany, of which around 5,000 die each year from their illness.
Around 1,800 children develop cancer in Germany every year in their first 15 years of life, but also certain - in some cases very rare - neurological or cardiological diseases, malformations or metabolic disorders are incurable, fatal and are sometimes associated with severe mental and physical impairments. The sick children sometimes suffer from pain, seizures, severe restlessness or other stressful symptoms.

The Association for Children with Life Threatening or Terminal Conditions and Their Families (ACT) compiled a systematic breakdown of life-threatening diseases:

  • Group 1: Children and adolescents with life-threatening illnesses for whom curative therapy is available, but which can also fail. Palliative care may be required in parallel with curative therapy and / or in the event of therapy failure. Example: cancer
  • Group 2: Children and adolescents with illnesses where premature death is inevitable. Long periods of intensive therapy aim to prolong life and participate in normal activities of daily living. Example: cystic fibrosis.
  • Group 3: Children and adolescents with inexorably progressive disease processes without the possibility of curative therapy. The therapy is exclusively palliative. It often extends over many years. Examples: Batten-Spielmeyer-Vogt syndrome or muscular dystrophy.
  • Group 4: Children and adolescents with irreversible but non- progressive diseases that regularly show complications and are likely to lead to death. These diseases make complex demands on medical care. Examples: Hypoxic encephalopathy after peripartal asphyxia, multiple disabilities after traumatic brain injury or spinal trauma.

Children's rights in pediatric palliative care

The standards of pediatric palliative care in Europe take into account ethical and legal aspects:

I. Equality

  • Every child should have equal access to pediatric palliative care regardless of their family's financial resources.

II. In the interests of the child

  • In any medical decision, the child's best interests must be the top priority.
  • The child must not be given any treatment that would burden him without bringing him any discernible benefit.
  • Every child has the right to adequate pain management and symptom control through pharmacological and complementary measures, around the clock and whenever necessary.
  • Every child must be treated with dignity and respect; they have a right to privacy regardless of their physical or intellectual abilities.
  • The special needs of adolescents and young adults must be taken into account. This requires planning ahead of time.

III. Communication and decision making

  • All communication must be based on a sensitive, age-appropriate approach that is adapted to the child's level of development and is characterized by honesty and openness.
  • The parents are to be recognized as the primary caregivers. You are to be included as a partner in the overall care of your child and in every decision-making process.
  • No information should be withheld from parents. This also applies to the child and healthy siblings, depending on their age and level of development. The needs of other relatives should also be taken into account.
  • Every child must be given the opportunity to participate in decisions about their palliative care, depending on their age and level of development.
  • Situations with a high potential for conflict should be anticipated. Structures for early communication, therapeutic intervention or ethical advice should be established in advance.
  • Every family has the right to a second opinion from a pediatric specialist who has specialist knowledge of the child's disease, its therapy and all care options.

IV. Supply Management

  • The common home of the family must, if at all possible, remain the central point of care.
  • If children are admitted to a hospital or an inpatient hospice, they should be cared for by pediatric trained staff in a child-friendly environment, along with children who have similar needs according to their level of development. Under no circumstances should children be admitted to or cared for in hospitals or adult hospices.
  • The care of the children should be provided by employees who, by virtue of their level of education and skills, meet the physical, emotional and individual needs of the children and their families.
  • Every family has the right to care at home by a multidisciplinary, holistic child palliative team. Such a team includes at least a pediatric nurse, pediatrician, social worker, psychologist and pastor.
  • Every family is entitled to a case manager who helps the family to set up and maintain an appropriate support system.

V. Relief care

  • Each family should have flexible access to home or inpatient relief care, including appropriate multidisciplinary pediatric care and medical assistance.

VI. Family support

  • Sibling care from the time the diagnosis is made is an integral part of pediatric palliative care.
  • For as long as necessary, the whole family should be offered support with the grief work.
  • Every child and their family must be given pastoral or religious support.
  • Every family should be entitled to specialist advice on supplies of aids and financial aid. In times of exceptional stress, she should be given domestic help.

VII. Education

  • Every child has a right to education. Support should be given to attend their previous school if at all possible.
  • Every child must be given the opportunity to play and pursue child-friendly activities.

Advanced training

The additional training in palliative care for children and adolescents for health and child nurses, paediatricians, psychologists, pastors and social workers in Germany is based on the Dattelner curriculum. The Dattelner curriculum is multi-professional and comprises 4 seminar weeks with 40 hours per week as well as practical housework. The curriculum has been subject to review by the accreditation body of the University of Witten / Herdecke - Chair for Pediatric Pain Therapy and Pediatric Palliative Medicine since 2013.

Individual evidence

  1. ↑ a b c d F Craig, H Abu-Saad, F Beninin, L Kuttner, C Wood, FP Ferraris, B Zernikow. IMPaCCT: standards for pediatric palliative care in Europe. Eur J Pall Care 2007; 14 (3): 109-114. Online (English original), accessed March 15, 2017
  2. ^ A b Association for Children with Life-threatening or Terminal Conditions ACT. A guide to the development of children's palliative care services. Update of a report by the Association for Children with Life-Threatening or Terminal Conditions and their Families (ACT) and the Royal College of Paediatrics and Child Health (RCPCH). 2003, Bristol, UK.
  3. ^ LK Fraser, M. Miller, R. Hain, P. Norman, J. Aldridge, PA McKinney, RC Parslow: Rising National Prevalence of Life-Limiting Conditions in Children in England. Pediatrics 2012; 129 (4): e923 – e929.
  4. ↑ Bundesverband Kinderhospiz , accessed on 23 August 2016
  5. ↑ Children's Cancer Foundation , accessed on August 23, 2016
  6. ↑ Beate Müller: Pediatric Palliative Care. In: Susanne Kränzle, Ulrike Schmid, Christa Seeger (eds.): Palliative Care. Practice, further education, studies. Springer, Berlin 2018, p. 306
  7. ↑ Institute for Pediatric Pain Therapy and Pediatric Palliative Medicine at the Vestische Children's and Youth Clinic Datteln, University of Witten / Herdecke. Curriculum "Additional training in palliative care for children and adolescents for health and pediatric nurses, paediatricians and psychosocial staff". 2004, ALPHA - contact point in the state of North Rhine-Westphalia for care of the dying, hospice work and support for relatives - state part of Westphalia.
  8. ^ C. Hasan, B. Zernikow: Palliative care for children and adolescents in Germany. Pediatric Prax 2014; 82 (3): 503-524.
  9. ↑ B. Zernikow, C. Hasan: Palliative care for children and adolescents. Zeitschr Palliativmed 2013; 14: 157–172.