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Anaesthesiology Intensive Therapy
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vol. 53
Special paper

Guidelines regarding ineffective maintenance of organ functions (futile therapy) in paediatric intensive care units

Alicja Bartkowska-Śniatkowska
Elżbieta Byrska-Maciejasz
Maciej Cettler
Maria Damps
Konrad Jarosz
Magdalena Mierzewska-Schmidt
Marek Migdał
Irena Ożóg-Zabolska
Andrzej Piotrowski
Marcin Rawicz
Magdalena Świder
Mariola Tałałaj
Marzena Zielińska

Department of Paediatric Anaesthesiology and Intensive Therapy, Poznan University of Medical Sciences, Poznań, Poland
Department of Anaesthesiology and Intensive Therapy, University Children’s Hospital of Cracow, Poland
Department of Anaesthesiology and Intensive Therapy for Kids, Provincial Polyclinical Hospital in Toruń, Poland
Department of Anaesthesiology and Intensive Care, Upper Silesian Child Health Centre, Faculty of Medical Sciences in Katowice, Medical University of Silesia, Poland
Department of Clinical Nursing, Pomeranian Medical University, Szczecin, Poland
Department of Paediatric Anaesthesiology and Intensive Therapy, Medical University of Warsaw, Poland
Children’s Memorial Health Institute, Warsaw, Poland
Department of Paediatric Anaesthesiology and Intensive Therapy, COPERNICUS PL, Gdańsk, Poland
Department of Neonatology, Medical University of Warsaw, Poland
The Warsaw Hospital for Sick Children, Warsaw, Poland
Department of Anaesthesiology and Critical Care Medicine, Clinical Provincial Hospital No. 2 in Rzeszów, Poland
Department of Anaesthesiology and Intensive Care of Children and Adolescents with the Postoperative and Pain Management Department, Bialystok Medical University, Białystok, Poland
Department of Paediatric Anaesthesiology and Intensive Care, Wroclaw Medical University, Wrocław, Poland
Anaesthesiol Intensive Ther 2021; 53, 5: 369–375
Online publish date: 2021/12/30
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Background and rationale

The death of a child is different from the death of an adult. It concerns a person on the threshold of life, on whom the attention of the whole family is focused. The death of a child violates the foundations of its existence and becomes a particularly difficult and sometimes even unacceptable experience for parents [1, 2]. This situation is complemented by the lack of our own experiences with the death of relatives, acquired in the past in multigenerational families with many children, in which passing away of successive generations made it possible to become familiar with death and, in a way, prepare for it [3]. The death of a child is always shocking and devastating [4]. In many cases, parents are unable to come to terms with the death of their child and some of them unknowingly make the dying child suffer by exerting various pressure on the medical team, being convinced that they are doing it for the child’s sake [5, 6]. The term “persistent therapy” means repetitive activities that last for a long time but it does not refer to the consequences of such procedures. “Futile therapy”, on the other hand, refers to the goal of these activities, which cannot be achieved. In the Polish medical nomenclature, both terms are used synonymously/interchangeably, which is not correct. The concept of persistent therapy appears in the document issued in 2011 by the Polish Paediatric Society, entitled “Withholding and withdrawing life-sustaining medical treatment in children. Guidelines for doctors” [7]. In the document entitled “Guidelines regarding the ineffective maintenance of organ functions (futile therapy) in ICU patients incapable of giving informed statements of will”, issued in 2014 by the Polish Society of Anaesthesiology and Intensive Therapy, the concept of futile therapy was used as a more precise and appropriate [8]. So far, guidelines have been developed by the Polish Paediatric Society [7] and the Polish Neonatal Society [19]. However, they do not apply to patients admitted to paediatric intensive care units, where we face the inevitable end of life and the question of whether we act in the best interest of the dying child or we succumb to family pressure and our own mental and moral limitations [10, 11]. The specific problems of futile therapy in paediatric anaesthesiology and intensive care units should be defined and solved separately. For this purpose, the guidelines presented below were prepared. They present the principles for managing children for whom therapeutic options available in paediatric intensive care units have been exhausted and ineffectiveness of maintaining organ functions, i.e. futile therapy, has been suspected, taking into account respecting child’s dignity and relieving pain or suffering. We should strive for a situation in which legal representatives, most often parents, accept the fact that their child’s therapy is futile, or at least understand the reasons why the treatment team decided so. Their consent should not be required. The decision to withdraw futile therapy, undoubtedly one of the most difficult, according to Article 37 of the Act on the Professions of Physician and Dentist [14], should be made collectively. Since the decision concerns withholding or withdrawing certain forms of treatment because of their futility, its basis should be sought in Article 38 of the aforementioned Act, which refers to the right to decide to withdraw or withhold treatment. Such a decision must be made collectively and documented in writing in the medical records.
The legal representatives should represent the interests of their children; however, they are often unable to accept death and may more or less consciously try to keep the child alive at all costs, contributing to his/her suffering [12, 13]. That is why the doctor’s task is to encourage the relatives to understand the child’s situation and accept his/her point of view, not their own. An additional difficulty may sometimes be caused by the parents’ lack of agreement in their assessment of the situation. The doctor is not obliged and should not fulfil the parents’ demands regarding the initiation or continuation of futile therapy. In such situations, acting in accordance with the parents’ wishes would be inconsistent with the constitutional principle of respecting human dignity, as well as with Art. 4 of the Act on the Professions of Physician and Dentist, and would violate the patient’s right to die with dignity and peace (Art. 20 paragraph 2 of the Act on the Patients’ Rights and Patients’ Rights Ombudsman) [14, 15]. It is worth emphasising that sometimes legal representatives are the first to address the issue of medical futility in their child. Such situations are especially likely when the child is treated in various medical institutions and there is no permanent attending doctor. The parents’ wish to end the therapy, which in their opinion is futile, as well as the lack of their consent to stop it, is not binding on the doctor. In such a situation, when the doctor considers it justified to continue the treatment, according to Article 34 (6) on the Professions of Physician and Dentist [14], he/she may undertake medical activities against the will of the legal representative only after obtaining the consent of the court. Therefore, to continue treatment against the will of the legal representatives, it is necessary to obtain the consent of the court, and thus the doctor is obliged to apply for it.

Guidelines methodology

The guidelines were developed by the Group of Experts consisting of specialists in anaesthesiology and intensive care who work in the paediatric anaes­thesiology and intensive care units, established by the Paediatric Anaesthesiology and Intensive Care Section of the Polish Society of Anaesthesiology and Intensive Therapy. Due to the limited access to reliable evidence-based data, the guidelines constitute the consensus of the Group of Experts and are designed for minor patients treated in paediatric intensive care units.

Guidelines regarding ineffective maintenance of organ functions (futile therapy) in paediatric intensive care units

It is not always easy to determine at what point intensive therapy becomes futile [16, 17]. Some examples of clinical situations in which medical futility should be considered are presented in Table 1. Decision-making process in chronic diseases In the case of chronically ill patients with a poor or doubtful prognosis, the first talks with parents should be carried out by a paediatrician or neonatologist, a palliative medicine doctor (if the child is under the care of a hospice) and an anaesthesiologist taking care of the child receiving mechanical ventilatory support at home [14–18]. The doctor’s task is to prepare the parents for treatment failure, even if the child’s condition is initially stable. In some situations it is best to refer the child to a hospice at an early stage. The hospice will provide the patient with full, professional palliative care at home, thus saving unnecessary and distressing hospitalisations [17]. In the event of an unsuccessful prenatal diagnosis, a plan for such management may be established and approved by parents before the child is born. It often happens that the initial condition of the patient justifies the full treatment, while the duty of the doctor treating a child with advanced incurable chronic disease is to periodically assess the balance of benefits and losses resulting from the treatment. Talking to parents at an early stage of the disease allows them to prepare for treatment failure and to accept decisions, which also include the lack of indications for unjustified admission to the paediatric intensive care unit [19–21].

Emergency decision-making process

In the case of emergencies, when the child was previously healthy, parents are usually under enormous stress related to an unexpected and extremely difficult situation. Information about an unfavourable prognosis and irreversibility of a child’s condition may evoke very different reactions – from doubt and denial to aggression. Conversations with parents require a lot of tact, patience and, at the same time, openness. It may be helpful to involve appropriate specialists from outside intensive care, especially providing psychological support to parents in this difficult situation [22]. Decision-making process in paediatric intensive care units In both cases, i.e. chronic diseases and emergencies, the decision to initiate palliative procedures must be based on the full conviction and evidence of poor prognosis, confirmed by diagnostic tests and opinion of competent specialists [23, 24]. Such a decision should be made collectively; it often takes time to make it, but it should not be excessively delayed. Before making the decision, it is important to obtain the opinion of people involved in the treatment and care of the child. It is very important that the therapeutic team act in accordance with the best interests of the child, taking into account the current medical knowledge, the opinion of other specialists, and therapeutic options [25, 26]. In the case of doubt, additional opinions should be obtained, and a wider group of specialists should be involved in the decision-making process, for example by creating formalised interdisciplinary commissions in hospitals to support and/or participate in the decision-making process. If the child is able to express his/her opinion and participate in making decisions about the scope and methods of treatment, this opinion must also be taken into account. The decision to withdraw futile therapy should be made by at least two anaesthesiology and intensive care specialists, in consultation with a doctor and/or a team of other specialists involved in the therapeutic process, in consultation with the head of the ward or a person authorised, and consistently followed by the entire medical team. The decision should not be left to the doctor on duty. Any decision to withhold or withdraw futile therapy has to be recorded in the patient’s medical history. The parents must be informed of it, and the doctor should record this fact in the medical records. It is also advisable to note the parents’ opinions in this regard. The documentation should specify in detail the limitation of the therapy, i.e. which procedures will be performed/continued, if necessary, and which will be withheld or withdrawn. The presented form can be used to document a further management plan. The first part contains palliative management, which will be continued for each patient (Table 2). The list of procedures is intended to show parents that the decision to initiate palliative care does not mean the end of caring for their child. The second part of the form contains procedures that can be undertaken or not and will be continued or withdrawn if they have already been initiated, but their continuation is medically futile. Withdrawing particular procedures must not be associated with additional suffering for the patient (Table 3). It is worth noting that in the case of intensive care procedures, such as mechanical ventilation, it is easier to withhold than to withdraw them, although, from the ethical point of view, both measures are considered to be equivalent.

Palliative care

The decision to withdraw futile therapy means discontinuing therapeutic activities that do not lead to the patient’s recovery but only prolong the process of dying. The moment of making such a decision is the transition from therapeutic measures to palliative care [27, 28]. The medical procedures that are not able to cure the patient are withdrawn, and those aimed at ensuring comfort in the last stage of life will be implemented and/or continued. When further support of organ functions is no longer beneficial for the child, cannot change the unfavourable prognosis, and is considered futile, palliative care begins to play a dominant role in managing patients in intensive care units. Palliative care is a holistic approach aimed at preserving the dignity of the child and his/her family and meeting the physical, mental, and spiritual needs of the patient in the terminal phase of the disease. The procedures protecting physical functions include pain relief as well as prevention of dyspnoea, cold, and hunger. Meeting the mental and spiritual needs of the child requires proper preparation of the environment and constant cooperation of the medical team with parents and, if possible, with the child. These activities include: preparation of the room, taking into account the comfort of the child and his/her family:
an isolated room (if possible),
a dedicated nurse (if possible),
avoiding noise and excessive lighting,
liberalisation of the visit scheme (constant presence of parents, possible visits of those who do not belong to the family); it may be necessary to equip the room with additional elements.
patient preparation:
comfortable position,
avoiding unnecessary monitoring, reducing lights of screens,
avoiding blood sampling,
removal of unnecessary drains, catheters, vascular accesses, etc.
staff preparation:
a plan for the management of a terminally ill child should be discussed with the medical team,
attention should be paid to the fact that all staff should be focused on preserving the dignity of the child and his/her family in the final stage of the disease; in particular, potential conflicts with parents should be avoided,
after the child’s death, the family should be provided with a “time of silence”; the family should be allowed to stay and say goodbye in privacy, without the presence of staff members or time pressure [29–31].
The ABCDs of dignity-conserving care (attitude, behaviour, compassion and dialogue), which is a set of principles defined in Anglo-Saxon literature, may be useful [30].
Attitude: we should make sure that our life experiences do not affect the nature of the care provided.
Behaviour: it is necessary to make it clear to the family that the patient is important to us; do not avoid eye contact during the conversation, look in the eyes, and do not use specialised language.
Compassion: sensitivity to suffering and desire to bring relief.
Dialogue: expanding the level of dialogue: respect the child’s personality traits, encourage the family to recall memories, strive for the presence of people who could help the family survive difficult moments.
In situations that cause conflicts between the attitudes of medical staff and the child’s family, it may be helpful to seek the help of other specialists, for example in the field of palliative medicine or clinical psychology.


1. Financial support and sponsorship: none.
2. Conflict of interest: none.


1. Suttle ML, Jenkins TL, Tamburro RF. End-of-life and bereavement care in pediatric intensive care units. Pediatr Clin North Am 2017; 64: 1167-1183. doi: 10.1016/j.pcl.2017.06.012.
2. Lee KJ, Dupree CY. Staff experiences with end-of-life care in the pedia­tric intensive care unit. J Palliat Med 2008; 11: 986-990. doi: 10.1089/jpm.2007.0283.
3. Liben S, Papadatou D, Wolfe J. Paediatric palliative care: challenges and emerging ideas. Lancet 2008; 371: 852-864. doi: 10.1016/S0140-6736 (07)61203-3.
4. Li J, Laursen TM, Precht DH, Olsen J, Mortensen PB. Hospitalization for mental illness among parents after the death of a child. N Engl J Med 2005; 352: 1190-1196. doi: 10.1056/NEJMoa033160.
5. Meert KL, Briller SH, Meyers S, Thurston CS. Exploring parents’ environmental needs at the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med 2008; 9: 623-628. doi: 10.1097/PCC. 0b013e31818d30d5.
6. Martin DK, Emanuel LL, Singer PA. Planning for the end of life. Lancet 2000; 356: 1672-1676. doi: 10.1016/S0140-6736(00)03168-8.
7. Dangel T, Grenda R, Kaczkowski J, et al. Zaniechanie i wycofanie się z uporczywego leczenia podtrzymującego życie u dzieci. Wytyczne dla lekarzy. Polskie Towarzystwo Pediatryczne, Warszawa 2011.
8. Kubler A, Siewiera J, Durek G, Kusza K, Piechota M, Szkulmowski Z. Guidelines regarding the ineffective maintenance of organ functions (futile therapy) in ICU patients incapable of giving informed statements of will. Anestezjologia Intensywna Terapia 2014; 46: 229-234.
9. Standardy opieki medycznej nad noworodkiem w Polsce 2019. Zale­cenia Polskiego Towarzystwa Neonatologicznego.
10. Selph RB, Shiang J, Engelberg R, Curtis JR, White DB. Empathy and life support decisions in intensive care units. J Gen Intern Med 2008; 23: 1311-1317. doi: 10.1007/s11606-008-0643-8.
11. Moselli NM, Debernardi F, Piovano F. Forgoing life sustaining treat- ments: differences and similarities between North America and Eu- rope. Acta Anaesthesiol Scand 2006; 50: 1177-1186. doi: 10.1111/ j.1399-6576.2006.01150.x.
12. Blume ED, Balkin EM, Aiyagari R, et al. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study. Pediatr Crit Care Med 2014; 15: 336-342. doi: 10.1097/PCC.0000000000000072.
13. Wolfe J, Hammel JF, Edwards KE, et al. Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 2008; 26: 1717-1723. doi: 10.1200/JCO.2007.14.0277.
14. Ustawa z dnia 5 grudnia 1996 r. o zawodach lekarza i lekarza dentysty (Dz.U. nr 277/2001, poz. 1634).
15. Ustawa z dnia 6 listopada 2008 r. o prawach pacjenta i Rzeczniku Praw Pacjenta (Dz.U. nr 52/2009, poz. 417).
16. Bradley C, Brasel K. Developing guidelines that identify patients who would benefit from palliative care services in the surgical intensive care unit. Crit Care Med 2009; 37: 946-950. doi: 10.1097/CCM.0b013e3181968f68.
17. Kassam A, Skiadaresis J, Alexander S, Wolfe J. Parent and clinician preferences for location of end-of-life care: home, hospital or free- standing hospice? Pediatr Blood Cancer 2014; 61: 859-864. doi: 10.1002/pbc.24872.
18. De Vos MA, Bos AP, Plotz FB, et al. Talking with parents about end-of-life decisions for their children. Pediatrics 2015; 135: e465-e476. doi: 10.1542/peds.2014-1903.
19. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The efects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28: 1000-1025. doi: https://doi. org/10.1177/0269216 314526272.
20. Selph RB, Shiang J, Engelberg R, Curtis JR, White DB. Empathy and life support decisions in intensive care units. J Gen Intern Med 2008; 23: 1311-1317. doi: 10.1007/s11606-008-0643-8.
21. Moselli NM, Debernardi F, Piovano F. Forgoing life sustaining treat- ments: differences and similarities between North America and Eu- rope. Acta Anaesthesiol Scand 2006; 50: 1177-1186. doi: 10.1111/ j.1399-6576.2006.01150.x.
22. Michelson KN, Patel R, Haber-Barker N, Emanuel L, Frader J. End- of-life care decisions in the PICU: roles professionals play. Pediatr Crit Care Med 2013; 14: e34-44. doi: 10.1097/PCC.0b013e31826e7408.
23. Sprung CL, Truog RD, Curtis JR, et al. Seeking worldwide profes­sional consensus on the principles of end-of-life care for the critically ill. The Consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) study. Am J Respir Crit Care Med 2014; 190: 855-866. doi: 10.1164/rccm.201403-0593CC.
24. Mentzelopoulos SD, Slowther AM, Fritz Z, et al. Ethical challenges in resuscitation. Intensive Care Med 2018; 44: 703-716. doi: 10.1007/ s00134-018-5202-0.
25. Morparia K, Dickerman M, Hoehn KS. Futility: unilateral decision making is not the default for pediatric intensivists. Pediatr Crit Care Med 2012; 13: e311-e315. doi: 10.1097/PCC.0b013e31824ea12c.
26. Garros D, Austin W, Carnevale FA. Moral distress in pediatric intensive care. JAMA Pediatr 2015; 169: 885-886. doi: 10.1001/jamapedia­trics.2015.1663.
27. Thienprayoon R, Alessandrini E, Frimpong-Manso M, Grossoehme D. Defining provider-prioritized domains of quality in pediatric home-based hospice and palliative care: a study of the Ohio Pediat­ric Palliative Care and End-of-Life Network. J Palliat Med 2018; 21: 1414-1435. doi: 10.1089/jpm.2018.0056.
28. Section on Hospice and Palliative Medicine and Committee on Hospital Care. Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations. Pediatrics 2013; 132: 966-972. doi: 10.1542/peds.2013-2731.
29. Caring for the child who is dying in PICU; httpd://www.starship.org. nz/guidelines/caring-for-a-child-who-is-dying/hes-died-in-PICU, June 2019.
30. Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality od end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pedatrics 2006; 117: 649-657. doi: 10.1542/ peds.2005-0144.
31. Cook D, Rocker G. Dying with the dignity in the intensive care unit. N Engl J Med 2014; 370: 2506-2514. doi: 10.1056/NEJMra1208795.
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