Corso di Rianimazione Neonatale Lezione 9: Principi Etici e Assistenza al Termine della Vita Corso di Rianimazione Neonatale

Principi etici e cure al termine della vita Contenuto della Lezione: Principi etici sull’inizio o sull’ interruzione delle manovre rianimatorie Comunicare con i genitori Decidere di non iniziare la rianimazione Prognosi incerta Criteri per sospendere la rianimazione Che cosa fare quando un neonato muore Dolore da lutto (genitori, medici e infermieri) In lesson 9 you will learn The ethical principles associated with starting and stopping neonatal resuscitation How to communicate with parents and to involve them in ethical decision making When it may be appropriate to withhold resuscitation What to do when the prognosis is uncertain How long to continue resuscitation attempts when the baby does not respond What to do when a baby dies How to help parents through the grieving process How to help staff through the grieving process

Principi etici della rianimazione neonatale I principi etici verso il neonato non dovrebbero differire da quelli riguardanti i bambini di età maggiore e gli adulti  Principi etici generali dell’assitenza medica Autonomia (diritto di libertà)* Beneficio (utilità)* Non maleficio (assenza di danno, rischi inutili)* Giustizia (fiducia e lealtà)* *consenso informato The ethical principles that govern these decisions are no different than those applied to older children and adults. Common ethical principals that apply to all medical care include Respect the individual’s rights to liberty and freedom (autonomy). Do good things for people (beneficence). Do not harm people (nonmaleficence). Treat people truthfully and fairly (justice).

Concetti che aiutano nelle decisioni etiche I genitori sono considerati le persone più adatte a prendere decisioni al posto dei propri figli I genitori devono ricevere le informazioni rilevanti e particolareggiate sui rischi e benefici riguardanti ogni opzione di trattamento per decidere ciò che è meglio (“Best interest”) per il neonato Può non esservi tempo sufficiente per ottenere un adeguato consenso informato  Newborns cannot make decisions for themselves or express their desires. A surrogate decision maker (generally the parents) must be identified to assume the responsibility of guarding the newborn’s best interest. The decision maker(s) must have relevant, accurate, and honest information about the risks and benefits of all treatment options. Oftentimes, there is inadequate opportunity to achieve fully informed consent regarding all treatment options. In rare cases, the health care team may conclude that a decision made by a parent is not reasonable and not in the baby’s best interest.

Quali informazioni aiutano a scegliere nel “Best interest”? Le probabilità che la terapia abbia successo I rischi legati al trattamento e all’astensione dal trattamento L’entità del prolungamento della vita, se la terapia dovesse avere successo Il dolore ed il fastidio associati alla terapia La qualità prevedibile della vita del neonato con e senza il trattamento  Newborns cannot make decisions for themselves or express their desires. A surrogate decision maker (generally the parents) must be identified to assume the responsibility of guarding the newborn’s best interest. The decision maker(s) must have relevant, accurate, and honest information about the risks and benefits of all treatment options. Oftentimes, there is inadequate opportunity to achieve fully informed consent regarding all treatment options. In rare cases, the health care team may conclude that a decision made by a parent is not reasonable and not in the baby’s best interest. American Medical Association – Code of Medical Ethics 9-5 5

La legge e la rianimazione neonatale Le leggi variano da luogo a luogo Negli USA nessuna legge federale impone di effettuare la rianimazione in qualunque ciscostanza In Italia? In caso di incertezza consultare il Comitato Etico del proprio ospedale Laws and the regulations that implement them vary among jurisdictions and can change quickly. Health care providers should be aware of the laws in the areas that they practice. No law mandates attempt at resuscitation in all circumstances. If further medical intervention would serve no useful purpose (ie, would be futile), withdrawal of support is considered appropriate. If there is disagreement between the parent and the health care team, most hospitals can consult an ethics committee or legal counsel. Instructor Tip: Ask participants who makes the decision in their hospitals regarding starting or stopping resuscitation. 

Astensione dalle manovre rianimatorie: prognosi certa La rianimazione non è indicata nei casi in cui la gestazione, il peso alla nascita, e/o anomalie congenite sono associate a morte precoce quasi certa e a morbilità di grado inaccettabilmente elevato tra i rari sopravvissuti (EG <23 sett, peso <400g, anencefalia, patologie genetiche o malformazioni letali)  Where gestation, birth weight, and/or congenital anomalies are associated with almost certain early death, and unacceptably high morbidity is likely among the rare survivors, resuscitation is not indicated. Examples include Newborns with confirmed gestational age of less than 23 weeks or birth weight less than 400 g Anencephaly Confirmed Trisomy 13 or Trisomy 18 syndrome

Astensione dalle manovre rianimatorie: prognosi incerta Nelle condizioni in cui la prognosi è incerta, quando la probabilità di sopravvivenza è ai limiti ed il tasso di morbilità è elevato, o quando si prevede un intenso carico di sofferenza per il bambino, dovrebbe essere sostenuto il desiderio dei genitori riguardo l’opportunità di iniziare la rianimazione Colloquio in situazione adeguata, diverse possibilità  An example may include a baby born at 23 to 24 weeks’ gestation. In such cases, the parents’ views on either initiating or withholding resuscitation should be supported. Borderline survival, high morbidity rate Burden to child is high Support parents’ request

Stima dell’età gestazionale e del peso fetale prima della nascita Eccetto per i casi di fecondazione in vitro, la datazione ostetrica può avere uno scarto di +/- 1 o 2 settimane quando effettuata dopo il 1°trimestre Nei casi di prematurità estrema, è necessario avvertire i genitori che le decisioni prese prima della nascita potrebbero essere modificate in sala parto in base alla valutazione diretta del neonato dopo la nascita Un tentativo di rianimazione, in attesa di guadagnare informazioni, “aiuta” i genitori  Unless conception occurred via in vitro fertilization, techniques used for obstetrical dating are accurate to only +/- 1 to 2 weeks and estimates of fetal weight are accurate only to +/- 15% to 20%. Even small discrepancies of 1 to 2 weeks in gestational age or 100 to 200 g in birth weight may have implications for survival and long-term morbidity. Also, fetal weight can be misleading if there has been growth restriction. These uncertainties underscore the importance of not making firm commitments about withholding resuscitation until you have the opportunity to examine the baby after birth. Gestation: accurate only to +/- 1 to 2 weeks Weight: accurate only to +/- 15% to 20% Resuscitation decisions dependent on baby’s condition at birth

Rianimazione contro il desiderio dei genitori Elevata probabilità di sopravvivenza, tasso di morbilità accettabile  sollecitare una “second opinion” di un collega Obbligo legale ed etico nei confronti del neonato In caso di disaccordo  Comitato Etico/consulenza legale Documentazione accurata degli scambi di opinione intercorsi con i genitori In conditions associated with a high rate of survival and acceptable rate of morbidity, resuscitation is nearly always indicated. On rare occasions, parents and health care providers may disagree about what risk of mortality and morbidity are acceptable and what treatment is in the baby’s best interest. In these circumstances, it may become necessary to consult the hospital ethics committee or legal counsel. If there is not enough time to consult these additional resources, and the responsible physician concludes the parents’ decision is not in the best interest of the child, it is appropriate to resuscitate the newborn even over the parents’ objections. Accurate documentation of the discussion with the parents, as well as documentation of the basis for the decision, is essential.

Counseling prenatale prima della nascita ad alto rischio Stabilire un contatto con i genitori Informazione consistente ( decisione ponderata), assistenza coordinata (ostetrico e neonatologo) Punti da affrontare: Possibilità di sopravvivenza/handicap (dati del centro e nazionali) “Solo cure compassionevoli” Prevenzione del dolore e della sofferenza (exitus in minuti o ore) Chi sarà coinvolto nella rianimazione Lasciare ai genitori il tempo per riflettere Documentazione in cartella Prenatal discussions provide an opportunity to share important information with the parents and establish a trusting relationship. Parents should receive consistent information from both the obstetric and pediatric teams and should be assured that their baby will receive coordinated care. This will assist the parents in making informed decisions for their baby. During the discussion, the following issues may be covered: Assessment of the baby’s chances for survival and possible disability. The possibility of “comfort care only” if viability is considered marginal. If comfort care treatment is agreed upon, assure the parents that care will focus on preventing or relieving pain and suffering. Explain where the resuscitation will take place and who will be in the delivery room. Offer time to consult with family members and/or clergy. After meeting with the parents, document a summary of your conversation in the mother’s chart.

Nessuna risposta alla rianimazione Dopo 10 minuti di assenza di battito cardiaco, nonostante adeguati e completi tentativi rianimatori, può essere appropriato decidere di interrompere la rianimazione  If there is no heart rate after 10 minutes of complete and adequate resuscitation efforts and there is no evidence of other causes of newborn compromise, discontinuation of resuscitation efforts may be appropriate. Current data indicate that, after 10 minutes of asystole, newborns are very unlikely to survive, or likely to survive with severe disability. However, more than 10 minutes after birth may have been required to assess the baby and optimize the resuscitation efforts. There is no obligation to continue life support if it is the judgment of experienced clinicians that such support would not be in the best interest of the baby or would serve no useful purpose (ie, would be futile). In the case of withdrawal of critical care interventions and institution of comfort care support after successful initial resuscitation, the parents should be in agreement with this judgment.

Coinvolgimento dei genitori dopo la morte del bambino Incoraggiare i genitori ad essere presenti e a tenere in braccio il loro bambino Accogliere/contenere il dolore dei genitori e la loro sofferenza Essere sensibili ai diversi principi culturali e spirituali When a baby is dying or has died, the most important goal is to provide humane and compassionate care. Prepare the baby by removing unnecessary tubes and placing him or her in a clean blanket, covering any significant open incisions or malformations. Allow the parents to hold the baby. Offer the parents privacy but be sure they know you are available. It is helpful to understand the cultural and religious expectations surrounding death in the community that you serve.

“Care” della famiglia dopo la morte del bambino “Care” consistente, sensibile e compassionevole Preparazione, esperienza, coordinamento Abilità nella comunicazione Visite di Follow-up, gruppi di supporto The entire staff should have a consistent, sensitive, and compassionate approach to families of babies who have died. If the mother is still an inpatient in the hospital, you may want to move her to a room elsewhere in the facility. A protocol for perinatal death prepared in advance and coordinated among all team members may help avoid inconsistencies from well-meaning staff. Skillful communication from the health care team is extremely important. There are no words that will make conversation with the family less painful. The attending physician may schedule a follow-up appointment to answer any questions and assess the family’s needs. Some hospitals sponsor parent-to-parent support groups. Remember that some families may not want any additional contact from the hospital and that this desire should be respected. Staff members who participated in care of the baby and family may also need support. Consider holding a debriefing session, but remember that issues regarding care decisions should only be discussed in a qualified peer-review session. Instructor Tip: Give participants resources to find protocols for care of families experiencing perinatal loss. Ask participants who supports/debriefs staff after this type of event in their hospital.

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Conclusioni I principi etici fondamentali si applicano anche al neonato, sia a termine che pretermine. Nelle scelte difficili è essenziale che la comunicazione tra operatori e familiari sia completa e onesta, tenendo sempre presente il “best interest” del neonato. In caso di decesso del neonato va garantita una adeguata “care” per i familiari, sensibile, compassionevole e prolungata nel tempo Some babies may encounter difficulty and require resuscitation after being born outside of the hospital, and other babies will require resuscitation beyond the immediate newborn period. Although scenarios outside the delivery room are different, the physiologic principles and steps you take to restore vital signs remain the same. The priority for resuscitating babies at any time during the newborn period, regardless of location, should be to restore adequate ventilation. Once adequate ventilation is ensured, consider any available information about the baby’s history to guide the focus of your resuscitation efforts.

La legge e la rianimazione neonatale Le leggi variano da luogo a luogo Negli USA nessuna legge federale impone di effettuare la rianimazione in qualunque ciscostanza Si ritiene appropriato sospendere il supporto quando la rianimazione è ritenuta “futile” Laws and the regulations that implement them vary among jurisdictions and can change quickly. Health care providers should be aware of the laws in the areas that they practice. No law mandates attempt at resuscitation in all circumstances. If further medical intervention would serve no useful purpose (ie, would be futile), withdrawal of support is considered appropriate. If there is disagreement between the parent and the health care team, most hospitals can consult an ethics committee or legal counsel. Instructor Tip: Ask participants who makes the decision in their hospitals regarding starting or stopping resuscitation.  9-17 17