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"Infant had several episodes over the first week of life that could have allowed parents to change care path, but were encouraged instead to continue on with support."
"We as caregivers need to reinforce with parents that the complicated child is a time-consuming, life-altering situation. I think this conversation should happen in the first week of life for all complicated infants regardless of what the complication is (prematurity, cardiac, CDH)."
"My biggest takeaway from this patient scenario was realizing that the palliative care team should be consulted for essentially every admission in the hospital. They were so crucial to all the big conversations and especially at the end of life. They not only provided support to the family but also to the nursing staff who struggled throughout the journey as well."
The above quotes reflect two concepts that we will explore further in this module; the window of opportunity and automatic consults to palliative care. Let us begin with the window of opportunity.
The window of opportunity refers to a window of time in which the withdrawal of life-sustaining treatments (WLST) is still possible based on patient condition and intensive care needs. Any time point after this window would not be ideal for WLST as the patient may not be dependent on intensive care measures. A family is free to decide on WLST after the window of opportunity, but the patient may survive and with severe impairment. Notably, many patients, regardless of their predicted neurologic outcomes or need for intensive care, can survive unless the family decided to WLST.
Classically, hypoxic-ischemic encephalopathy (HIE) is the neonatal condition most often discussed in terms of the window of opportunity, at least from an ethics perspective. Select infants with HIE may be at risk for exceedingly poor neurologic outcomes, outcomes so severe as to justify, for some, WLST. In the US, most deaths related to HIE happen secondary to WLST. Neonates with severe HIE may have evidence of severe multisystem organ failure and may not breathe on their own. Given this, WLST via removal f the ETT can lead to a quick death. However, such a quick death depends on two things: our ability to prognosticate and the neonate's ability to maintain spontaneous respirations.
We shall tackle the latter concern first. Patients with perinatal HIE with multisystem organ failure often improve by 72 hours of age, as demonstrated in several studies. Some infants recover the ability to breathe on their own during the requisite time for therapeutic hypothermia. However, the newfound ability to breathe does not diminish their chances of a severely impacted neurologic outcome. WLST would have been appropriate for such neonates had it been carried out earlier in the patient's stay. WLST decisions made earlier in the patient's course may make death easier on the patient, but they are also prone to more uncertainty about the prognosis and give the parents less time to consider all of their reasonable options. Later withdrawal provides for more diagnostic certainty but also a higher chance of survival with severe developmental delay.
The degree of uncertainty in prognosticating neonates' outcomes with severe HIE (severe enough to warrant WLST) is troublesome and value-laden. Waiting for more certainty in the prognosis does not change the prognosis and may warrant withdrawal of artificial nutrition as the only means of death available if the neonate recovers the ability to breathe. The feeding of babies is rooted in deep societal expectations. While morally no different from withdrawing a ventilator, the withdrawal of artificial nutrition is viewed as less than ideal for neonates by many. Given this, many healthcare providers push for withdrawal earlier, given a shorter time to death when compared with the withdrawal of artificial nutrition. Accepting that uncertainty is prominent in neonatology, it follows that uncertainty exists regarding WLST for infants with HIE. When deciding to forgo continued life-sustaining measures, healthcare providers will tolerate more uncertainty when the patient's degree of impact is more significant.
To illustrate the above point further, consider the following scenario. The NICU admits two patients with HIE; one has multisystem organ failure and severe HIE as evidenced by EEG, the other has severe HIE and seizures. One of the patients also has associated congenital heart disease, the correction of which will place the infant on bypass, thus increasing the chances of neurologic sequelae. The outcome for both neonates may be decidedly unclear. Still, a family may tolerate less more uncertainty in WLST for the patient with co-morbid congenital heart disease, given the potential for a worse outcome. As straightforward as that example is, real life is seldom so explicit.
The withdrawal of artificial nutrition bears mention, and I explain it in the videos below. After the videos, please continue for a discussion of palliative care.
The American Academy of Pediatrics, amongst many other societies, promotes palliative care integration early on in the course of children with life-limiting conditions. Families who meet with palliative care providers early on in their child's course experience optimization of family-centered care, primarily since early integration can ensure alignment with the family's stated goals and values. Despite the importance of palliative care in the NICU, it does remain an underutilized resource.
Some centers have moved toward a schema of automatic palliative care consults for neonates with select diagnoses to combat the underutilization. Patients with highly complex diagnoses would benefit from palliative care consultation, but many centers are limited in what they can provide. Broad categories of patients who would benefit from palliative care in the NICU include those born at periviable gestational ages, neonates with specific genetic diagnoses, and those neonates for whom intensive care measures are no longer working. Specific trigger diagnoses for automatic consults vary by center but include; trisomy 13, trisomy 18, renal agenesis, bilateral polycystic kidney disease, and anencephaly. The use of trigger diagnoses for obligatory palliative care consults has increased such consults in the adult world and the PICU. Studies suggest that automatic triggers in the NICU can improve consults and provide better care for highly complex patients.
Notably, automatic triggers do have detractors. Some worry that automatic triggers will miss other patients who would benefit from a palliative care consult. The amount of patients who would meet the criteria for automatic triggers varies according to the patient population and case mix. While a subset of patients ought to have automatic consults placed based on their known diagnosis, still more patients should have consults placed based on their predicted outcomes and course.
Automatic triggers for palliative care consults demand buy-in from healthcare staff, particularly from neonatology faculty. Larger centers have reported that a designated palliative care representative for the NICU is also helpful. Perinatal palliative care, the consultation of a family before birth, is also crucial. It introduces the family to the palliative care team early on and assists in birth plan creation and expectations after delivery.
Below is the web address to a great resource on pediatric palliative care, the Center to Advance Palliative Care. You can find our palliative care protocol on the hospital intranet.
References:
Wilkinson D. The window of opportunity for treatment withdrawal. Arch Pediatr Adoles Med. 2011;165(3)
Humphrey L. Trigger criteria to increase appropriate palliative care consultation in the NICU. Pediatr Qual Saf. 2019;4
Carter BS. Pediatric palliative care in infants and neonates. Children. 2018;5(21)
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