This editorial can be found here in the November 2022 issue of the American Journal of Bioethics.
A provocative Target Article in this issue of AJOB proposes a new approach to decision-making for babies born in the “gray-zone” at the margins of viability. Titled “Postponed Withholding: balanced decision-making at the margins of viability,” it addresses a well-known problem in neonatal bioethics. Doctors and parents often agonize about what to do since treatment is neither clearly futile nor clearly beneficial and a decision about providing or foregoing life-prolonging treatments must instantly be made. In this “gray zone,” many options are legal, reasonable people disagree about the right thing to do, and a decision must be made. The proposed approach may not be the ultimate solution to these dilemmas but, for reasons that I will show, it should help us think about what is at stake in different approaches to these complicated decisions.
Janicke Syltern et al. start by explaining why these decisions are medically, ethically and emotionally so complex. They argue that, given this complexity, the parents are the legitimate owners of decisions in the gray zone and shared decision-making (SDM) is the appropriate process. In practice, however, the emotional stress and ethical complexity can inhibit a truly shared process of decision-making. As these authors note, parents are often overwhelmed by the invitation to participate and the need to make a rapid decision. This is why they propose a 3-part strategy to improve the process by which physicians work with parents to make these decisions. The aim of this strategy is to give the parents enough time to become competent, empowered decision-makers and promote SDM.
The proposed strategy is that: (1) life-sustaining treatment should be started as a default for all extremely preterm infants in the gray zone; (2) this should be labeled a non-decision and considered as only a temporizing delay in decision making; (3) a planned decision about further intensive care should be made at one week; At that point, the default action should be to redirect to compassionate care and cease life-prolonging measures for infants who still fall in the gray-zone unless parents explicitly ask for continued life-support. The authors refer to this as “the postponed withholding approach” (PPWH) because it allows the parents to opt for intensive care, or not, after a week. The approach tries to capitalize on the phenomenon that, for many people, withholding treatment feels preferable to withdrawal of treatment.
PPWP is presented as a practical and well-considered way of dealing with two problematic realities at the bedside that are familiar for all healthcare providers and parents involved in NICU-care. First, for babies in the gray zone, it is impossible to know each baby’s outcome and so it is uncertain whether resuscitation or comfort care is the best choice. Second, although SDM is preferred, the unexpected nature of preterm birth and the need for an immediate decision make it often impossible to adequately inform and involve the parents.
The approach is not perfect. In the Open Peer Commentaries, both health care providers and parents raise prescient objections and reservations at PPWP. They point out that sometimes there is enough time for proper counseling and default resuscitation is not appropriate; that a week of intensive care may not be the right time-frame; that withdrawal aversion in parents and HCP’s may not be universal; that ongoing evaluation may be better than default redirection of care; and that PPWP terminology could be more confusing than terms like “trial of therapy” or “informed non-dissent.” If nontransparent or confusing, PPWP could cause physicians’ moral distress and could influence parental trust in their doctors. Other nuances could and probably should be added.
Clearly, the PPWP approach is not the holy grail to decision-making about premature newborns in the gray zone. But it is valuable. Decisions at birth are less likely to reflect accurate prognostication of long-term prognoses. The perfect prognostic tool is unlikely to be available soon. The dilemma of needing to make decisions under conditions of significant uncertainty will not go away. PPWP highlights these features of gray zone decisions. It challenges us to come up with better ways to improve balanced and SDM in the gray zone.
The main argument to support the use of SDM is the ethical and moral desire to respect and facilitate the autonomy of parents as surrogate decision-makers for the patient. Key steps of the SDM process include creating choice awareness (physician explains the problems, acknowledges that a decision needs to be made and that the parent’s opinion is important), describing treatment options and elucidating the parent’s preferences and values, including the parent’s decisional role preference. SDM is increasingly seen as a process that compromises multiple consultations to allow thought processing and reflection time for the patient, and to allow enough time for the physician (and the team) to explore treatment options and council the parents.
Clearly, the process of SDM takes time. Time is of value to all stakeholders. But time constraints will not go away. Recognition of the importance of time is the most important value of the PPWP approach.
As Syltern et al. argue, time is essential if we want to truly empower parents. They argue that, with time, empowered parents are able to cope, control, find meaning, make decisions and achieve family well-being. The PPWP approach allows time for empowerment and thus explicitly emphasizes the importance of parental empowerment. It connects well to the reports in the literature that parents feel empowered in their parental role when they are informed and encouraged to participate in care and decision‐making. We would need studies to find out if PPWP really sufficiently empowers parents and improves the process of SDM. To date, there has been little evaluation of different approaches to parental empowerment. This is a crucial piece of the puzzle of neonatal bioethics.
The greatest strength of the PPWP approach is that it incorporates a robust notion of parental autonomy. Syltern et al. respect parents and it is that respect that demands a decision based on continuous evaluation of the clinical situation and a process by which parents have time to understand what is at stake. If, after a week, parents do not request life-prolonging treatments, the decision will likely be one that they have carefully considered and that is more likely to reflect their true values. Physicians should feel more comfortable respecting such parental choices, even if they do not agree with them.
Syltern et al. do not address a crucial question that will certainly arise in the PPWP approach. Until when does the parental choices prevail, or in other words, are the boundaries of the gray zone fixed and clear? The gray zone in end-of-life decision-making for premature newborns varies widely between countries and among individual HCP’s. A wider zone means that physicians feel comfortable with parents as the legitimate owners of decisions during a longer period of time. Importantly, the infant’s prognosis changes with time as events and exposures for the preterm infant mount-up and parents change and evolve. HCP’s should probably discuss these boundaries with the parents as a part of the continuous evaluations in the NICU and establish them/accept them as a part of individualized care.
PPWP is a practical and important model to better ensure parental involvement and to promote SDM. It is not perfect, but its emphasis on parental empowerment may help us rethink gray-zone decision-making, evaluation and boundaries.
A. A. E. (Eduard) Verhagen