Decision Making for Seriously Compromised Newborns
Decision Making for Seriously Compromised Newborns
The extensive literature on decision making for newborn infants focuses mainly on decisions at the limits of viability. Relatively little has been written on full term infants with congenital abnormalities. This scarcity of literature on outcomes for rare presentations leads to a level of uncertainty that, even in the best of circumstances, is ethically and emotionally difficult for both physicians and families. When there are significant cultural differences involved, conflicts are intensified.
In the face of ambiguity about a newborn's ability to survive, the President's Commission report, Deciding to Forego Life-Sustaining Treatment, recommends that 'great discretion is to be afforded to the parents.' That position was reiterated in the 'American Academy of Pediatrics' 2007 Guidelines on care of newborns that states that in the gray area 'where prognosis is uncertain but very likely to be poor and survival associated with a diminished quality of life—parental desires should determine the treatment approach.'
Those guidelines mark the acceptance of the view that when the long-term outlook for a newborn is ambiguous or uncertain it is parents, not physicians, who are the ones to make the decision on initiating or withdrawing medical interventions. They also recognized the legal standard, first articulated in the landmark Quinlan case, that even the non-decisionally capable patient has the 'right' of personal autonomy or self-determination. The issue is not whether the non-competent patient have that right, but who exercises the right for the patient. For infants where the long-term outcome is unclear, the consensus in both the legal and the ethical community is clear: absent evidence of neglect or abuse, it is the parents who make that decision.
The focus on patient 'autonomy,' that is, the right of the competent adult to decide for himself is rooted in John Stewart Mill's ringing declaration in On Liberty that 'Over himself, over his body and mind, the individual is sovereign.' Other than in self-defense Mill finds no justification for compelling an individual to act other than as the individual desires. In an influential essay entitled 'Paternalism' Gerald Dworkin challenges Mill's thesis. He argues that interfering with a person's liberty may be justified when the person's decisions 'involve dangers that are either not sufficiently understood or appreciated by the person making the decision.' Dworkin does not reject individual autonomy. Rather he attempts to protect the 'authentic autonomy' of the individual, that is, what the individual would choose if he or she had a more complete picture of the context or situation.
Julian Savulescu applies Dworkin's approach on paternalism to medical decision making. Rather than automatically accepting the patient's choice as dispositive, Savulescu notes that physicians ought to advise the patient or proxy on the possible non-intended consequences of their choice. In the case of GC, for example, the parents' desire was to nurture their infant son for, however, brief his life might be while surrounded and supported by their extended family in the Middle-East. Yet, attempting to board a commercial transatlantic flight with a seriously-ill infant who on continuous oxygen and a nasogastric feeding tube would not prove successful. Even bringing a seriously ill newborn home without the on-going supervision of a palliative care team would present serious potential problems. Although in a remote mountain village in the Middle-East such a death might be common, the body washed and wrapped by members of the family and the burial undertaken by the people of the village, in the United States family control over death and burial are not an accepted custom.
The death of an infant at home without medical supervision would necessarily involve a police investigation, a coroner's inquest and questions of abandonment or negligent behavior on the part of the treating physician. These actions could lead to disciplinary sanction of the parents and physicians, civil liability or allegations of criminal misconduct. The inquiries could quickly escalate into questions of medical neglect or criminal negligence by the parents. Under California law, for example, a parent who 'under circumstances or conditions likely to produce great bodily harm or death…willfully causes or permits the person or health of (a) child to be injured, or willfully causes or permits that child to be placed in a situation where his or her person or health is endangered' may be imprisoned for as many as six years. A young immigrant couple without family or social support in this country would find themselves ill-equipped to handle the legal and media maze, in which they might quickly be entrapped.
To avoid such unintended consequences, Savulescu argues the physician's role must be more than a mere 'fact-provider.' The physician's fiduciary duty to act in the best interests of the patient—and in the case of a dying newborn of the anxious and frightened parents—requires that the physician examine the total context in which the decision is being made. At a minimum, the physician must assure the parents have given sufficient weight to the consequences that will flow from the choices they make. It is not enough for the attending neonatologist to provide the parents with the medical facts, interpret them, provide a realistic prognosis and ask, 'What do you want to be done?' Frightened young immigrant parents, distrustful of the doctors and confronted with what they perceive as a normal baby who is being injured by the medical treatments, might legitimately want to rescue their child from the clutches of the doctors, flee that environment and bring their child to the safety of their own home. The treating physician must consider not only the parents' choice, but the total context in which the seriously ill-infant is situated.
In this case a two-hour multidisciplinary family conference allowed the parents to express their hope and fears, explore options, seek a second opinion and be assured that the treating physician would cooperate in the child's transfer if the consulting hospital was willing to accept care of the child. The treating physician and the parents also explored the options and potential consequences of taking the child back to the Middle-East or of taking him home to be cared for as best the parents could provide.
Once the parents understood that the treating physician respected their desire to care for their child at home, they agreed to have on-going medical supervision of the child's care. The palliative care team was comfortable with the infant's care and the mother was satisfied with her son's condition. She even brought him back for a visit to the Newborn Intensive Care Unit where she described him as a 'good baby' who didn't fuss. She was not alarmed by his lack of growth or movement.
J. Andrew Billings, in an essay on 'end-of-life care' describes a vast literature on the topic of family meetings in an intensive care unit setting. These meetings generally involve what Kirchhoff et al. describe as 'deeply anxious families thrown into a hospital setting that is often strange and frightening who must work with unfamiliar health care professionals, and may be faced emergently with terrible choices.' That grim situation is compounded when, as was true in the case of Baby GC, the family are a young immigrant couple far from their homeland who are confronted with a baby born with a rare genetic disease that results in unanticipated medical issues. Even worse is a situation, in which the parents fear that the child's condition is exacerbated by the medical treatment imposed by incompetent physicians.
Billings indicates that the primary factor for scheduling family conferences is conflict among family and staff. That breakdown, Edmund Pellegrino and David Thomasma point out, occurs when an 'ethos of distrust' poisons the patient-physician relationship. Once that distrust arises, wariness and outright hostility take over. In this case, the distrust was so profound the parents believed the physicians were not helping, but were intentionally harming their child. Given that perception, their desire to flee from the hospital and treating doctors was not unreasonable. It took much time, patience, openness, truthfulness, honesty and willingness to try to understand the parents' values and goals to overcome that 'ethos of mistrust.'
Only when the parents accepted the fact that the new treating physician understood their goals, was able to provide a medical rationale for their child's condition and was willing to work with them to achieve their hopes for their child, was it possible to restore some semblance of trust. Even then, the goal of the parents to return with their baby to their native country could not immediately be achieved.
The physician could not simply hand over to the parents a newborn who faced the real possibility of an aspiration death. Nor could the physician let the parents misguided belief that they could readily board a plane and fly back to the Middle-East with a seriously ill infant go unaddressed. To achieve the parents' goal of taking their dying infant home required that they trust the neonatologist guidance not only with regard in the medical issues, but also the complex and nuanced questions that were wholly foreign to the parents' experience. What is required in such a situation is what Joseph Fins describes as a 'covenantal' as opposed to 'contractual' model of the patient-physician relationship, that is, 'one that instructs us to examine the facts and circumstances of particular cases to reach ethically appropriate decisions.'
That casuistic approach to problem solving focuses not so much on ethical principles, but on the context or situation in which the principles are to be applied. It insists that to solve moral problems we must confront the gritty reality of life as lived—not merely ask what ethical principles should guide the decision. In this case it was not abstract theories, but airline policies on the need for 'medical clearance' before an ill-passenger will be allowed to fly, a coroner's concern with 'cause of death,' legal issues of negligence, abandonment and criminal neglect and most of all cultural understandings about parenting and the role of medicine that required attention. These in turn demanded a trusting relationship between parents and physician—a trust by the physician that the parents were caring, loving, individuals who wanted what was the best for their seriously compromised newborn and a trust by the parents that the treating physician listened to and took their concerns seriously. Most of all, it required a trust between the two parties that they shared the same goal: an opportunity for the seriously ill to live out whatever remaining time he had in a caring, loving environment.
Discussion of Parental Role in Decision Making
The extensive literature on decision making for newborn infants focuses mainly on decisions at the limits of viability. Relatively little has been written on full term infants with congenital abnormalities. This scarcity of literature on outcomes for rare presentations leads to a level of uncertainty that, even in the best of circumstances, is ethically and emotionally difficult for both physicians and families. When there are significant cultural differences involved, conflicts are intensified.
In the face of ambiguity about a newborn's ability to survive, the President's Commission report, Deciding to Forego Life-Sustaining Treatment, recommends that 'great discretion is to be afforded to the parents.' That position was reiterated in the 'American Academy of Pediatrics' 2007 Guidelines on care of newborns that states that in the gray area 'where prognosis is uncertain but very likely to be poor and survival associated with a diminished quality of life—parental desires should determine the treatment approach.'
Those guidelines mark the acceptance of the view that when the long-term outlook for a newborn is ambiguous or uncertain it is parents, not physicians, who are the ones to make the decision on initiating or withdrawing medical interventions. They also recognized the legal standard, first articulated in the landmark Quinlan case, that even the non-decisionally capable patient has the 'right' of personal autonomy or self-determination. The issue is not whether the non-competent patient have that right, but who exercises the right for the patient. For infants where the long-term outcome is unclear, the consensus in both the legal and the ethical community is clear: absent evidence of neglect or abuse, it is the parents who make that decision.
The focus on patient 'autonomy,' that is, the right of the competent adult to decide for himself is rooted in John Stewart Mill's ringing declaration in On Liberty that 'Over himself, over his body and mind, the individual is sovereign.' Other than in self-defense Mill finds no justification for compelling an individual to act other than as the individual desires. In an influential essay entitled 'Paternalism' Gerald Dworkin challenges Mill's thesis. He argues that interfering with a person's liberty may be justified when the person's decisions 'involve dangers that are either not sufficiently understood or appreciated by the person making the decision.' Dworkin does not reject individual autonomy. Rather he attempts to protect the 'authentic autonomy' of the individual, that is, what the individual would choose if he or she had a more complete picture of the context or situation.
Julian Savulescu applies Dworkin's approach on paternalism to medical decision making. Rather than automatically accepting the patient's choice as dispositive, Savulescu notes that physicians ought to advise the patient or proxy on the possible non-intended consequences of their choice. In the case of GC, for example, the parents' desire was to nurture their infant son for, however, brief his life might be while surrounded and supported by their extended family in the Middle-East. Yet, attempting to board a commercial transatlantic flight with a seriously-ill infant who on continuous oxygen and a nasogastric feeding tube would not prove successful. Even bringing a seriously ill newborn home without the on-going supervision of a palliative care team would present serious potential problems. Although in a remote mountain village in the Middle-East such a death might be common, the body washed and wrapped by members of the family and the burial undertaken by the people of the village, in the United States family control over death and burial are not an accepted custom.
The death of an infant at home without medical supervision would necessarily involve a police investigation, a coroner's inquest and questions of abandonment or negligent behavior on the part of the treating physician. These actions could lead to disciplinary sanction of the parents and physicians, civil liability or allegations of criminal misconduct. The inquiries could quickly escalate into questions of medical neglect or criminal negligence by the parents. Under California law, for example, a parent who 'under circumstances or conditions likely to produce great bodily harm or death…willfully causes or permits the person or health of (a) child to be injured, or willfully causes or permits that child to be placed in a situation where his or her person or health is endangered' may be imprisoned for as many as six years. A young immigrant couple without family or social support in this country would find themselves ill-equipped to handle the legal and media maze, in which they might quickly be entrapped.
To avoid such unintended consequences, Savulescu argues the physician's role must be more than a mere 'fact-provider.' The physician's fiduciary duty to act in the best interests of the patient—and in the case of a dying newborn of the anxious and frightened parents—requires that the physician examine the total context in which the decision is being made. At a minimum, the physician must assure the parents have given sufficient weight to the consequences that will flow from the choices they make. It is not enough for the attending neonatologist to provide the parents with the medical facts, interpret them, provide a realistic prognosis and ask, 'What do you want to be done?' Frightened young immigrant parents, distrustful of the doctors and confronted with what they perceive as a normal baby who is being injured by the medical treatments, might legitimately want to rescue their child from the clutches of the doctors, flee that environment and bring their child to the safety of their own home. The treating physician must consider not only the parents' choice, but the total context in which the seriously ill-infant is situated.
In this case a two-hour multidisciplinary family conference allowed the parents to express their hope and fears, explore options, seek a second opinion and be assured that the treating physician would cooperate in the child's transfer if the consulting hospital was willing to accept care of the child. The treating physician and the parents also explored the options and potential consequences of taking the child back to the Middle-East or of taking him home to be cared for as best the parents could provide.
Once the parents understood that the treating physician respected their desire to care for their child at home, they agreed to have on-going medical supervision of the child's care. The palliative care team was comfortable with the infant's care and the mother was satisfied with her son's condition. She even brought him back for a visit to the Newborn Intensive Care Unit where she described him as a 'good baby' who didn't fuss. She was not alarmed by his lack of growth or movement.
J. Andrew Billings, in an essay on 'end-of-life care' describes a vast literature on the topic of family meetings in an intensive care unit setting. These meetings generally involve what Kirchhoff et al. describe as 'deeply anxious families thrown into a hospital setting that is often strange and frightening who must work with unfamiliar health care professionals, and may be faced emergently with terrible choices.' That grim situation is compounded when, as was true in the case of Baby GC, the family are a young immigrant couple far from their homeland who are confronted with a baby born with a rare genetic disease that results in unanticipated medical issues. Even worse is a situation, in which the parents fear that the child's condition is exacerbated by the medical treatment imposed by incompetent physicians.
Billings indicates that the primary factor for scheduling family conferences is conflict among family and staff. That breakdown, Edmund Pellegrino and David Thomasma point out, occurs when an 'ethos of distrust' poisons the patient-physician relationship. Once that distrust arises, wariness and outright hostility take over. In this case, the distrust was so profound the parents believed the physicians were not helping, but were intentionally harming their child. Given that perception, their desire to flee from the hospital and treating doctors was not unreasonable. It took much time, patience, openness, truthfulness, honesty and willingness to try to understand the parents' values and goals to overcome that 'ethos of mistrust.'
Only when the parents accepted the fact that the new treating physician understood their goals, was able to provide a medical rationale for their child's condition and was willing to work with them to achieve their hopes for their child, was it possible to restore some semblance of trust. Even then, the goal of the parents to return with their baby to their native country could not immediately be achieved.
The physician could not simply hand over to the parents a newborn who faced the real possibility of an aspiration death. Nor could the physician let the parents misguided belief that they could readily board a plane and fly back to the Middle-East with a seriously ill infant go unaddressed. To achieve the parents' goal of taking their dying infant home required that they trust the neonatologist guidance not only with regard in the medical issues, but also the complex and nuanced questions that were wholly foreign to the parents' experience. What is required in such a situation is what Joseph Fins describes as a 'covenantal' as opposed to 'contractual' model of the patient-physician relationship, that is, 'one that instructs us to examine the facts and circumstances of particular cases to reach ethically appropriate decisions.'
That casuistic approach to problem solving focuses not so much on ethical principles, but on the context or situation in which the principles are to be applied. It insists that to solve moral problems we must confront the gritty reality of life as lived—not merely ask what ethical principles should guide the decision. In this case it was not abstract theories, but airline policies on the need for 'medical clearance' before an ill-passenger will be allowed to fly, a coroner's concern with 'cause of death,' legal issues of negligence, abandonment and criminal neglect and most of all cultural understandings about parenting and the role of medicine that required attention. These in turn demanded a trusting relationship between parents and physician—a trust by the physician that the parents were caring, loving, individuals who wanted what was the best for their seriously compromised newborn and a trust by the parents that the treating physician listened to and took their concerns seriously. Most of all, it required a trust between the two parties that they shared the same goal: an opportunity for the seriously ill to live out whatever remaining time he had in a caring, loving environment.
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