Page 8 - American Nurse Today January 2008

Starting palliative care in the NICU
Brian Carter, a neonatologist at Vanderbilt University, suggests considering these is- sues before starting palliative care in the neonatal intensive care unit (NICU).
• What do staff and families consider the optimal care environment for the neona-
tal patient and family?
• What barriers (physical or philosophical) limit palliative care?
• When should families be approached about making non-treatment decisions
and who should approach them? How are these discussions to be documented?
• How does a “do not resuscitate” order affect advanced care planning?
• Are pain and symptom management being addressed optimally?
• What roles do social workers, nurse educators, child-life specialists, behavioral
health specialists, pastoral care providers, and bereavement specialists currently have in the NICU? Can their roles in patient care be expanded to cover the broad needs presented by palliative care services?
• Is there a parent support group?
• How are the needs of the healthcare staff supported?
• What links exist or can be developed with a local hospice?
• Are community resources accessible to ensure family-centered care and excel-
lent palliative care, regardless of the site of care?
• change and changeability
• balance of rationality and feeling
• idiosyncrasy
• neocortical function.
Because neonates don’t meet these criteria, according to this line of reasoning, the “... termination
of an infant’s life in the first few months following extraction from the womb could not be looked up- on as murder” or even mercy killing.
Birth of the Baby Doe Regulations
Reacting to the highly publicized Ba- by Doe cases and to this type of thinking, the Reagan Administration formulated the Baby Doe Regula- tions in 1984, making the withhold- ing of neonatal intensive care on the basis of handicap—or increased risk of handicap—a violation of the Re- habilitation Act of 1973. Threatened by the loss of federal funds, hospi- tals were required to post signs with the phone number of a Baby Doe Hotline, so anyone could report cas- es of non-treatment. These reports were to be investigated immediately by Baby Doe Squads that interrogat- ed physicians, nurses, and others. A storm of protest followed. Then, in 1986, the U.S. Supreme Court struck down these regulations on the
grounds that the Rehabilitation Act didn’t apply to the medical care of handicapped infants.
In the interim, Congress passed the Child Abuse and Treatment Act of 1984—also called the revised Ba- by Doe Regulations—which defined the withholding of medically indi- cated treatment as child abuse. The act requires medical treatment ex- cept when it’s futile. Treatment is considered futile when an infant is chronically or irreversibly comatose, treatment would “merely prolong dying,” or treatment would be both “virtually futile in terms of survival of the infant” and “inhumane.”
What is futile treatment?
The terms “futile,” “virtually futile,” and “inhumane” are only vaguely defined in the legislation, making the Child Abuse and Treatment Act difficult to interpret in clinical prac- tice. Determining if medical care is futile requires clinical judgment based on an analysis of the circum- stances and a projection of the like- ly outcome. Futility became a deci- sion-making criterion because it offered a definable interpretation of the patient’s good.
More recently, the legal doctrine of informed consent established the
patient’s (or the surrogate’s) right to participate in decision making, par- ticularly when death may result. Thus, the physician decides what can be done, but the patient (or sur- rogate) makes the value decision about what will or will not be done. As a nurse, you may be involved in supporting and counseling the par- ents, providing them with informa- tion, and helping them deal with the consequences of their decisions.
All clinicians and parents know that at some point treatment is no longer warranted and may cause unnecessary suffering. To continue treatment in such circumstances vi- olates the first and second princi- ples of medical ethics: Do no harm and Act in the best interests of the patient. If the futile treatment is painful, offering or continuing its use is cruel and is the opposite of the beneficence demanded by these two principles that form the moral center of the healing relationship.
Yet, given the first Baby Doe Regulations and the vague wording of the revised Regulations, neona- tologists may err on the side of over-treatment, even to the point of cruelty. The absence of a precise definition of futility, the advances in medicine, and the potential legal repercussions for physicians have contributed to over-treatment.
Is over-treatment the norm?
Today, some clinicians believe that over-treatment of even the most se- verely handicapped infant has be- come the norm. In response to this situation, some philosophers and clinicians now call for a repeal of the Child Abuse and Treatment Act, so parents and clinicians will have the freedom to make decisions within the privacy of the patient- physician relationship.
But not everyone agrees. In 1997, a study was undertaken to determine the frequency of selec- tive non-treatment of extremely premature, critically ill, or mal- formed infants among all infant
8 American Nurse Today Volume 3 , Issue 1