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Creation of a Neonatal End- of- Life Palliative Care Protocol. VENTILATOR REMOVAL, PAIN AND SYMPTOM MANAGEMENTAt times, cessation of certain technological supports accompanies the provision of palliative care. The following information addresses: (1) how to prepare the family, staff, and facility for discontinuation of ventilator support, and (2) the process of removing the ventilator in a manner that minimizes discomfort for the infant and the family.
Exercise 1: Standard Precautions/Isolation Technique 1 EXERCISE 1: STANDARD PRECAUTIONS AND ISOLATION TECHNIQUES Textbook: Chapter 5: Infection Control. Creation of a Neonatal End-of-Life Palliative Care Protocol. Anita Catlin DNSc, FNP 1 and Brian Carter MD, FAAP 2: 1 Napa Valley College, Napa, CA, USA. Return to Main Peer Review Meetings. Randolph Chitwood Jr., M.D., FACS, FRCS (Eng) Senior Associate Vice-Chancellor for Health Affairs. SimNewB is an interactive simulator, designed by Laerdal with the American Academy of Pediatrics to meet the training requirements of the Neonatal Resuscitation. Preparation. The entire focus of ventilator removal must be concern for the comfort of the infant in a setting that allows privacy for the family. Providers should assure parents that every attempt to prevent suffering will be taken and that their infant will be treated with dignity and expertise in comfort measures. Parents must be provided time to respond to the critical situation, and encouraged to direct how the process should go. Medical records should reflect the substance of patient care conferences with parents and care orders written should be clear to staff members. Orders to cease mechanical ventilation, forgo cardiopulmonary resuscitation, to cease monitoring vital signs and drawing blood samples should be written in the chart with appropriate signatures and documentation. Parents should be able to gather their significant others and bring in their religious, spiritual, or cultural leader to conduct a ceremony or provide support. Once the decision is made, parent education should include that no further resuscitation efforts will occur. A change of shift for nurses or change of attending physicians should not alter the plan once it is decided upon without discussion and approval of the whole team and family. Consideration for notifying the ethics committee or risk manager about the decision may be appropriate in some facilities. Special permission must be obtained by the medical examiner in the instance of coroner's cases. The sequence of events should be laid out for parents in advance and they may express their preferences about the process. Parents should be helped to understand that not every newborn dies immediately after the ventilator is removed. A contingency plan should be discussed, specifically including where and by whom the infant will be managed under a palliative care regimen (see Process section). When available, the hospice team should be notified in advance if it is thought that the infant may not immediately expire or if the family desires to go home if the infant survives after extubation. It is appropriate to discuss autopsy and organ/tissue donation concurrently with removal of life support discussions. Some parents may wish to address how the body will be handled after death and to indicate that they would like to have the infant buried or cremated; others may allow the body to be taken to pathology. Process. Parents should decide who will be present at the time of extubation. Staff, including the social worker, neonatologist, spiritual advisor, and primary nurse, should be close by and available upon request. Parents can hold a service at the bedside as desired. If parents wish, a nurse or other designee may bless or baptize the baby if no clergy have been invited, or parents may do so themselves. Staff should work out in advance who will be doing what part of removal of technological support such as removal of invasive lines, monitors, and the endotracheal (ET) tube. The actual turning off of the ventilator has often been seen as a physician responsibility. Staff should anticipate and have available medications that may be needed based on the infant's condition. Drugs such as vasopressors and antibiotics should be discontinued. Monitors should be removed and all alarms turned off. Neuromuscular blocking agents (paralytics) should never be introduced when the ventilator is being withdrawn. If the newborn has been on paralytics, these should ideally have been weaned off hours to days earlier. On rare occasions, the ongoing pharmacologic effect of paralytics might be construed as contributory to patient death following removal of the ventilator. In all cases, when paralytics have been recently part of the newborn's care, the medical record should attest to: (1) physician and parent discussion, understanding, and consideration of this fact in view of the decision to remove the ventilator; (2) an affirmation of the intent of such decisions being to relieve suffering associated with burdensome and nonbeneficial care; and (3) the disproportionate burden imposed upon the patient and family of waiting lengthy hours or days for the paralytic effects to diminish. Intravenous access must remain in place to give medication for symptom relief. Infants will need pain relief, relief for labored respirations or perhaps seizure activity. The pharmacy should assist in preparing proper doses of medications in intravenous, suppository, or buccal delivery form. Doses of medication should be sufficient to provide comfort and prevent signs of air hunger. Relevant medications include narcotic and non- narcotic analgesics, medications to relieve air hunger, sedatives, diuretics, hypnotics, anticholinergics, anticonvulsives, and antipyretics. Standard reference resources are available. A. C., B. C.) can provide dosage lists upon request. Prior to removal of the ET tube and disconnecting the ventilator, the alarms on the ventilator should be turned off. The ET tube should be gently suctioned when removed and the mouth gently cleaned. Then the ventilator can be shut off. If possible, the baby should be held in the parent(s)' or a staff member's arms when this takes place. If possible, any tape on the face, or other unnecessary lines, should be removed. If not removed, these lines should be tied off and any open areas covered with gauze pads. Supplemental oxygen is usually not given when a ventilator is withdrawn. Parents may wish to administer oxygen to provide comfort. It may be more appropriate to administer morphine if an infant exhibits signs of shortness of breath, such as nasal flaring, air hunger, color changes, or grunting, as some clinicians report the possibility of oxygen prolonging the dying process. A suction machine or bulb suction should be available. Environmental support should provide for as much of a normal and nurturing environment as possible. Lights can be kept low, especially if color changes are expected. Noise should be kept to a minimum with phones and pagers turned low and staff conversations at a minimum. The infant can be dressed in his/her own clothes, bathed, diapered, and bundled by parents. Parents can bathe the infant, do infant massage, attempt breastfeeding, or engage in kangaroo care. Availability of music playing and rocking chairs is helpful. A nurse should gently describe any physical changes that might be taking place and occasionally check to see if there is no heartbeat. The infant should continue to be observed and treated for any signs of dyspnea, discomfort, agitation, or seizures. Parents and family members should be able to hold the infant for as long as they need to, which may be for an extended time after death. Mementos can be obtained by nurses, such as lock of hair, hand- or footprints in plaster, and photos of family together, if this is culturally appropriate. If the infant has serious anomalies, photos of hands, ears, lips, and feet can be provided. Ear prints and lip prints are possible. Some parents have indicated that mementos of a newborn who died are not acceptable in their culture. Parents require care after the infant has died. It is helpful to walk parents out to their cars so they do not have to feel so alone when they leave. Parents can be given a memory box or stuffed animal to avoid walking out with empty arms. Cleaning of the bed space area should not be done until they are gone. Occasionally, due to distance or home responsibilities, parents cannot be present or may choose not to participate at all or only in portions of care as described above. The process would be similar, with a staff person holding the infant from the time of extubation until death, and a box of keepsakes retained on the unit in case family desires them later. |
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