TALKING WITH PARENTS
I. INITIAL CONTACT
A. Inborn infants: talk with the parents as soon as the infant is stable in the NICU. This initial conversation with the parents should focus on:
1. An explanation of the problems of the infant
2. A general description of the problems and management plan using cautious optimism.
3. Encouraging the parents to visit the NICU.
4. Find out who the primary nurse is prior to calling on the parents so that you can explain the nursing system, NNP, Resident and Attending staff to the parents. Reassure the parents that they should be able to talk to someone on this team every day - and if they can’t find someone to feel free to call the Neonatology office at 455-7939 or the NICU at 455-7165 and arrange an appointment.
Outborn infants: call parents as soon as infant is stable and discuss the above. Encourage parents to come in and personally meet with the patient care team.
House Officer Change:
Call parents within 24 hours of rotation onto service and prior to leaving service.
II. ONGOING CONTACT WITH PARENTS
A. Talk personally to the parents at least twice per week or more often when:
1. There are sudden changes in condition either positive or negative
2. Baby becomes critically ill.
Remember that it is equally as important to contact parents personally when there is a dramatic improvement in an infant as when there is a dramatic deterioration.
B. The infant who becomes chronically ill is a special case requiring exceptionally good communication between doctors, nurses, and parents.
1. As soon as practical, the parents need to be given some idea of the chronicity of their child’s problem, and in particular, some understanding of the problems to be encountered and the time frame.
2. Monthly – or sometimes more often -- meetings of the parents, primary nurses, social workers and physicians may be required to accomplish this goal.
III. SUGGESTIONS FOR IMPROVING PARENTAL COMMUNICATION
A. Always use the baby’s first name. If you can’t remember it, at least don’t forget if their infant is a boy or a girl (sex of infant is usually labeled outside Mom’s room or at the infant’s bedside)!
B. Use terms the parents can understand
C. Always explain special procedures such as an LP, umbilical catheters, CT scans, etc. Handout sheets are available at the front desk for many of these procedures.
D. Encourage questions
E. Always listen to what the parents have to say
F. Separate facts known about each patient from your interpretation of possible diagnoses or prognoses.
G. Avoid excessive pessimism or optimism when speaking with parents.
H. Remember that facts often have to be repeated. Only so much information can be retained per visit.
I Have the parents been given a picture of the baby and the packet of information about the GHS Children’s Hospital NICU?
J. If the parents do not speak/understand the English language, Spanish translators (and some other language translators) are available at GHS. Contact one of the Social Workers for details on this service. Avoid using a family member/friend to act as a medical translator for the mother or father unless it is absolutely necessary.
IV. ROLE OF THE ATTENDING PHYSICIAN
You should always give the parents the option of speaking with the responsible attending physician--although middle of the night conversations are discouraged unless there is a family or infant crisis. Appointments can be made through the Neonatology Office - 455-7939 or via the NICU – 455-7165.
Inform the attending when the parents are in the unit, if possible. This is especially important if the parents are rarely at bedside or if there is important new information on the infant.
C. This is particularly urgent in cases of a dying child or in situation where there are congenital malformations or chromosomal abnormalities.
ETHICS, MALFORMATIONS AND THE DYING PATIENT
I. General guidelines
A. Frequent talks with patents can avoid the “crisis” conference where “ethical” decisions need to be made (discontinuing treatment, etc.).
B. An honest approach to the parents is always best. There is no need to “sugar coat”; however, there are always lots of unknowns that occur when an infant is critically ill and you and the parents will face these together.
C. If you can’t answer a parent’s question, tell them “I don’t know” and tell parents that you will seek appropriate advice or opinions from more knowledgeable sources.
D. When multiple disciplines are involved in an infant’s care (Peds, Ortho, NSGY, Surgery, Genetics, etc.), you are the coordinator and should be involved with any discussions that they have with the parents. You should attempt to “tie everything together” for the parents after these multidisciplinary discussions.
E. The Attending Neonatologist should always be an integral part of discussions with parents regarding ethical decisions.
What is an Ethical Decision?
EXAMPLES
A. Whether or not to discontinue ventilator support in an infant with a massive IVH
B. Whether or not to intervene with medical support in certain genetic defects (Trisomy 13 or 18).
C. Whether or not to support a less than 500 gram infant or < 24 weeks gestational age.
NOTE: These cases are examples and obviously the answer will not be the same in every case. Each infant must be evaluated individually.
Without advanced discussion with the parents, the delivery room is NOT THE PLACE TO MAKE THESE DECISIONS! If there is any question, resuscitation is indicated and the necessary decisions can subsequently be made in the NICU.
III. Approach to the Ethical Problem
A. Gather as much information as possible (have consultants place a note in the chart, verbal communication alone is not satisfactory). Additional information that may be helpful include:
Neurology evaluation to help determine prognosis (when appropriate)
CT or MRI scan
EEG
Neurosurgery Consult in some cases.
Genetics consult
After the data is collected, allowances should be made for all involved to express their opinions.
C. Discuss (options) with the parents. Divide this discussion into several sections:
Facts – and only the facts. This consists of a review of the data concerning each aspect of the infant. Take care not to confuse the facts (the Ultrasound results, the X-ray findings, the ventilator settings, etc.) with the prognosis (a Grade III IVH results in…, infants on these vent settings develop….). Facts are not arguable; they can be objectively documented
Prognosis – This is where one takes the facts and uses statistical probability and experience to predict probable outcomes. Usually this discussion involves a wide range of possible outcomes
Range of possibilities – When discussing the management options, it is helpful to discuss what is possible within the boundaries of our current medico/ethical and legal system. For example, is it possible to disconnect ventilatory life support or not? The range of options from the most aggressive intervention to complete non-intervention should be discussed.
Recommendation – Here is where a personal/professional recommendation may be offered to the parents. Take care to label this opinion as a recommendation. It is also possible that no recommendation be offered.
Discussion – Take time to listen to parents. Ask them if they understand all of the facts, prognoses, and recommendations. Ask them for their opinions concerning the care of their infant. Oftentimes, they cannot make a decision and need time to reflect or discuss the items discussed with other family members, clergy, etc. - this is an appropriate reaction.
D. Final decision must rest with the parents and the Attending Neonatologist
E. Further discussion with the parents (recommendations)
Decisions regarding limitations of care are reached by mutual agreement between the physicians and the parents/legal guardians. When a conflict in opinion between the Medical Staff and the parents occurs, consultation with the Children’s Hospital Ethics Team + Risk Management may be needed.
F. Involvement of Parent Support Group parents. Currently there is a Parent-to-Parent support group funded by the state and private donations. This group can be contacted via the NICU Social Workers
IV. Special Non-Lethal Problems
The meningomyelocele (MMC - these patients are “special” in that the majority will require ventriculoperitoneal shunting and they have the potential to be non-ambulatory if post operative neurological status demonstrates lack of sensory and motor activity at the knees and below. Thus, patients such as these place potentially significant burdens on both their families and on society).
1. The following consultants should be immediately mobilized
Neurosurgery
Consider Pediatric Cardiology (10% of these infants actually have cardiac disease as part of a syndrome)
Consider Genetics Consult if the parents have not already seen the Geneticist
Pediatric Urology
Social Services
2. Procedures
All MMC patients should be considered to have the potential for severe Latex allergies!
Routine admission labs and pre-op studies
Head ultrasound, CT scan or MRI
CXR and spine films
Cardiac ECHO and possibly a renal ultrasound (particularly with thoracic lesions)
3. A meningomyelocele team is centered at the Shriner’s Hospital. Parents should be aware that this clinic will assist in providing follow-up for their child.
V. Helping Parents Cope with Death of a Newborn
A. Tell parent(s) immediately, even if only one parent is present
B. Encourage them to see and touch and hold the infant
- even if it has anomalies
- obtain a photograph of the child
- encourage naming the child
C. Autopsy
1. In almost all circumstances, autopsy should be offered to the family
2. Discussion should stress:
a. may offer insight into the diagnosis
b. may provide answers to questions they have in the future
c. may help other infants with similar problems
d. will not interfere with plans for a funeral
3. All autopsies involving physical syndromes, suspicion of metabolic disorders, or suspicion of chromosomal disorders should be referred to the Greenwood Genetics Center! Any other autopsy can be performed here at GHS.
Organ Donation
Most infants are not good organ donors; however, corneas and heart valves may be options. The S.C. Organ Procurement Association (SCOPA) is available 24 hours a day and can be contacted through the hospital to provide additional information and assistance (803-782-1881 or 800-462-0755). Please remember that for a variety of good reasons, infants with anencephaly are NOT candidates for organ donation.
Do not discuss organ donation with parents of an anencephalic infant --- or any other patient --- without discussing it with an Attending first.
E. Funeral Services
1. most parents want a funeral service-- this is an important rite of passage to most families in our society (especially for families whose infant lives only a very short period of time).
2. helps families to “formalize” and accept the death
F. Medications for parents: suggest avoiding tranquilizers. An occasional sedative for sleep may be needed (should be prescribed by the mother’s physician; however, the Resident or NNP may need to contact this MD).
G. Grief reaction
1. warn parents that somatic complaints, loneliness, preoccupation with the image of the infant, loss of routine patterns, difficulties with friends or relatives and anger towards self, spouse and staff are common.
2. this may last 6-12 months, sometimes longer.
H. Other Children
1. should be told honestly - not the sibling “went away for a while”
2. often feel guilty or fear that something bad will happen to them.
I. Follow-up meeting 6 - 8 weeks later (to be arranged through Attending Neonatologist)
1. most parents have supported the benefits of such a meeting
2. look for signs of pathological grief: inability to resume work, normal routine. Ask questions: Do you get out? Are you getting along as a couple?
3. Discuss autopsy findings, genetic counseling as indicated
4. In general, discourage a “replacement” baby until the parents have had time to work through grief (usually at least 6 months)
5. leave open the possibility of future meeting, encourage phone calls
I. INITIAL CONTACT
A. Inborn infants: talk with the parents as soon as the infant is stable in the NICU. This initial conversation with the parents should focus on:
1. An explanation of the problems of the infant
2. A general description of the problems and management plan using cautious optimism.
3. Encouraging the parents to visit the NICU.
4. Find out who the primary nurse is prior to calling on the parents so that you can explain the nursing system, NNP, Resident and Attending staff to the parents. Reassure the parents that they should be able to talk to someone on this team every day - and if they can’t find someone to feel free to call the Neonatology office at 455-7939 or the NICU at 455-7165 and arrange an appointment.
Outborn infants: call parents as soon as infant is stable and discuss the above. Encourage parents to come in and personally meet with the patient care team.
House Officer Change:
Call parents within 24 hours of rotation onto service and prior to leaving service.
II. ONGOING CONTACT WITH PARENTS
A. Talk personally to the parents at least twice per week or more often when:
1. There are sudden changes in condition either positive or negative
2. Baby becomes critically ill.
Remember that it is equally as important to contact parents personally when there is a dramatic improvement in an infant as when there is a dramatic deterioration.
B. The infant who becomes chronically ill is a special case requiring exceptionally good communication between doctors, nurses, and parents.
1. As soon as practical, the parents need to be given some idea of the chronicity of their child’s problem, and in particular, some understanding of the problems to be encountered and the time frame.
2. Monthly – or sometimes more often -- meetings of the parents, primary nurses, social workers and physicians may be required to accomplish this goal.
III. SUGGESTIONS FOR IMPROVING PARENTAL COMMUNICATION
A. Always use the baby’s first name. If you can’t remember it, at least don’t forget if their infant is a boy or a girl (sex of infant is usually labeled outside Mom’s room or at the infant’s bedside)!
B. Use terms the parents can understand
C. Always explain special procedures such as an LP, umbilical catheters, CT scans, etc. Handout sheets are available at the front desk for many of these procedures.
D. Encourage questions
E. Always listen to what the parents have to say
F. Separate facts known about each patient from your interpretation of possible diagnoses or prognoses.
G. Avoid excessive pessimism or optimism when speaking with parents.
H. Remember that facts often have to be repeated. Only so much information can be retained per visit.
I Have the parents been given a picture of the baby and the packet of information about the GHS Children’s Hospital NICU?
J. If the parents do not speak/understand the English language, Spanish translators (and some other language translators) are available at GHS. Contact one of the Social Workers for details on this service. Avoid using a family member/friend to act as a medical translator for the mother or father unless it is absolutely necessary.
IV. ROLE OF THE ATTENDING PHYSICIAN
You should always give the parents the option of speaking with the responsible attending physician--although middle of the night conversations are discouraged unless there is a family or infant crisis. Appointments can be made through the Neonatology Office - 455-7939 or via the NICU – 455-7165.
Inform the attending when the parents are in the unit, if possible. This is especially important if the parents are rarely at bedside or if there is important new information on the infant.
C. This is particularly urgent in cases of a dying child or in situation where there are congenital malformations or chromosomal abnormalities.
ETHICS, MALFORMATIONS AND THE DYING PATIENT
I. General guidelines
A. Frequent talks with patents can avoid the “crisis” conference where “ethical” decisions need to be made (discontinuing treatment, etc.).
B. An honest approach to the parents is always best. There is no need to “sugar coat”; however, there are always lots of unknowns that occur when an infant is critically ill and you and the parents will face these together.
C. If you can’t answer a parent’s question, tell them “I don’t know” and tell parents that you will seek appropriate advice or opinions from more knowledgeable sources.
D. When multiple disciplines are involved in an infant’s care (Peds, Ortho, NSGY, Surgery, Genetics, etc.), you are the coordinator and should be involved with any discussions that they have with the parents. You should attempt to “tie everything together” for the parents after these multidisciplinary discussions.
E. The Attending Neonatologist should always be an integral part of discussions with parents regarding ethical decisions.
What is an Ethical Decision?
EXAMPLES
A. Whether or not to discontinue ventilator support in an infant with a massive IVH
B. Whether or not to intervene with medical support in certain genetic defects (Trisomy 13 or 18).
C. Whether or not to support a less than 500 gram infant or < 24 weeks gestational age.
NOTE: These cases are examples and obviously the answer will not be the same in every case. Each infant must be evaluated individually.
Without advanced discussion with the parents, the delivery room is NOT THE PLACE TO MAKE THESE DECISIONS! If there is any question, resuscitation is indicated and the necessary decisions can subsequently be made in the NICU.
III. Approach to the Ethical Problem
A. Gather as much information as possible (have consultants place a note in the chart, verbal communication alone is not satisfactory). Additional information that may be helpful include:
Neurology evaluation to help determine prognosis (when appropriate)
CT or MRI scan
EEG
Neurosurgery Consult in some cases.
Genetics consult
After the data is collected, allowances should be made for all involved to express their opinions.
C. Discuss (options) with the parents. Divide this discussion into several sections:
Facts – and only the facts. This consists of a review of the data concerning each aspect of the infant. Take care not to confuse the facts (the Ultrasound results, the X-ray findings, the ventilator settings, etc.) with the prognosis (a Grade III IVH results in…, infants on these vent settings develop….). Facts are not arguable; they can be objectively documented
Prognosis – This is where one takes the facts and uses statistical probability and experience to predict probable outcomes. Usually this discussion involves a wide range of possible outcomes
Range of possibilities – When discussing the management options, it is helpful to discuss what is possible within the boundaries of our current medico/ethical and legal system. For example, is it possible to disconnect ventilatory life support or not? The range of options from the most aggressive intervention to complete non-intervention should be discussed.
Recommendation – Here is where a personal/professional recommendation may be offered to the parents. Take care to label this opinion as a recommendation. It is also possible that no recommendation be offered.
Discussion – Take time to listen to parents. Ask them if they understand all of the facts, prognoses, and recommendations. Ask them for their opinions concerning the care of their infant. Oftentimes, they cannot make a decision and need time to reflect or discuss the items discussed with other family members, clergy, etc. - this is an appropriate reaction.
D. Final decision must rest with the parents and the Attending Neonatologist
E. Further discussion with the parents (recommendations)
Decisions regarding limitations of care are reached by mutual agreement between the physicians and the parents/legal guardians. When a conflict in opinion between the Medical Staff and the parents occurs, consultation with the Children’s Hospital Ethics Team + Risk Management may be needed.
F. Involvement of Parent Support Group parents. Currently there is a Parent-to-Parent support group funded by the state and private donations. This group can be contacted via the NICU Social Workers
IV. Special Non-Lethal Problems
The meningomyelocele (MMC - these patients are “special” in that the majority will require ventriculoperitoneal shunting and they have the potential to be non-ambulatory if post operative neurological status demonstrates lack of sensory and motor activity at the knees and below. Thus, patients such as these place potentially significant burdens on both their families and on society).
1. The following consultants should be immediately mobilized
Neurosurgery
Consider Pediatric Cardiology (10% of these infants actually have cardiac disease as part of a syndrome)
Consider Genetics Consult if the parents have not already seen the Geneticist
Pediatric Urology
Social Services
2. Procedures
All MMC patients should be considered to have the potential for severe Latex allergies!
Routine admission labs and pre-op studies
Head ultrasound, CT scan or MRI
CXR and spine films
Cardiac ECHO and possibly a renal ultrasound (particularly with thoracic lesions)
3. A meningomyelocele team is centered at the Shriner’s Hospital. Parents should be aware that this clinic will assist in providing follow-up for their child.
V. Helping Parents Cope with Death of a Newborn
A. Tell parent(s) immediately, even if only one parent is present
B. Encourage them to see and touch and hold the infant
- even if it has anomalies
- obtain a photograph of the child
- encourage naming the child
C. Autopsy
1. In almost all circumstances, autopsy should be offered to the family
2. Discussion should stress:
a. may offer insight into the diagnosis
b. may provide answers to questions they have in the future
c. may help other infants with similar problems
d. will not interfere with plans for a funeral
3. All autopsies involving physical syndromes, suspicion of metabolic disorders, or suspicion of chromosomal disorders should be referred to the Greenwood Genetics Center! Any other autopsy can be performed here at GHS.
Organ Donation
Most infants are not good organ donors; however, corneas and heart valves may be options. The S.C. Organ Procurement Association (SCOPA) is available 24 hours a day and can be contacted through the hospital to provide additional information and assistance (803-782-1881 or 800-462-0755). Please remember that for a variety of good reasons, infants with anencephaly are NOT candidates for organ donation.
Do not discuss organ donation with parents of an anencephalic infant --- or any other patient --- without discussing it with an Attending first.
E. Funeral Services
1. most parents want a funeral service-- this is an important rite of passage to most families in our society (especially for families whose infant lives only a very short period of time).
2. helps families to “formalize” and accept the death
F. Medications for parents: suggest avoiding tranquilizers. An occasional sedative for sleep may be needed (should be prescribed by the mother’s physician; however, the Resident or NNP may need to contact this MD).
G. Grief reaction
1. warn parents that somatic complaints, loneliness, preoccupation with the image of the infant, loss of routine patterns, difficulties with friends or relatives and anger towards self, spouse and staff are common.
2. this may last 6-12 months, sometimes longer.
H. Other Children
1. should be told honestly - not the sibling “went away for a while”
2. often feel guilty or fear that something bad will happen to them.
I. Follow-up meeting 6 - 8 weeks later (to be arranged through Attending Neonatologist)
1. most parents have supported the benefits of such a meeting
2. look for signs of pathological grief: inability to resume work, normal routine. Ask questions: Do you get out? Are you getting along as a couple?
3. Discuss autopsy findings, genetic counseling as indicated
4. In general, discourage a “replacement” baby until the parents have had time to work through grief (usually at least 6 months)
5. leave open the possibility of future meeting, encourage phone calls