PROMOTING PARTNERSHIP WITH PARENTS: Chicago Meeting 1999

The last 30 years have seen amazing achievements and improvements in the Neonatal Intensive Care Unit (NICU). Earlier efforts were focused in helping babies to get better. In 1993 Helen Harrison and a group of parents with the support of Jerold Lucey promoted family centered care in neonatal care. The terrain of the neonatal journey can be frightening, unpredictable, often fragile, occasionally controversial and sometimes lifelong. In travelling the journey it makes great sense to accept parents as our equal partners with a right and a desire to partake in their baby's care. I like the Ford dictum "Everything I do is driven by you".

Neonatologists are privileged to witness and share the patient love and courage of parents of every age and background, the gentle understanding and brilliance of nurses, social workers and the dedicated skills of the doctors. Most parents are happy with their experiences in NICU. Whilst we in the NICU in general do a fantastic job in looking after critically sick babies and their families we can and must strive to do better. The following three quotes by parents encapsulate the situations in the NICU and what we can do to help the parents.

MY PERSPECTIVES

Parents trust the health providers in our competence in neonatal medicine to give optimal care to their babies. It is for us to conduct ourselves in ways (effective communication, friendly body language, empathy) which honour that trust. We must be competent and credible in what we do and what we say. We need to spend time listening and talking to parents. We must make ourselves accessible. One mother aptly pointed out that N.I.C.U. also sounds like ' And I See You '. It still amazes me that some parents could go through the whole NICU experience without having seen the specialist involved in the care of their baby. When I am on call I, like most neonatologists, do two ward rounds; one of the babies and the second catching up with the parents. Parents need to feel our meeting with them as safe. I try to avoid talking about important issues in the middle of a corridor; it is better to see the parents in the quiet of one's office or in the mother's room. If possible I talk to both parents together and have another member if the team present. We ensure that what and how we say are comprehensible to lay people (for example pulmonary hypertension = reduced blood flow to the lungs ).

As a neonatologist I constantly remind myself 'What would I do if this is my son or my daughter?' By adopting that approach I never grumble if I have to be woken up at 2 am for an emergency. When I am on call for long periods I can find it difficult to be away from my own young family; especially if my own children falls ill. The institution must also recognise the demands on neonatologists as clinician, administrator, educator, researcher and have a roster which allows specialist enough breaks between periods on call (very much like how some parents have to juggle their life demands on top of visiting their babies. When I was in the big city one of the most stressful experiences was for parents to find a place to park their car). This has to be balanced properly to ensure continuity of care to the babies and parents. If I am on call starting on the Monday I will join the ward rounds on the preceding Thursday or Friday to familiarise myself with the babies and parents on the ward. As member of a multidisciplinary team individual neonatologist may not be able to do things the way that they wish or feel is correct. Indeed some neonatologists have changed jobs because of their discomfort about the ways parents are treated by their colleagues: this may be a surprise to parents who felt they have been unfairly treated. I believe by introducing simple aids in communication (some of which I will describe in this talk) we can reduce the chance of everyone suffering from compassion fatigue.

These 'information and decision' profiles may change at different stages of the baby's stay. We also need to appreciate that information may not be available to us all at once but may arrive piece by piece. Communication is active speaking and listening. NICU is a stressful and busy place and it is easy to have, as in 'Sounds of Silence' by Simon and Garfunkel, ' people talking without speaking, people hearing without listening'. We need to be confident, unhurried and respectful to enable parents to feel comfortable in talking to us. They need to be assured that our communication with them is correct, up to date, consistent and confidential. Neonatologist need to be cogent in our information and always summarise what we have said. When I first meet the parents I share with them that I hope that them and we could cooperate like a pair of chopsticks = equal partnership with parents. Whilst we must be caring we must also be careful about how much we care. In other words we must be sensitive and sensible in our approach to parents eg in a baby needing high pressure ventilation it is reasonable to share with parents the risk of pneumothorax but it would be unwise to tell them the risk of pneumopericardium, pulmonary haemorrhage.

I subscribe to 'transparency in neonatal care' by disclosing the basis on which the proposed treatment has been chosen and the parents are allowed to ask questions. The aim is to render my basic thinking transparent to the parents. The parents know that our aim is to preserve life as free as possible from impairments. The purpose is not to give parents a crash course in medicine but to provide them with the information to understand the basis for the team's beliefs and recommendations about their baby. Most parents, given time and support can quickly understand the essential information about their baby's condition, management and likely outcome. Parents taking part in decisions about their baby in the NICU should leave the NICU with solid foundations to care for their baby at home. A robust decision-making relationship can lead to fewer misunderstandings and fewer surprises both immediately and in the long term. I adopt an individualised prognostic strategy the central tenet of which is that each baby must be individually assessed and individually treated. We need to check with parents to ensure that they understand what has been said. The goals of good communication are to bridge, clarify, reinforce, facilitate, reassure understanding. Optimal communication with parents should include a combination of approaches. I complement my chat with parents with individual specific information leaflets, showing them x rays or scans, other aids of relevance.

10 STEPS

I use an analogy of a 10 step journey for babies in NICU with potential bridges (breathing, heart, feeding, brain, infection etc) to be crossed before reaching the door to discharge. At the outset I promise parents that we will keep their baby in NICU as comfortable as possible. Parents know that we use morphine infusion for ventilated babies. If possible we let the mother cuddle the baby after birth or at least touch her child. During intensive care parents should be able to cuddle their baby at the first opportunity. In our NICU all mothers who intend to breastfeed can let their baby in NICU taste their mother's milk even during the first day of life.

As it should be in life in general never prejudge a situation. A father rang up and was thought to be drunk. When he arrived we discovered that he wearing a hearing aid for being hard of hearing. A similar incident happened; this father had a stroke and had dysarthria. Also do not assume what you see. I have met a young woman with an aging man and I introduced myself and said 'you must be the proud grandpa' and the reply was 'No I am the father'.

CEREBRAL PALSY

If a baby has bilateral severe periventricular leukomalacia (PVL) it is reasonable to share with parents that one is almost 100% certain that the baby will have some degree of cerebral palsy (explain term, I have information leaflets on PVL and CP which I give to parents after my discussion). Before the baby's discharge arrangements should be made for early intervention. Some parents may appreciate a chance to meet a family having similar experience.

CAN DO, CANNOT DO

We need to be honest with parents (and with ourselves) what we can achieve and what we cannot achieve with their sick babies. It is OK to admit 'I do not know' if that is true. We must have the courage and humility to realise when we have reached the end of the road with individual babies and to prepare the parents for withdrawal of life support. Parents should have the option of a second opinion before withdrawal of life support. For babies who are dying I try to adopt a 'can do' approach: whatever the parents want should be considered. They may want to take their baby to a park to, as one mother requested, so as 'let the winter sun shine on her face, allow her to take a breath of fresh air, hear the rustling of leaves under my feet and listen to the galah's cackling' (the baby did) or even home.

TEAM

Even the neonatologist with the best communication approach can fail in informing parents if parents are given conflicting advice. We need to recognise that the family is struggling with the meaning and significance of uncertainty in their child's care. They have not led to expect disagreements or differences of opinion or practice within the team, and naturally conclude that somebody must be wrong. Parents who have been welcomed to participate in decision with the team may be able to appreciate more fully the realities of clinical decision making and take a more positive role. It is imperative that parents are given consistent information. The consultant should ensure that what was said to the parents be conveyed (verbally and in writing in the baby's chart) to all team members (doctors and nurses, social workers). Of course there will continue to be cases where, after truly effective communication and discussion, the goals and values of parents and those of the team continue to diverge. In such instances at least the team can be better assured that the parents' have come to their views after having been fully informed and supported. One must never criticise team members (or anyone) in public. Do not compete but compliment if one can. If possible support team members. However one can run into unexpected problems. A baby died and the next day, a Sunday, the neonatologist who was new in the NICU rang up the student nurse who looked after the baby to make sure that she is OK as she was extremely distraught when the baby collapsed and died. This was what the neonatologist did often in his previous job. The chief nurse heard of this contact and castigated the neonatologist for contacting the student nurse at home instead of letting the chief nurse (who was off for the weekend) be involved. The NICU is not the place for team members to score points or engage in one-upmanship. In our conversation with parents whose babies are admitted from another hospital it is important that we are respectful of the referring doctors and, if possible, to compliment their efforts.

Parents soon get to know each other (breast room, parents lounge, hospital cafe) and it is important for us to be aware that parents do compare their babies' progress with other. Parents can be a great help to each other. The NICU can be a depressing and frightening place. It can be chilly; warm it up with a smile. Some parents are unusually cheerful. It is common for parents to appear happy and for team members to be worried whether parents understand the real situation of their baby's condition. Parental overoptimism may be due to anger, grief and guilt; lack of intellectual or emotional capacity to understand the relevant, infuriation, complete faith in technology, strong personal or religious beliefs. Staff members may be uncomfortable with situations such as 'a parent of a critically sick baby went out to buy a Moses basket' or 'a mother of a dying baby wanted the baby to be withdrawn from life support on Mother's Day'. It is perfectly acceptable if that is what helps the parents. 'I must be strong because if I am sad the baby may sense it,' said one mother.

Some parents may have access to the Internet and need guidance on websites. There are several excellent websites for parents of premature babies (eg Preemie-l. and Preemie-Child). With the Internet national geography is becoming irrelevant. However there is a risk that one may be drowning in a sea of information and yet be thirsting for knowledge. Ideally there should be salaried part time health carers overseeing a national or international one contact site (such as Preemie-L). Governmental bodies such as March of Dimes could play a key role.

CONNECT

We must connect with other key players eg referring doctor, obstetricians, family doctors. It is a good policy to have an interim summary done when the baby is 1 month of age and send it to the parents and key players to update them of the situation. If need be offer parents the chance to meet other veteran parents who have gone through similar journey; this could happen even antenatally (eg with babies with Down's or gastrochisis).

DISCHARGE

We need to coordinate discharge from the ward whether it is to home (involvement of early discharge team) or to a referring or step down hospital. Parents should be warned early that their baby may be transferred to another hospital and ,if possible, should be introduced to the doctor who is taking over the care of their baby. Our NICU serves a huge region; the size of France. When babies are transferred back to referring hospitals 200 to 400 km away we organise for a video conference for us (the neonatologist, nurse involved) to introduce the parents and baby to the accepting team (the paediatrician and the nurse). We then do a verbal and visual handover on line in the presence of the parents; this may involve showing the accepting team an abnormality on the ultrasound scan of the brain.

Our practice should be evidence-based. It is also important that evidence-based information should be given to parents. There are still many unknown aspects of neonatal medicine: the long term outcome of extreme prematurity, the long term side effects, if any, of intervention such as steroids, light, indomethacin. There is a paucity of good data in long term outcomes for premature babies. The public should be fully informed that neonatal intensive care, though effective in treating the majority of sick babies, may have long term adverse effects. An educated public will demand proper safety studies resulting in safer intensive care technology. The development, evaluation and clinical introduction and subsequent monitoring of exogenous surfactant must rank as one of the best evidence-based medical successes.

We have constructed a Gestation versus Outcome Table , based on a recent multicenter cohort of babies, a simplified way the likely outcome of babies born at 28 weeks and below. In another powerful way of collaboration two parents of a premature baby Anne Casey and Gary Hardy in Melbourne, AUSTRALIA had kindly posted the results of this study on the website (see Reference 1). The aim is to give up to date information to parents and professionals. It is important to know the statistics from one's NICU so that parents can be informed of local outcome.

We have also collected the Views of parents, doctors and nurses about the Gestation vs Outcome Table . The results showed that the majority of parents finds the table easy to understand, not misleading and do not have too much information. Although the information in the table is frightening most parents would rather know. Parents were less certain regarding the optimal timing of receiving the Table. The majority of doctors felt that the table is easy to understand but has too much information. Although the majority of doctors felt that the table is useful there is ambivalence about using it in their practice. The comments given by parents and doctors seemed to have more in common with each other. Whether the information is helpful or not may depend on the timing of parents receiving it. There is no doubt that parents want the information but whether they want it all at once is uncertain (for website address see reference 2)

Information leaflets must not replace good face to face consultations but these are usually short and parent may not receive the information they want and need. Leaflets and other aids can therefore play an important part in complementing and reinforcing information provided by clinicians, but the information they contain must be of the highest standards of scientific accuracy and be tested for comprehensibility and relevance.

I have routinely offered parents audiotaping of my key conversation with them so that they and their supporters can, if they wish, listen to the information again and at their leisure (see article in Appendix A). My experience is that it is easy and cheap to audiotape conversations with parents. Parents and other support persons in our initial study listened to the audiorecording. I have used this simple method in antenatal situations, during NICU stay and postnatally. On 5.7.1999 we started our 2 year randomised trial 'Can providing parents in NICU with audiotapes of their conversations with neonatologist influence the parental recall of information and their coping skills?'. Several parents have advised me on the design of the study that received a funding of A$175,000 from the Royal Children's Hospital Foundation in Brisbane. Hopefully we will have some answers in 2 years time.

Collaborative studies

There is an immense wealth of important information among NICU parents which remained untapped. Hospitals, funding bodies and governmental community programs must continue to encourage collaborative studies between parents and the health professionals. This conference is a wonderful example of such a collaboration. Neonatologists should welcome parents into this important task. Over the last two years parents and I have been able to pose questions, design studies, collect and discuss data, finalise results, jointly present and publish data. Some of our efforts include

On 8.7.99 we started a survey asking pregnant women who attend the antenatal clinic in our hospital their views about premature birth. These are low risk women who are managed by their family doctor but has shared care with our obstetrics consultants. Among the initial 110 mothers who responded to our questionnaire 26% said that they are 'very concerned' about a premature birth and 30 % are 'very interested' in attending a talk about prematurity. The study is still on going.

CONCLUSION

Partnership with parents must and can be actively fostered in the NICU and extended beyond the NICU stay. By working together I believe health professionals and parents of critically sick babies can develop and test some powerful effective ways. Our partnership, an intermingling of different currents of ideas, will gradually condense the clouds of these ideas into a shower of recommendations for neonatologists helping everyone in future neonatal journeys. As parental empowerment gains momentum it will, one hopes, seep into the medical culture at large and encourage health care workers to develop attitudes and evidence-based practice more suited to the intricate demands that faces us in the Neonatal Intensive CARE Unit.

There is now a push for a family-centred approach in neonatal intensive care units (NICUs)[1]. Parents in NICU can initially have difficulty in understanding, remembering and accepting information given to them. Whatever the reason personal recall is at best unreliable.[2] In the UK there were two babies born less than 24 weeks gestation (in March 1995 and October 1996) of which the parents' claims that they received no pre-birth counselling on the likely outcome of the premature birth were denied by the hospital staff. [3,4] This situation could have been avoided if there is a way of ensuring that whatever was said continued to be available for parents to listen to again. In studies of adult patients with cancer in outpatients [5,6] and for parents and grandparents in paediatrics outpatients, [7 ] audiotape recording of their outpatients' consultations with doctors were found to be beneficial ; this method has not been used in an inpatient set up. The following is the first study in an inpatient set up to evaluate a method of audiotaping the doctor - client conversations.

All babies admitted to the NICU at The Canberra Hospital, AUSTRALIA (annual delivery of 5000 births in the region and admissions of 500 babies to the Neonatal Unit of which 100 needed life support) were eligible for enrolment into the study when a neonatologist (GK) was on call. The initial conversation and any subsequent conversations of importance between the neonatologist and parents of babies in NICU were recorded on C90 cassette tapes using a small tie clip-on microphone and a standard small "walkman" cassette player (Sony TCMS68V). Informed consent for taping of the conversation was obtained from the parents before the conversation commenced. The first conversation follows a standard format that covered a minimum 13 points regarding the condition, management, likely progress and outcome of the baby [8]. The conversation, lasting 15 to 20 minutes, occurred as soon as possible after delivery in a quiet room away from the NICU. Where possible both parents were present. After the conversation the parents kept the cassette recording and the cassette player for the duration of their baby's intensive care. Parents were seen by the neonatologist on average twice a day during their baby's intensive care. On discharge of the baby the tape recordings were given to the parents. At the time of discharge of the baby the parents were requested to complete (anonymously) a questionnaire in English asking them whether they have listened to the recording, how many times they have listened to it, how they felt about this aid in communication including a score of usefulness of the method. In this report we excluded parents of babies who were initially in the study but whose babies died subsequently because we felt that requesting them to fill the questionnaire may be construed as insensitive by them. A survey using a questionnaire was also done on 99 neonatologists in Australia and 91 perinatal nurses to document their views on the usefulness of the technique.

During the period from December 1993 to March 1995 of the 708 babies admitted to the Neonatal Intensive Care Unit there were 112 who needed ventilator support for illnesses including hyaline membrane disease, asphyxia, surgical condition and meconium aspiration. As the replies from the parents were anonymous for this pilot study we have no details of the gestational age, birthweight or duration of intensive care for the babies. 91 parents were included in the study when the author (THHGK) was on duty at the time their babies were admitted to the NICU. All eligible parents approached by the doctor consented to the conversation being recorded. During the first month of the study four recordings were not successful (twice when the cassette was not switched on, once when the recorder was switched on but the pause button was also on and in another case when the batteries were flat). The recording of the neonatologist-parents' conversation was successfully obtained in 87 parents. One couple lost their cassette. At discharge of the babies 75 (93%) of the 80 parents who had a tape recording of the conversation completed the questionnaire.

64 (76%) of 91 nurses replied and all thought that it was a good idea to tape conversations between parents and neonatologists. 75 (76%) of the 99 Australian neonatologists replied to the questionnaire survey; 40% were not happy for their conversations with parents to be recorded . The median (range) of the score of "tape usefulness" [0 = totally useless, 5 = moderately useful and 10 for extremely useful] of the method was 6 (2-10) for neonatologists and 10 (5-10) for the neonatal nurses. In 1997 we sought to establish the views of neonatologists in three countries (Australia, England, USA) on the use of this aid in communication in NICUs. A questionnaire was sent to 99 neonatologists in Australia and to 100 randomly selected neonatologists each in England and in United States of America. The specialists were asked whether they are happy for their conversations with parents to be audiotaped and to mention reasons if they are unhappy. The reply rate from the neonatologists were 76% (Australia), 72% (USA) and 75% (UK). The percentage of respondents who were happy for their conversations with parents to be taped were 60% (Australia), 72% (USA) and 78% (UK). 95% of Americans and 77% of Australians gave 'legal implications' as the reason for being unhappy for their conversations to be recorded compared with 31% amongst UK neonatologists ³.

It was the first pregnancy in 36 mothers, second in 26, third in 11 and fourth pregnancy in 2 mothers. 48 % of the mothers had analgesia and / or sedation at the time the conversation took place. 72/75 (96%) of mothers listened to the cassette at an average (range) of 2.5 times (1-15). 51/75 (68%) of the fathers listened at an average of 1.8 times (range from 1-4) to the cassette; friends and family listened in 51/75(68%) cases. 48/75 (64%) couples listened to the recording together. The median (range) of the parents' score of the "tape usefulness" was 9 ( 7 to 10) in comparison with the scores for doctors of 6* (2-10) and for nurses of 10 (5-10); * p <0.0001 between the scores for parents, nurses and that of doctors (see graph). The median score of usefulness was 9 for mothers who were sedated and 9 for mothers who were not (p=0.208).

85% of the parents who listened to the tape recording found that the recording contained things which they had forgotten. Two mothers could not recall that the conversation ever took place. To the question "How much of the information given have you forgotten?" One mother wrote "All of it. I was in ICU myself, sedated and still undergoing a number of medical procedures. I did not even realise until the 2nd time I listened to the tape that I had been present when you made the tape"

· Another mother who came after her baby had been admitted to our Unit from interstate wrote" (I was not present when the conversation was recorded). Due to the circumstances under which our daughter was born, listening to a tape of what was said after she was born was both informative and comforting. With all the stress surrounding her birth it would have been too much to expect my husband to relay everything that had been discussed between him and the doctor. I am sure that we will play it over in the future to see how far we have all come".

A mother of a baby at high risk of cerebral palsy listened to the recording 15 times. The method was useful for a Vietnamese couple who did not speak English; the interpreter wore the tie clip microphone and her interpretation of what I said was recorded for the parents to listen to. There were no negative comments on the tape recordings. Taped conversations of complex cases including bad prognoses were (with parents' permission) also listened to by other members of the NICU team so that team members know precisely what had (and had not) been said to the parents.

Although it was not the aim of the study the author (GK) found the method beneficial on numerous occasions. For example an interstate mother delivered a baby prematurely whilst visiting her parents in Canberra. GK spoke to her on her own initially with a view to speak to her husband when he arrived. When the husband arrived GK went to see him and before GK could inform him about the condition of his baby he said "Oh I have listened to the recording of your conversation with my wife and things are clear to me. Can you update me any development since that conversation?". Initially the neonatologist in this study did feel slightly self conscious having the conversation being recorded but quickly became at ease because of the responses of the parents.

Our study was the first to show that it is practical to do tape recording of conversations with doctors in the NICU. Our results are comparable with Rylance's study[7] in outpatient clinics which showed that taped recording of the consultations with the doctors was helpful to more than 99% of parents and grandparents. 93% of our parents completed the questionnaire; very similar to the 94% in Rylance's study. In Rylance's study parents returned the tapes whilst parents in our study were allowed to keep the tapes. Several parents in our study mentioned that the tapes of the conversations are kept as a memorabilia for their children ("we believe that the tape will be of great interest and historical value to our baby as he gets older. It is great to have and will form part of our diary / memories of the first months of his life"). In our study 68% of relatives or friends listened to the tapes compared with Rylance study where 52.8% of the tapes were listened to by grandparents, 17.1% by other relatives, 15.7% by siblings and 13.9% by friends. This emphasises the substantial involvement of family members and friends in both outpatient and inpatient situations and the significance of the comments made by one of our parents "It spares us from repeating to the question 'What did the doctor say?' by well meaning relatives and friends"; this is suggestive that replaying of the tape recording of the information is easier for the parents than answering verbally themselves to queries from relatives. 48% of the mothers had some analgesia or sedation during the first meeting with the neonatologist and this could have compromised their understanding and memory of any initial information given. However there was no difference in the score of usefulness between mothers who were sedated and those who were not. It is interesting that 96% of mothers listen to the tapes. It is possible that there are differences in patient needs and wishes in NICUs other than that in which this study was performed.

There are potential legal implications of such a method. One can argue that such adjunct to our communication with parents should encourage us to be precise, organised, clear and humane in our information giving 8,10 and could prove an invaluable alibi should a complaint arises.3,4 Little is known about how neonatologists prepare themselves to perform the demanding duty of counselling and informing parents in NICUs10. It is likely that the value of the procedure could be related to the content of the tape recording and also stems from the care taken in providing the information (eg parents together where possible; systematic coverage of key topics). We like to stress that the recording of the initial conversation between neonatologist and parents complemented, and did not exclude, the usual daily contacts and updating amongst members of the neonatal team and between the neonatal team and the parents. Indeed the idea would be retrogressive if this modality of communication is ever used as a means to diminish ongoing personal contact. The neonatologist on call continued to see the parents at least once (and often twice) a day. One question is whether this procedure would be effective with neonatologists who place less importance on their communication with parents. Junior doctors have also found it educational to listen to some of the taped conversations. We deliberately excluded all the parents of the babies who did not survive although it is possible that we may at a later date survey this specific group of parents to assess their views of the tape recordings given to them.

Our study suggests that parents of newborn babies needing neonatal intensive care may benefit from the chance to listen repeatedly to the simple audio tape recording of their conversations with the neonatologist. We have also found that tape recording of neonatologist - parents' conversation is practical and not expensive. 10 cassette tapes cost A$25. However we have started to request parents to bring a replacement tape. The recording procedure took about 30 seconds to set up. With a tie clip microphone (an essential piece of the equipment) the sound production was excellent even in a noisy adult intensive care where two mothers were at the time of the conversations. In our study parents were given the tape and the small recorder to keep during the intensive care period to make it convenient for them to listen whenever they like. We have 5 cassette players (A$70 each). It is important to check that the batteries are of adequate strength and that the pause button is in the OFF position. We always rewind the tape a little at the end of the conversation and then play it to check that the recording was satisfactory.

We have successfully used the same technique in other clinical situations which included ante natal counselling (babies with gastrochisis, duodenal atresia and Down's syndrome, spina bifida, extreme prematurity..), sharing findings with parents at our newborn follow up clinic and discussions of post-mortem results. Human resources permitting the method could be refined to include giving parents a typed transcript of the taped conversation with a copy kept in the baby's notes. Our above study is a pilot observational one looking at how practical and acceptable the method of audiotaping conversations in an inpatient setup. Further study needs to be done and we have just started (12.7.99) a 2 year randomised trial to evaluate the long term effects of this simple adjunct in communication on the parenting skills and well being of parents of NICU babies after discharge from hospital.