The original Johannesburg Hospital Protocol - Part Two

Generally by the time the child is in the Resus Room and the family have arrived, the Social worker/counsellor has arrived. She is briefed by the most senior person available (who is with the parents), and introduced to the parents. The Nurse then returns to the Resus Room to brief the team with any pertinent medical information.

The Social worker will again explain to the parents as fully and honestly as is possible, the condition of their child and invite them to ask any questions, which are answered in as much detail as possible.

There are obviously questions which by their nature are unanswerable – “Is he going to die?” and “why my child?” being the two most asked questions.

To the first question, the answer is always an honest one based on previous experience, but will suggest that the resuscitation is a dynamic event and that it is difficult to answer that question at that time.

To the second question there is no answer.

Kubler Ross writes that when asked, “why me?” and she tells them, “I don’t know ‘why you’”.

She continues, “Since all of us have to face death and dying it has to happen to any one of us sooner or later. (They) are really asking, ‘why is it happening to me now’.

I would let him raise this question so that he will be able to express his anger and anguish, and ventilate all his feelings of dismay and other concerns. This will give you cues as to how to help him.”

Remember that the parents are in fact the experts of their own life.

What one does not say, ever, under any circumstances whatsoever, is, “its Gods will” or “its better that he didn’t live”.

It is not up to the staff to presume to force their personal religious or spiritual beliefs onto shocked or bereaved parents.

Trite and meaningless phrases like these undermine the confidence of the parents that their child was in fact adequately resuscitated. You never have proper insight into what is happening in the parent’s mind, no matter how many helicopters you have jumped out of!

There were all sorts of reasons why this protocol was developed, most of them simply practical and structural. In the South Africa of the day, many people did not even share a common language and so it was difficult to communicate with them.

A resuscitation (and subsequent death) one bright, hot, Saturday summer morning in 1989 put a completely different spin on the need for our ‘open Resus-room door’ policy.

A drowned toddler was flown in by the Johannesburg Hospital’s Flight-for-Life helicopter. I did a “hot offload” where the rotors were kept spinning at high speed and the child was dropped into my arms for a run to a waiting trolley and a sprint directly to the Resus Room.

It so happened that it was a “Grand Rounds” day and so everyone who was anyone in paediatrics was in Casualty. We started the resuscitation with the Professor of Paediatrics and the Casualty Consultant calling the shots. At some point, the child’s mother and grandmother were brought into the Resus Room and stood next to the wall watching us for about two hours.

Eventually it was decided to stop the Resus.

As the senior Nurse (and as I was taking a break from the CPR) I spoke to the mother and granny and asked them to accompany me to the relatives’ room whilst we just “tidied up” the room - in effect, whilst the ET tube was removed.

The three of us sat in the room and I started to explain everything that we had done. The grandmother interrupted me saying that she was a Nurse and in fact “knew” that her grandson was dead when she had found him floating in the swimming pool.

What she said next fundamentally altered my practise as a Nurse and changed me as a person.

She said that when the first ambulance had arrived, that she thought that because the Paramedics were white, and her grandson was black, - and that this was after all apartheid South Africa-, that they would not bother to attempt to rescue her grandson.

But they did.

They jumped into the swimming pool, pulled him out and started CPR.

Within a few minutes, the Response Car arrived.

Again, she said, because the Doctor and Nurse were white and her grandson was black, she thought that they would not resuscitate her grandchild.

But they did.

Within a few minutes the helicopter arrived. Not only were the Pilot, flight doctor and flight nurse all white but the helicopter itself was painted white!

Again, she thought, they wouldn’t do anything because they are white and he is black.

But they did.

(The helicopter had been called not because of the distance to the hospital, but because the patient was a drown child and therefore the 'flying intensive care' aspect of the helicopter was needed)

She arrived at the Johannesburg Hospital (having been driven by the Response Car crew) to see me do the hot-offload.

Again she thought, this is a white hospital and he is black and they wont do anything for him

But we did.

As she and her daughter were able to witness.

She said to me that she thought that we were going to go into the Resus Room, close the door, wait a few minutes and then come out. Instead, she and the mother were brought into the Resus Room and watched us trying to save her grandson.

For two hours and with much emotion and medical sophistication.

For all the many reasons why this protocol was developed, it was never ever because we thought that black South Africans would think that white South Africans would not resuscitate them or their children.

You just never ever know what is happening in the families’ hearts and minds!

So the parents are informed that as soon as possible into the resuscitation that they will be allowed into the Resus Room to see their child.

There is always a brief interlude when the initial stabilisation has finished and for example, x-rays are being taken, when they can slip in and be briefed.

Before entering the Resus Room the parents should be told about the equipment in, or around their child. This should be done in a positive manner, for example “the heart monitor tells us what his pulse rate is”.

Once the parents enter the area, the various staff members should be identified by task and name if necessary, by the Social worker, although clearly introductions will have to wait.

Of course there are is always the possibility that parents will not want to see their child - indeed this is the most common objection raised by medical staff.

Personally I have never met parents who didn’t want to see their child. In fact, the opposite appears to be the truth. Rather than “being forced” to see their dying child as one colleague put it, they are prevented from being with him in his final moments. During the research for the protocol the most common complaint from bereaved parents was that they had been kept out of the Resus area until their child had died.

As soon as possible, the Doctor in charge of the event should speak to the parents

Technically the doctor is the head of the team and as such s/he needs to address the parents concerns.

And on a basic level, the relatives need to see for themselves that a doctor was involved, particularly so in smaller hospitals.

It’s just all about dotting the I's and crossing the T’s on the parents’ mental inventory of care.

The parents then stay in the Resus Room whilst the process unfolds. They might leave and come back, they are permitted to ask questions and where and when possible are allowed to touch their child.

If and when it becomes obvious that the child is going to die it is sometimes helpful to take them to a relatives room.

At this point the Doctor and Nurse who have already met the family leave the Resus and accompany them to the relatives room.

The question I am most asked is always, “what is the best way to break bad news?”

Its simple. Painful, heart-breaking, but straight forward.

1.    The two senior staff members accompany the parents to the room.

2.    The parents are again identified.

3.    The staff members again briefly identity themselves.

4.    If the parents are sitting, the staff should sit

5.    If the parents are standing, it’s a good idea for the staff to sit and to encourage the parents to sit. If they don’t want to sit, them the staff must stand as well.

6.    Looking at the parents, and using simple, non-technical language, you simply say, “I’m sorry to tell you that your son, Simon, has died”.

7.    Always use the name of the child so as not to demean him or his family by referring to him as an object.

8.    Avoid euphemisms or ambiguous phrases, such as “Simon has passed on”.

9.    Use of clear direct language doesn’t inadvertently prolong the suspense.

The mourning process needs to begin as soon as is possible, ideally right there and then. It is for this reason as well that sedatives and sleeping tablets are never offered in the acute situation. It is simply pointless to prolong the period between hearing the news and starting to internalise the reality.

When asked, “Should a member of the helping profession show his emotion when a patient dies?” Kubler Ross replied, “I still have lots of tears”.

And so do I. It would appear from the anecdotal evidence and certainly from what I was told by bereaved parents, that when the staff cry or show emotion, that the parents appear to start mourning easier.

I do not personally believe that it is unprofessional and would frankly be worried if in the acute setting the death of a child left me feeling unemotional.

What should be of concern to individual EMS staff members (and Unit managers) are the cumulative effects of multiple deaths’ in the long term. But feeling sad or crying at the time is healthy!

When the parents have recovered from the initial shock, they are invited to spend some time with their child.

They are escorted back into the Resus Room if they wish.

In the interim (and subject to various medico-legal requirements) the staff will have removed the ET-tube and probably most of the IV lines.

Additionally they will have switched off all of the machine alarms and turned off any unnecessary machinery.

Any mutilated parts are covered simply with dressings and the child is made to look as ‘normal’ as is possible.

The parents-and any other family members who they choose-are then allowed to spend as much time as is possible or feasible with their child.

I remember a Jewish child dying after sunset on the Friday night, and the need to let the Rabbi sit with him all night.

Clearly though we moved the boy to a side ward.

Additionally, and within (safety) reasons, they can also do perform whatever tasks or rituals they need to do.

This act of ‘re-uniting’ the family is crucial.

There is firstly the need for the parents to simply see their child for the death to be internalised. Secondly though is the more important reason of allowing them to be parents one final time.

They are never going to play with their child again; to listen to him sing or laugh; they are never again going to have the opportunity to teach him anything new; to do any of the 1001 things with him that make human interaction so special.

It is frankly the last time that they are going to see him in anything approaching a ‘normal’ state.

Finally there is a need for them to fulfil whatever religious or spiritual or cultural requirements they need to complete to satisfy that part of who they are.

At all times, for most people, the death of their child will be the most harrowing experience that they will ever face.

If you can give them this last ‘family’ time; if you can be open and honest with them at all stages of the interaction; if you can be receptive to their needs; then you can make the acute process more bearable.

Generally either the Nurse or Social worker stays in the Resus Room with the relatives to answer any questions. They would be amenable to leaving the parents alone (but not out of sight) within the room, provided that there are no medico-legal constraints.

Again any and all questions are answered as honestly as is possible.

When the parents indicate that they are ready to leave the Resus Room they are first escorted back to the ‘relatives room’ for a brief moment to allow for any counselling and for them to ‘catch their breath’.

They will be given a brief overview of the grieving process.

When they are finally ready to leave they are escorted out to their car.

Their car is an extension of their home and its really just ethical and ‘good manners’ to walk them out of the alien environment.

"Good manners" is the simplest and easiest  way to run a bereavement service.

The original Johannesburg Hospital Protocol - Part One

The following protocol was developed for the Paediatric Casualty at the Johannesburg Hospital in the period 1987-1988,and should be seen against the following background to provide some understanding of its basis and framework :-

1. 'Children’s casualty’ as it was colloquially known dealt with both medical emergencies and trauma.

2. It was in the ‘white’ Johannesburg Hospital and was (at the time) staffed by ‘white’ nurses and doctors but it took critically ill  patients from all population groups.

3.  The protocol was initially developed as much for the staff as for the parents.The staff were themselves not coping with the volume of sick and dying children; and with the  types of deaths, (often as a cause of political violence) of children in the Unit.

4. It was also obvious that the bereaved parents and family were not being properly dealt with by the staff or indeed the Hospital bureaucracy.There was a strong sense of “unfinished business” on both sides, which needed to be addressed.

5. Given the clash of First and Third worlds seen in any University hospital  which also serves as a regional trauma centre; given the marked language and cultural differences;given the changing and rising expectations of black South Africans;and the verbal feedback that the Unit received,it was decided to adopt an “open-door” policy.A decision was taken to let the parents into the Resuscitation Room during the actual medical intervention.This honest, open policy laid the foundations for a dynamic,positive interaction between staff and patients and their family.

6. The degree of professional and emotional honesty  expected from the staff “upfront”, and implicit in letting parents into the Resus Room,required  a high degree of self-awareness and involvement in the development of the protocol by the staff.

7. Onto this was grafted the concept of the ‘injured family’. The idea is that the whole family needs to be cared for within the acute care setting and situation.

For practical purposes,a large part of the emotional/psychological/spiritual needs of the unconscious/dying/brain dead child are transferred to the family until the child dies or recovers.

In the same way that in a typical ‘chronic’ Hospice setting,where the  patient is attended to by social workers,ministers and various mental health worker so too must the acutely dying patients needs be met.

It was expected then that with an honest and ‘open-door’ policy, that any cultural, religious or linguistic barriers could be transcended. Everything that is being done to, or, for the child can be “checked” against the parents personal checklist and understanding of the situation, allowing any particular need to be addressed.

In most modern casualty departments, the staff are given prior warning by the Ambulance services, telephonically or via a radio, that a particularly severe case, a ‘resuscitation case’ is en route to them.

Generally some basic information with regard to the age of the patient and mechanism of injury is sent as well as the expected time of arrival of the ambulance.

At that point the senior Nurse will notify the necessary departments such as the Operating Theatres and Intensive Care Units, and will then page the “Resus Team”, typically comprising of the on-call Trauma surgeon, the Emergency Medicine Physician, (perhaps the on-call anaesthetist), radiologist, pathology staff and the Social Worker (or Counsellor).

The potential case is explained as fully as possible to all members of the team and they are requested to come immediately to the Casualty Unit.

(All the medical and nursing team members are briefed and trained in ATLS/ACLS/APLS and know what their individual roles and responsibilities are within the framework of the ALS protocols and they simply go to their Resus station.

For example, “Sister One” is the Registered Nurse entrusted with the total care of the head (including the brain), C-spine and airway.

All of the ‘extended’ EMS ‘family’ including those in the Ambulance/Paramedic services are trained using the same ALS protocols and language and there are common shared expectations of how the patient will be “packaged” for transport to the hospital and will then be managed on arrival).

The Social Worker though is called for different reasons.

1.Firstly they will be actively looking after, or caring for-, the relatives and friends of the child being resuscitated.

2. This practically means that the medical and nursing staff can concentrate on the resuscitation initially.

3.Secondly they fill a bridging role between the event/the transport/the hospital/the outcome. Ideally they will have been informed of what happened to the child (in the pre-hospital environment) and can explain it to the family, as representatives of the hospital.

And they should be in a position to stay with the family until at least the resuscitation phase is complete. In fact they would ideally stay with the family until the family leaves the hospital (if the child dies) or they are asked directly to leave by the family.

4. Due to the high emotional stress of the acute phase, the 'Casualty Social Worker' would not be expected to continue working directly with the family if the child survives and moves to Intensive Care.She will however still see the family on an ad hoc basis and will feedback to the medical staff in casualty.

5. They also provide a bridging role between the medical staff and the family. The staff will be “formally” dressed which can set up barriers to communication and will probably only meet the family some time into the Resuscitation event.

The social worker can act as facilitator, introducing the various players in the drama and can help them to communicate with one another, not least by acting as ‘demystifiers’.

6. They are literally asked to “translate’ the medical jargon, explain technical terms, identify team members and explain their role in the Resuscitation. Whilst there may be some parents who are familiar with the technology of emergency medicine thanks to television, it nevertheless remains a huge shock to actually see their child lying on a stretcher surrounded by machinery and very tense strangers.

And of course with the diverse mix of cultures and living standards and conditions, there can be no assumption that the families have had any prior exposure to a sophisticated university hospital environment.

7. Fifthly, the Social Worker is there ‘simply’ to provide emotional support. To counsel if necessary; to pray with the family if required; to hug them, to listen to them, to simply bear witness. But above all, she is there next to them.

8.Lastly, and mundanely, she understands the bureaucracy and infrastructure if the hospital. She knows where the telephones are located; how to get a cup of tea, and where the toilets are. This seems obvious and even frivolous but is often overlooked and the family are left doubly stranded.

When the child actually arrives in the Unit, obviously the first priority of the medical team is always towards the physical resuscitation, and remains so until the child is either stable or has died.

When the family arrive they are taken into a suitable waiting area/relatives lounge by one of the floor Nurses, who will stay with them until relieved.

As soon as possible, a senior Nurse is required to go and speak to the family. The Nurse introduces herself, and identifies the parents at the earliest opportunity. They are asked if they are aware of what has happened to their child and the situation explained as completely as possible.

1.The introduction is done in a friendly and open manner. It is important to remember that firstly, the hospital is not their environment and so it is only good manners for the Nurse (whose “house” it is) to introduce herself.

2.Secondly, you can easily establish a climate of professional concern, because as the authority figure, you initially have the opportunity to set the tone of the relationship by your initial interaction.

3.Equally it is important to identify the parents, simply because as the parents, they should have first claim on your attention.

4.Additionally, you need to take a brief medical history and find out if there are any allergies, underlying conditions and such like.

5.They will probably also need to give consent for invasive procedures and operations.

The asking for consent has more than mere legal significance as it starts to restore their control of their child. They understand that the staff have done/ will do whatever is necessary to save the life of their child, but feel isolated and powerless and this small acknowledgement pays large dividends particularly later should the Resuscitation be unsuccessful and you seek to harvest the organs.

6. At all times the conversation flow should be pitched at the speed of comprehension of the relatives. People do not always “hear” what they are being told, generally because of the stress of the event, or because they are being swamped with information.

The family and friends of a dying patient are travellers in a strange land. The event itself, the hospital environment, all makes for feelings of loss of control, of helplessness.

The family needs to see their child, to be afforded the opportunity to touch him, to share in the pain. They need to feel that they are part of what is happening to him, that they have some control over what is happening.

On an emotional level, the ‘laying on of hands’ has long been associated with healing, and the parents need to be able to pass their energy onto their child. The idea is to include the parents as “carers, not to make them (further) casualties”.

There are practical reasons for the parents to see their child.

One Saturday afternoon we were resuscitating a young boy with massive head injuries .I had explained to the parents that he was critically ill, and invited them into the Resus Room to watch what we were doing.

As I was about to cut a piece of red string with some beads on it from his wrist, so that I could do an arterial blood gas, his father asked me to leave the string alone for religious reasons.

The father explained that in terms of their faith, that if the child was to die without the string and beads on his wrist, then he would not progress to the next level of reincarnation or being.

That was a primary consideration and concern for the parents.

They absolutely understood that their child might die;they had absolutely no objection to anything and everything we were doing to their son;but they didn’t want his death to be in vain in terms of their world view.

How easy was it for me to simply move the piece of string and still do the blood gas? Very easy.

And when they left a few weeks later , with their son ,they sought me out to express their thanks that I had 'heard' their plea and was prepared to help their child transcend if the medical interventions had failed.

It often simply doesn’t matter what you are doing technically to the child. 

Rather, parents want to know that everything possible was done for their child, in terms of their frame of reference, be it religious, cultural or spiritual. Perhaps for example a Jehovah Witness wants to insure that his child is not receiving any blood products. By speaking to the family and showing them their child, you can lessen their overall anxiety, and establish a good working relationship.