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.
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