Helping your Client Make Sense of their COVID-19 Intensive Care Experience
Key words: ICU, Intensive Care experience, Covid-19, Coronavirus, Vivid Dreams, Nightmares,
Hallucinations, ‘Delusional Memories’, Trauma.
Abstract:
Findings from both medical and
humanistic paradigms support a connection between experiences rated as extremely stressful in ICU and later, often long-lasting,
psychological distress, with a very high risk of PTSD (20% or more). The provision of routine, timely and appropriate psychological
help for patients after an ICU admission is therefore important for their wellbeing in survivorship. ICU is a stark confrontation
with mortality, so appropriate
help includes paying due attention to patients’ existential issues, as well helping patients to make
sense of their ICU vivid dreams and hallucinations and move from panic and terror to empowerment.
My Background:
In 2001 I began studying patients’ experience of ICU and then set up a Psychological
Aftercare Service for ICU Patients at Croydon University Hospital, which was the first routine service of its kind in the
UK. During the following fifteen years until my retirement from the NHS, I saw many hundreds of patients who had been ventilated
in ICU. I have spoken at conferences nationally and internationally about patients’ experiences of ICU, and have published
on the subject. Though now retired from the NHS, I have a private, general, psychotherapy practice and also continue to see
some people who have been distressed by their intensive care experience.
INTRODUCTIONThe Coronavirus pandemic has highlighted the dramatic character of a stay on ICU
and the trauma that can ensue.
Already over the past 30 years, there had been growing awareness of
both the extent of psychological trauma that can occur during and post-ITU, and its potentially deleterious consequences.
A meta-analysis of recent research on the incidence of post-ICU PTSD concluded that 20% of patients suffer with PTSD following
their stay ICU (Righy et al. 2019).
In ICU itself, impaired communication, nightmares and disorientation,
processes such as intubation and ventilator weaning and delusional memories are potentially terrifying and impactful experiences
for ITU patients.10,7] In addition, ‘ICU delirium’ has
been linked in recent years to poor clinical outcomes: longer stays
in ITU and
hospital,
higher morbidity and mortality rates.[8] ICU delirium is reported to affect up to 87% of patients[8] and, still now, often
goes unrecognised.[1,12] Formerly known as ‘ICU syndrome’ or ‘ICU psychosis’, it has been defined
as an acute syndrome due to a physiological cause, which develops over a short period of time (hours or days), has a fluctuating
course and is characterised by a disturbance of consciousness, periods of inattention and disorganized thinking, often with
paranoid thinking and hallucinations; it can manifest itself as hypoactive, hyperactive or mixed.[1] While predisposing and
precipitating factors have been evidenced,[8] the exact pathophysiological mechanisms involved and the association with dreaming
remain unclear.[1]
I am offering these two papers as a resource for therapists to complement
the medical model perspective. Working from an existential-phenomenological perspective, now further informed by Sensorimotor
Psychotherapy, I have sought to summarize my quest, over 15 years, to better understand patients’experience of what
I have called ‘the whole ICU event’(2006). This expression encompasses the whole journey from a patient’s
admission to ICU, through their stay on the unit, to their discharge from ICU onto a general ward and then home - every element
of which can be extremely traumatic in itself. For many, foremost among these traumas are the vivid dreams and hallucinations
- the focus of my second paper. Though referred to clinically as ‘delusional memories’, these incredibly
vivid dreams are for these patients’ the ‘reality’ of what was happening for them on ICU and therefore deserve
our due attention. ICU vivid dreams and hallucinations are unlike ordinary dreams, they usually come under a small number
of themes and require a particular form of therapeutic dreamwork. For it is my belief, derived from strong anecdotal
evidence and further supported by recent developments in neuroscientifically informed trauma therapies, that making sense
of the content of these vivid dreams can play a crucial role in patients’ psychological recovery by significantly reducing
the risk and symptoms of PTSD.
I need to point out from the start that these two
papers are not based on formal research, they have emerged from my work over a period of 15+ years with many hundreds of ventilated
patients seen routinely a few days following their discharge from ITU onto a general ward, and then contacted for follow-up
some months later with a questionnaire and the offer of counselling. The evidence for my work with patients immediately after
ICU and some months, or years, after discharge is therefore categorised as ‘anecdotal’ - and I have spoken on
that basis at training days and conferences, nationally and internationally.
A CONFRONTATION
WITH MORTALITY
Pre-Admission to ICU
We focus on people’s experience of ICU, but
we need to remember that the lead up to admission onto the unit may in itself have been traumatic: the waiting, at home or
on a hospital ward, to see how symptoms might be evolving, the difficulty breathing, possibly the sense of suffocation, the
anxiety and fear as the daily news reports new cases of infection, and new deaths… And there are many who will have
lived through this pre-admission period alone - whether totally isolated at home, or feeling alone and abandoned in
hospital, as visitors were not allowed.
ICU admissions will also include people who were going about their daily routine in the home or outside
and then found themselves some days or weeks later in the alien, sci-fi-like environment of ICU, unaware that they had suffered
a serious health event or accident.
Patients’ Memories of ICU
The reality of the situation
for ventilated Intensive Care patients is that without its specialist care most of them would die. Indeed, some patients feel
that they have experienced dying or death itself: they speak variously of the white light at the end of the tunnel, of flying
over white clouds with deceased loved ones, of being in pastures green etc. Then something happened, for instance the dead
parent took them back, and they concluded ‘it was not my time’. While we cannot know whether a patient’s
experience corresponds to particular critical medical situations that may have coccurred, it is important to acknowledge the
power of such experiences for the patient. Similarly the question of whether the hyper- and hypoactive versions of delirium
are expressions of, respectively, a fight/flight and feigned death responses, and whether they correspond significantly with
both outcome and vivid dreams, are intriguing questions that we cannot as yet answer.
While some patients
are left with flashbacks and memories of ICU, some have no recollection of that time whatosever. Others only remember their
vivid dreams and hallucinations. All three experiences may be traumatic in different ways.
‘It’s
like time got lost’
‘Lost time’ creates a sense of discontinuity which can persist over months and even years,
especially if something significant happened in that time: I used to give the example of people being admitted into ICU before
9/11 and waking up just a couple of days later into a changed world, people who will never have any personal recollection
of 9/11. With Covid-19, there will have been people admitted to hospital pre-lockdown who can’t understand why they
don’t have any visitors, nor what relatives have been going throughout and they may never quite understand those early
days of mounting anxiety. And for those whose birthday, or other significant event, occurred while on ICU, the birthday and
significant event missed will never return.
‘I don’t know what happened.’
At first one thing puzzled me:
almost every patient I saw would say to me ‘I don’t know what happened.’ I wondered, whether they had not
been told, or told too soon to be receptive. It was not until I met J., who had a good clinical understanding of his admission
to and stay on the Unit, yet still wanted to know ‘what happened’, that I finally understood this distressing
feeling. I realised that what J. was trying to do was piece together his own story: not what the nurses or doctors had done
to him, nor what they or his relatives had observed him do (such as pulling off wires, swearing at staff, fighting them).
Other people’s thoughts and observations only represented their experience of J. in ICU, not J’s own own; yet
J. himself did not ‘know’ what his own experience of ICU had been! All he could recall was the occasional sensation
of being wired up to machines and strange, incredibly vivid dreams.
‘I don’t know what
happened’ expresses the patient’s need to fill the gap in their memory, to have a personal storyline to bridge
the discontinutities between the person they were prior to ITU, the death they avoided, and the person they now are.
(There are those however who
feel safer with the briefest of summaries, such as ‘I collapsed at home and came to ITU, but now I’m much better.’)
VIVID DREAMS AND HALLUCINATIONS; ‘DELUSIONAL MEMORIES’
Vivid dreams and
hallucinations are often the first thing that patients talk about to their relatives on regaining consciousness - with tales
of being spied at through the holes of the polysterene-tiled ceiling, a particular doctor or nurse trying to kill them, sexual
orgies and babies being born - for the dreams are so vivid that patients have great difficulty distinguishing dream from reality.
This, not surprisingly, is likely to be met with a mixture of laughter and anxious concern. When an ICU patient’s vivid
experience is received in this way, they often fear for their sanity - as do the relatives. And a doctor or nurse’s
explanation that these are just ‘delusional memories’ may add to their fears.
For almost
twenty years I have made intensive care dreams my speciality.
Here in brief is a distillation of my conclusions:
1.ICU dreams can be seen to reflect
the ICU life and death situation which addresses the patient and express their response to that situation, which includes
fighting to survive. 2.Although each ICU dream tells a personal story, ICU vivid dreams and hallucinations usually fall under
ten main themes.
3.
In my professional experience, by following a few simple steps, it is usually possible to help the patient make satisfactory
sense of their ICU dreams and move from fear to empowerment.
If your patient
is distressed by their memory, or their reliving, of their vivid dreams and /or hallucinations, I recommend you look up my
paper “Making Sense of ICU Vivid dreams and Hallucinations’, also on this
website.
POST-TRAUMATIC
STRESS DISORDER (PTSD)
Vivid dreams, PTSD and the danger of retraumatisation
Anecdotally, from my follow-up
sessions with my patients and with patients for whom help was not available at the time, I have concluded that:
Making sense of
the vivid dreams seems to help minimise the risk and symptoms of PTSD. This is in line with recent developments in trauma
therapy.
Whereas patients in post-ITU bedside sessions can
recall their nightmares without excessive distress, PTSD patients who have been reexperiencing these ICU vivid dreams for
months or even years, may well go out of their ‘window of tolerance’, if asked to recount their nightmares. They
will first need to be resourced.
Flashbacks
Flashbacks may be occasional,
triggered by situations reminiscent of ICU (for instance a ceiling in a shop might remind them of the one in ICU).
They may, in my professional
experience, represent the patient’s way, some time after discharge, to reconnect with the strength they showed in their
fight for survival in ICU. Though distressing, flashbacks can become useful if framed in the patient’s story of survival
and resourcefulness.
However,
if flashbacks and images occur frequently or affect everyday life, though not unusual, it is lilely to be a sign of PTSD.
The patient should where possible be referred to a trauma counsellor or their GP.
AFTER DISCHARGE HOME
Being discharged onto a general ward from ICU and
then finally home, while obviously great steps forward, can leave patients with very mixed feelings, where apprehension and
anxiety sit side-by-side with relief and even excitement.
Post-ICU patients are by definition survivors, yet
there are two sides to survival: there is survival from death and survival for life.
A stay in ICU also brings up all sorts of existential
questions and reflections like: How did I catch Covid-19? Why me? I survived, but why? And what did I survive
for? What now? What next?
The search for a ‘cause’, besides simply wanting to know,
or blame, is often an attempt at regaining control over the world and ourselves, when everything feels out of control.
The question ‘Why me?’
can challenge our whole system of values and beliefs: beliefs about good and evil, right and wrong, the existence of God -
a God of mercy or a vengeful God?
Such questions can keep patients stuck in a sense of victimization,
depression or despair, but can also becomes a catalyst for taking stock and for change: they can help reflection about what
gives meaning to their life, about values, realistic possibilities and choices before them and the obstacles that might get
in the way.
Lockdown and self-isolation
These add another dimension to the patient’s
return home: these are ‘strange times’, as uncertainty prevails and people’s emotions are running high -
or stuck at a low point.
Patients
could usefully be asked the following question: Three years from now, when you look back at this time, what would
you like to see?
Those
who were lucky enough not to have to battle difficult life situations during lockdown (not just illness, social living conditions
and financial worries, but also personal history issues) may wish to feel that something valuable had emerged in that time.
But for all those who did have to deal with such situations, “I coped” will be in itself an achievement worth
remembering and honouring.
Lewes May 2020
Laura Barnett, MA (Oxon), MA, UKCP Reg., MBACP (Sen.Accred.),
EAP Reg.
References:
Barnett, L. (2006) A Neglected Client Group: patients who have been in
Intensive Care,
in Therapy Today (2006), 17, 4: 19-21 Rugby BACP Publications.
-- (2006) Working with Patients who have been in Intensive Care, an existential
perspective, in Therapy Today (2006), 17, 5: 33-5 Rugby BACP Publications.
-- (2009) Surviving Intensive Care in Barnett, L. (ed.) When Death enters the Therapeutic Space,
(2009), London: Routledge
Righy, C., Rosa, R.G., da Silva R.T.A. et al. (2019) Prevalence
of post-traumatic stress disorder symptoms in adult critical care survivors: a systematic review and meta-analysis. Crit.
Care, 23, 213. https://doi.org/10.1186/s13054-019-2489-3
