A reflection from the other side of the bed

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a v a i l a b l e a t w w w . s c i e n c e d i r e c t . c o m

j o u r n a l h o m e p a g e : w w w . e l s e v i e r . c o m / i c c n

ORIGINAL ARTICLE

A reﬂection from the other side of the bed—–An account of what it is like to be a patient and a relative in an intensive care unit

Eddie Crunden

^∗

Surrey and Sussex Healthcare NHS Trust, Intensive Care Unit, East Surrey Hospital, Redhill, Surrey, RH1 5RH, England, United Kingdom

Accepted 12 September 2009

KEYWORDS Patient experience;

Relatives’

experience;

Reﬂection on practice;

Transformational learning;

Quality

Summary Following a two-day history of pyrexia, stomach pain, diarrhoea and an emergency laparotomy my wife was admitted to an intensive care unit (ICU) with septic shock. Lucy was artiﬁcially ventilated for seven days, and was treated with ﬂuids, vasopressors and antibiotics.

Her condition continued to deteriorate and on about the third day she looked as though she might die. However over the next few days Lucy began to recover and she was eventually transferred to a ward and came home three weeks after admission to hospital. During her stay in the intensive care unit, Lucy developed pneumonia, bilateral pleural effusions, acute renal failure and a pericardial effusion. Over the weeks and months that followed, Lucy began to describe her experiences and the impact that these have had on her. She described what it felt like to be a patient in the ICU and the challenges that she faced during her recovery. I am a Registered Nurse and at the time my wife was admitted to the ICU I had spent twenty years working within the field of intensive care. Until my wife had been admitted to ICU, I thought that I had a good appreciation of what it was like to be a patient or a relative in an intensive care unit. Having experienced critical care at first hand and having had an opportunity to reflect on what happened I now realise what little insight I had. I have now come to realise that as nurses in intensive care there is much we can do to alleviate the suffering and discomfort experienced by some of our patients and relatives. Perhaps by describing what happened, I will enable the reader to understand more clearly and to reflect on those factors which have a deep and lasting impact on patients and their relatives and which can be influenced by nurses at the bedside.

For the purpose of this account, I have chosen to call my wife, Lucy.

∗Tel.: +44 01737 231669.

E-mail address:[email protected].

Background

In September 2004, Lucy was admitted to hospital in acute septic shock. We had spent a perfect weekend camping with friends and returned home feeling relaxed and happy. Lucy 0964-3397/$ — see front matter © 2009 Elsevier Ltd. All rights reserved.

doi:10.1016/j.iccn.2009.09.001

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and I went to work the next day and in the afternoon Lucy complained of stomach pains, headache and feeling feverish but as her periods were due she put this down to her usual monthly cycle and the onset of a cold.

The next day she still felt feverish. In the afternoon, her GP saw her and diagnosed gastroenteritis and advised Lucy to continue taking paracetamol and ﬂuids. However, during the course of the night, her abdominal pains worsened and she started to experience diarrhoea. I slept soundly through- out the night and by the time I woke up I was shocked by Lucy’s condition. She was cold, clammy and slightly confused. Using a sphygmomanometer and stethoscope that we kept at home, I took her blood pressure and because I was so surprised at the ﬁrst reading, I repeated it again just to check it. Her systolic blood pressure was 70 mmHg. I then took her pulse which was 120 beats per minute and in the light of these observations I dialled 999 for an ambulance and called the surgery to inform Lucy’s GP of what was happening.

An hour later, Lucy had been admitted to the Emer- gency Department at our local hospital. The staff in the Emergency Department acted swiftly to commence oxygen therapy and intravenous ﬂuids, take samples for microbi- ological screening and start broad spectrum antibiotics. A few hours later, Lucy was admitted to the high dependency unit with a diagnosis of acute septic shock and was com- menced on an aggressive regime of antibiotic therapy and ﬂuid resuscitation.

However, the overnight administration of almost nine litres of fluid and intravenous (IV) antibiotics resulted in no significant clinical improvement and it was decided by the surgical team, to take her to theatre and perform an exploratory laparotomy. Although a litre of pus was discovered in her abdomen, no focal lesion was identified and she was transferred to the intensive care unit post-operatively for ventilation and treatment with vasopressors and flu- ids. The infective organism was subsequently identified as a group A streptococcus.

Lucy continued to deteriorate over the next three days but fortunately on the fourth day she stabilised and began to improve. Lucy was ventilated for a total of seven days and was successfully extubated following a failed ﬁrst attempt.

Whilst she was ventilated, she developed pneumonia, bilateral pleural effusions and a pericardial effusion. At one point, haemoﬁltration was considered. After ten days on the ICU, Lucy was transferred to the high dependency unit for 24 h before going to a general ward. Lucy was discharged home three weeks after being admitted to hospital.

My experiences as a relative

The speed and suddenness, with which our cosy little world changed, left me dazed and confused. In less than 24 h, Lucy’s condition had changed from what appeared to be a simple and benign headache and period pains to a much more sinister acute illness. Forty-eight hours later she was ﬁghting for her life. I could hardly comprehend what was happening. To start with, I seemed incapable of accepting that Lucy was as ill as she was. Indeed if it were not for the sphygmomanometer I might have prevaricated even more and delayed contacting the emergency services. It was as

if I was in a dream, unable to acknowledge that this sort of catastrophe could happen to her and to me. This was something that happened to other people, not us.

In the ﬁrst few hours, as the implications of what was happening began to register with me, it was as if my mind had begun to start shutting down to protect itself from the horrors that might occur. I can remember being initially very business like and organised. Once Lucy had been admitted to the Emergency Department I contacted Lucy’s parents and sister and told them what was happening. I can remember trying to be positive and optimistic whilst at the same time conveying the notion that she was really very ill. Looking back now, it was as if I was operating on autopilot, attending to what had to be dealt with whilst at the same time, trying to avoid thinking about what was happening.

When Lucy was about to enter the operating theatre it was clear that she was terriﬁed about what was to happen and this only served to heighten my own fears and anxieties.

I felt powerless to help her when she needed my help most.

Up to the point that Lucy went to theatre, I had managed to contain my emotions but as I walked back to the car I felt completely distraught. I knew what the mortality rate was for septic shock and I started to think about what the outcome might be. Had I seen her for the last time and would I ever speak to her again? Would she survive the operation only to develop multiple organ failure and end up in ICU and die a few days later on a ventilator, surrounded by tubes and beeping gadgets? I got in the car and cried. I decided that whilst Lucy was in theatre I would return home to check on our two daughters before returning to hospital.

My ﬁrst impression of Lucy in the intensive care unit was that she looked calm. Gone were the frown and the worry lines. Gone was the frightened look in her eyes that ﬁlled me with fear. Despite being surrounded by monitors, IV pumps and other paraphernalia, she looked peaceful and rested and above all, she looked cared for and safe. My level of anxiety decreased slightly. As a nurse with critical care experience, I felt reassured that she was in the most appro- priate place and would receive the attention she required.

I was also greatly relieved that she had survived the surgery without signiﬁcant problems. However, as the next three days unfolded, it became increasingly evident that her condition was deteriorating. She was requiring increasingly high doses of vasopressors to support her blood pressure and her kidneys were showing the ﬁrst signs of failure.

During this time, I received sympathetic support from the staff. They knew I worked in an ICU in a neighbouring hospital and kept me up to date. They allowed me to visit virtually when I wanted to and plied me with copious cups of tea. Looking back now, the support that I, my daughters and other relatives received was outstanding. The support given to me mattered for two reasons. Firstly, it was an expression of kindness and empathy that helped to soothe the anguish and fear that I felt. Secondly, in a strange kind of way it offered me the additional comfort of being offered the kin- ship and support of staff who worked in the same ﬁeld as I.

When I visited, instead of feeling isolated and on my own, I felt as though I was part of a team.

I now realise that the greatest emotion I experienced was the overpowering and crushing fear that Lucy might die. I had never experienced fear like it before. Whenever I thought that she might die, I would almost stop breathing.

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It was a bit like holding a prolonged breath. Lucy’s condition continued to deteriorate during the ﬁrst three days after she was admitted to ICU and at one stage it looked as though she might not make it. On those occasions when I did go home, I would walk around the park on my own, pleading with God to spare Lucy’s life.

During my frequent visits to the unit, the staff kept me informed of what was happening. However, the knowledge and insight that I possessed as an ICU nurse, was a double edged sword. On the one hand, the staff and I could converse easily using the jargon of the speciality. What might have taken several minutes to explain an aspect of care to some- one who had little or no knowledge of critical illness, took us a matter of seconds. However, with those discussions came the chilling and frightening realisation that Lucy’s condition was grave and that she might die.

It was on about the third day, that it became evident that Lucy’s survival was not guaranteed. All the numbers were going the wrong way. Lucy’s blood pressure was barely adequate despite the vasopressors and she had developed pneumonia, bilateral pleural effusions and her renal failure was causing concern. Despite maximal supportive therapy, her condition continued to deteriorate and I was faced for the second time with the prospect that she might not survive. This time however, there was more time to con- template what might happen and what the impact would be on me and the rest of the family.

Until this point, our two daughters (aged 11 and 13 at the time) had not visited their Mum. Initially, I had hoped that Lucy would be ventilated for a day or two at the very most and that I would then be able to take the girls in to see her without them realising how ill she had been in between.

However, in the light of Lucy’s continued deterioration and possible death, I could no longer ignore the potential impact on the girls of them not seeing their Mum if she died. I rea- soned, rightly or wrongly, that it was better for them to be given the opportunity to see their Mum as she was before she died.

I thought long and hard and in the end I felt that I had to give the children the option of seeing their Mum as it could have been for the last time. On the one hand I wanted to protect them from the distressing circumstances that Lucy was in, whilst at the same time wanting to let them get close to her so that they could receive the comfort that comes from close contact between parents and their children. Although I had been involved in discussions of this sort with relatives before, I had never truly appreciated how difficult a decision it must be for a parent to make. On many occasions in the past, the partners of patients of mine would ask whether it was alright for their children to visit. Invariably I said yes, but I can now understand how difficult a decision it is for a parent to make in these circumstances. On reflection, I think I made the right decision.

Therefore, on about the third evening, I took them both to the hospital and we spent about an hour at the bedside.

Lucy looked pale but peaceful, the girls chatted away and I could barely contain my grief.

In those ﬁrst few days I felt extremely guilty at having to leave Lucy to be with our daughters. But it was clear that they were worried about Lucy’s welfare and were distressed that they could not see her. I wanted to be able to be with them and see them and provide them with support and lov-

ing. I for my part also wanted support and hugs from them as well as I had never felt as alone as I did then. However, I also felt guilty at not being at home enough with our daughters when I did go to see Lucy. I felt I was not providing the right amount of support to either the children or to Lucy and this really upset me. This is an issue that many visitors must face and I had not appreciated it in any real depth before.

On day six, Lucy had woken up and when I walked into the unit, she held her arms open wide for a hug. Despite the presence of the endotracheal tube, ventilator tubing and monitoring leads we embraced and cried for what seemed ages. The fact that she recognised me and smiled just made me want to hold on to her forever.

By day seven, it was evident that Lucy was going to survive. Her blood pressure and renal failure were improving and she was almost ready to come off the ventilator. The relief I felt was indescribable.

As Lucy gradually recovered both in hospital and at home, I was constantly on the look out for any signs of deterioration. The fact that no cause was found as to why Lucy became septic worried us both. Lucy remained marginally pyrexial for a fortnight after returning home but our fears were allayed following a visit to her General Practitioner (GP). As the weeks and months went by, life returned almost to normal. I returned to work in the ICU that I managed and Lucy returned to work four months after discharge from hospital.

I have to confess that I have found it hard working in the same type of environment in which my best friend and partner nearly lost her life. As the ﬁrst anniversary of Lucy’s admission approached I became more and more distressed at the thought of what had happened. It was as if I could not move on and with Lucy’s advice I sought and received help through counselling. There have still been many occasions when I have observed other families going through what we went through and these situations have on occasion upset me greatly. However, I feel that I have been given a rare opportunity to use my experience as an ICU nurse and as a user of the service to further improve the care that we give our patients.

Lucy’s experiences as a patient

On the day that Lucy was admitted, she was anxious at what was happening to her. She was in considerable pain and could see that I was very concerned at her state of health. How- ever, despite the fact that she knew she was very sick, she was reluctant to go to hospital and pleaded with me to let her stay at home when I called for an ambulance. Her anxieties were heightened on the journey to hospital by the bumpy ride and speed of the ambulance. During the course of the journey she fought to stay conscious.

In the Emergency Department she became even more anxious, especially when after the ﬁrst set of observations, she was moved from a general cubicle into the resuscitation bay and attached to the monitor. By this time Lucy was drifting in and out of consciousness. After a few hours in the Emergency Department, Lucy was transferred to the high dependency unit (HDU). Early the next day the con- sultant gynaecologist visited Lucy and in the light of her

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continued deterioration, recommended immediate surgery.

Lucy was prepared for the operation and was on her way to the operating theatre within 20 min. I accompanied her to the anaesthetic room where we said goodbye to each other.

She remembers feeling terriﬁed that she might not see me again. We kissed and said goodbye and she drifted off into unconsciousness.

When Lucy first woke up in ICU, she was alarmed by the fact that she could hardly move and that she was in an intensive care unit. She had no idea how ill she was or how long she had been in the unit until she saw the get well cards that were hung from tape above her bed. When she first came to and saw them, she believed they belonged to the previous patient, however as soon as she was able to focus more clearly, she could see her name written on the insides of the cards and it was only then that it dawned on her how long she had been in the unit. By this time Lucy had been in intensive care for five days.

During the last few days in the ICU, doctors and nurses kept introducing themselves to her, saying that they had looked after her during the previous week. This was dis- concerting to her as she felt as though she had lost control over an important aspect of her life; her memory. What distressed her was that for a signiﬁcant period of time, she had little recollection of what had happened to her. When she looked down at her feet, she saw a bloated tummy and two stockinged feet sticking out from a hospital gown. She felt rough and was sure she looked dreadful. She could feel the mattress move gently under her and she was aware of the urinary catheter and the wound drain.

Although the staff did their best to provide Lucy with privacy and dignity and to show her respect, Lucy still felt very humiliated as a result of her predicament. She experienced profuse diarrhoea that necessitated frequent washes and changes of bed linen, this in turn made her feel guilty that the nurses had to clear up the mess. She had never felt so humiliated in her life and because of the endotracheal tube, she discovered she could not communicate her distress or even cry.

During the ﬁrst few days after recovering consciousness Lucy felt totally powerless. Drug induced sleep came and went and there was the rhythmical noise of the ventilator in the background. She caught a glimpse of her hands—–

one bandaged the other not. They were very swollen and appeared to be green in colour.

Due to her pyrexia, the summer heat and lack of air con- ditioning she was covered only by a gown. This worried her as her bed was opposite the entrance to the unit and she thought that visitors and staff could see up her gown as they entered the unit.

Days merged into nights and at one stage a nurse said

‘Lucy, its 4 o’clock in the morning. Why are you lying there with your eyes wide open?’ She remembers spending long periods of time just lying there in bed, wondering, watching and listening.

Despite drifting in and out of consciousness, she felt as though she had hardly slept. The constant alarms, banging bin lids, telephones and bleeps made sleep very difﬁcult.

Lucy was also terriﬁed of going to sleep in case she did not wake up so she tried to stay awake as long as possible. Con- sequently, by the time she was transferred to the HDU, she felt as though she had not slept for a week.

Lucy felt intimidated by the large groups of doctors who congregated around her bed during ward rounds and she did not like being referred to as an interesting case—–‘she’s the 44 year old female with acute septic shock’. She felt like an animal at the zoo, on display and open to scrutiny.

One of the events that distressed Lucy most was when she heard the staff discuss her prognosis and the impact that her death may have on the children and myself. She heard one nurse say to the other ‘Wouldn’t it be terrible if she dies, how will he and the children cope?’

After 10 days in ICU and a further 24 h in HDU, Lucy was moved into a side-room on a general ward. The room had an en-suite bathroom and although this gave Lucy some wel- come privacy, it also heightened her sense of vulnerability.

With the exception of drug rounds, Lucy rarely came into contact with qualiﬁed nurses or doctors. The absence of a Critical Care Outreach Team meant that with the exception of occasional visits from an ICU nurse and some anaesthetic staff, there was no post-ICU discharge follow-up on the ward.

Nine days later and three weeks after she was admitted to hospital, Lucy was discharged home. With the exception of a follow-up appointment with the surgeon, there were no other arrangements made to monitor Lucy’s recovery.

Over the next few months, Lucy slowly began to regain her strength. Lucy did however experience difﬁculty with breathing when out walking and she would experience short- ness of breath on even the slightest gradients. Lucy saw her General Practitioner who referred her back to the physiotherapy department at the hospital and following a programme of breathing exercises, her breathing problems diminished. The visits to the physiotherapist also enabled Lucy to discuss some of her worries and concerns. Fortu- nately, the physiotherapist had seen Lucy whilst in ICU, and was willing to discuss the issues with Lucy and was able to allay many of her fears. This played a signiﬁcant role in Lucy’s psychological recovery.

At six months, Lucy was still easily fatigued and experienced frequent flashbacks and nightmares. A year later, she had almost returned to normal. However, as the first anniversary of her admission approached, she began to experience a resurgence in her flashbacks and nightmares.

Following an appointment with her GP, Lucy received counselling which helped her to come to terms with what happened.

It has now been four years since Lucy was discharged home. Apart from a laparotomy scar Lucy is fully recovered physically and through the help she received during counselling, she has also come to accept what happened to her. Although she knows that she will never forget what happened, she now accepts that what happened, happened then, and this is now and tomorrow is another day. As a consequence of what she has been through Lucy feels that she is a different person to the person she was before she became unwell.

Reﬂection

During the weeks that followed Lucy’s discharge home and after I had returned to work, I started to think about what had happened to us both when she was critically ill. The

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more I thought about it, the more I began to realise that there were differences between what I had held to be truths about the patient and relative experience and my own recent and painful exposure to reality. A number of issues became evident which prompted me to think about my own practice.

The aspect of the experience which has affected me most was the realisation of how unpleasant physically and psy- chologically it could be to be a patient. To see and hear Lucy’s fear of what she knew was about to happen, of what it was like to wake up intubated and ventilated and to be aware that you might die was a perspective that I had never appreciated in such detail before. Although I had assumed that being a patient could be frightening and unpleasant, the intensity of the experience identiﬁed what it is like to be in such a situation.

The impact on relatives and visitors of the environment and watching what happens was another aspect that I had underestimated in the past. Relatives witness the tri- als and tribulations of their loved ones’ journey to either recovery or death. Either way, they will have experienced extremes in emotion that the patient will be unaware of. Whether the patient lives or dies, the relative will probably have cause to recount and relive the experience on numerous occasions in the months and years that follow.

I can now appreciate that experiences of this sort can be deeply and emotionally upsetting for both patients and relatives, causing anguish which may result in psychological consequences such as post-traumatic stress disorder.

When discussing my experiences with colleagues today, it is evident that many ICU nurses do not truly appreciate what patients or relatives go through. Although nurses may provide care that is of a high technical quality, they may not possess the insights that would help them to meet the psychological and emotional needs of their patients.

For example, the single most signiﬁcant act that made Lucy’s experience more bearable was being acknowledged by nurses and doctors. Whether it was a hug from a nurse when she was feeling low or a wink from a doctor when surrounded by the team on a ward round, the impact was the same. It made her feel better.

Whether patients or their relatives possess religious beliefs or not, being treated in an intensive care unit is a deeply emotional and spiritual experience. The proximity of death or loss can induce feelings of fear and grief that can be unbearable. In these instances, the patient’s or relative’s need to feel in close proximity with others and not to feel abandoned are aspects of our roles as nurses that we may fail to realise or underestimate when looking after patients.

Prior to Lucy’s admission, I had believed that good quality intensive care was manifested in such things as mortality and infection rates, or the numbers of complaints and com- pliments and on the numbers of incidents and drug errors.

What I have now learnt is that whilst Lucy was in the intensive care unit bed, the focus of her experience was on the pain, discomfort and humiliation she felt. What she valued most were small acts of kindness and caring that helped her to retain her dignity and reduced the fear that she felt. She wanted to feel safe and she wanted her family to be looked after as well.

As a consequence of Lucy’s admission, it is now evident to me that over the past two decades, I had become immersed in the milieu of the intensive care communities in which I have worked. In my early years in intensive care I had placed a higher priority on the emotional and psychological needs of patients. However as the years had passed I had become complacent in the way I viewed these priorities and that these had gradually and imperceptibly departed from what patients and relatives view as important. Over the preceding years I had tended to concentrate on master- ing the technical and scientiﬁc aspects of intensive care. I took pride in the knowledge I acquired and in my ability to manage complex treatment regimes and the sophisticated technology.

So how has this experience changed my practice? The simple answer is that it has completely changed my perspective on what is important in looking after people who are critically ill. What I have learnt is that whilst intensive care medicine is often an unpleasant and horrifying neces- sity, there is much that we can do to make the experience more bearable and less frightening for both patients and relatives. Although we may not be able to prevent the more unpleasant aspects of being critically ill, it is still possible to positively inﬂuence care and improve the patient and relative experience.

The sudden and dramatic change in my perspectives on critical care nursing has both surprised and fascinated me.

Having worked in the speciality for twenty years, the last thing I expected at this stage in my career was a significant change in my perspectives of the fundamental role of the staff. The model of transformative learning may help to explain the change in my beliefs and behaviour.

The educationalist Mezirow (2000) suggests that we all possess perspectives of reality which are dependent upon re-enforcement from various sources in the world in which we live and work. The assumptions and beliefs we hold are based on our experience that what has happened in the past will happen again. Transformative learning occurs when our perspectives are challenged by what Mezirow (2000) describes as a ‘disorientating dilemma’ which is often trig- gered by a life crisis. This model of learning suggests that our perspectives on life change or transform when we critically appraise our own assumptions, beliefs and emotional reactions in response to a crisis. However, the model also suggests that the learning process can involve a profoundly emotional and spiritual transformation as well. Mezirow (2000)suggests that this is because we may initially develop beliefs and attitudes in order to cope with unpleasant and frightening situations which are then subsequently challenged during a crisis.

Having been through a crisis that was Lucy’s illness, I would venture to suggest that this was the disorientating dilemma that has changed my beliefs. The strategies that I had developed over the years to cope with the unpleasant aspects of intensive care had been exposed and challenged by the reality of what had happened. What I discovered was that for some patients, their experiences may have been more unpleasant than I had previously wanted to acknowledge or accept and that this realisation deeply affected me emotionally. I have come to realise that whether we like it or not, the intensive care unit can be an unpleasant place for patients and relatives. However, I have also come to

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appreciate that there are numerous ways in which staff can positively improve the emotional and psychological care of our clients.

Conclusion

My journey as an intensive care nurse began in 1984 and took a dramatic turn in 2004 when my wife was admitted to an intensive care unit. As a result of her experience I have had to confront a number of assumptions and beliefs that I held to be true about care within an ICU. I have come to appreciate that whilst intensive care is a useful and neces- sary therapy, there is much that nurses can do to ameliorate the negative physical, emotional and psychological effects of the environment.

Although Lucy realised that little could be done to reduce the physical discomfort she felt, the interventions that mattered to her were small acts of kindness that enabled her to retain her sense of identity and an awareness of the impor- tance of attending to her dignity and privacy.

As a relative and a critical care nurse, the process of reﬂecting on what happened has been a painful and sobering experience. I believe that what I have learnt has equipped me with a better insight into the needs of patients and relatives and that I can use this knowledge to improve the spiritual and emotional care of patients within critical care areas.

Acknowledgements

Lucy and I would like to acknowledge the care given to us and our families by the nursing and medical staff in the hospital concerned. The staff provided excellent care and support to us all. We cannot thank them enough for what they did.

Reference

Mezirow J. Learning as transformation: critical perspectives on a theory in progress. San Francisco: Jossey Bass; 2000.