Section 5. Psychological and ethical care
5.1. Mental effects of critical care
The psychological needs of critical care patients are frequently overlooked as a great deal of time and effort is allocated towards caring for the critically ill patient, e.g. monitoring equipment being used to support them. Although the physical aspect of critical care nursing is paramount, there is also a psychological dimension to critical care which also needs to be discussed and understood in order to address and take effect on the patient’s physiological wellbeing. These important aspects are communication, relatives and sleep.
Not every patient’s first language is English – so do check 
Communication with Patients
Communication strategies can be either verbal, non-verbal, conscious or unconscious. They all play an important role in ensuring that the critically ill patient’s psychological well being is met and addressed within a stressful environment, and – regardless of the communication strategy adopted – one may affect another. Furthermore, communication is an essential activity of living, which is as important as physical support. Patients often experience dissatisfaction with the level and mode of communication during their hospital stay; this is associated with the quality and amount of information received and with insufficient, confusing and contradictory information being disseminated by different health care professionals.
By giving information, health care professionals can speed up recovery and reduce the number of complications and the need for ongoing pain relief. Furthermore, within an acute care setting, the development of verbal skills, the giving of information and additional use of listening skills are insufficient on their own to minimize patient dissatisfaction. In order to increase proficiency at monitoring and interpreting non-verbal cues from physically dependent patients who are unable to communicate verbally – due to speech loss or factors affecting speech, such as breathlessness or pain – health care professionals need to focus upon their communication strategies and work towards enhancing any shortfalls they may be experiencing.
Non-verbal communication is the term used to describe all forms of human communication not controlled by speech and it can be used therapeutically by health care professionals. The non-verbal component of communication is five times more influential than the verbal aspect. In addition, stress can be actively reduced, using relaxation and soothing techniques, and caring can be conveyed through touch and sensitivity. Touch is an important means by which the giving and gathering of information can be achieved, but significant consideration should be given to the fact that people are individuals, so interpretation of tactile communication will differ from person to person. This mode of communication must therefore be assessed on an individual basis and it must be decided whether this is the appropriate mode – hence, the sensitivity aspect comes into play.
The communication process comprises five elements:
1. The sender or encoder of the message
2. The message itself
3. The receiver or decoder of the message
4. Feedback that the receiver conveys to the sender
5. The environment in which the message is transmitted
When planning to meet patients’ communication needs there are six classical essential areas:
1. Orientation to the time, day, date, place, people, environment and procedures
2. Specific patient teaching on any aspect of care
3. Adopting methods to overcome patient’s sensory deficits
4. Comforting patients who are confused or hallucinating
5. Communications which maintain the patient’s personal identity
6. Helping the communications of voiceless patients
Always check what your patient’s hearing, speech and vision was like prior to critical care admission 
It is important to remember that the information given through communication may not be remembered, especially by the critically ill patient whose medications may interfere with the processing and storage of information. In addition, the patient may be unable to assign meaning to or organize the information at the time of exposure to it. This may lead to confusion and lack of memory with regard to the occurring event.
Barriers to, and interference with, communication can occur at any point in the communication process. A summary of potential problems relating to the patient’s reception of messages from the nurse in acute hospital settings is provided in Table 5.1.
| Environment |
■ Noise
■ Lighting
■ Unfamiliar sounds and noises
■ Constant disturbances
■ Impaired day and night rhythms
■ Isolation and confinement
■ Loss of familiar contact, e.g. family
|
| Communication |
■ Social isolation
■ Inappropriate touch
■ Conversation around or at end of bed
■ Reduced contact or stimuli
|
| Medical and nursing interventions |
■ Medication
■ Constant/regular taking of observations
■ Turning and washing
■ Suctioning
■ Physiotherapy
■ Renewing dressings
■ Taking bloods
|
| Physical condition |
■ Alcohol/drug addiction
■ Previous cerebral damage
■ Increasing age
■ Underlying chronic pathology
■ Altered conscious state
■ Deranged acid–base balance
■ Hypoxia
■ Sleep deprivation
|
Effective Communication
The critical care setting can dehumanize the individual patient experiencing hospital stay. A great deal of importance is placed on the health care professional’s role in treating the patient as a person and not as an appendage to a machine. This can be achieved by using the necessary communication skills so that the critically ill patient’s overall care and treatment is benefited and achieved. It is important to note that communication can make a major contribution to the patient’s emotional stability while in a critical care setting.
All procedures should be explained to patients and relatives so that there is effective communication and a reduction in stress and anxiety. Relatives play an important role in reducing patients’ stress and anxiety levels by simply providing familiar touch and communication. This allows a personalized approach to care and Dyer (1995a) supports the notion that patients should not lose touch with the outside world by suggesting that patients should be addressed by their preferred name and conversation should mimic their normal conversation so that an environment, similar to their own, is closely resembled and experienced.
The importance of health care professionals maintaining effective communication with critical care patients is well recognized as a vital component of the delivery of quality health care. The communication that occurs between nurse and patient is probably the single most important way of relieving patient anxiety in critical care and therefore nurses should endeavour to talk to their patients as though they were awake even if they appear unconscious. A communication risk assessment tool is outlined in Table 5.2. It is vital that the nurse gives reassurance and explanation to the patient in order to limit anxiety, but communication is much more complex than telling the patient what has happened, what is happening and what will happen. The patient is an individual and therefore the nurse needs to ensure that they have acquired personalized information about them so that they may individualize the nursing care (see Case study in Box 5.1).
| Profound/severe difficulties (scores 2) | Intervention |
| Does the patient fulfil the criteria below: | Observe patient for any attempts to communicate/monitor their response |
| Unconscious | Refer patient to speech therapist team if unsure about ability to communicate |
| Deeply/moderately sedated | Can sedation be reduced? |
| Non-responsive/minimal response to deep pain | Can ventilation be reduced? |
| Fully ventilated | Assess neurology |
| Profoundly withdrawn, passive, unwilling to communicate | Assess Sedation Score |
| Confused | |
| Has a neurological disorder | |
| Richmond Sedation Score −5 to −2? | |
| Moderate difficulties (scores 1) | Intervention |
| Does the patient have: | Can cuff be deflated? |
| Cuffed tracheostomy tube | Can patient have speaking valve trial? |
| COETT, but is alert | Liaise with interpreters |
| Facial weakness | Use of hearing aids/glasses |
| Speech/language/voice problems | Refer to speech therapists |
| Minimal English | |
| Visual or hearing impairment | |
| Withdrawn, passive, unwilling to communicate? | |
| Mild/no difficulties (scores 0) | Intervention |
| Does the patient have: | Encourage communication |
| No tracheostomy or COETT | Use writing aids to support speech |
| No speech/language or voice problems | |
| No neurological impairments | |
| Good spoken and written English | |
| Alert and orientated | |
| Richmond Sedation Score −0? |
Box 5.1
Case study
Dave, a 55-year-old gentleman who was diagnosed with Guillain–Barré syndrome, was unable to communicate except by moving his eyes, up and down for yes, side to side for no. Dave had a continuing terror regarding his illness, he was stressed and found his surroundings uncomfortable and difficult to understand. His continuous stress was affecting his physical state, he was difficult to ventilate, and was constantly agitated with a tachycardia and high blood pressure. His wife tells you that he enjoys gardening, has a dog and keeps owls.
This scenario gives insight into Dave’s life and demonstrates that there is a man hidden beneath the highly technological equipment. It also provides a basis for conversation with his family and something to talk to Dave about other than the weather, time of day or regular reassuring or orientating communication. By talking about his garden, his dog, his owls and his family there is the chance that Dave will feel less alone and have the impression that the person caring for him knows him. It also assists in refocusing his mind on happier times and looking towards those times again.
Sensory Imbalance
Sensory imbalance occurs when the level of sensory stimuli received by the individual is either too great or too minimal to be recognized. Benner (1984) suggested that illness replaces familiar bodily responses with ones that are alien to the patient. There is then potential for the patient to interpret these responses incorrectly. In critical care, a patient’s sensory balance becomes destabilized and therefore vulnerable, due to many and varied external stimuli.
Sensory imbalance involves a fluctuating state of consciousness that may be characterized by many factors (Table 5.1). An increase of sensory input, or when certain stimuli are above normal in amount, leads to sensory overload and can contribute to sleep deprivation. Sensory deprivation is associated with the absence or decrease of normal stimuli, poor quality stimuli resulting in reduction in a patient’s well being.
Furthermore, with an increase of sensory input or when certain stimuli exceed normal limits, the patient often experiences sensory overload and this in turn can contribute to sleep deprivation.
Sensory Overload
Sensory overload occurs when a person receives multiple stimuli and cannot perceptually disregard or selectively ignore them. Excessive sensory stimulation prevents the brain from appropriately responding to, or ignoring, certain stimuli. Due to the amount of stimuli leading to overload, the person may no longer perceive the surrounding stimuli in a way that makes sense, which can lead to serious complications (Table 5.3).
| Sensory imbalance | Cause | Outcomes |
|---|---|---|
| Sensory overload | Increased noise level: | Restlessness |
|
■ phones ringing
|
Total body discomfort | |
|
■ monitor alarms
|
Agitation | |
|
■ toilets flushing
|
Loneliness | |
|
■ hand-washing
|
Isolation | |
|
■ conversation
|
Increased awareness of the noise level | |
| Unfamiliar sounds from infusion pumps, respirators and suction equipment | Loss of control over self and environment. | |
| Physical discomfort due to limitations of bed rest | Poor perception of surrounding stimuli | |
| Loss of privacy due to removal of clothes and feared loss of belongings | Sweating hands | |
| Stressful environment | Numbness | |
| Uninvited touch | Fidgetiness | |
| Constant lighting | Tachycardia | |
| Sleep deprivation | Increased noise level and interruptions leading to: | Slow recovery |
|
■ taking longer to fall asleep
|
Reduced patient attention | |
|
■ less time sleeping
|
Mood changes | |
|
■ more awakenings
|
Depression | |
| Personality disorders | ||
| Analgesia preparation | ||
| Fear | ||
| Restlessness | ||
| Anxiety | ||
| Fatigue | ||
| Confusion | ||
| Illusions | ||
| Delirium | ||
| Hallucinations | ||
| Disorientation | ||
| Sensory deprivation | A reduction in the amount and variety of stimuli | Problem solving difficulties |
| Perceptual deprivation – no variation in stimuli | Boredom | |
| Isolation – physical or social | Restlessness | |
| Confinement – immobilization or restriction of movement | Irritability | |
| Increased sensory input (sensory overload) | Emotional upset | |
| Visual hallucinations | ||
| Reduced concentration |
Noise is considered to be an important factor in causing sensory overload. Consultants, doctors, anaesthetists, physiotherapists, ECG technicians, visitors, and nursing staff create a potential source of noise and disturbance to the patient. Noise can give patients extra anxiety, i.e. alarms going off and patients thinking that they are in trouble, and constant noise can prevent patients from sleeping.
The recorded noise levels in a busy critical care setting averaged 70 dB during the day and 65 dB at night. The international noise council recommends an upper limit of 45 dB during the daytime and 20 dB overnight. Much of the noise in a critical care setting may be described as ‘white noise’ e.g. a constant hum, which comes from equipment.
Increased level of noise in critical care is invariably caused by the bleeping of pumps, staff talking, telephones ringing, the constant use of suctioning and the constant hum of the equipment. This alone can cause sensory imbalance (Dyer 1995b). The majority of these noises are vital to caring for a patient on critical care. However, there are noises which can be viewed as less vital and these should be decreased with particular consideration for the patient’s presence taken into account. Increased staff awareness could encourage a more sensitive and welcoming environment.
Ensure that noise is kept to a minimum in the critical care environment 
Sensory Deprivation
The normal conscious state requires a minimum level of sensory stimulation and/or variation in type of stimuli received. The normal type of sensations received by the reticular activating system would include auditory, visual, olfactory, tactile and kinaesthetic stimuli, i.e. stimuli that relate to the position of joints in space and the degree of contraction of muscles.
When normal healthy individuals are deprived of all sensory input, i.e. auditory, visual and touch, there is a detrimental effect on the individual’s functionality (Glide 1994). Some individuals become bored, restless, irritable and emotionally upset. Visual hallucinations, poor concentration and problem-solving difficulties also result from sensory deprivation.
Sleep Deprivation
The unfamiliar environment of critical care may be further compounded by a patient’s altered conscious state, acid balance, hypoxia and sleep deprivation. The lack of sleep experienced by critical care patients has the potential to slow recovery and reduce patients’ attention during postoperative teaching or respiratory weaning (Freeman et al 2001). These factors further highlight the importance of allowing patients to sleep for periods of at least 2 hours to complete all sleep cycles before nursing interventions are carried out. Other factors that can lead to sleep deprivation are sedation and analgesia, stress and technology.
Sedation and analgesia is administered to patients in critical care and is an essential part of modern treatment (Milner & Gunning 2000). This is because many interventions are uncomfortable, distressing and frequently painful, and lying in a fixed position for prolonged periods of time may lead to backache and muscular discomfort. Using sedation and various analgesic preparations canalso lead to sleep deprivation (Milner & Gunning 2000) and efforts should be made to promote natural sleep. It is important, therefore, when using sedation to concentrate on the adequacy of sedation and analgesia and also to ensure that the patient is getting sufficient REM sleep.
Within the critical care setting, patients undergo many events that may be perceived as being stressful. All critically ill patients are generally stressed to a greater or lesser degree during their time in critical care, recognizing that each person has their own limit to what they can tolerate. In most cases, the critical care setting involves incidences and environments which the individual is not familiar with, contributing towards the stress. It is not only the unfamiliar environment and events that cause stress in patients in critical care settings, but pain, medical conditions and alterations in social behaviour, all of which patients may experience on the unit.
Promoting Rest and Sleep
Sleep can be defined as an altered state of consciousness from which a person can be aroused by stimuli of sufficient magnitude. The function of sleep is far from clear. It is considered as restorative and energy conserving, as protein synthesis and cell division occurs for the renewal of tissues, which takes place predominantly during the time devoted to rest and sleep. More importantly, sleep is needed to avoid the psychological problems resulting from inadequate sleep, which may hinder recovery. If the function of sleep is correctly assumed, then sleep deprivation could be considered as an added stressor, over and above those physical and emotional traumas already suffered.
During an average night’s sleep, individuals pass through four or five sleep cycles, each cycle lasting about 90–100 minutes. Within the sleep cycle, five successive stages have been defined by their distinctive characteristics. The first four stages of sleep are collectively named non-rapid eye movement (NREM) sleep and demonstrate a progressive increase in the depth of sleep. The final stage is called rapid eye movement (REM) sleep, or paradoxical sleep, and is associated with dreaming, learning and memory.
Perpetual awakening and sleep interruption have been associated with increased anxiety, irritability and disorientation, which may have a negative influence on recovery. In addition, total sleep deprivation for 48 hours can result in changes such as:
■ Behavioural irritability
■ Suspiciousness
■ Speech slurring
■ Minor visual misperceptions
■ Reduction in motivation, willingness to perform tasks which could include mobilization and other aspects of self-care
■ Lethargy, irritability, disorientation and confusion
■ Later on, delusions and paranoia manifestations
Strategies that minimize sleep interruptions in critically ill patients are:
■ Keeping noise levels to minimum, e.g. switch off suction equipment
■ Offering cotton wool balls to awake patients
■ Reassessing the need and value of continually interrupting patients’ sleep to perform observations and care
■ Centralizing of nursing duties so as to minimize touch and stimuli
■ Charting amount of uninterrupted sleep time per shift as evidence of stages of sleep
■ Communicating the patient’s need to sleep to other health care professionals
Critical care nurses should use their knowledge of:
■ The patient’s normal sleeping patterns
■ Supportive family relationships to optimize environment for sleep
■ Analgesic and sedative administration, according to the patient’s felt need and monitor events thereafter to promote sleep and rest.
Sound levels in a critical care setting impact negatively on the subjective quality of sleep. This is due to the fact that an individual does not enter the REM stage until 90 minutes after the sleep begins, and therefore if awakening occurs before the 90 minutes they do not enter REM sleep. Furthermore, critical illness and major surgery can disturb sleep but exogenous factors, including noise and nursing interventions, can also disturb sleep.
Recommendations for minimizing patients’ sleep interruptions are listed in Table 5.4.
|
■ Turn off maximum number of lights especially at night
■ Keep noise to a minimum (switch of suction equipment, reduce talking and whispering)
■ Offer cotton wool balls for patients’ ears
■ Continually reassess the need to interrupt patients’ sleep to perform observations
■ Perform as many nursing observations as possible together
■ Chart amount of uninterrupted sleep per shift and evidence of sleep stages
■ Communicate the patients’ need to sleep to other professionals
■ Use knowledge of:
● Patients’ normal sleeping patterns
● Supportive family relationships
To optimize environment for sleep
■ Administer analgesics and sedatives according to the patients’ felt need and monitor events.
|
Intensive Care Syndrome (ICU Syndrome)
Interestingly, any single cause of sensory alteration, such as sensory overload, sleep and sensory deprivation, or any combination of these, may lead to the general condition referred to as ICU syndrome. However, the processes which lead to ICU syndrome do incorporate additional factors. Such are the effects of ICU syndrome that patients often remember or perceive the process as both torturous and inhumane.
Amnesty International supports this view, and their literature clearly outlines some psychological torture techniques, including:
■ Sensory and sleep deprivation
■ Enforced stimuli – e.g. noise or light
■ Deprived people of food
■ Psychotropic and paralysing drugs
■ Immobility
■ Isolation
■ Reduced and forced communication
■ Re-regulation of the biological clock by changing routines.
Although patients receiving critical care, experience similar interventions to those mentioned above, it is proposed that essential and specialized critical care nursing skills can prevent the development of ICU syndrome. Furthermore, the move towards prevention is imperative, as even though short-term effects of ICU syndrome – such as hallucinations, disorientation, and tachycardia – are transient, they are nevertheless disturbing and prolonged with lasting psychological effects.
In comparison, long-term effects can delay recovery, lead to depression and in some instances develop personality changes. Therefore, essential nursing skills are crucial in reducing the ICU syndrome incidence. Consideration of these psychological aspects should play a part in everyday nursing care of every critically ill patient.
Music in Critical Care
Music therapy is an effective non-invasive intervention which can be readily implemented within a critical care setting. The important role of music therapy within the critical setting is to primarily reduce anxiety levels and promote stress management strategies within the clinical area. In addition, music has often been used as a distraction from unpleasant feelings and is believed to offer internal empowerment and confidence. However, the notion of music therapy is often not widely accepted within the highly technological area of critical care. This holistic approach to patient care is unfortunate as often the introduction of music within such a stressful and unfamiliar environment can result in positive physiological and psychological benefits – for example, lowering of blood pressure, heart rate, respiratory rate, pain and anxiety levels.
An individual’s response to music therapy is often linked to personal music selection and to whether they are able to relate to and familiarize themselves with the choice of music. Aimless blaring of music does not benefit patients but only the person who selected the music. This form of music therapy should not be promoted.
In the case of the unconscious patient, it is paramount that family members or friends are consulted and advised to bring in the patient’s choice of music.
Furthermore, music therapy is a non-pharmacological aspect of care which can be used as a supportive and complementary therapy to traditional and innovative treatments used.
Conscious patients should be given the opportunity to select their music preference and have periods of uninterrupted music listening throughout their day. This can promote a patient’s autonomy within a highly technological environment where often autonomy is unnecessarily forfeited.
Music is a holistic, non-invasive therapy within the critical care setting that undoubtedly promotes an individualized approach to patient care and should be promoted, when appropriate, in the care of the critically ill patient.
Always ask the patient or family member what music your patients like 
5.2. Palliative care in critical care
Caring for the Dying Patient
Palliative care is the active total care of those patients whose disease is not responsive to curative treatment, encompassing both the patients and their families/carers. Issues of death and dying are often not discussed with ease within a ward setting, but, within critical care, mortality is very high on the agenda. Therefore, health professionals who choose to work within a critical care setting develop skills and strategies for caring for the dying patient and their family.
Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. It emphasizes the care of people who have recently been diagnosed with advanced cancer and those who have other life-threatening diseases. Palliative care takes place in hospitals and is an integral part of all clinical practice. What it comprises has universal applicability and should be practised by all health care professionals.
‘The success of intensive care is not to be measured only by the statistics of survival, as though each death were a medical failure. It is to be measured by the quality of lives preserved or restored; and by the quality of the dying of those in whose interest it is to die; and by the quality of human relationships involved in each death.’ (Dunstan 1985)
Kinghorn & Gamlin (2001) state that palliative care:
■ Affirms life and regards death as a normal process
■ Neither hastens nor postpones death
■ Provides relief from pain and other distressing symptoms
■ Integrates the psychological and spiritual aspects of patient care
■ Offers a support system to help patients live as actively as possible until death.
Palliative care includes the control of pain and other symptoms, of psychological, social and spiritual problems and also recognizes the paramount importance of looking after those who are close to the patient. It is holistic and multifaceted. It emphasizes the care of those who have a life-threatening disease but are not imminently dying.
The key principles underpinning palliative care comprise:
■ Whole-person approach
■ Care, which encompasses both the patient and those who matter to them
■ Emphasis on open and sensitive communication, including adequate information about diagnosis and treatment options
■ Respect for patient and family autonomy and choice
■ Focus on quality of life, which includes good symptom control and nursing care.
What is so empowering about the care outlined above is that it can be adopted within a critical care setting as an integral part of clinical practice. The quality of palliative care in a critical care setting is of crucial importance, despite the rapid growth of hospices and home care schemes. Many critical care patients will be too ill to transfer to a hospice or home care scheme and therefore it is the role of critical care nurses to enhance palliative care in their setting and promote the notion of palliative care.
The role of the critical care nurse is central to the care of the dying patient and their family. It requires the utmost sensitivity and attention to detail. Sadly, many dying critical care patients are unaware of their surroundings or plight as their condition is often critical and it is then for the critical care nurse and doctors to offer:
■ Skilled, supportive care to patients and families
■ Sensitive nursing care
■ Reporting of presenting symptoms and monitoring of symptom control
■ Coordination of care between the multi-professional team.
Critical care has adopted palliative care strategies in caring for patients with life-threatening illnesses. Many patients in hospital or in the community are suffering from a chronic/non-malignant disease. These patients might be coming to the end of their illness and, in effect, dying. The majority of these patients die while still receiving active treatment. Yet, other interventions that will relieve some of the distressing symptoms – such as analgesia – may be withheld because of their side-effects and the view that they may hasten death. Palliative care is a vital and integral part of all clinical practice, whatever the illness or its stage.
Death in critical care is a common occurrence; the adult person cared for in critical care areas requires curative, life-prolonging therapies. Sometimes patients are admitted with an acute illness, unnecessarily, with a chronic disease or to relieve distressing symptoms. The common assumption is that a time needs to be determined when it is appropriate to shift from aggressive treatment to death-accepting care. This is, however, misleading, as both may have to exist simultaneously.
Deaths in Critical Care
The majority of critical care patients are admitted with the hope of reversing the immediate illness, avoiding a fatal outcome. Death is a common event in critical care – which treats a substantial number of patients who will ultimately die (Miller et al 2001). Critical care generally has more deaths than anywhere else (Nelson & Meier 1999). Mortality for mechanically ventilated patients typically ranges between 50 and 75% (Miller et al 2001).
Patients may be admitted:
■ For aggressive technological, invasive life-prolonging, curative interventions
■ Unnecessarily due to unknown patient’s wishes for invasive treatment when the condition is at a certain stage
■ As death is uncertain for chronic illnesses, they are treated right up to the end of life
■ For relief of painful/distressing symptoms that can occur before death
■ To alleviate other symptoms and to improve quality of life, e.g. cardiac surgery.
The Difficulties
Many very sick patients and their families and physicians see the patients as individuals in need of treatment, not as dying. It is often difficult to predict with any certainty when a patient in critical care is going to die, and treatment may last right up to the moment just prior to death. In critical care, there might be a need to sometimes change from a primarily curative focus to a primarily palliative approach. This is often misleading, as what is omitted is time to make decisions with regard to the patient’s wishes in the event of their coming to the end of life.
Often a period of time cannot be relied upon in which dying is evidently near which is long enough to allow those involved to embark upon planning for death.
The difficulty in predicting death
■ In CC the line between life and death is blurred
■ The course of the disease is unpredictable
■ The time of death cannot be predicted with any certainty
■ Death in CC patients is harder to predict than it is in cancer
The situation is unknown
■ The patient has not had the opportunity to make the necessary choices and come to terms with their own demise
■ The necessity for any aggressive interventions of life-support treatment
■ The justification of admission to CC in terms of provision of comfort, symptom control and/or quality of life
The differing perceptions/goals
■ CC nurses suggest that, ideally, patients who are expected to die should not be admitted to critical care
■ Conflicting goals
■ Palliative care perceived as the domain of hospices
■ Interventions are valued in CC – in PC too much is a barrier
The view of the patient
■ It is not known how welcome palliative care services would be for CC patients
■ The stigma and fear of cancer by patients with serious conditions is evident in the dialogue outlined in Connolly (2001)
■ ‘I may be ill but I do not need palliative care yet’
■ ‘There are people worse off than me, they mean people with cancer’
The decision to end life
There is sometimes confusion between:
■ Voluntary euthanasia
■ Assisted suicide
■ Pain control/withdrawal of life support.
There are concerns about:
■ Addiction, which is unwarranted
■ Limiting analgesia due to instability of condition
■ May hinder sensitivity to physical examination – GCS
■ Endurance of dyspnoea or an ETT.
Always involve the patient and their family in decision making 
Improving Palliative Care in Critical Care
There is a need to develop clinical practices that continue to seek recovery and survival at the same time as the possibility of dying. Patients and families need to be helped to face dying even while pursuing every reasonable opportunity to live longer. An integrated model of practice is available in which all patients receive palliative care along with curative care where appropriate:
■ Palliative care may gradually assume precedence when death is imminent
■ Both palliative and curative therapies may proceed in parallel until the patient either survives or succumbs
■ The next step is towards valuing a peaceful death, education and consultation with experts.
Obstacles to implementation
Unrealistic expectations about prognosis for some patients lead to different views with regard to palliative care. This is possibly due to patients in critical care:
■ having an impaired capacity to communicate their needs
■ being generally uninvolved in decisions
■ being given choices, but their preferences then subsequently being disregarded.
In addition, there is a limited number of suitably qualified nurses and there are competing demands on clinicians’ time. Therefore, time should be spent with family members reviewing the patient’s condition or prognosis, or discussing treatment or limitation(s) of treatment.
Research agenda:
■ The practice of forgoing life support
■ Nurses’ influence on the decision to withdraw or withhold limit life-support interventions
■ Inconsistencies in the withdrawal or withholding of mechanical ventilation
Issues concerning symptom management:
■ Pain control
■ Assessment tools
■ Perceptions/experiences of critical care nurses, patients, families
■ Clinically important outcomes that can be changed
Identifying areas of conflict:
■ Prolonging life or reducing complications
■ Improving symptom management for those critical care patients who may be suffering.
Fundamental Premise
It is not appropriate to restrict critical care for those patients whose care is generally palliative, as critically ill patients and their families may all benefit from the systematic, comprehensive and integrated approach to comfort that palliative care offers. Critical care nurses must proceed with an integral approach in the face of prognostic uncertainty and incorporate palliative care in the plan for all their critically ill patients.
It would be unusual for critical care and palliative care practitioners to be involved in tending and caring for the same patients. All critically ill patients should receive both palliative care and intensive care. This strategy will hopefully improve the quality of death and care of the dying in critical care, but also the quality of life and the care of those whose lives critical care’s extraordinary technology can prolong. Considering both critical care and palliative care maximizes the humanity and the efficacy of the treatments provided to patients with critical illness.
Persistent Vegetative State (PVS)
PVS implies a loss of forebrain function. In PVS the brain stem remains intact and therefore the patient may be deeply unconscious but will retain the ability to breathe spontaneously without the aid of a ventilator. Alternatively, the patient in PVS may appear to be awake but is unresponsive to stimulation and has a vacant look. PVS patients can survive for many years with good nursing care and adequate nutritional support. PVS is defined as: ‘an organic body capable of growth and development but devoid of sensation and thought’.
■ A vegetative state may be short-lived; the term PVS implies that the state has continued for more than 1 month
■ PVS implies that a prediction is being made – the patient will not recover
■ Cerebral function is lost, but sleep–wake cycles are present
■ The individual maintains BP and breathing without support and brain stem reflexes (pupillary, chewing, swallowing) are intact
■ The cardiovascular, gastrointestinal and renal functions are maintained, although the patient is doubly incontinent
■ No discrete localizing motor responses are present
■ The individual does not speak any comprehensible words or follow commands
Locked-In Syndrome
In locked-in syndrome the content of thought and the level of arousal are intact, but the efferent pathways are disrupted:
■ The individual cannot communicate either through speech or through body movement, but is fully conscious
■ The individual also has intact cognitive functions.
Brain Stem Death
The brain stem is collectively the mid-brain, pons and medulla oblongata. It is between the cerebrum and the spinal cord, the medulla oblongata being a direct upward continuation of the spinal cord. It is a small but vitally important area of the brain, responsible for reflex control of essential functions, e.g. cardiovascular and respiratory, sneezing, coughing, gagging all originate from the brain stem. In addition, all nervous impulses from the peripheral nervous system have to go through the brain stem to get to the higher centres for effect on the body. Ten of the 12 cranial nerves originate in the brain stem.
Involve the organ transplant team as soon as possible 
Brain stem death occurs when structural brain damage is so extensive that there is no potential for recovery, the brain can no longer maintain its own internal homeostasis and there is a complete loss of brain stem function.
■ It is the permanent loss of the function of the brain stem; this results in a combined, irreversible loss of the capacity for consciousness and breathing.
■ It is a diagnosis of death accepted by both the medical and legal profession.
■ The most frequent causes of brain stem death are intracranial haemorrhage, cerebral hypoxaemia and trauma.
Every patient fulfilling the criteria for brain stem death is a potential organ donor 
Brain stem death criteria
■ Age is irrelevant to whether patients are selected to be potential organ donors, but what is essential is that the patient’s clinical condition coupled with their blood results are within satisfactory parameters on the day of donation. This will be assessed by the relevant medical team.
■ That the medical and nursing staff have no known objections from the family, or coroner.
Tests for brain stem death
For brain stem death tests to take place the patient will be deeply unconscious and require ventilatory support. Prior to commencement of brain stem tests, the patient must meet certain preconditions. These preconditions are designed to ensure that the patient’s unconscious state is caused by irreversible structural brain damage and that their current status has not been influenced by other factors – such as the use of muscle relaxants or an existing metabolic disorder.
■ Normal blood gases, urea and creatinine, potassium (K +) and sodium (Na +), temperature
■ No sedation, analgesia or muscle relaxants for 24–48 hours (or longer)
■ The patient has a specific condition that causes brain stem death
■ The diagnosis of brain stem death is made by two independent and suitably qualified doctors
■ Two sets of tests are performed
■ The tests have been designed to look at the most basic brain stem functions and assess their responses.
The tests consist of the following:
Eyes Pupils do not react to light; eyelids do not move when the corneas are stimulated; there is no movement of the eyes when ice cold water is injected in the ear canals
Cranial nerves There is no motor response within the cranial nerve distribution to stimulation of any somatic area
Oral There is no gag or cough response to tracheal suction
Respiratory There is no respiratory effort when ventilation is discontinued, even when monitored arterial carbon dioxide (PaO 2) exceeds the threshold for respiratory stimulation
If the patient is brain stem dead there will be:
■ No vestibulo-occular reflex – 20 ml of ice-cold water is slowly injected into each ear: there will be no movement of the eyes in response.
■ No corneal reflex – if the cornea is stroked with a piece of gauze the patient will not blink.
■ No brain stem reflexes:
● No pupil response to light
● No blinking or grimacing
● No gagging or cough reflex
● No motor response to painful stimuli.
■ No stimulation of breathing after a period of removal from the ventilator (pre-oxygenate with 100% to prevent hypoxia); if carbon dioxide has risen above 6.65 kPa it can be assumed that no respiratory effort has taken place during the period of discontinuation of ventilation.
Two doctors, a consultant in charge of the patient’s case and a second doctor of senior registrar status, carry out the tests either separately or together to make the diagnosis of brain stem death. Once brain stem death has been confirmed, the possibility of organ harvest for transplantation should be considered. If a patient is going to become an organ donor, it is necessary to continue ventilation until organ retrieval takes place.
All brain stem tests are carried out twice as a matter of law 
Potential Organ Donation
Many patients in the UK die or suffer prolonged dependency because of a lack of organs for transplantation. Therefore, if a young or middle-aged patient with a fatal condition has healthy kidneys, liver, heart or corneas, it might be relevant to discuss organ donation with the medical team. Suitable organ donors include:
■ Victims of severe head injury
■ Severe subarachnoid or intracerebral haemorrhage
■ In the case of corneal donation, any young patient with healthy eyes or a rapidly fatal illness.
Patients who are unsuitable for organ donation are:
■ Where brain death criteria fulfilment is uncertain
■ Those over 60
■ Where there has been significant hypotension or a hypoxic episode during a fatal injury
■ Where there is a history of previous disease affecting the potential donor (e.g. hypertension, diabetes, hepatitis B, alcohol abuse)
■ Where the patient has received drugs or other treatments which might have affected the organs to be transplanted
■ In the case of the kidneys, where there is persistent oliguria
Clinical management of the potential organ donor
Following brain stem death diagnosis, significant pathophysiological changes will occur which may lead to complications and this may in turn lead to potential damage to the donor’s organs. Once a family has made the decision to donate their family member’s organs, it is the duty of the medical and nursing team to ensure the donor’s organs have the best possible outcome.
Common complications of patients who have been diagnosed as brain stem dead include:
Routine monitoring of a brain stem dead patient should include:
■ ECG
■ Arterial blood pressure
■ Oxygen saturation
■ Temperature
■ Central venous pressure
■ Fluid balance
■ Arterial blood gases
■ Pathology, e.g. biochemistry, haematology
Care of the donor and family
The physiological manifestations of brain stem death are complex. Their effects include profound hypotension, cardiac arrhythmias, hypothermia, pulmonary oedema, diabetes insipidus and clotting abnormalities. Maintenance of a patient’s status quo during this time can often prove to be difficult and multifaceted. Furthermore, organ donations are sometimes lost because of a rapid deterioration in the donor’s clinical condition.
Potential donors need intensive nursing and complex medical care once brain stem death has been confirmed. Their combined care will ensure that the organs are maintained at a high quality pre-donation and thus ensure that the family’s wish for donation is fulfilled. It is important to note that the longer the time after the diagnosis of brain stem death, the more problems may arise in the patient’s clinical condition and medical management.
Often family members of potential donors choose when and where they feel ready to say their goodbyes to their loved one. Some family members leave shortly after brain stem tests have been performed; others may stay until they go to theatre. This is managed on an individual basis and intense support and compassion is offered by the intensive care and organ transplant team to help family members through this time.
The transplant recipient
Organ transplantation is the treatment of choice for end-stage organ failure. Transplant recipients who may benefit from organ transplantation fall into the following categories:
Allocation of organs and retrieval
Prior to the retrieval of an organ, the organ must have been accepted by a transplant centre for a suitable waiting list patient. All organs are primarily offered to the local zonal centre. If they do not have any suitable recipients, the organ will then be offered to each of the country’s other transplant centres. If none of the UK centres accepts the organ it is then offered to a European centre. This is a reciprocal agreement and it is important to note that the UK imports more organs than it exports.
In the event that the organ cannot be placed with a potential organ recipient, then the organ will not be retrieved.
Legal issues
If the death would normally have been referred to the Coroner, then permission must be sought before organ donation can be performed. It is unusual for a Coroner to refuse all donations but they have specific objections to certain organs and/or tissues being removed. On rare occasions, a Home Office pathologist may attend an organ retrieval.
It is unnecessary for family members to sign a formal document but often the organ transplant coordinator will document their lack of objection within the patient’s medical notes.
All potential organ donors will be required to have a virology screen to exclude HIV and hepatitis B and C. Furthermore, the organ transplant coordinator is required to ask family members about the patient’s social behaviour so that they have a detailed history of the patient’s past. Once again, this information will be documented within the patient’s medical notes.
What to do After the Patient has Died
■ The family should be able to spend as much time with their loved one as they want; this should not exclude children
■ The ICU doctor will be called to certify the death
■ Date and time of death are recorded in the patient’s notes
■ Inform surrounding patients/visitors of the patient’s death
Last Offices
This is the care given to a deceased patient, which is focused on fulfilling religious and cultural beliefs as well as health and safety and legal requirements. It should be remembered that this is the final demonstration of respectful, sensitive care given to the patient.
■ Individual preferences should be determined and patients should be encouraged to talk about how they wish to be treated upon dying. In the case of the unconscious patient in ICU, the bedside nurse should consult the family members.
■ Catheters and other appliances should be removed (except in a Coroner’s case where local guidance should be sought) and any dentures replaced.
■ Relatives should be asked whether jewellery should be left on or taken off the patient.
■ Wash the patient unless requested not to do so for religious/cultural reasons. It may not be acceptable for the bedside nurse to undertake this task – or sometimes a relative or spouse may want to help.
■ The body is dressed in a shroud or other garment (refer to local policy).
■ Local policy should be followed with the identification of the body and their property identified and stored.
■ The patient is then wrapped in a sheet and the sheet secured with tape.
■ A notification of death card is taped outside the sheet (refer to local policy).
■ Request the portering staff to remove the body.
■ Screen off appropriate areas from view of other patients and visitors to ICU when the body is being removed.
■ Update nursing records, transfer property and patient records to appropriate administrative staff.
■ Give bereaved family members an information booklet regarding contacting hospital about viewing the body, collection of death certificate etc.
Refer the family members to the patient affairs team for ongoing support after the patient has left ICU 
Emotional Care
Emotional care relies on openness and sharing the truth about the illness. Often the conscious critical care patient will feel loss and grief for the lack of:
■ Independence
■ Self esteem
■ Status, job and income
■ Role and relationships.
■ A future
Spiritual Care
Spiritual care gives the patient and family an opportunity to examine the impact of the illness on their belief systems. They need to be given the opportunity to ask questions:
■ Why me/us?
■ Why now?
■ What have I done to deserve this? is a question that the dying may ask themselves and others.
As a critical care nurse, staying with this sort of spiritual pain and not being afraid of the questions asked by the patient or their family is a helpful and sensitive response. Offering the support of a relevant religious figure may not be appropriate for all, but listening and being present will be appreciated.
Cultural Diversity
Making nursing practice relevant to people of many cultures is a constant challenge to the critical care nurse (Table 5.5). Cultures differ with regard to:
| Religion | Last rites |
|---|---|
| Baha’i |
■ Treat body with great respect after death as believe in afterlife.
■ Routine last rites are appropriate.
■ Cremation is not permitted.
■ Burial should take place within an hour’s journey from place of death.
|
| Buddhism |
■ Believe in rebirth after death, therefore state of mind at moment of death is important in determining the state of rebirth.
■ Some form of chanting may be used to influence the state of mind at death so that it may be peaceful.
■ May not wish to have sedatives or pain-killing drugs administered at this time.
■ Peace and quiet for meditation and visits from other Buddhists are appreciated.
■ If Buddhists are not in attendance, then a Buddhist minister should be informed of the death as soon as possible. Routine last rites are appropriate.
■ Cremation is preferred.
|
| Christian Science | There are no rituals to be performed. |
| Christianity
■ Anglicans
■ Roman Catholics
■ Protestant
■ United Reform
■ Methodist
|
Routine last rites are appropriate for all Christians. |
| Hinduism |
■ Want to die at home. This has religious significance and death in hospital can cause great distress.
■ May wish to call in a Hindu priest to read from the Hindu holy books and to perform holy rites. These may include tying a thread around the wrist or neck, sprinkling the person with water from the Ganges, or placing a sacred tulsi leaf in their mouth.
■ Their belief in cremation and body being returned to nature may involve a dying person asking to be placed on the floor during their last moments.
|
| Islam |
■ May wish to sit or lie with their face towards Mecca. Moving the bed to make this possible is appreciated.
■ Family may recite prayers around the bed. If no family are available, any practising Muslim can assist.
■ May wish the imam (religious leader) to visit.
■ After death, the body should not be touched by non-Muslims. Health workers should wear disposable gloves to touch body.
■ The body should be prepared according to the wishes of the family.
■ If family are not available, the following procedure should be followed:
Turn the head towards the right shoulder before rigor mortis begins. This is so that the body can be buried with their face towards Mecca. Do not wash the body, or cut hair or nails.
■ Wrap the body in a plain white sheet.
■ Muslims are always buried, never cremated.
■ The body will be ritually washed by the family and Muslim undertakers before burial.
■ Funerals take place as soon as practicable, as delay can cause distress. If a delay is unavoidable, explain the reasons carefully to the relatives.
■ If the death has to be reported to the Coroner, they should be informed that the patient is a Muslim and be asked if the procedures can take place as soon as possible.
■ If the family wish to view the body, staff should ask the mortician to ensure that the room is free of any religious symbols.
■ Post mortems are forbidden unless ordered by the Coroner, in which case the reasons for it must be clearly explained to the family.
■ Family may request that organs removed should be returned to the body after examination.
|
| Jehovah’s Witness |
■ No special rituals for the dying but they will usually appreciate a visit from one of the Elders of their faith.
■ Routine last rites are not appropriate.
|
| Judaism |
■ In some cases the son or nearest relative, if present, may wish to close the eyes and mouth.
■ The body should be handled as little as possible by non-Jews.
■ Depending on the sex of the patient, a fellow male or female washes and prepares the body for burial. Usually three members of the community are present. Traditional Jews will arrange for this to be done by the Jewish Burial Society.
■ If, however, members of the family are not present, most non-Orthodox Jews would accept the usual washing and last rites performed by hospital staff.
■ The body should be covered with a clean white sheet.
■ The family may wish for the body to be placed with the feet pointing towards the doorway and to light a candle.
■ Some Orthodox Jewish groups may wish to appoint someone to stay with the body ‘watcher’ from the time of death to the burial, which usually takes place within 24 hours.
■ If family wish to view the body, staff should ask the mortician to ensure that the room is free of any religious symbols.
■ If the death has to be reported to the Coroner, they should be informed that the patient is Jewish and be asked if the procedures can take place as soon as possible.
■ Orthodox Jews are always buried but non-Orthodox Jews allow cremation.
■ The funeral has to take place as soon as possible.
|
| Mormons |
■ There are no rituals for the dying, but spiritual contact is important.
■ The church has ‘home teachers’ who offer support and care by visiting church members in hospital.
■ Routine last rites are appropriate
■ The sacred garment, if worn, must be replaced on the body following the last rites.
■ Church burial is preferred, although cremation is not forbidden.
|
| Rastafarianism |
■ Visiting the sick is important and visits are often made in groups. Family members may wish to pray at the bedside.
■ Apart from this, there are no rites or rituals, before or after death.
■ Routine last rites are appropriate.
■ Burial is preferred.
|
| Sikhism |
■ May receive comfort from reciting hymns from the Guru Granth Sahib, the Sikh holy book. Family or any practising Sikh may help with this.
■ Generally, Sikhs are happy for non-Sikhs to attend to the body. However, many families will wish to wash and lay out the body themselves.
■ If members of the family are not available, in addition to the normal last rites hair or beard should be left intact and not trimmed.
■ If the family wish to view the body, staff should ask the mortician to ensure that the room is free of all religious symbols.
■ Apart from stillbirths and neonates, who may be buried, Sikhs are always cremated. This should take place as soon as possible.
■ There are no objections to post mortem examinations.
|
Social Needs
The critical care nurse needs to ensure that patients and families have adequate information regarding the benefits to which they may be entitled. These include:
■ Housing benefits
■ Income support
■ Council tax
■ Drawing up a will.
Often referral to the PALS group or palliative care team is beneficial.
Bereavement in Critical Care
Over the last decade, care of critical care patients’ relatives has increasingly been seen to be of growing importance in the holistic approach to nursing care. Critical care nurses working within this acute setting need to have an understanding of bereavement and how to recognize abnormal grief and to refer to specialist members for guidance and assistance with aiding bereaved family members.
Historically, critical care professionals focused primarily on:
■ Close patient assessment
■ Obtaining observations
■ Close monitoring for complications
■ Management of technology.
Less emphasis was placed on the nurse’s perception of what was deemed important to relieve anxieties experienced by bereaved family members in critical care. However, today it can said that the bedside nurse’s perceptions play an important role in caring for the bereaved in critical care.
The concept of bereavement is a subject area that many choose not to explore, or understand. The death of a family member can evoke many feelings of denial, guilt, anger and hopelessness. Furthermore, the admission of a ‘loved one’ to critical care can seriously disrupt the dynamics of a family and close friends, and families’ needs on a cognitive, emotional and personal level are very high.
Grief is not an illness; it is a pattern of reactions that take place while the person adjusts to the death of their loved one. The critical care nurse is not expected to be a bereavement counsellor but to be there for the family member before the patient has died. A well managed death will help with the emotional health of a family. Listening and understanding imply concern and care while acknowledgement of their pain and sorrow may also help family members move forward.
Recognizing abnormal grief:
■ Are grief reactions prolonged, excessive and seemingly incapable of resolution?
■ Are grief reactions absent?
■ Has grief been displaced or masked, e.g. by illness, drugs, alcohol or overwork?
■ Was the relationship with the deceased person particularly ambivalent or dependent?
Caring for Relatives
Involving relatives in care
Commitment to individualized patient care requires considerable emotional involvement and commitment from the critical care nurses. If critical care nurses involved and supported patient families in their care, this may alleviate possible feelings of detachment, isolation and self worth.
Involving family members in the nursing care of critical care patients can sometimes be seen as a major challenge for nurses, in that they are not familiar with letting family members assist with nursing care (Table 5.6). However, what critical care nurses must ask themselves is: is it unreasonable to let a loved one assist with basic care when they have been together for a significant period?
| Molter’s (1979) study | Daley’s (1984) study |
|---|---|
|
■ To feel that there is hope.
■ To feel that hospital personnel care about the patient.
■ To have a waiting room near the patient.
■ To be called if the condition changes.
■ To be told of the patient’s prognosis.
|
■ To know the probable outcome.
■ To know the treatment being given to the patient.
■ To have staff explain the equipment utilized.
■ To be called at home if condition changes.
■ To know the best care is being given.
|
Nurses’ fears are often associated with not wanting to be watched or assessed when at work by family members. However, care in critical care is often extended to family members – involving them in their loved one’s care can often alleviate both their and their loved one’s anxieties. In addition, this can prevent the development of ICU syndrome and thus improve recovery.
Visiting in critical care
The need for family members to visit their loved ones when they have been admitted into the critical care unit has long been identified as a requirement for maintaining family unity and closeness. Few topics have generated as much controversy as visitation policies in critical care units.
The visitation policy of critical care units has been liberalized in recent years. This change has been progressive in seeing critical units move from a restricted to an open visiting policy. The belief is that open visiting generates positive effects on patients, family and nurses. However, it cannot be ignored that within critical care worldwide there are still two forms of visiting strategy within critical care. There is the liberalized visiting policy, which is open visiting, and then there is the restricted policy, which imposes a more structured and rigid visiting policy.
Familiarize yourself with your unit’s visiting hours and plan your patient’s care around the set times 
Critical care literature has highlighted the importance of visitation in critical care units and its beneficial effects on patients and their families alike. However, nurses’ attitudes and beliefs about visitation have not always correlated with those of patients and their families, nor do actual visitation practices correlate with the critical care unit’s written local policy.
Factors that influence visitation practices within critical care are:
■ The patient’s need for rest
■ Nurses’ workload
■ Doctors’ ward rounds
■ The beneficial effects of visitation on patients
■ The patient’s condition
■ Rapport between nurse, patient and family member.
In comparing restricted versus open visitation, restricted hours were perceived to:
■ Decrease noise
■ Promote patient’s rest
and open visitation practices were perceived to:
■ Beneficially affect the patient
■ Beneficially affect the patient’s family
■ Decrease the anxieties of patient and family.
In evaluating the ideal visitation policy that should be implemented within a critical care environment, the main factors that should be taken into accounts are:
■ Restrict the number of visitors allowed at any one time
■ Restriction on hours that patient has visitors
■ Allow visits by children
■ That there should be no restriction on visitation by immediate family members, but they should be aware of the patient’s condition and take this into account when visiting.
Interestingly, the literature suggests that critical care nurses do not in fact restrict visitation, regardless of whether restrictive policies are in place. Most nurses base their visitation decisions on the needs of the patient and the nurse.
Sudden Death
Sudden death refers to any patient who has died unexpectedly from accident or illness. The area of bereavement is vast, and sudden death itself covers many modes of death. Sudden death includes suicide, murder, accident, illness, ‘cot death’ or sudden infant death. Sudden death(s) robs the relatives of any preparatory grief. The relatives left behind may require more support and counselling than those who have known for some time that their relative is dying. Emergency department deaths are more likely to be unexpected by the family.
The needs of survivors bereaved by sudden and unexpected death
Death and loss are an unavoidable part of life. As critical care nurse practitioners, responding to death is frequently encountered, yet the deceased is not the only ‘patient’: those left behind should now become the focus of our care. When survivors are notified of a death their grief begins. People may show no manifestations of grief at the time of death but experience normal grief prior to death occurring (McInroy & Edwards 2002).
With sudden death in mind it is imperative that critical care nurses are aware of a family’s distress, acknowledge this and have an understanding of the needs of those who are suddenly bereaved. After a sudden death families’ experiences may have a powerful effect on their process of grieving and professionals’ responses to them play a valuable part in the crisis.
■ Viewing the body – equipment should if possible not be in view and there should be privacy and a member of staff staying with them in the room being supportive and compassionate.
■ Signing of papers is necessary but not an initial priority.
■ Meeting the family immediately upon arrival in the critical care area; a member of hospital personnel should accompany the family, offer support, give information and provide a separate room for them to wait.
■ Knowing loved one’s condition – survivors need accurate information about death and to talk about their experiences.
■ Breaking bad news of the death of a family’s relative is one of the most difficult and sensitive things a critical care nurse has to learn to do.
■ Poor communication skills can leave families confused and angry at the way news was broken.
■ Families need to be reassured that all appropriate actions were taken to save their loved one.
■ Offering sedation is the least helpful because it inhibits the bereaved person’s expressions of grief.
■ Consistency with usage of words – critical care staff often use a variety of words/language to describe a relative’s notification of death.
■ Explanations should be clear of medical jargon, gentle and sincere.
■ The word ‘dead’ should be used, instead of terms such as ‘passed away’.
■ The word ‘dead’ or ‘died’ can help the bereaved person not to deny the death and leads to less confusion.
Encourage family members to view the deceased as this aids the process of closure and promotes progress in the grieving process 
Follow-Up Clinics
Until recently, critical care environments paid little attention to the fate of their patients. A discharge of a patient from critical care marked a successful critical care stay and nursing and medical focus was drawn towards the next critical care patient and their family. However, over the last decade, critical care has seen the creation of nurse- and physician-led follow-up clinics and what seems to be an interest in obtaining patient and family insight into critical care.
Follow-up clinics are useful and an integral part of care for bereaved relatives. Support workers in critical care can telephone relatives 4–5 days after the death and ask how they were coping; this gives survivors an opportunity to ask any further questions and to talk. Telephone follow-up is considered a useful way of contacting relatives to help with practical advice, show concern and identify those who may have needed referral to other agencies.
Although the primary purpose of follow-up clinics is to gain an insight into patient and family members’ perspectives of critical care experiences, there also needs to be an understanding of quality of life and the effects of critical care treatments on the individual have also proven invaluable in questioning the ethical and moral aspect of critical care.
There are no hard or fast rules as to when the follow-up clinics should commence, but interestingly some institutions commence their follow-up service immediately after critical care discharge and often visit the longer stay patient (>4 days) on the ward. This can prove beneficial in bridging the large void that critical care patients often experience when they become accustomed to 1:1 nursing in the critical care environment in comparison to ward care nursing.
Upon discharge from hospital, critical care patients are invited to attend nurse- or doctor-led outpatient clinics. The frequency of attendance varies locally, often patients are invited in periods of 2-, 4-, 6- and then 12-monthly intervals so that the critical care team can advise or assist with any physiological or psychological ailments or concerns.
Follow-up clinics provide an invaluable service for patients and families after critical care stay and assist critical care nurses and clinicians alike in improving the quality of care and service. It also proves to act as a platform to initiate changes in practice.
The Cost of Caring to the Critical Care Nurse
Working closely to dying patients can cause emotional distress for the critical care nurse and can be painful. Nurses working within a critical care environment need adequate support systems in both their professional and personal lives. It is imperative that all staff members working in critical care realize their needs following the death of a patient.
You must always remember to look after yourself 
There is a need for continuous up-dating and training on breaking bad news and have a shared professional goal with reflections, discussions and feedback about the caring aspect of critical care work. It also highlighted the need for a support group for staff. Death education is important, a topic which is difficult to teach but issues need to be explored. Training should include knowledge about death, grief and bereavement, communication skills either at breaking bad news or dealing with discomfort felt by staff when they were dealing with relatives showing extreme emotions.
The critical care nurse needs to recognise internal signs of stress and develop strategies for coping:
■ Spacing for holidays and time off is important to recharge lost energy
■ Continuous training and education for mental stimulation
■ Take time to debrief with colleagues
■ Concise written recording can be therapeutic and assist in the letting go of particularly stressful situation
■ Keeping a reflective diary
Being honest and sharing vulnerabilities will help a team relate and work well together.
5.3. Professional practice issues
Consent
Consent can be defined as the ‘voluntary and continuing permission of the patient to receive a particular treatment based on an adequate knowledge of the purpose, nature and likely risks of the treatment, including likelihood of its success and alternatives to it. Permission given under any unfair or undue pressure is not consent’.
Consent criteria – (Re C (Adult Refusal of Treatment) [1994])
In order for consent to be obtained lawfully, the patient must:
■ Be competent
■ Be conscious
■ Be mentally capable
■ Have the relevant information to give consent
■ Have understood information given
■ Have given consent voluntarily
If a patient is unconscious then a family member cannot consent on their behalf 
Battery and medical law
In the absence of consent all, or almost all, medical treatment and all surgical treatment of an adult is unlawful, however beneficial such treatment might be.
Apart from the criteria outlined above, three other important areas control the law on consent; these are:
■ Case law, whereby previous cases taken to court set precedence on future cases, e.g. Sidaway v Bethlem [1985]
■ Statute law, whereby the government passes a law which governs the area concerned, e.g. Family Law Reform Act 1969, section 8
■ Rules, where professional codes of conduct, guidelines and protocols should be followed in practice; this is referred to as ‘quasi law’.
Types of consent
There are different types of consent used within the health care setting which allow treatment to be undertaken without there being an issue of ‘unlawful touching’. These are:
■ Express consent. This is usually written, although there is no legal requirement for this to be so – only governmental and employment guidelines advise that this should be written.
■ Implied consent. This usually takes the form of action undertaken by the patient, e.g. holds out an arm to have blood taken.
■ Consent forms. This is particularly so for people detained under the Mental Health Act 1983.
All critical care practitioners must familiarize themselves with the different types of consent as this is fundamental to your patient’s care 
Different categories to take into account when obtaining consent:
■ Is the patient conscious and are they able to consent for themselves?
■ Adults can refuse treatment at any time before and during the procedure.
■ Is the patient temporarily or permanently incapacitated?
■ When an adult has an impaired capacity, the decision to refuse treatment is based on the patient’s rights versus the protection of their best interest.
■ Is there an advance directive?
Advance directives
An advanced decision to refuse treatment is governed by statutory rules. This legal framework gives clear safeguards that confirm the notion that people may make a decision in advance to refuse treatment even if they should go on to lose their mental capacity in the future. Furthermore, the Act clearly states that an advanced decision will have no application in an emergency situation to sustain life unless strict formalities have been followed.
These formalities require that the decision must:
■ be in writing
■ be signed and dated
■ be witnessed
■ contain an express statement that the decision stands ‘even if life is at risk’.
If you are unsure about what category your patient falls into, or what their current position might be, then consult your clinical governance department 
Informed consent in the UK
There is no such doctrine of informed consent in the UK; however, the medical standard of what information should be given is set out in the landmark case of Bolam [1957]. It is also important to note that English law states that it is a doctor’s ‘therapeutic privilege’ to withhold information from a patient during the process of obtaining consent if the doctor deems it to be detrimental to the mental or physical health of the patient.
Non-disclosure of risk
The law states that patients must be informed of risks associated with their treatment; the leading case is Sidaway v Bethlem [1985] whereby the doctors were at fault for not disclosing the material risks associated with a particular procedure. This case has been recently challenged in Chester v Afshar [2002] where the courts upheld that not only must the clinician disclose risks but they must offer alternative treatments.
Good practice states that:
■ Obtaining consent should not be seen as obtaining a signature but should be viewed as a process
■ Doctors should have an understanding of patients’ perceptions
■ Clinicians should document, document, document
■ Consent should be written and translated, if necessary
■ Clinicians should review their consent-obtaining practices
■ Clinicians should give time to their patients/families to ask questions and discuss the procedure
■ There should be enhanced communication links between the multidisciplinary team to aid effective consent.
Mental Capacity Act 2005
This Act governs the way in which decisions are made on behalf of people lacking mental capacity. It also includes provisions for advanced decisions to refuse treatment. It also sets out a framework in which health care professionals can assess the best interest of a patient who lacks capacity, together with provisions relating to medical research. In addition, the Act now makes it a criminal offence to ill treat or neglect a person who lacks mental capacity and such a person may be liable to a term of 5 years imprisonment.
This Act is underpinned by a set of 5 key principles set out in section 1. These are that:
1. There is a presumption of capacity and that every adult has the right to make his or her own decisions and they must be assumed to have capacity
2. The rights of individuals are to be supported to make own decisions, therefore all appropriate assistance must be given before anyone may conclude that they cannot make their own decision
3. Individuals retain the right to make decisions even if eccentric or unwise
4. The ‘best interest’ notion prevails for incapacitated individuals
5. Only the least restrictive intervention should be performed on an incapacitated individual to minimize their infringement of basic rights and freedoms.
The Act also sets out clear parameters for research. These are that:
Research involving incapacitated persons may be lawfully carried out if an appropriate body (normally research ethics committee) agrees that the research is safe, relates to the person’s condition and cannot be undertaken as effectively on people who have mental capacity. If the research is to enhance new scientific knowledge it must be of minimal risk to that individual and carried out with minimal interference or intrusion on their rights.
Carers or nominated third parties must be consulted and agree that the individual concerned would want to join an approved research project.
Applications to the High Court
Applications to the High Court are made by hospitals when there is a:
■ Serious uncertainty about a patient’s capacity to consent to treatment, or their best interest is being jeopardized
■ Serious unresolved disagreement between a patient’s family and health professionals
The Human Rights Act 1998
This Act highlights the issues concerning patient’s human rights and the issues faced when they refuse treatment. This is outlined in the Acts below.
■ Article 3 – opposes any degrading treatment which is against the patient’s will
■ Article 8 – upholds the respect for private life and therefore opposes non-consensual treatment
■ Article 9 – reinforces freedom of religion and objects to a patient’s belief being ignored in order to give non-consensual treatment
Professional Issues
Accountability
Accountability within a critical care setting can be exercised in a number of ways. The NMC (see Relevant Websites) highlighted the following principles.
■ The interests of the critically ill patient are paramount.
■ Professional accountability must be exercised in such a manner as to ensure that the interests of the critically ill patients are respected and are not overridden by those of professionals or members of the multidisciplinary team.
■ The notion of accountability requires the practitioner to seek, achieve and maintain a high standard of care delivery, at all times.
■ Advocacy on behalf of the critically ill patient is an essential feature of exercising professional accountability on behalf of their patient’s care; this is especially so if the patient is unconscious.
■ The role of other persons who are involved in the delivery of healthcare to critically ill patients must be recognized, respected and honoured provided that the interest of patients is paramount.
■ Public trust and confidence in the professional workforce must be upheld, and professionals must be seen to exercise their accountability in accordance with their code of professional conduct.
Responsibility
Responsibility, within a critical care setting, takes three major forms:
■ Responsibility for self is often captured in a professional practice code (www.nmc-uk.org). Wilful failure to adhere to these responsibilities may result in legal action to exclude the individual from the right to practise.
■ Responsibility for others is a far more complex issue which varies according to position, degree of authority delegated and the nature of accountability to be exercised. It includes:
■ Concern for the safety of all in a shared working environment
■ The need to be explicit with all colleagues about authority and accountability issues as they affect both oneself and others
■ Working only within your scope of knowledge and ability
■ Professional responsibility entails the legitimate freedom to choose one course of action or intervention over another, combined with the responsibility for making correct choices in each circumstance.
■ Professional responsibility, in particular, is an important issue as all professionals can be required to provide a service in areas in which they are not adequately prepared. This can occur because of work pressure and service pressure whereby funding restraints may require staff to work within another area. Being open about one’s limitations must not be seen as a weakness but rather a key indicator of a mature and caring practitioner.
Autonomy
The notion of autonomy relates to the independence of action, meaning that one can perform one’s total professional function on the basis of one’s knowledge and judgment. It consists of making decisions and acting upon them. Furthermore, to be autonomous, one must be accountable. Autonomy is defined as:
■ Self rule
■ A patient is free to make up their mind and act on their decisions
■ A patient has the right to be given all the information required to make an informed, autonomous decision about care or treatment received or being offered
■ Ethical principles of self-determination and self-governance with concomitant responsibility for one’s actions.
The ethical principle is important as no one has the legal right to impose their views upon another. Furthermore, everyone has the right to determine their actions and fate. By adopting a legal stance, one must realize that all surgical and medical interventions and delivery of nursing care are permitted because a patient has consented them to be carried out. The principle of autonomy underlines concerns about informed consent for surgical, medical and nursing interventions. All patients have the right to be respected as autonomous beings capable of making informed decisions for themselves and take responsibility for their own actions. Therefore, patients have the right to be kept informed of their condition and options available to them while undergoing treatment. Informed consent therefore consists of:
■ The patient’s right to know
■ The patient’s right to refuse treatment
In addition, patients have the fundamental right to give or withhold consent before an examination or treatment. The following must be borne in mind when giving information:
■ Is something being withheld so that the patient makes the decision required by the doctor/nurse?
■ If all the information were given, would the patient refuse treatment?
If information is withheld in order to ascertain consent to treatment, then truth telling and honesty have been compromised; this places patient autonomy under threat.
Arguably, most consent is implied, such as a patient holding out an arm for blood to be taken; however, one cannot rely on this form of consent. In today’s legal climate, it is important that all health care professionals who are able to obtain patient consent do so in an informed manner or they may face the legal repercussions if they fail to do so.
Ethics and Morality
Whether we are addressing nursing, medical or health care ethics, the critical care environment is likely to rate quite highly in terms of an ethical minefield. The arrival of ‘life-support’ machinery and the initial development of organ transplantation practices has prompted healthcare professionals to support their practices by developing strategies which allow, for example, brain stem death to be diagnosed correctly and prevent the misdiagnosis of brain stem death.
One of the reasons that nursing ethics in a critical care setting might be thought to be different from nursing ethics in a wider sense is the tendency to consider ethics in terms of dilemmas. Critical care dilemmas are often emphasized by the fact that the person concerned is frequently incapable of expressing a view because of their unconscious state.
Nurses and Morality
Self-development is an important area of morality for those in the caring profession, and it is the more important in that its neglect can seem a virtue. It is quite common for professional carers to live a life of devotion to their patients, and as a result their own lives become empty and impoverished.
The duty of self-development can also be justified in terms of its benefits to other people. Since so much of the success of a nurse depends on a patient’s perception of the helper, it is vital that the nurse be seen primarily as a human being who happens to be a nurse, and not vice versa. Furthermore, most nursing judgements are imbued with a moral element and so it is important that the nurse is a morally developed person who happens to follow a given professional pathway.
Privacy and Dignity of the Critical Care Patient
Critical care patients are often totally dependent on the nurse looking after them for all their needs. Many of these needs are extremely personal and it therefore falls to the bedside nurse to ensure that privacy and dignity are maintained as far as possible.
As healthcare professionals, we should all be skilled in maintaining the dignity of patients who are unable to do so for themselves but it is important to remember that we are obliged to protect their privacy as well.
Maintaining privacy goes beyond simply ensuring that the patient is not visible to other visitors, patients and staff when a procedure is carried out. It is also about the information that we give out to those who enquire and the conversations that we hold about a patient in areas where what we say might be overheard.
As health care professionals, we are governed by our Professional, Legal, Employers and Personal Code of Conduct to maintain our patient’s confidentiality at all times. The policing of confidentiality can often be difficult when caring for critically ill patients; they are often unconscious and thus unable to explain whom they would wish information to be disclosed to in what detail. Despite this dilemma, we are obliged to protect the patient’s confidentiality as a first principle.
When dealing with privacy issues in critical care, it is important that you follow the guidelines:
■ Except in exceptional circumstances, never give specific information about a patient’s condition over the telephone. Generally, the decision about what constitutes exceptional circumstances will need to be made by senior members of the critical care team.
■ Never give information about a diagnosis or potential diagnosis unless you know that the person enquiring has already been told.
■ Always remember that your conversations in the critical care environment are likely to be overheard by others. Never discuss issues that would compromise a patient’s privacy or dignity where they may be overheard.
Confidentiality
The healthcare practitioner is under a legal obligation not to disclose confidential information without the patient’s consent. Disclosure of information may occur in the following ways:
■ With patient consent
■ Without patient consent, when the disclosure is required by law
■ By accident
■ Without patient consent, when disclosure is considered necessary in the public interest.
As an example, the NMC published an advisory paper on confidentiality; this paper summarized practices as follows:
■ A patient has a right to expect that information given in confidence will be used only for the purpose in which it was given and will not be released to others without their consent.
■ Practitioners must recognize the fundamental right of their patients to have information about them held in secure and private storage.
■ Where it is deemed appropriate to share patient information obtained in the course of professional practice with other health care professionals, the health care professional who obtained the information must ensure that it is imparted in strict professional confidence and for a specific purpose.
■ That the responsibility to either disclose or withhold confidential information in the public interest lies with individual practitioners who are unable to delegate the decision. They cannot also be required by a superior to disclose or withhold information against their will.
■ That a health care practitioner who chooses to breach the basic principles of confidentiality in the belief that they have done so in the public interest must have considered the matter sufficiently to justify their decision.
■ The deliberate breach of confidentiality other than with the patient’s consent should be exceptional.
Never discuss your patient’s condition or identify them to non-medical/nursing colleagues 
Advocacy
Advocacy is defined as the act of pleading a cause on behalf of another. It is a process of acting for or on behalf of someone. The word advocacy is not specifically used in the UKCC Code of Conduct (www.nmc-uk.org) but implied in the first clause where nurses, midwives and health visitors exercising professional accountability must: ‘Serve the interests of society and above all safeguard the interests of individual patients…’.
Advocacy is an important principle in nursing adult patients because it makes it clear that generally adults are rational. Adults are capable of making choices and making decisions; however, some illnesses and specific situations, e.g. admission to an ICU, may mean that the patient may temporarily lose their autonomy and a person will need to speak on their behalf. That person might be the nurse.
Always ensure that you are representing your patient’s best interest when decisions are being made on their behalf 
Withdrawing and Withholding Treatment
The notion of withdrawing or withholding treatment within the realms of critical care is both complex and stressful for all concerned. The term withdrawing treatment involves the reduction and termination of organ support. This may take the form of reducing or terminating ventilatory support or not offering certain treatments that may prolong life.
The withdrawing or withholding of treatment within the critical care setting does include pain relief or methods of maintaining dignity and this must be put to the patient and family. Withdrawing or withholding treatment is moving from maintenance of life to maintenance of dignity and prevention of torturous care and/or treatment. Pain relief, hydration and nursing care are a few of the treatments and care that will continue until death occurs. It is important to note that any decisions made may be modified and reversed depending on the patient’s individual circumstances.
Ethnic, social and family influences play a major role in deciding the treatment pathway. Furthermore, it is important that the critical care team have discussed and are in agreement with the course of treatment before approaching the family members. Family members will inevitably be distressed by the information given to them and thus need committed and confident practitioners who are certain about their decision-making process and have the patient’s best interest in mind. This process must take the form of considerable compassion towards the patient and family members so as not to cause further unnecessary distress.
Unfortunately, due to the very nature of the withdrawing and withholding situation, there are always going to be difficulties and problems surrounding the family dynamics. But factors such as truthful information giving, listening, promoting discussion and empathy are all important factors in minimizing the pain and anguish often experienced by patients and family members. The patient’s wishes are paramount and their best interest must always be at the forefront of any decision-making.
Upon receiving such information, family members can become aggressive and manifest episodes of irrationality. These are all normal signs of grief and must be taken into account when involved with such sensitive matters. It is important that the critical care team offer support and empathy during this difficult time so that their journey to acceptance is easier. Any discussions between the family and critical care team must be documented in the event that there are discrepancies about the giving of information.
Technological advances in the past 40 years have had an enormous impact on the way medicine is delivered today. This is particularly true within the critical care speciality, where intensivists possess the knowledge and tools to prolong life in many situations where patients may not have survived in the past. Before a decision is made to withhold or withdraw treatment, the treating doctor must carry out a thorough assessment of the patient’s condition and determine the likely prognosis, taking into account current guidance on good clinical practice and seeking the views and assessments of the clinical team and family members.
Where there is significant disagreement within the clinical team and family, the treating doctor must try to resolve them and ensure clarity and consistency in the information provided to family members. In some instances a second opinion may be beneficial where there is a significant disagreement within the clinical team about clinical aspects of patient care.
Decisions to withdraw or withhold treatment must be documented properly. This should include the relevant clinical findings, details of discussions with patient, family or other members of the clinical team, and details of treatment given with any agreed review dates and outcomes of treatment or other significant factors surrounding the decision-making process which may affect patient outcome.
Decision-Making in Critical Care
Decision-making within a critical care setting is both complex and challenging to the health care team; therefore, a team approach is often adopted so that the views of all staff members may be sought – in doing so promoting the best possible outcome for the patient, staff and department.
Within the realms of decision-making, there are a number of areas where the expertise of the critical care team is sought. These include issues concerning common matters faced by the critical care team, uncommon matters rarely encountered by the critical care team and matters of extreme emergency where decision making process is cut short and made by individuals rather than the team. However, this is not to say that the situation is not reflected upon later when a team discussion takes place.
In relation to seeking patient’s views in the decision making process, critical illness imposes severe limitations on the validity of patient autonomy, which requires a patient to be mentally competent and fully informed. In such cases, the views of the patient are sought via close family members, friends and critical care staff members so that their views are taken into account when making decisions about treatments and care issues.
Health Promotion
Health-promoting activities have long been an integral part of nursing care. The nurse’s primary focus is to assist individuals to achieve a positive state of health, well being and improved quality of life.
The notion of health promotion may be applied at all levels of patient care from a ward-based setting to a critical care setting. Therefore, within a critical care setting, health promotion activities will be aimed at restoring health or helping the individual to achieve an improved state of well being and functioning. The promotion aspect is aimed at helping individuals to positively change their behaviour and to alter lifestyle in order to improve their health. Individuals with chronic health problems may never achieve the feeling of improved health but they have the right to obtain the knowledge, skills and resources needed to maximize their quality of life.
The concept of patient teaching is important in educating the patient so that they are best positioned to make an informed decision about their health and well being. It must be accepted that patients have the right to make their own decisions and assume responsibility for their health – effective patient education strategies should follow this aspect of care as a natural sequence.
Role Conflict
In all organizations, there comes a time when the critical care nurse becomes more of a manager, for example, a nursing sister becomes a nurse manager. In such cases, conflict may arise when the nurse has to wear two hats, that of manager and that of nurse. The conflict is a subtle one, but nevertheless will affect decision-making.
