Abstract
As medical treatments and technology advance, increasing numbers of patients are surviving more severe forms of critical illness. The negative medical, physical, psychological and social effects of critical illness and its treatment are often long lasting and not limited to the time the patient spends on the intensive care unit. The primary care management of this complex patient group is as important as the initial resuscitation and treatment in hospital. Carefully coordinated, multi-disciplinary team treatment and rehabilitation is required in order to reduce the morbidity of survivors and their carers.
The GP curriculum and improving survivorship after critical illness
Contribute to strategies to maintain and improve the well-being of people with long-term conditions, including: encouraging health promotion, reducing their treatment burden, supporting survivorship, managing their long-term decline Demonstrate the capability to lead and coordinate care at a team and, where appropriate, service level. This includes: supporting patients to self-care, shared care planning, monitoring and surveillance of long-term conditions, recovery and rehabilitation after serious illness or injury, palliation and end-of-life care Anticipate and manage the problems that arise during transitions in care, especially at the interfaces between different healthcare professionals, services or organisations.
Effective primary care requires the co-ordination and commitment of a multi-professional team working in partnership with patients
Be able to make complex ethical decisions and show sensitivity to a patient’s wishes in the planning of care Understand how the needs of others close to the patient (e.g. family members, carers) can be addressed appropriately Co-ordinate care with other professionals in primary care and with other specialists
Definitions and concepts
Critical illness and intensive care
‘Critical illness’ is a term that is used to describe conditions that are severe and immediately life-threatening; the underlying pathology may be a medical or surgical disease process or traumatic injury. When clinically appropriate, critically ill patients are managed in high-dependency units (HDUs) or intensive care units (ICUs). These are hospital areas that can provide specialised monitoring of a patient, and where advanced pharmacological and mechanical interventions can be provided to support organ systems that are failing peri-operatively or during medical treatment (Intensive Care Society (ICS), 2016).
Critical illness encompasses a range of disease severity: from relatively stable patients who undergo planned, short and uncomplicated HDU admissions following elective surgery, to unstable patients requiring unplanned, prolonged multi-organ support on the ICU. The scope of this article is primarily for adult patients following ICU admission.
ICU survivors may represent a small number of patients for individual general practices, varying according to local geographic and socio-economic factors. However, there are over 250 000 adult critical care admissions per year in England, and the numbers are increasing (Health and Social Care Information Centre (HSCIC), 2015). The epidemiology of critical illness is complex, due to the highly heterogeneous patient population involved, although the rising prevalence of critical care admissions may be due to the combination of advances in medical technology, an ageing population and changing societal expectations.
Chronic critical illness
Survival to ICU discharge has traditionally been considered by clinicians, patients and their relatives as the successful conclusion to a period of life-threatening illness. However, critical illness is not simply an acute process and many of its treatments have the potential for harm (Iwashyna, 2010).
There is a developing concept that in many cases critical illness is a chronic illness; ‘post-intensive care syndrome’ has been defined and consists in a spectrum of long-lasting complications following critical illness (Desai, Law, & Needham, 2011). These complications can be categorised into four domains: deterioration in medical co-morbidities; physical and functional disability; psychological and cognitive effects; and social issues. These are outlined in Fig. 1 and are discussed in more detail later in this article.
An overview of the four domains of problems for ICU survivors.
Survivorship
The term ‘survivorship’ in medicine is commonly used in the context of cancer, referring to a patient ‘who remains alive and continues to function during and after a serious hardship or life-threatening disease’ (National Cancer Institute, 2015). The National Cancer Survivorship Initiative (NCSI) is a model of care that uses stratified pathways for cancer survivors, which are based on care pathways for patients living with long-term conditions. Its aim is to ensure that ‘those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible’ (NCSI, 2013). The same principles can be applied to critical care survivorship; the pathway should start at the point of critical illness and encompass the wide array of patient needs that must be met using a holistic and patient-centered approach.
The patient journey
Every patient is unique; however, certain patterns and trajectories are commonly seen. Figure 2 demonstrates a patient’s journey through an episode of critical illness – from ICU admission via the wards, emergency department (ED) or theatres, through to discharge back to the community, where there is a spectrum of long-term complications endured by survivors. It is important to remember that the best achievable outcome is return to baseline function (pre-critical illness), which will vary greatly between patients.
A patient’s journey through critical illness.
The complications of critical illness can be reduced by multi-disciplinary team (MDT) assessment and rehabilitation. Ideally, this is initiated early during the ICU admission and continued during post-ICU ward care and in the community. At each transition of care, ICU survivors’ rehabilitation needs and goals should be reassessed (National Institute for Health and Care Excellence (NICE), 2009a). At the point of ward discharge, any interruptions to MDT rehabilitation as a result of breakdowns in communication or missed follow-up, risk causing deterioration across the four domains, with resultant poor patient quality of life (QOL), recurrent critical illness and death.
It is clear that ICU survival is in fact the beginning rather than the end of the journey for patients, who are often discharged back to the community with ongoing problems and complex care needs. GPs have a crucial role in assessing, prioritising and managing these patients, while leading the coordination of their care.
Medical conditions after critical illness
Common ICU interventions and potential medical problems following critical illness.
Neurological, physical and functional and psychological and cognitive complications are discussed separately in this article.
Review on discharge
Patients commonly have new diagnoses and medications that require titration. They may be confused or uncertain about what happened during their ICU admission, their diagnosis or the implications for the future. In the initial period following discharge, GP follow-up will aid detection of early medical complications and clear explanations will help reinforce understanding.
Tracheostomy-related issues
Patients discharged with tracheostomies in situ for airway protection, suctioning or home ventilation need follow-up by specialist community teams, which is invariably in place prior to discharge. Even if the tracheostomy was removed in hospital, patients can develop late complications, such as tracheal stenosis. This may mimic other respiratory conditions, with symptoms including fatigue, stridor, wheezing or recurrent chest infections, and requires referral to Ear, Nose and Throat (ENT) surgery. Patients with social or mental health problems relating to their tracheostomy scar may benefit from advice regarding camouflage makeup techniques; the British Association of Skin Camouflage (BASC) and Changing Faces offer advice for healthcare professionals and accept NHS referrals for patient consultations (BASC, 2016; Changing Faces, 2016). Plastic surgery referral may be required in complex cases.
Chronic organ dysfunction
Organ failure characterises acute critical illness; however, following discharge there may be ongoing organ dysfunction, reduced reserve and deterioration of pre-existing co-morbidities. Regular GP review, including cardiovascular and respiratory system examination, is essential to detect further deterioration or progression to chronic organ failure, which may necessitate referral to specialist out-patient clinics. Elderly patients with multiple co-morbidities can benefit from referral to a geriatrician. Such referrals may not have been needed or made during the patient’s hospital stay, and the importance of regular medical follow-up in the community must not be underestimated.
It is especially noteworthy that acute kidney injury requiring renal replacement therapy on the ICU is associated with accelerated development of chronic kidney disease and the need for long-term haemodialysis (Wald et al., 2009). These patients are at increased risk of cardiovascular complications and haemodialysis treatment is extremely costly for healthcare services. Currently, follow-up by nephrology services is poor, and these patients may be missed until irreversible complications have developed (Kirwan et al., 2015). Annual assessment of renal function in such patients is advised, but not currently evidence-based. Serum creatinine levels can provide false reassurance in the context of ICU-associated muscle wasting, and caution must be employed when interpreting results. Urine dipstick is a useful test and the development of proteinuria (≥1+) in this patient group warrants further review and early nephrology referral.
Chronic pain
Chronic pain is a highly prevalent and debilitating problem for ICU survivors: 73% of patients report either moderate or severe pain at 12 months following ICU discharge (Griffiths et al., 2013). This requires detailed assessment, titration of typical and atypical analgesics, or referral to a chronic pain clinic. Patients can also be sign-posted or referred to local NHS self-help services, such as Expert Patient programmes, which offer group education courses for patients with long-term conditions, including chronic pain.
Physical and functional disability after critical illness
Weakness and poor mobility
Prolonged bedrest and immobility frequently occurs during ICU admission, due to the underlying disease process or ICU treatments. Deconditioning and muscle-wasting rapidly result, leading to sustained loss of functionality and reduced exercise tolerance (Castro-Avila, Serón, Fan, Gaete, & Mickan, 2015). The respiratory muscles are often severely affected and it takes up to 5 years following ICU admission to return to baseline pulmonary function. Even with this level of recovery, at 5 years and in young patients (median age 45 years), 6 minute walk distances were 76% of predicted (Herridge et al., 2011).
Weakness, fatigability and mobility problems are common presentations and referrals to community physiotherapy and occupational therapy (OT) services should be made early if needed. Physical treatment programmes and education can improve contractures, muscle strength, balance, proprioception and general mobility. Falls assessment, home adaptations and mobility aids also help to reduce the burden of functional disability.
Important aetiologies or contributing factors include: chronic disease, anaemia, electrolyte disturbance, critical illness myopathy, sleep disorders, endocrine nutritional insufficiency and medications. These may be identified by targeted history and examination, with investigations including full blood count, iron studies, electrolytes, thyroid function tests, cortisol, erythrocyte sedimentation rate, and creatinine kinase.
Nutritional insufficiency
ICU survivors can be severely nutritionally impaired; this may be compounded by reduced appetite, loss of sense of smell or taste, depression and dysphagia, with negative implications for their physical rehabilitation. The Malnutrition Universal Screening Tool (MUST) is a useful screening tool; elevated scores (≥1) trigger further management, including serial weight measurements, dietary intake diaries, swallow assessment and use of nutrition supplements, with referral to a dietician or speech and language therapy (SALT) as necessary (British Association for Parenteral and Enteral Nutrition (BAPEN), 2016).
Sexual dysfunction
Sexual dysfunction occurs in 44% of patients in the year following critical illness (Griffiths et al., 2006). Symptoms may not be initially volunteered, therefore building patient rapport and acting on cues is essential to facilitate open discussion. Most cases can be managed by offering lifestyle advice and treating physical, pharmacological or psychological causes. Pharmacotherapy for erectile dysfunction with a phosphodiesterase inhibitor should be considered, and complex cases referred to urology or sexual health clinics (Russel, Ecclestone, & Kavia, 2014).
Psychological and cognitive effects of critical illness
Potential ICU triggers for psychological and cognitive problems following critical illness.
Post-traumatic stress disorder
Delirium is a feature of critical illness that is very distressing for patients and their relatives. Patients are often disoriented to time, place and person, and may form fixed delusional ideas about their surroundings, such as being held captive in a war zone, alien spaceship or prison, and that the hospital staff are soldiers, aliens or guards who are trying to hurt or kill them.
Prolonged painful or terrifying experiences inevitably have long-term consequences. Post-traumatic stress disorder (PTSD) affects 25% of ICU survivors, with longer duration of ICU delirium, previous psychiatric history and number ICU interventions increasing the risk (Wade, Hardy, Howell, & Mythen, 2013). Patients with PTSD typically complain of nightmares, flashbacks, irritability, insomnia and hyper-arousal. They may present with physical problems, such as chronic pain and gastrointestinal symptoms, or psychological problems, such as depression and substance misuse. Symptoms are often worst in the first month following discharge and fade thereafter, however, some patients will present with delayed onset PTSD. The Primary Care PTSD Screen (PC-PTSD) is a widely used and evidence-based four-item screening tool (Spoont et al., 2013). A positive score (≥3) warrants further assessment; details of the screening tool are available online (US Department of Veterans Affairs, 2016).
Watchful waiting for mild symptoms that have been present for less than 4 weeks is an appropriate initial strategy, comprising monitoring, reassurance and advice. Sign-posting survivors to read patient diaries written by staff nurses or relatives during their ICU admission, can also serve to complete gaps in their memory or help to explain confused memories of sights, sounds and events. ASSIST Trauma Care is a non-profit organisation that offers advice and support for the patients, family and carers of people with PTSD (ASSIST, 2016). Psychotherapy, including trauma-focussed cognitive behavioural therapy (CBT), group therapy and eye-movement desensitisation and reprocessing (EMDR), should be offered for persistent or severe symptoms. Pharmacological management with antidepressants, such as paroxetine or mirtazapine, is recommended second-line (NICE, 2005).
Sleep disturbance is a prominent feature of PTSD, but may also occur independently. Three months after critical illness, up to 62% of survivors suffer insomnia with associated reduced QOL (Solverson, Easton, & Doig, 2016). Sleep hygiene advice should be offered regarding fixed sleep and wake times, relaxation techniques, exercise and avoidance of caffeine, alcohol or daytime naps. Hypnotic medications should be used with caution and avoided in elderly patients or those with respiratory disease or cognitive impairment.
Depression and anxiety
During the first year following ICU discharge, 23% of patients suffer moderate-to-severe depression or anxiety and symptoms worsen in subsequent years (Hopkins et al., 2005). The DSM-IV criteria are recommended for diagnosing depression, and the risk of self-harm must be reviewed at every encounter (NICE, 2009b). Associated biological, psychological and social problems (including anxiety, alcohol or drug misuse) should be considered, as these factors impact on the course of depression and response to treatment.
A step-wise approach to management is recommended, with symptoms of anxiety being managed first if both depression and anxiety are present. The severity, duration of symptoms and presence of co-existing chronic illness determines the level and type of psychological or pharmacological treatments offered. First-line low intensity psychological therapies include: individual self-help CBT programmes, group-based CBT and physical activity programmes. Combined treatment with medication (normally a selective serotonin reuptake inhibitor (SSRI) initially) and high-intensity psychological intervention, such as weekly one-to-one CBT sessions for 12–15 weeks, is appropriate for moderate-to-severe depression, refractory symptoms or patients with chronic health problems. In certain regions, there are referral pathways to hospital-based psychologists with a specialist interest in critical illness-related mental health problems.
Cognitive impairment
Cognitive function is markedly affected by critical illness; up to 62% of patients suffer long-term cognitive impairment following ICU admission (Wolters, Slooter, van der Kooi, & van Dijk, 2013). Deficits occur in all age groups and 25% of ICU survivors have global cognition scores similar to patients with mild Alzheimer’s disease at 1-year following discharge (Pandharipande et al., 2013). Patients may have problems with executive function, memory, attention, speed of information processing and excessive tiredness. They may also demonstrate behavioural changes including apathy or disinhibition.
Once discharged from hospital, many ICU survivors will need formal cognitive assessment. There are many tools available in primary care including: Mini-Mental State examination (MMSE), Memory Impairment Screen, General Practitioner Assessment of Cognition Test and 6-Item Cognitive Impairment Test. MMSE is a standardised and widely used cognitive assessment tool; scores of 24 or less are indicative of cognitive impairment, but should not be taken in isolation and referrals may be made on clinical suspicion alone.
Patients with cognitive impairment may benefit from referral to community neuro rehabilitation teams for further cognitive assessment, OT assessment and neurorehabilitation. In certain regions, specialist traumatic brain injury (TBI) outpatient clinics offer cognitive and behavioural rehabilitation for TBI patients. Any patient in whom dementia is suspected (with or without a history of TBI) should be referred early to memory assessment services (NICE, 2006).
Social issues after critical illness
The social impact of critical illness can be considerable for patients – at 5-year follow-up, only 77% of ICU survivors had returned to work (Herridge et al., 2011). Additionally, it is estimated that up to 80% of care needs are met by family members and in 25% of cases this entails more than 50 hours of care a week. It is not surprising therefore, that ICU admission leads to a negative effect on overall household income in one third of cases (Griffiths et al., 2013).
Family members and carers are also exposed to considerable emotional and psychological distress while a patient is treated in the ICU. Following hospital discharge, this combined with the responsibilities and challenges of providing long-term care can lead to carer burnout or psychological complications such as depression, anxiety or PTSD.
Managing social issues can be challenging, although treating any underlying or precipitating medical, physical or psychological problems can help. If not already allocated, patients should be referred to a social worker to assist in organising care packages and provide support for independent living. Patients may require a carefully considered fit note and be sign-posted to the Citizens Advice Bureau or Disability Benefits Centre.
Change of roles, financial stresses, mental health issues and sexual dysfunction may all contribute to relationship breakdown following critical illness. This has the potential to further worsen mood disorders or lead to social isolation; referral to a private or charitable relationship counselling service such as Relate should be considered.
Patient support groups can be invaluable resources for patients, family members and carers. The Intensive Care Foundation and ICUsteps are national charitable organisations that provide information booklets, local support groups and an online community for people coping with the effects of critical illness (ICS, 2016; ICUsteps, 2016).
The central role of the GP
Co-ordinating and leading care
Unfortunately, issues of ICU survivorship are poorly communicated to patients and relatives by ICU teams (Govindan, Iwashyna, Watson, Hyzy, & Miller, 2014). Direct communication between the ICU and primary care teams is variable, and key information relevant to a patient’s ICU admission can be lost by the time of ward discharge.
Summary of the management options for post-ICU complications
The involvement of a wide range of multi-disciplinary services can lead to fragmented care and suboptimal management, with negative implications for patients’ long-term recovery. Figure 3 highlights the pivotal role of the GP in coordinating and integrating the MDT; to do this successfully GPs need to understand the patient’s journey, assess the patient’s needs and prioritise interventions.
The GP as a leader and coordinator of care for ICU survivors with complex needs.
Identifying high-risk patients
Age is an ethically and politically controversial factor in decision-making for ICU admission. However, it is entirely appropriate that age should serve as a red-flag when assessing ICU survivors. For patients over 80 years in age and admitted to ICU for more than a day, 1-year survival with return to baseline physical function is 26% and 1-year mortality is 44% (Heyland et al., 2015). Other patient-related factors to consider include patients with multiple co-morbidities, low baseline physical function or social isolation.
ICU-related factors also determine long-term outcomes and information regarding this may be available from discharge documentation, family members or the patient themselves. The implications for patients requiring renal replacement therapy or suffering prolonged delirium have already been discussed. Prolonged mechanical ventilation, for longer than 3 weeks, is associated with poor outcomes; at 1 year, 65% of patients receiving this treatment were either alive with complete functional dependence or had died (Unroe et al., 2010).
Care and treatment planning
It is often challenging to initiate discussions regarding resuscitation or advance care planning, particularly after the perceived success of having survived the ICU. However, a better understanding of possible harmful effects of ICU admission and the multitude of long-term sequelae empowers doctors to empathetically broach these discussions. Many ICU survivors will be able to make informed decisions based on their own experiences in conjunction with balanced advice from their doctor.
During discussions, it is important to acknowledge the uncertainty regarding the likely success or complications of future hospital or ICU admissions. Doctors should focus on their patient’s values: what do they see as the goals of their medical treatment (e.g. symptom control or cure), would they accept potentially harmful treatments again and what QOL or level of dependence is acceptable to them? The responses to this type of questioning should guide both parties towards a suitable care plan for the individual patient. In all cases patients need follow-up to clarify and reinforce information and provide support; relatives and carers should be involved in decision-making where appropriate.
Conclusions
Many patients suffer long-term complications following critical illness, irrespective of age or the aetiology of their illness. GPs play a key role in reducing the burden of survivorship in this complex patient group and ensuring that a patient-centred approach is maintained.
Maximising medical, physical, psychological and social recovery can have reaching benefits for patients, carers, healthcare systems and wider society.
Key points
Survivorship is the state of living during and after life-threatening disease Critical illness and its treatment can result in long-term complications for patients, relatives and carers Vigilance and awareness of the potential post-ICU complications will facilitate their early detection and treatment A holistic MDT approach, akin to that taken for cancer survivors, is needed to manage this complex group of patients
