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Dear Dr Gillies,
You have been an exemplary leader in Darling Downs Hospital and Health Service (DDHHS) since 2009. During this time, you have undertaken many difficult roles where you endeavoured to increase the level of service provided to our patients. You have been a dedicated advocate for improving patient care, reducing outpatient waiting lists, increasing emergency department access and exceeding clinical targets for timely surgery. Your commitment to ensuring families within the DDHHS catchment area have timely access to quality health care is commendable. As a powerful advocate for change, and you have the opportunity to ensure that vulnerable patients receive the best care and support available. I write to you today as a Social Worker in Toowoomba Base Hospital, as a university student, and as an individual with personal experience in the issue I highlight in this policy submission.
Hospitals within the DDHHS do not offer post-intensive care follow up once a patient has been discharged from hospital. Current standard practise involves assessing the patient’s needs before discharge, and where necessary referring patients to external rehabilitation services. This model of standard care is sufficient in the majority of cases, however where a patient has been mechanically ventilated or sedated for a significant period of time this standard of care does not address the complex issues they may face. As a survivor of critical care, I can attest to the complex difficulties patients face once they leave the ICU and like many, I still face numerous issues four years post-discharge.
Why is the problem occurring?
As you are aware advances in healthcare technology and intensive care (IC) medicine has reduced in-hospital and IC mortality rates (Ewens, Hendrick, & Sundin, 2014). As a result, millions of people worldwide are discharged from ICUs back to their families and communities (Harvey & Davidson, 2016). However, recovery from a critical illness can be a difficult and lengthy process (Aitken, Rattay, & Hull, 2017). In recent years, clinicians have developed a better understanding of the consequences of ICU care and research shows that ICU survivors may experience significant functional impairments post ICU discharge (Storli & Lind, 2009). Post intensive care syndrome (PICS) describes the constellation of symptoms that a patient may experience (Rawal, Yadav, & Kumar, 2017). PICS comprises of impairment in cognition, physical functioning, and psychological health (Needham et al., 2012). Cognitive impairment includes; decreased memory, difficulty talking, forgetfulness, poor concentration, and trouble organising and problem-solving. Physical symptoms include; fatigue, decreased mobility, muscle weakness, difficulty breathing, and insomnia. Psychological issues include post-traumatic stress disorder (PTSD), anxiety, depression, and decreased motivation (Rawal et al., 2017). These symptoms reduce the patients quality of life (QoL), impede long-term survival (Gayat et al., 2018) and increase the risk of additional mental health issues (Knowles & Tarrier, 2009). Symptoms can persist indefinitely if not treated (Knowles & Tarrier, 2009).
PICS has been recognised a significant health burden which represents a substantial burden on individuals, carers, the service and society (Rawal et al., 2017). The risk of developing negative psychological symptoms, such as PTSD, depression, and anxiety ranges from one to 62% (Desai, Law, & Needham, 2011; Jackson et al., 2014; Elliott et al., 2014; Rawal, Yadav, & Kumar, 2016). Cognitive impairment has been reported in 25% of critical care survivors (Needham et al., 2013; Pandharipande et al., 2013; Davydow, Zatzick, Hough, & Kanton, 2013). Some patients improve during the first year, however other patients never regain their pre-ICU level of functioning (Colbenson et al., 2019). ICU-acquired neuromuscular weakness, the most common physical impairment post-ICU has been reported in more than 25% of critical illness survivors (Jackson et al., 2014; Fan et al., 2014), with approximately 50% of ICU survivors reporting difficulties with daily activities 1-year post-discharge and 33% unable to return to work or return to their pre-ICU position or salary (Colbenson et al., 2019).
In Australia during 2017-2018 161,430 patients were admitted to ICUs across Australia and 46,366 were placed on CVS during the period 2017-2018 (Australian Institute of Health and Welfare [AIHW], 2019). Research has demonstrated that ICU survivors have a higher mortality rate (Lone et al., 2015; Ohnuma, Shinjo, Brokhart, & Fushimi, 2018) and a higher prevalence of hospital readmission (Lone et al., 2015; Hua, Gong, Brady, & Wunsch, 2015) than patients who did not receive critical care. The prolonged use of continuous ventilatory support (CVS) and deep sedation are strongly associated with these issues (Rawal et al., 2017). These statistics represent a significant financial burden on individuals, carers, health services, and society.
In addition, to the difficulties faced by ICU survivors, the psychological health of their family members may also be adversely impacted (Bohart et al., 2018). PICS-F refers to new or increased cognitive or mental health impairment in a relative after the critical illness of a loved one. PICS-F is typically not diagnosed until symptoms persist for at least one-month post patient discharge. Symptoms interfere with an individuals’ ability to care for loved ones after discharge, as well as impacting their home and work responsibilities (Twibell, Petty, Olynger, Abebe, 2018). Symptoms vary in intensity and can persist for months or years (Twibell et al.).
Current discharge practice within the DDHHS does not address the issues of critical care survivorship. Outpatient services are mostly unaware of PICS and are inadequately resourced to address the complex issues of survivorship (McPeake et al., 2019). DDHHS patients are being discharged unprepared and ill-informed about how to manage their recovery. This may result in cognitive, physical, and psychological deficits and impairments going undiagnosed and unmanaged (McPeake et al.). These negative outcomes highlight the need for practical effective treatment to ensure optimal recovery for DDHHS patients following critical care.
What are the options?
Several interventions have been found to be effective in preventing the development of PICS and PICS-F
Option 1: The implementation of post-intensive care clinics
Post-intensive care clinics have been operating in the UK since 1985 and were established to monitor and treat critical care survivors (Griffiths, Barber, Cuthbertson, & Young, 2006). The clinics can be led by a nurse or doctor and allow for the provision of extended care to survivors of critical illness (Williams & Leslie, 2008). Post-ICU clinics measure post-ICU health, diagnose post-ICU impairments, symptom and medication management, prognosis discussion, and implement interventions for cognitive, physical, and psychological rehabilitation (Teixeira & Rosa, 2018; Fernadez, Jaeger, & Chudow, 2019). There is no standard model for a post-ICU clinic, however, clinics are multidisciplinary and may include nurses, physical and occupational therapists, pharmacists, physicians, and psychologists (Colbenson et al., 2019). The continuity of care increases the likelihood of potential problems being identified whilst in their infancy, treatments and interventions can be monitored, they provide an opportunity to further examine the outcomes of critical illness (Graham, 2005) and patients and their families have the opportunity to discuss any issues or problems with intensive care experts (Williams & Leslie, 2008). Furthermore, in Prinjha, Field, and Rowan’s (2009) survey, patients identified four main benefits of post-ICU follow up clinics; continuity of care, information about recovery and relapse, reassurance from experts, and the opportunity to provide feedback.
Option 2: Implementation of ICU diaries
ICU diaries originated in Europe in the 1980s (Nielsen & Angel, 2016) and over the past number of decades have been adopted in the UK (Knowles & Tarrier, 2009), the United States (Blair, Eccleston, Binder, & McCarthy, 2017), and Australia and Japan (Beg, Scruth, & Liu, (2016). The concept of an ICU diary is to provide a comprehensive narrative of events during the patients ICU stay (Nair, Mitchell, & Keogh, 2015). The diaries aim to help patients understand their critical illness and fill the gaps in their memory, therefore, reducing psychological distress (Teece & Baker, 2017). Authorship of the diary is predominantly the responsibility of the ICU nurse, however, all professionals involved in the patients care and family members are encouraged to write in the diaries (Hale, Parfitt, & Rich, 2010). The potential benefit of ICU diaries is not limited to patients, several studies have noted benefits for family members (Egerod, Christensen, Schwartz-Nielsen, & Agard, 2011; Garroust-Orgeas et al., 2012). Involving family members in the patients care has strengthened their sense of care coherence (Long, Kross, & Curtis, 2016), improved their satisfaction with the level of care provided (Goldfarb, Bibas, Bartlett, Jones, & Khan, 2017) and improved their mental health outcomes (Matt, Schwarzkopf, Reinhart, Konig, & Hartog, 2017).
Option 3: Implement the ABCDEF or ICU Liberation bundle
In 2018, the Clinical Practice Guidelines for the Management of Pain, Agitation, and Delirium in Adult Patients in the Intensive Care Unit (ICU PAD guidelines) were updated and adapted into the ABCDEF/ICU Liberation bundle (Devlin et al., 2018). The bundle is an evidence-based direct treatment guide to prevent delirium and long term physical and cognitive decline in the ICU (Marra, Ely, Pandharipande, & Patel, 2017). According to Marra et al. ‘ABCDEF’ “refers to A) assess and manage pain, B) breathing trials and spontaneous awakening, C) choice of sedative, D) daily delirium monitoring, E) early mobility, and F) family engagement and empowerment” (p. 99). Research has shown that implementing the bundle can reduce the period of CVS and ICU stays, physical decline, periods of delirium, and loss of muscle mass, and has increased the number of patients returning to full independent functioning post-discharge (Colbenson et al., 2019). Currently, the bundle is being implemented in 76 ICUs across the United States and aims to shift practice away from sedating and restraining patients to patients who are mobile, awake, and cognitively engaged (Ely, 2017). It has shown significant improvements in ICU survival, CVS use, restraint-free care, ICU readmissions, coma, and delirium (Pun et al., 2019).
Option 4: Peer support groups (THRIVE)
Peer support programs have been proposed as an intervention to mitigate the effects of PICS and PICS-F (Mikkelsen, Jackson, Hopkins et al., 2016). Mikkelsen, Jackson, Hopkins et al. define peer support as “the process of providing empathy, offering advice, sharing stories between ICU survivors” (p. 223). Research has shown that peer support interventions in other patient populations, such as diabetes (Heisler, 2007), traumatic brain injury (Hibbard et al., 2002), cancer (Hoey, Leropoli, White, & Jefford, 2008), heart failure (Heisler, 2007), mental health (Davidson, Bellamy, Guy, & Miller, 2012), and substance misuse (Mead & MacNeil, 2006) have been effective. The potential benefits of peer support for PICS and PICS-F include information sharing, role modelling, mental reframing, and practical advice (Mikkelsen, Jackson, Hopkins et al.).
The Society of Critical Care Medicine (SCCM) international THRIVE peer support collaborative program was developed to provide information and help foster innovation to impede the impact of PICS. The collaborative has identified six models of peer support; 1) community-based model; 2) psychologist led outpatient model; 3) ICU follow-up clinic-based model; 4) ICU based model; 5) online model; and 6) peer mentor model (McPeake et al., 2019)
The implementation of a post-ICU clinic as recommended in option 1 is a feasible option and provides an opportunity to mitigate the effects of PICS and PICS-F. Patients and their families have identified numerous benefits in attending post-ICU clinics (Graham, 2005; Prinjha et al., 2009). However, there are a number of barriers, including the cost of resources (staff, space, finance), recruiting and retaining high-risk patients, and lack of knowledge and awareness in methods to promote maximum recovery (Sevin et al., 2018). Additionally, there is a little information relating to ICU clinics outside the UK and taking into account the lack of a best practice model, the difference in health care practices, and the needs of Australian patients an alternative model of post-ICU clinics would need to be investigated and trialled in Australia before implementation (Williams & Leslie, 2008).
Option 2, the ICU diary concept is a cost-effective intervention and a survey of Australian healthcare staff report that staff were enthusiastic and optimistic about the concept and had a positive perception about the potential positive outcomes for patients and their families (Nair et al., 2015). However, studies evaluating the effect of diaries on patients recovery vary in their results (O’Gara & Pattison, 2016; Teece & Baker, 2017). Diary use in Australia is in its infancy and there is a lack of guiding policy informing diary format, implementation, and evaluation (Nair et al.). Additionally, diaries focus solely on improving psychological outcomes (PTSD, anxiety, and depression) and QoL (Nair et al.). Therefore, separate interventions focusing on improving cognitive and physical outcomes would need to be implemented. The ABCDEF/ICU Liberation bundle is a well-researched evidenced-based approach to improve patient recovery and outcomes post-ICU. Its process is flexible and well defined and empowers multidisciplinary practitioners and relatives to share care (Marra et al., 2017). Several implementation barriers have been identified including communication and coordination of care, documentation burden, knowledge deficits, workload concerns, and intervention issues (Balas et al., 2013).
Survivors and their families have intimate experience of the challenges of surviving critical illness and they are well placed to educate and support peer survivors through the recovery process. Peer support is cost-effective and a practical solution to improving long-term patient outcomes. Therefore, this submission recommends the implementation of option 4, specifically the community-based model and the online model of peer support. The community-based model focuses on establishing a community of individuals that promotes health and enhances recovery through shared experience. Peer support groups are led by staff members and/or former ICU patients. The meetings take place in accessible community-based settings, are open to patients and caregivers, and have no attendance timeframes. It requires minimal input from health care practitioners and patients may be more likely to attend if the meetings are not held where they were admitted (Mikkelsen et al., 2016). DDHHS is responsible for providing health care services for over 300,000 people covering a vast geographic area and many patients may face barriers attending face-to-face meetings because of their location, ongoing illness or limited access to transport the online model of peer support is also recommended. The online model is a website or forum that enables patients to engage with other patients and staff members.
Peer support for PICS is in its infancy in Australia, therefore there is little information relating to which models are best effective for the patient population. However, information and input can be obtained from Western Health Melbourne, which was the first Australian health care provider to join the SCCM international THRIVE collaborative. Five general barriers to implementing peer support programs have been identified; 1) family and patient engagement; 2) building a therapeutic relationship; 3) engaging an appropriate facilitator; 4) managing expectations; and 5) bureaucratic limitations (support, funding etc) (Haines et al., 2019). The following will also need to be considered when implementing the peer support option; organisation readiness and commitment, program development, program implementation, evaluation, and sustainability.
In conclusion, survivors of critical illness may experience a range of debilitating issues, termed PICS, post ICU discharge. Currently, hospitals within the DDHHS do not offer post-intensive care follow up to their patients. This may result in cognitive, physical, and psychological deficits and impairments going undiagnosed and unmanaged. Several initiatives could be implemented to mitigate and manage the symptoms PICS. This proposal recommends implementing the community and online models of peer support groups.
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