​​Dr. Laura Istanboulian NP, PhD, Assistant Professor, Daphne Cockwell School of Nursing (DCSN),  Toronto Metropolitan University​

By: Dr. Laura Istanboulian, Lorrie Hamilton, Dr. Kelly Smith, & Dr. Karen Soldatić

Persistent critical illness is a longer than usual intensive care unit (ICU) admission, characterized by the ongoing need for critical care due to factors beyond the original reason for admission ⁽¹⁾. Persistent critical illness often includes prolonged invasive ventilation (defined as more than 21 days of ventilation) or sometimes referred to as “difficulty weaning" from mechanical ventilation ⁽²⁾. Patients with persistent critical illness with prolonged ventilation are cared for in a wide variety of settings, including ICUs, long-stay-, specialized weaning-, and long-term ventilation programs.

In Ontario, approximately 4-5 per cent of adult admissions to the ICU include prolonged ventilation and persistent critical illness ⁽³⁾. Although this is a relatively small number of admissions, it represents a disproportionate number of ICU days, workload, and health care costs ⁽³⁾. It is also a population that continues to grow ⁽³⁾. Patients with prolonged ventilation are more likely to require care-intensive equipment such as artificial airways (e.g., tracheostomy), alternate feeding tubes (e.g., gastric), and often experience critical care-associated weakness impacting their mobility. Multifocal communication vulnerability places this population at risk for adverse safety events, as communication is extremely constrained under such circumstances. This growing population is also more likely to be discharged to complex care and rehabilitation settings following ICU ⁽³⁾. If discharged home, they often require ongoing care from formal care services and remain heavily dependent upon informal carer networks ⁽³⁾.

Family engagement and empowerment during critical illness has long been encouraged in the hope of improving ICU patient and family outcomes, including post-ICU post-traumatic stress disorder ⁽⁴⁾. Despite this, globally, family engagement and empowerment interventions in ICUs are among the least reported to be implemented from ABCDEF recommendations ^{(5, 6)}. Open visiting hours and inclusion in team rounds are commonly used family engagement strategies, but these are not implemented consistently, and not always supported by training or institutional policies. 

Care partner programs are one way to include and engage family during critical illness. Care partners are defined as people (often family) who are chosen by the person in ICU (where possible) to support them during illness and/or recovery ⁽⁷⁾. Care partnership implies an agreed set of conditions (or policies) and transparent roles between patients, informal carers (care partners hereafter), and formal health care team members ⁽⁷⁾.

Care partners are integral to patient safety during persistent critical illness – they support physical, cognitive, emotional, social, and spiritual recovery. For example, in a recent qualitative study, our team learned that care partners not only support physical care, rehabilitation, and emotional support – highly visible supportive acts – they also assist with patient communication and advocacy, safety checks, and social gatekeeping ⁽⁸⁾. 

Importantly for this population, they also support transitions across organizations – ensuring patient information is carried forward and participating in training to provide care following discharge ⁽⁸⁾. Care provision during critical illness is “intense" for family too – and therefore, they also require physical, emotional, and social supports ⁽⁹⁾. Structural features of formal care partner programs including identification and consistent integration in care planning and decision-making are just some of the ways such programs can mitigate risks to care partners ⁽⁹⁾.

Care partner programs are implemented in many care environments and have the potential to improve family engagement and empowerment during persistent critical illness. More research is needed to understand the program models, design and outcomes of care partner programs in critical care settings such as intensive care units and specialized weaning programs.

With the support of the Ontario Caregiver Organization, a care partner integration toolkit for critical care settings is currently being developed at Michael Garron Hospital Provincial Center for Excellence in Prolonged Ventilation Weaning and will be available for these settings to tailor and implement within any given local hospital context. We hope that the creation of formalized care partner programs in critical care settings will support safe care of patients and improve family engagement and empowerment. Opening our doors to family is an important but only one part of orienting and humanizing our care around patients and family experiencing persistent critical illness.

References

1. Bagshaw SM, Stelfox HT, Iwashyna TJ, Bellomo R, Zuege D, Wang X. Timing of onset of persistent critical illness: a multi-centre retrospective cohort study. Intensive Care Med. 2018;44(12):2134-44.
2. Rose L, Fowler RA, Fan E, Fraser I, Leasa D, Mawdsley C, et al. Prolonged mechanical ventilation in Canadian intensive care units: a national survey. J Crit Care. 2015;30(1):25-31.
3. Hill AD, Fowler RA, Burns KE, Rose L, Pinto RL, Scales DC. Long-Term Outcomes and Health Care Utilization after Prolonged Mechanical Ventilation. Ann Am Thorac Soc. 2017;14(3):355-62.
4. Balas MC, Devlin JW, Verceles AC, Morris P, Ely EW. Adapting the ABCDEF Bundle to Meet the Needs of Patients Requiring Prolonged Mechanical Ventilation in the Long-Term Acute Care Hospital Setting: Historical Perspectives and Practical Implications. Semin Respir Crit Care Med. 2016;37(1):119-35.
5. Haruna J, Unoki T, Liu K, Nakamura K, Inoue S, Nishida O. Factors associated with ABCDEF bundle implementation for critically ill patients: An international cross-sectional survey in 54 countries. SAGE Open Med. 2025;13:20503121241312944.
6. Marra A, Ely EW, Pandharipande PP, Patel MB. The ABCDEF Bundle in Critical Care. Crit Care Clin. 2017;33(2):225-43.
7. ennett PN, Wang W, Moore M, Nagle C. Care partner: A concept analysis. Nurs Outlook. 2017;65(2):184-94.
8. Istanboulian L, Gilding A, Hamilton L, Master T, Bingler S, Hill M, et al. Reported roles of care partners in a specialized weaning centre-perspectives of patients, care partners, and health care providers. Front Health Serv. 2024;4:1439410.
9. Istanboulian L, Gilding AJ, Hamilton L, Master T, Bingler S, Soldatic K, et al. Reported impact and protective factors of the care partner role during persistent critical illness. . BMC Nursing (Submitted June 24, 2024). 2024.

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