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Nursing staff tending to patient in intensive care

NIHR Signal Supporting families of those in intensive care improved family satisfaction but didn’t reduce family distress

Published on 30 October 2018

doi: 10.3310/signal-000666

A multicomponent support intervention for family members of patients in intensive care didn’t reduce their anxiety, depression or distress around the overall experience. However, it increased satisfaction with the quality of staff communication and delivery of care.

Family members of critically unwell patients on intensive care often need to be involved in care decisions. Yet they may feel unsupported and bewildered in the process. This intervention, delivered in five US intensive care units, involved training nurses in advanced communication skills and setting up regular meetings between the family and healthcare team. In addition to small improvements in family’s perceptions around care, the intervention was also associated with a shorter stay in intensive care for patients who died. The intervention cost on average $170 US per patient.

The findings support UK guideline recommendations for shared decision-making between the patient (where possible), those important to them and the multi-professional care team.

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Why was this study needed?

In England, in 2015-16 there were 271,079 records of adult critical care, 6% (11,045) of which were in intensive care. The End of Life Care Audit for the same period showed that 13% of people who died in hospital did so in critical care. For almost half of patients who died, there was no indication that staff had asked about the needs of those closest to them.

The families of severely unwell people may feel they have insufficient opportunity to discuss their loved one’s prognosis, treatment options, preferences and values. This can contribute to distress or lead to care that may be against patient wishes. This includes difficult decisions, such as when to withdraw treatment. A previous Signal on people dying in intensive care demonstrated that families need to receive personalised communication and be involved in the dying process.

This study evaluated whether an intervention to improve the quality of shared decision-making and family-staff communication could benefit both patients and families.

What did this study do?

The PARTNER randomised controlled trial was conducted in five intensive care units in Pittsburgh, US, with diverse sociodemographics, hospital settings and staffing structure. It involved the family members of 1,420 patients who had a high risk of dying or severe long-term disability and were unable to make decisions themselves.

In the intervention group, nurses received advanced communication skills training, centring upon supporting families of seriously ill patients. Trained nurses met with families daily and arranged doctor-family meetings at least weekly. The control group received usual care. Although the intervention cost on average $170 US, the cost-effectiveness of the intervention was not reported.

Six months after hospital discharge or death, study personnel who were unaware of group assignment conducted telephone interviews with 73% of family decision-makers.

The intervention group included more female patients who were slightly older, more acutely unwell and had more additional illness. The analysis adjusted for these differences.

What did it find?

  • At six months, there was no difference between groups in the main study outcome of family decision-makers’ scores on the Hospital Anxiety and Depression Scale. This has a score range 0-42 where higher scores indicate more symptoms. Scores were 11.7 in the intervention group and 12.0 in the usual care group (difference -0.34, 95% confidence interval [CI] -1.67 to +0.99).
  • Families in the intervention group rated the quality of clinician-family communication as about 6 percentage points better, a small improvement. Their average score was 69.1 on the 100-point Quality of Communication scale, where higher scores relate to better communication, compared with 62.7 in the usual care group (difference 6.39, 95% CI 2.57 to 10.20).
  • The intervention group also gave better ratings on the Patient Perception of Patient Centeredness scale, which had been adapted for use by surrogates. Scores were 1.7 out of 4 compared with 1.8 in the usual care group (difference -0.15, 95% CI -0.26 to -0.04) where lower scores indicate better patient- and family-centred care.
  • Patients whose relatives received the family support intervention had slightly shorter stays in intensive care (6.7 vs 7.4 days; incidence rate ratio [IRR] 0.90, 95% CI 0.81 to 1.00) and in hospital overall (10.4 vs 13.5 days; IRR 0.77, 95% CI 0.69 to 0.87). Further analysis revealed the effect was mediated by a shortened stay in intensive care among patients who died (4.4 vs 6.8 days; IRR 0.64, 95% CI 0.52 to 0.78.) There was no difference in length of stay for patients who survived to hospital discharge.
  • The in-hospital mortality rate was slightly higher for patients in the intervention group (36.0% vs 28.5% in the usual care group; odds ratio 1.43, 95% CI 1.10 to 1.87). However, there was no difference between groups in mortality by six months.

What does current guidance say on this issue?

UK Guidelines for the provision of intensive care services (2015) include recommendations for communicating with relatives and supporting shared decision-making. This includes providing psychological support in recognition that critical care can be associated with significant stress and traumatic reactions.

The NICE guideline Care of dying adults (2015) provides recommendations around recognition of the last days of life, communication, shared decision-making and symptom control, which consistently emphasise the need to discuss with both the dying person and those important to them. It’s recommended that a named healthcare professional is responsible for encouraging shared decision-making and ensuring that care plans are understood by family members. 

In this country, much of the work to compare quality and outcomes of intensive care centres is carried through the Intensive Care National Audit and Research Centre.

What are the implications?

Although increased family support didn’t alter the overall distress of having a relative in intensive care, improving satisfaction with the quality of care and communication seem equally important outcomes. Increased support may also lead to improved recognition of end of life and transition to palliative care. 

The findings support national recommendations, though there may be variation in UK hospitals in how shared decision-making is facilitated.  Intensive care systems in the US are comparable to that in this country, so these findings are relevant here. However there are some small differences in staffing and care processes, so the cost of the intervention in the UK may be different.

 The Psychosocial Assessment and Communication Evaluation tool has been developed as part of an NIHR-funded study to improve communication with families in intensive care.

Citation and Funding

White DB, Angus DC, Shields AM, et al; PARTNER Investigators. A randomized trial of a family-support intervention in intensive care units. N Engl J Med. 2018;378(25):2365-75.

This trial was supported by an Innovation Award from the UPMC Health System and by the Greenwall Foundation.

Bibliography

Higginson I, Koffman J, Hopkins P, et al. Development and evaluation of the feasibility and effects on staff, patients and families, of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty. BMC Medicine. 2013;11:213.

ICNARC. Intensive Care National Audit and Research Centre. London: Intensive Care National Audit and Research Centre; 2018.

NHS Digital. Hospital adult critical care activity/2015-16. London: NHS Digital; 2017.

NHS website. Intensive care. London: Department of Health; 2016.

NICE. Care of dying adults in the last days of life. NG31. London: National Institute for Health and Care Excellence; 2015.

FICM/ICS Joint Standards Committee. Guidelines for the provision of intensive care services. London: The Faculty of Intensive Care Medicine/The Intensive Care Society; 2015.​

Lamas D. Nurse-led communication in the intensive care unit. N Engl J Med. 2018;378:243132.

Wright SE, Walmsley E, Harvey SE, et al. Family-Reported Experiences Evaluation (FREE) study: a mixed-methods study to evaluate families' satisfaction with adult critical care services in the NHS. Health Serv Deliv Res. 2015;3(45).

Why was this study needed?

In England, in 2015-16 there were 271,079 records of adult critical care, 6% (11,045) of which were in intensive care. The End of Life Care Audit for the same period showed that 13% of people who died in hospital did so in critical care. For almost half of patients who died, there was no indication that staff had asked about the needs of those closest to them.

The families of severely unwell people may feel they have insufficient opportunity to discuss their loved one’s prognosis, treatment options, preferences and values. This can contribute to distress or lead to care that may be against patient wishes. This includes difficult decisions, such as when to withdraw treatment. A previous Signal on people dying in intensive care demonstrated that families need to receive personalised communication and be involved in the dying process.

This study evaluated whether an intervention to improve the quality of shared decision-making and family-staff communication could benefit both patients and families.

What did this study do?

The PARTNER randomised controlled trial was conducted in five intensive care units in Pittsburgh, US, with diverse sociodemographics, hospital settings and staffing structure. It involved the family members of 1,420 patients who had a high risk of dying or severe long-term disability and were unable to make decisions themselves.

In the intervention group, nurses received advanced communication skills training, centring upon supporting families of seriously ill patients. Trained nurses met with families daily and arranged doctor-family meetings at least weekly. The control group received usual care. Although the intervention cost on average $170 US, the cost-effectiveness of the intervention was not reported.

Six months after hospital discharge or death, study personnel who were unaware of group assignment conducted telephone interviews with 73% of family decision-makers.

The intervention group included more female patients who were slightly older, more acutely unwell and had more additional illness. The analysis adjusted for these differences.

What did it find?

  • At six months, there was no difference between groups in the main study outcome of family decision-makers’ scores on the Hospital Anxiety and Depression Scale. This has a score range 0-42 where higher scores indicate more symptoms. Scores were 11.7 in the intervention group and 12.0 in the usual care group (difference -0.34, 95% confidence interval [CI] -1.67 to +0.99).
  • Families in the intervention group rated the quality of clinician-family communication as about 6 percentage points better, a small improvement. Their average score was 69.1 on the 100-point Quality of Communication scale, where higher scores relate to better communication, compared with 62.7 in the usual care group (difference 6.39, 95% CI 2.57 to 10.20).
  • The intervention group also gave better ratings on the Patient Perception of Patient Centeredness scale, which had been adapted for use by surrogates. Scores were 1.7 out of 4 compared with 1.8 in the usual care group (difference -0.15, 95% CI -0.26 to -0.04) where lower scores indicate better patient- and family-centred care.
  • Patients whose relatives received the family support intervention had slightly shorter stays in intensive care (6.7 vs 7.4 days; incidence rate ratio [IRR] 0.90, 95% CI 0.81 to 1.00) and in hospital overall (10.4 vs 13.5 days; IRR 0.77, 95% CI 0.69 to 0.87). Further analysis revealed the effect was mediated by a shortened stay in intensive care among patients who died (4.4 vs 6.8 days; IRR 0.64, 95% CI 0.52 to 0.78.) There was no difference in length of stay for patients who survived to hospital discharge.
  • The in-hospital mortality rate was slightly higher for patients in the intervention group (36.0% vs 28.5% in the usual care group; odds ratio 1.43, 95% CI 1.10 to 1.87). However, there was no difference between groups in mortality by six months.

What does current guidance say on this issue?

UK Guidelines for the provision of intensive care services (2015) include recommendations for communicating with relatives and supporting shared decision-making. This includes providing psychological support in recognition that critical care can be associated with significant stress and traumatic reactions.

The NICE guideline Care of dying adults (2015) provides recommendations around recognition of the last days of life, communication, shared decision-making and symptom control, which consistently emphasise the need to discuss with both the dying person and those important to them. It’s recommended that a named healthcare professional is responsible for encouraging shared decision-making and ensuring that care plans are understood by family members. 

In this country, much of the work to compare quality and outcomes of intensive care centres is carried through the Intensive Care National Audit and Research Centre.

What are the implications?

Although increased family support didn’t alter the overall distress of having a relative in intensive care, improving satisfaction with the quality of care and communication seem equally important outcomes. Increased support may also lead to improved recognition of end of life and transition to palliative care. 

The findings support national recommendations, though there may be variation in UK hospitals in how shared decision-making is facilitated.  Intensive care systems in the US are comparable to that in this country, so these findings are relevant here. However there are some small differences in staffing and care processes, so the cost of the intervention in the UK may be different.

 The Psychosocial Assessment and Communication Evaluation tool has been developed as part of an NIHR-funded study to improve communication with families in intensive care.

Citation and Funding

White DB, Angus DC, Shields AM, et al; PARTNER Investigators. A randomized trial of a family-support intervention in intensive care units. N Engl J Med. 2018;378(25):2365-75.

This trial was supported by an Innovation Award from the UPMC Health System and by the Greenwall Foundation.

Bibliography

Higginson I, Koffman J, Hopkins P, et al. Development and evaluation of the feasibility and effects on staff, patients and families, of a new tool, the Psychosocial Assessment and Communication Evaluation (PACE), to improve communication and palliative care in intensive care and during clinical uncertainty. BMC Medicine. 2013;11:213.

ICNARC. Intensive Care National Audit and Research Centre. London: Intensive Care National Audit and Research Centre; 2018.

NHS Digital. Hospital adult critical care activity/2015-16. London: NHS Digital; 2017.

NHS website. Intensive care. London: Department of Health; 2016.

NICE. Care of dying adults in the last days of life. NG31. London: National Institute for Health and Care Excellence; 2015.

FICM/ICS Joint Standards Committee. Guidelines for the provision of intensive care services. London: The Faculty of Intensive Care Medicine/The Intensive Care Society; 2015.​

Lamas D. Nurse-led communication in the intensive care unit. N Engl J Med. 2018;378:243132.

Wright SE, Walmsley E, Harvey SE, et al. Family-Reported Experiences Evaluation (FREE) study: a mixed-methods study to evaluate families' satisfaction with adult critical care services in the NHS. Health Serv Deliv Res. 2015;3(45).

A Randomized Trial of a Family-Support Intervention in Intensive Care Units

Published on 24 May 2018

White, D. B.,Angus, D. C.,Shields, A. M.,Buddadhumaruk, P.,Pidro, C.,Paner, C.,Chaitin, E.,Chang, C. H.,Pike, F.,Weissfeld, L.,Kahn, J. M.,Darby, J. M.,Kowinsky, A.,Martin, S.,Arnold, R. M.

N Engl J Med , 2018

Background Surrogate decision makers for incapacitated, critically ill patients often struggle with decisions related to goals of care. Such decisions cause psychological distress in surrogates and may lead to treatment that does not align with patients' preferences. Methods We conducted a stepped-wedge, cluster-randomized trial involving patients with a high risk of death and their surrogates in five intensive care units (ICUs) to compare a multicomponent family-support intervention delivered by the interprofessional ICU team with usual care. The primary outcome was the surrogates' mean score on the Hospital Anxiety and Depression Scale (HADS) at 6 months (scores range from 0 to 42, with higher scores indicating worse symptoms). Prespecified secondary outcomes were the surrogates' mean scores on the Impact of Event Scale (IES; scores range from 0 to 88, with higher scores indicating worse symptoms), the Quality of Communication (QOC) scale (scores range from 0 to 100, with higher scores indicating better clinician-family communication), and a modified Patient Perception of Patient Centeredness (PPPC) scale (scores range from 1 to 4, with lower scores indicating more patient- and family-centered care), as well as the mean length of ICU stay. Results A total of 1420 patients were enrolled in the trial. There was no significant difference between the intervention group and the control group in the surrogates' mean HADS score at 6 months (11.7 and 12.0, respectively; beta coefficient, -0.34; 95% confidence interval [CI], -1.67 to 0.99; P=0.61) or mean IES score (21.2 and 20.3; beta coefficient, 0.90; 95% CI, -1.66 to 3.47; P=0.49). The surrogates' mean QOC score was better in the intervention group than in the control group (69.1 vs. 62.7; beta coefficient, 6.39; 95% CI, 2.57 to 10.20; P=0.001), as was the mean modified PPPC score (1.7 vs. 1.8; beta coefficient, -0.15; 95% CI, -0.26 to -0.04; P=0.006). The mean length of stay in the ICU was shorter in the intervention group than in the control group (6.7 days vs. 7.4 days; incidence rate ratio, 0.90; 95% CI, 0.81 to 1.00; P=0.045), a finding mediated by the shortened mean length of stay in the ICU among patients who died (4.4 days vs. 6.8 days; incidence rate ratio, 0.64; 95% CI, 0.52 to 0.78; P<0.001). Conclusions Among critically ill patients and their surrogates, a family-support intervention delivered by the interprofessional ICU team did not significantly affect the surrogates' burden of psychological symptoms, but the surrogates' ratings of the quality of communication and the patient- and family-centeredness of care were better and the length of stay in the ICU was shorter with the intervention than with usual care. (Funded by the UPMC Health System and the Greenwall Foundation; PARTNER ClinicalTrials.gov number, NCT01844492 .).

Expert commentary

Patients in intensive care units do not always have capacity to make decisions about their care. In those cases, patients’ goals of care are discussed with their next of kin, who may feel unprepared to make decisions and their decisions could result in long-term distress.

Structured and well-planned communication between intensive care clinicians and surrogate decision makers can be beneficial and can enhance the perception of patient-centred care.

It is still unclear whether surrogate decision making is as stressful as it has been implied and whether family-centred care as enacted in intensive care units has an impact on this.

Dr Nikolaos Efstathiou, Lecturer /Adjunct Professor, University of Ottawa; MRes Clinical Health Research Programme Lead, University of Birmingham