Series
Aligning use of intensive care with patient values in the USA: past, present, and future

https://doi.org/10.1016/S2213-2600(19)30087-6Get rights and content

Summary

For more than three decades, both medical professionals and the public have worried that many patients receive non-beneficial care in US intensive care units during their final months of life. Some of these patients wish to avoid severe cognitive and physical impairments, and protracted deaths in the hospital setting. Recognising when intensive care will not restore a person's health, and helping patients and families embrace goals related to symptom relief, interpersonal connection, or spiritual fulfilment are central challenges of critical care practice in the USA. We review trials from the past decade of interventions designed to address these challenges, and present reasons why evaluating, comparing, and implementing these interventions have been difficult. Careful scrutiny of the design and interpretation of past trials can show why improving goal concordant care has been so elusive, and suggest new directions for the next generation of research.

Introduction

For at least 30 years, medical professionals have worried that too many US citizens receive non-beneficial treatments in intensive care units (ICUs) at the end of life.1 The citizens' fear that they will be unable to avoid such treatment helped to fuel the Patient Self Determination Act of 1990,2 the legally-recognised physician orders that can be carried around by citizens as protection against unwanted treatment (ie, the Physician Orders for Life-Sustaining Treatment document and the Maryland Medical Order for Life-Sustaining Treatment document),3 and access to physician aid in dying.4 Despite these concerns and efforts, the proportion of older Americans (>65 years) who were admitted to an ICU during their last month of life increased steadily from 24% to 29% between 2000 and 2009,5 and has not changed substantially since.6 By comparison, only 10% of Canadians and 4% of Germans are admitted to an ICU during the last month of life.7 This difference is especially pronounced in older people. In 2001, 32% of Americans aged 85 years or older who died in hospital were treated in a medical ICU during their terminal hospitalisation, compared with 2% in England.8

Most people agree that avoiding burdensome and invasive treatments is emotionally preferable to withdrawing them.9, 10 But there will always be patients for whom the benefit of life support is uncertain, and a trial of intensive care is appropriate. For these patients, the question becomes how long ICU care should continue if the patient is not recovering. The conflicting desires to both try treatments with uncertain benefit while simultaneously avoiding a medicalised death seem inherent to being an American. A study of first and second generation immigrants to the USA with terminal cancer found that those with higher levels of US acculturation were more likely to receive chemotherapy, more likely to participate in trials, and also more likely to report that they did not want to die in an ICU, than those with lower levels of US acculturation.11 Such patients who wish to try therapies of uncertain benefit and also avoid a protracted death, rely on physicians to point out when continuing treatment might preclude their ability to live, or to die, in a way they value. Recognising these pivotal decision points, and helping patients and families who are not benefitting from ICU care embrace achievable goals related to symptom relief or spiritual fulfilment, is arguably one of the most challenging procedures in critical care.12

In this Series paper, we describe research centred on ensuring that adult patients admitted to ICUs in the USA receive care consistent with their values and goals. We propose that these complex interventions designed to promote behavioural change present challenges to evaluating and comparing their effectiveness. We highlight both systems and cultural factors that affect their implementation. Finally, we discuss ideas for aligning ICU care with patient goals that are yet to be tested but might herald new and innovative directions for the field.

Key messages

  • Recognising when intensive care unit (ICU) care is not helping a patient achieve valued goals, and helping that patient and their family embrace achievable goals, related to symptom relief or spiritual fulfilment, are central challenges of critical care in the USA

  • Randomised trials of complex communication-focused interventions in the ICU have not shown substantial effects on the long-term mental health symptoms in family members of patients in the ICU, but many of these interventions have resulted in a decreased length of stay, particularly among study participants who die in hospital

  • Numerous design and analysis challenges make interpreting trials of interventions that are designed to improve communication between ICU providers, patients, and families difficult

  • Clinicians and researchers designing and interpreting studies of communication interventions should be aware of the deep-seated cultural norms and structural aspects of US medical institutions that together contribute to Americans receiving substantially more ICU care during their final month of life than residents of similarly wealthy nations

Section snippets

The legacy of the SUPPORT trial

The landmark SUPPORT trial13 published in 1995 was a pioneering study in the field. In their 2-year, prospective cohort study enrolling more than 8000 seriously ill hospitalised patients, the SUPPORT trial investigators found that providing physicians with prognostic estimates about short-term and long-term outcomes had no effect on the proportion of patients asked about their preference for cardiopulmonary resuscitation, length of ICU stay, incidence or timing of Do Not Resuscitate orders, or

Selected studies of communication interventions using pre-post designs

Pre-post study designs have been useful for testing approaches to improving communication with families of patients in the ICU (appendix). The study by Mosenthal and colleagues15 provided no new training for the ICU's existing staff. Instead, new personnel including palliative care physicians, nurses, and bereavement counsellors were integrated into the unit workflow. These personnel assessed all patients within 24 h of ICU admission during the intervention period and asked the patient's

Randomised trials of ICU communication interventions

At least four multi-site trials of communication interventions involving family meetings were done in US adult ICUs between 2008 and 2018 (table 1). Trial designs and a description of the interventions are summarised in the appendix. Inclusion criteria varied, but three trials19, 20, 21 targeted the families of mechanically ventilated patients who received at least 24 h of ICU care and had poor long-term prognoses, whereas the trial from 2011 by Curtis and colleagues18 measured outcomes among

Communication interventions as behaviour change campaigns

The different interventions evaluated in the past decade reflect the tools at hospitals' disposal when advocating for changes in practice (figure 1). The 2011 trial by Curtis and colleagues18 using grand rounds presentations, videos that are easily incorporated into online teaching modules, and educational pamphlets, is emblematic of low-cost, quality improvement campaigns commonly used across large health systems. Such campaigns assume the primary barrier to change is insufficient awareness or

Challenges in the design and interpretation of ICU communication studies

Designing and interpreting evaluations of communication interventions in the ICU is difficult for at least six reasons (panel). First, most critically ill patients are too ill to participate in a research study. Some patients are too ill to complete surveys at discharge or follow-up, and a substantial proportion die before hospital discharge. These circumstances mean that even the most rigorous study doesn't have adequate feedback from the most important person potentially affected by the

Obstacles to implementing goal-concordant ICU care

Clinical practice patterns in ICUs are shaped by cultural norms. Both US geographical regions,54 and institutions55, 56, 57, 58 vary widely in their approach to caring for patients at the end of life. Research informed by behavioural psychology and sociology suggests cultural and contextual influences might help to explain this variety. For example, the term clinical momentum59 has been used to describe the combination of recognition-primed decision-making,60 the cascade effect,61 and sunk cost

Recommendations for future research

Investigators will continue to trial interventions in this field, particularly given the National Heart, Lung, and Blood Institute's programme announcement in January, 2019, supporting research that uses practical approaches to increase the uptake of shared decision-making, including in the ICU setting (programme announcement number PA-19–166).96 We have six recommendations that are likely to be applicable to many of the studies funded as a result. First, recognise that most initiatives in this

Future directions and potential innovations

Efforts to match the care that patients receive in ICUs with the care they desire motivates multiple trials currently underway (table 2). A follow-up to the 2016 trial by Curtis and colleagues19 of communication facilitators will focus on engaging patients and surrogate decision-makers earlier during their ICU stay and continuing to support them across care transitions for months after ICU discharge (NCT03721952). A follow-up to the 2018 trial by White and colleagues21 is also planned (NCT01982877

Search strategy and selection criteria

References for this Series paper were identified through searches of PubMed, Embase, Cochrane Library, and ClinicalTrials.gov for original articles about interventions designed to facilitate communication and decision-making in adult ICU patients and their families published from Jan 1, 2008, to August 1, 2018. We used the terms “critical illness” and closely related terms in combination with “patient preference”, “family”, “communication”, and “randomized controlled trial” and their closely

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