573901 editorial2015

PMJ0010.1177/0269216315573901Palliative MedicineEditorial

Editorial Palliative Medicine 2015, Vol. 29(4) 291­–292 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315573901 pmj.sagepub.com

Palliative care in critical illness: Challenges for research and practice The intensive care unit (ICU) is a setting where death is— unfortunately—common. In the United States, approximately 20% of deaths occur in or shortly after a stay in the ICU, and the proportion of deaths that involve an ICU stay seems to be increasing.1,2 Of the deaths that occur in the ICU, the majority involve decisions to withhold or withdraw life-sustaining treatments,3,4 raising important issues of addressing and discussing the goals of care, as well as supporting patients and family members through this process. There is a significant burden of stress and distress among family members of patients who die in the ICU, with high levels of symptoms of anxiety and depression and posttraumatic stress disorder (PTSD).5 There is also evidence that the behaviors of ICU clinicians and the structure of ICU care can influence these symptoms.6 Furthermore, there is a significant burden of stress and distress among family members of patients who survive,5 as well as among the surviving patients themselves.7 For all these reasons, palliative care has an important role to play in the ICU, supporting patients (those who die in the ICU and those who survive) and their family members, as well as the ICU clinicians who work in this intense environment. The past 25 years have seen a substantial increase in the attention paid to palliative care in the ICU setting. Once a “fringe topic” at critical care congresses with small audiences, palliative care sessions are now commonplace with large numbers of attendees. Consensus statements from most major critical care societies emphasize the importance of palliative care in the ICU setting.8,9 Skills in palliative care are accepted as part of the essential competence for ICU clinicians.10 Despite this remarkable progress in 25 years, many challenges remain. While we have characterized the problems of poor quality palliative care in the ICU, we have made much less progress in identifying effective and cost-effective interventions to address these problems. There have been some important successes in fielding palliative care interventions. Lautrette et al.6 showed that an interdisciplinary ICU family conference along with a bereavement pamphlet resulted in substantial reductions in symptoms of anxiety, depression, and PTSD among

family members of patients who died in the ICU. This is an excellent example of “primary palliative care”— improving palliative care provided by ICU clinicians. However, this relatively simple intervention may be difficult to replicate in other ICUs where the baseline quality of communication with family members may have been improving over time. There have been at least eight before–after studies of routine palliative care consultations in the ICU that, overall, have shown reductions in length of stay for patients who died in the ICU, suggesting a reduction in unnecessary prolongation of dying.11 These studies suggest that routine palliative care consultation in the ICU can have important benefits, but identifying the right patient population and ensuring adequate staffing of the palliative care consultation service can be a major challenge in many centers. In addition, while access to routine palliative care consultation is an important part of the solution, it seems likely that the full solution will require improved primary palliative care by the ICU team as well. Few critical care or palliative care clinicians think we can address palliative care in the ICU by turning this issue over completely to palliative care specialists. There have also been several examples of ICU-based interventions that had promising results in a single-center study, but that could not be replicated in multi-center studies. For example, a proactive family conference by ICU clinicians was associated with significant reductions in length of stay for patients who died,12 but then could not be replicated in a multi-center study.13 Similarly, a multifaceted quality improvement project designed to improve palliative care in the ICU using a single-center before– after design14 showed promising results that could not be replicated in a multi-center cluster-randomized trial.15 One possibility is that these initial single-center studies gave misleading results. However, a more plausible explanation is that successful interventions to improve palliative care that are developed and implemented successfully in a single center are often difficult to generalize to other centers. Just as “all politics are local,” perhaps improving palliative care in the ICU similarly requires understanding the local environment. One of the major challenges for documenting improvements in palliative care in the ICU setting is identifying reliable, valid, and responsive outcome measures. It is no

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accident that most of the “positive studies” have focused on ICU length of stay for patients who died. This outcome is easy to measure and relatively easy to improve. However, it is profoundly limited as a marker of the patient and family experience in the ICU. Other outcome measures—such as satisfaction with care and quality of dying—have been developed and validated, but have not yet been shown to be responsive to interventions and have significant challenges as single-construct outcome measures.16 Symptoms of anxiety, depression, or PTSD have been used successfully to demonstrate improved palliative care in the ICU,6 but also have important limitations as measures of quality of care in the ICU and are often not feasible for small studies or quality improvement projects. Despite the tremendous progress we have made in advancing palliative care in the ICU setting, much remains to be done. First, we need to find the right balance of utilizing palliative care consultants in the ICU and ensuring that ICU clinicians have basic palliative care skills to work with all critically ill patients and their families. Identifying and implementing this “right balance” will undoubtedly vary somewhat from hospital to hospital, but we need to put forth (and evaluate) some principles of best practices that go beyond a single institution. Second, to develop and implement interventions that improve key components of palliative care—such as communication, identifying the goals of care, shared decision-making, supporting patients and families—these interventions must be modifiable to adapt to the specific culture and “local politics” of individual ICUs. And yet, there must be core components that transcend the local environment to ensure all critically ill patients and their family members have access to highquality palliative care. Finally, we need to continue to work to develop and evaluate outcome measures that will be reliable, valid, and responsive to interventions. We will likely need a menu of outcome measures from which we can select the most appropriate measures for a wide range of interventions as well as diverse study designs that include singlecenter quality improvement projects through to multi-center randomized trials. Our progress has been impressive: I find I no longer need to defend the importance of the topic of “palliative care in the ICU.” However, we are not at a place where we can point to the practical and scalable interventions that we know make a difference and set about the work of ensuring those interventions are implemented in all ICUs. This is where we need to be after the next 25 years.

and health care transitions in 2000, 2005, and 2009. JAMA 2013; 309: 470–477. 3. Quill CM, Ratcliffe SJ, Harhay MO, et al. Variation in decisions to forgo life-sustaining therapies in US ICUs. Chest 2014; 146: 573–582. 4. Sprung CL, Cohen SL, Sjokvist P, et al. End-of-life practices in European intensive care units: the Ethicus Study. JAMA 2003; 290: 790–797. 5. Davidson JE, Jones C and Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med 2012; 40: 618–624. 6. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 2007; 356: 469–478. 7. Long AC, Kross EK, Davydow DS, et al. Posttraumatic stress disorder among survivors of critical illness: creation of a conceptual model addressing identification, prevention, and management. Intensive Care Med 2014; 40: 820–829. 8. Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American Academy of Critical Care Medicine. Crit Care Med 2008; 36: 953–963. 9. Lanken PN, Terry PB, Delisser HM, et al. An official American Thoracic Society clinical policy statement: palliative care for patients with respiratory diseases and critical illnesses. Am J Respir Crit Care Med 2008; 177: 912–927. 10. Buckley JD, Addrizzo-Harris DJ, Clay AS, et al. Multisociety task force recommendations of competencies in Pulmonary and Critical Care Medicine. Am J Respir Crit Care Med 2009; 180: 290–295. 11. Aslakson R, Cheng J, Vollenweider D, et al. Evidencebased palliative care in the intensive care unit: a systematic review of interventions. J Palliat Med 2014; 17: 219–235. 12. Lilly CM, De Meo DL, Sonna LA, et al. An intensive communication intervention for the critically ill. Am J Med 2000; 109: 469–475. 13. Daly BJ, Douglas SL, O’Toole E, et al. Effectiveness trial of an intensive communication structure for families of longstay ICU patients. Chest 2010; 138: 1340–1348. 14. Curtis JR, Treece PD, Nielsen EL, et al. Integrating palliative and critical care: evaluation of a quality-improvement intervention. Am J Respir Crit Care Med 2008; 178: 269–275. 15. Curtis JR, Nielsen EL, Treece PD, et al. Effect of a qualityimprovement intervention on end-of-life care in the intensive care unit: a randomized trial. Am J Respir Crit Care Med 2011; 183: 348–355. 16. Curtis JR, Downey L and Engelberg RA. The quality of dying and death: is it ready for use as an outcome measure? Chest 2013; 143: 289–291. J Randall Curtis

Declaration of conflicting interests

Cambia Palliative Care Center of Excellence, Division of Pulmonary and Critical Care Medicine, Harborview Medical Center, University of Washington, Seattle, WA, USA

The author has no financial conflicts of interest.

References 1. Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med 2004; 32: 638–643. 2. Teno JM, Gozalo PL, Bynum JP, et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care,

Corresponding author: J Randall Curtis, Cambia Palliative Care Center of Excellence, Division of Pulmonary and Critical Care Medicine, Harborview Medical Center, University of Washington, Box 359762, 325 Ninth Avenue, Seattle, WA 98104, USA. Email: [email protected]

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Palliative care in critical illness: challenges for research and practice.

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