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Brief review: Practice variation in end of life care in the ICU: implications for patients with severe brain injury

[Revue sommaire de la variation des soins aux mourants dans les USI : implications pour les patients atteints de lésion cérébrale sévère]

Graeme M. Rocker, DM MHSc^*, Deborah J. Cook, MD MSc and Sam D Shemie, MD

^* From the Department of Medicine, Dalhousie University, Halifax, Nova Scotia; the
Departments of Medicine & Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario; and the
Division of Pediatric Critical Care, Montreal Children’s Hospital, McGill University Health Centre, Montreal, Quebec, Canada.

Address correspondence to: Dr. G.M. Rocker, Professor of Medicine, Dalhousie University, #4457, Halifax Infirmary, 1796 Summer St., Halifax, Nova Scotia B3H 3A7, Canada. Phone: 902-473-6611; Fax: 902-473-6202; E-mail gmrocker{at}dal.ca

	Abstract

TOP Abstract Introduction End of life care... Predicting mortality Relationships with patients and... Establishing cardiopulmonary... Withdrawal of mechanical... Summary: providing quality end... References

 
Purpose: To review end of life care issues in the intensive care unit (ICU) and how practice variation might affect the ultimate outcome of acute brain injury.

Sources: Bibliographic literature search and personal files.

Findings: In Canada, 10–20% of critically ill adults die in the ICU. Many of these deaths follow acute brain injury in the setting of clinical deterioration, life support limitation and brain death. This brief review addresses some key elements of end of life care for critically ill brain injured patients, including family interactions, making survival predictions, and factors influencing decision-making about cardiopulmonary resuscitation and withdrawal of mechanical ventilation.

Conclusions: Provision of compassionate high quality end of life care should be standard of practice for brain injured and all other critically ill patients who cannot survive. Inconsistencies in end of life care may affect where, when and how patients die, the quality of their death and whether or not they are considered for organ and tissue donation.

	Introduction

TOP Abstract Introduction End of life care... Predicting mortality Relationships with patients and... Establishing cardiopulmonary... Withdrawal of mechanical... Summary: providing quality end... References

 
IN Canada, 10–20% of critically ill patients die in adult intensive care units (ICUs).¹ Death is typically declared according to cardiac or neurological criteria. A cardiac declaration of death occurs in three ways: 1) despite full treatment, patients suffer a cardiac arrest and cardiopulmonary resuscitation (CPR) is unsuccessful; 2) despite full treatment, patients suffer cardiac arrest and no attempt at CPR is made; 3) decisions are made to limit life support, some treatment is withheld or withdrawn, the patient suffers a cardiac arrest (usually expected), and no attempt at CPR is made. For a fourth group of patients, a neurological declaration of death is made (brain death). Brain death usually follows progressive and irreversible neurological decline in a setting of traumatic or vascular brain injury. In one large Canadian retrospective study, 8.4% of deaths were due to brain death.²

The true incidence of brain injury and of brain death across Canada is unknown, since research is limited and there is no mandatory reporting mechanism. Cerebrovascular accidents and traumatic brain injury are the most common conditions that ultimately lead to brain death in adults³ and children.⁴ In the Calgary Health Region, the incidence of severe traumatic brain injury is 11.4 per 100,000 and mortality is 5.1 per 100,000.⁵ Mortality from motor vehicle accidents has declined with the introduction of seat belt laws and increased helmet use (http://www.urbanfutures.com/research.html), associated with a presumptive corresponding decrease in the incidence of brain death. In the absence of national Canadian data that describe the natural history of severe brain injury, it is not possible to accurately predict who will die and who will survive with severely impaired neurological function. Moreover, many patients with severe brain injury also develop non-neurological organ dysfunction which itself is associated with increased mortality. ⁶ For patients with severe neurological impairment who fail to respond to neuroprotective measures and resuscitation, the possibility of withdrawal of life support is often discussed with families.⁷ This review addresses some key elements of end of life care in the ICU, and outlines how practice variation might affect the process of care and ultimate outcome of patients with acute brain injury.

	End of life care in the ICU: variations in processes of care

TOP Abstract Introduction End of life care... Predicting mortality Relationships with patients and... Establishing cardiopulmonary... Withdrawal of mechanical... Summary: providing quality end... References

 
Two Canadian studies documented that 65%⁸ to 79%¹ of ICU deaths followed withdrawal or withholding of treatment. In a provincial registry in which approximately 20% of patients were admitted with primary traumatic or vascular brain injury, preferences to withhold rather than to withdraw treatment were influenced by whether the setting was an academic or community centre.⁹ In a USA study involving 131 centres, the rates of life support limitation preceding death ranged from 0% to 79%.¹⁰ This practice variation cannot be explained by patient demographics alone; recently, many factors that influence the administration and forgoing of life support have been examined. For example, a self-administered survey of 1,300 Canadian ICU nurses and physicians asked respondents, in the absence of patient or family directives, to indicate the level of care they would recommend for patients described in case scenarios.¹¹ There was striking variability in responses. In eight of 12 scenarios, more than 10% of respondents chose care at the opposite ends of the treatment spectrum, ranging from palliation to full life support. While some of the variation in end of life care in the ICU can be explained by patient factors such as illness acuity, advance directives, and patient preferences, variation in the level of care chosen may reflect simply the preferences and values of the involved physicians.^9,12,13 Different specialists use different probabilities of survival to invoke mechanical ventilation or CPR, which has been documented both in hypothetical scenarios in surveys¹⁴ and in clinical settings.¹⁵ Additional physician factors that influence processes of care include age, experience, religion, subspecialty, and setting (academic vs community centre, and open vs closed ICU).^9,12,13,16 Physicians also make different choices about comfort medications¹ and how mechanical ventilation is withdrawn.¹⁷ These biases potentially influence the framing of discussions with families, the decisions about CPR and whether to formally withhold or withdraw mechanical ventilation. For patients with brain injury, a decision to withdraw life support in advance of criteria for a neurological declaration of death determines whether or not organ donation is pursued.¹⁸

	Predicting mortality

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The ability to make an accurate prediction of mortality is an important aspect of any end of life discussion. Efforts to make accurate predictions for patients with brain injury to reduce overly optimistic or pessimistic predictions date back several decades.^19,20 Recent publications have focused on the utility of somatosensory evoked potentials, both in adults²¹ and in children²² and in brain injury of traumatic or of ischemic anoxic origin.²³ When the prognosis is dismal, a planned withdrawal of life support will often reflect the fact that continuation of treatment is seen simply as an unwarranted and unfortunate delay of a natural death. This notwithstanding, physicians have a tendency to be overly pessimistic when they make predictions for ICU patients.^24,25 In the international Level of Care study,²⁵ daily predictions of survival were made for 851 mechanically ventilated patients (including 130 with central nervous system disease) expected to remain in ICUs for > 72 hr. In addition to overestimating probability of death, physician predictions of a < 10% probability of survival was associated with the provision of less intensive care, and a significantly higher odds of withholding or withdrawal of life support modalities.²⁵

For neurosurgical patients, a recent Canadian study has also documented variable reliability in predicting the outcomes in patients presenting to Ontario emergency departments with acute brain injury.²⁶ For such patients, a similar pessimistic attitude of physicians can prevail. Despite predictions of mortality among 87 patients presenting with subarachnoid hemorrhage and an intracerebral hemorrhage volume of > 60 mL and Glasgow coma score of < 8, several survived hospital and some achieved functional independence.²⁷ In this study, 17% of substitute decision makers thought that a decision to withdraw life support was made prematurely. ²⁷ These investigators also found that neurologists and neurosurgeons differed in the intensity with which they approached the same type of clinical problem within one institution, again highlighting the variable care that patients may receive according to where and by whom they are cared for.²⁷ Others have found influences on outcome according to whether patients are admitted to a general or to a neurosurgical ICU²⁸ or whether surgical intervention is early or delayed,²⁹ in the use of induced hypothermia, seizure medications, paralytic agents,³⁰ use of intracranial monitoring,^30,31 or according to physician prediction of severely impaired future cognitive function.³²

	Relationships with patients and families

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The importance of human relationships in ICU care was highlighted 20 years ago in this quote from a UK theologian: "The success of intensive care is not, therefore to be measured only by the statistics of survival, as though each death were a medical failure. It is to be measured by the quality of lives preserved or restored; and by the quality of the dying of those in whose interest it is to die; and by the quality of human relationships involved in each death."³³

Patients themselves remind us of our failings as professionals working in stressful environments where too easily we set aside the importance of human relationships. ³⁴ For families facing the impending death of a loved one, clinicians underestimate the levels of anxiety and depression that family members experience. ³⁵ When death approaches and consideration of organ and tissue donation becomes a reality, how we interact with families may be a key determinant of how events proceed. It is crucially important to understand whether and how families wish to participate in decision-making. In Canada, families report preferring shared decision-making.³⁶ Honesty, completeness of information and compassion shown to family members are important predictors of family satisfaction with intensive care.^37,38 In France, where a more parental approach by physicians has prevailed, about half of families visiting patients in the ICU do not wish to participate in decision-making.³⁹ In both these Canadian and French studies, families identified the need for improved physician communication.^37,40 Others have since demonstrated that this involves listening more and speaking less.⁴¹ while ensuring management plans are shared with all members of the multidisciplinary team.⁴²

The multidisciplinary team approach has been shown to benefit patients with acute brain injury, both acutely⁴³ and during rehabilitation.⁴⁴ For example, hospital mortality and the duration of stay were lower after the introduction of a specialized neurocritical care team.⁴³ For patients dying in the ICU, how we approach their families and how we frame discussions about end of life care will influence outcomes and the mode of death for these patients. In the final analysis, the mode of death (with or without a withdrawal of life support) will determine who may be eligible for organ donation and who will not.

	Establishing cardiopulmonary resuscitation directives

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In the Level of Care Study, among 2,916 eligible ICU patients, the time of admission, type of ICU and centre were as important as traditional biomedical factors in determining whether or not CPR directives were established in the first 24 hr of ICU admission, and what those directives were.⁴⁵ Only 11% of patients had explicit CPR directives established within the first 24 hr. Residents in the ICU established the largest proportion of the directives and significantly more directives were established at night and at weekends. Ideally, the crucial decision to resuscitate a patient should not be dependent on the serendipity of the admitting team, or the hospital, or the centre to which patients are admitted.

	Withdrawal of mechanical ventilation

TOP Abstract Introduction End of life care... Predicting mortality Relationships with patients and... Establishing cardiopulmonary... Withdrawal of mechanical... Summary: providing quality end... References

 
Mechanical ventilation is the most common form of advanced life support used in the ICU. Mechanical ventilation is the most frequent life support withdrawn from critically ill patients, and often precedes death in the ICU. Many factors, including patient age, illness severity, chronic health, patient wishes, and past and future quality of life influence decisions to withhold and withdraw life support. In an international observational study to examine the determinants of withdrawal of mechanical ventilation, 851 mechanically ventilated adult patients predicted to stay in 15 ICUs for at least 72 hr were followed prospectively.³² Of the 851 patients, 63% were successfully weaned, 17% died while mechanically ventilated and 20% had mechanical ventilation withdrawn. Rather than age, illness severity and organ dysfunction, the three strongest predictors of ventilator withdrawal were 1) central nervous system disease; 2) physician prediction of less than 10% probability of survival; and 3) physician perception of patient preferences to limit life support.

For patients with brain injury, in a study from the USA involving 2,109 patients, two factors made it 50% less likely that withdrawal of mechanical occurred among patients admitted to a neurology/neurosurgery unit. These factors were an African-American background (odds ratio 0.50, confidence interval 0.36–0.68) and whether a neurosurgical operation had occurred (odds ratio 0.44, confidence interval 0.2– 0.67).⁴⁶ Together, the results from these two major studies question the traditional biomedical model of withdrawal of life support that focuses on patient age and physiologic determinants such as worsening organ function. While findings in the Canadian study²⁹ suggest a life support withdrawal process today that is attentive to patient values, these values are not necessarily concordant with family members’⁴⁷ and physicians’⁴⁸ perceptions of those wishes. This in itself should encourage subsequent research in end of life care for critically ill patients to focus on interactions with families and precisely how we elicit and honour patient preferences.

	Summary: providing quality end of life care for all ICU patients

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Regardless of site, city, centre or physician, providing consistent, compassionate high quality end of life care should be a standard of practice in ICUs. The trend towards more family-centered care for critically ill patients is encouraging but not in itself sufficient.⁴⁹ Outside of Canada there is a body of evidence to suggest that end of life care in the ICU falls short of these standards, leading to calls for better palliation.^50,51 The situation in Canada appears more encouraging with families reporting that most patients die in comfort in the ICU¹⁷ and that the families themselves feel supported during the dying process.³⁷ However, inconsistencies in end of life care practices may affect where patients die, how they die, the quality of that death^52,53 and whether or not patients are considered for organ and tissue donation in the ICU.¹⁸ These practice variations lead to concerns about decision-making that determines access to ICUs for the purposes of prognostication and treatment²⁶ which may in turn influence outcome for brain injured patients, and the quality of their end of life care. Care does not stop with a neurological declaration death after brain injury. It must continue in how we honour the wishes of deceased patients undergoing organ donation, and in the care we provide to families of the deceased as bereavement begins.

	Footnotes

 
Accepted for publication August 23, 2005. Revision accepted February 17, 2006.

Competing interests: None declared.

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This Article Abstract Résumé de cet Article Full Text (PDF) Submit a scholarly reply Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Rocker, G. M. Articles by Shemie, S. D Search for Related Content PubMed PubMed Citation Articles by Rocker, G. M. Articles by Shemie, S. D