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CRITICAL CARE AND TRAUMA

The Practice of and Documentation on Withholding and Withdrawing Life Support: A Retrospective Study in Two Dutch Intensive Care Units

Peter E. Spronk, MD, PhD^*, Alexej V. Kuiper, MSc, Johannes H. Rommes, MD, PhD^*, Joke C. Korevaar, MD, and Marcus J. Schultz, MD, PhD

From the *Department of Intensive Care Medicine, Gelre Hospitals, Location Lukas, Apeldoorn; Department of Intensive Care Medicine, Academic Medical Center, University of Amsterdam; HERMES Critical Care Group; and Department of Clinical Epidemiology and Biostatistics, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands.

Address correspondence and reprint requests to Peter E. Spronk, MD, PhD, FCCP, Department of Intensive Care Medicine, Gelre Hospitals, Location Lukas, PO Box 9014, 7300 DS Apeldoorn, The Netherlands. Address e-mail to p.spronk{at}gelre.nl.

	Abstract

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OBJECTIVE: We determined how often life support was withheld or withdrawn in patients who died in the intensive care unit (ICU) or early after ICU discharge and evaluated documentation on decisions regarding these changes in life support orders.

METHODS: This was a retrospective study in a university hospital and a general teaching hospital. Charts of patients who died during ICU stay or within 7 days after ICU discharge in 2005 were reviewed.

RESULTS: Of 2578 admitted patients, 356 patients (14%) died either in the ICU or within 7 days after ICU discharge. For 9 patients data were missing, leaving 347 patients for analysis. Seventy-seven patients (22%) died with full life support, 85 (25%) died while treatment was being withheld, and 185 (53%) patients died while treatment was being withdrawn. One or more changes in life support orders were noted in 266 patients (77%). Only 8% of the patients were recorded to be incapacitated at the time of the change. Patients’ preferences regarding life support were documented in less than one-quarter of cases. In approximately one third of cases, it was not documented which member(s) of the ICU team were involved in an end-of-life decision. In the documented cases, end-of-life decisions were made along with the patient (7%) or with the patient’s representatives (59%).

CONCLUSION: ICU nonsurvivors and patients who die shortly after ICU discharge predominantly die with orders to withhold or withdraw life support. Documentation on the decisions to forgo full life support is poor.

	Introduction

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Intensive care unit (ICU) patients may die while treatment is being either withheld or withdrawn. Although the decision to limit or forgo further treatment may at times be made by ICU patients themselves, critically ill patients frequently are not able to make or (adequately) communicate such decisions because of sedation, cognitive dysfunction, or communication barriers like endotracheal tubes.1 With advanced care planning, patient preferences regarding discontinuation of therapy may be known by surrogate decision-makers (usually the patient’s spouse or life companion) and/or treating physicians. However, advanced directives/living wills frequently do not sufficiently state when and how to discontinue treatment in specific medical conditions.2 In the majority of cases, therefore, the decision to continue (or discontinue) ICU treatment is left to the attending ICU physicians and/or other members of the ICU team.3

Documentation of medical decisions is crucial to preserve continuity inpatient care, particularly during off-hour periods. A recent study by the Dutch health inspection demonstrated that only a small percentage of necessary information was adequately recorded in the medical patient chart before surgical interventions (http://www.igz.nl/15451/475693/2007-02_Rapport_Preoperatie1.pdf). In particular, the lack of standardization of which information should be recorded in the medical chart was prominent. Although this study did not address the issues pertaining to life support orders, in particular in the ICU setting, it is possible that documentation on this item may be worse too.

In this study, we analyzed how often therapy is either withheld or withdrawn during the ICU stay in two Dutch teaching hospitals. For this analysis we collected all data of patients who died in the ICU. Because treatment and patient approach during the ICU stay could also have influenced life support orders in step-down units or normal wards, patients who died within 7 days after ICU discharge were also included in the analysis. We evaluated the preciseness of documentation on the decisions on life support orders.

	METHODS

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The clinical records of patients who were admitted to the ICU in 2005 and subsequently died during their ICU stay or within 7 days after ICU discharge were collected. As no interventions were part of the study, the need for obtaining informed consent was waived by the local ethics committee.

Study Location
The study was performed in one academic hospital (Academic Medical Center (AMC), University of Amsterdam) and one university-affiliated teaching hospital (Gelre Hospital, Location Lukas). In the AMC, the ICU comprises a 28-bed "closed unit" in which medical/surgical patients (including neurosurgery/neurology, cardiothoracic surgery, and cardiology patients) are under the direct care of the ICU team. The ICU team comprises 8 full-time ICU physicians, 8 subspecialty fellows, 12 residents, and occasionally 1 intern. In the Gelre Hospital, the ICU is a 10-bed closed unit with medical/surgical patients (as in AMC, with the exception of cardiothoracic surgery and neurosurgery patients). The ICU team comprises two full-time ICU physicians, five physicians who participate in evening and night shifts, and one resident.

Data Source
Patient data from the AMC were retrieved from the patient data management system (Metavision, iMDsoft, Sassenheim, The Netherlands). This database automatically stores patient-specific information during the complete ICU stay, including daily reports and special forms related to decisions on withholding or withdrawing life support. The reports from ICU physicians and ICU nurses, family consultations, and treatment orders were all read and documented in a separate database. In the Gelre Hospital, clinical records were only present in paper form; data similar to those mentioned above were collected. In addition, the database of the National Intensive Care Evaluation (The Netherlands, http://www.stichting-nice.nl) was used to collect baseline data of all patients.

Patient-Specific Data
The following data were collected for each patient: baseline data, such as gender, age, type of admission (acute medical, acute surgical, elective surgical), referring specialty (medical, surgical, neurosurgery/neurology, cardiothoracic surgery, cardiology, or other), severity of illness (Acute Physiology and Chronic Health Evaluation II score, Simplified Acute Physiology Score II), and length of stay. Orders on life support at ICU admission, subsequent changes in life support orders during the ICU stay, and life support orders at end-of-life were collected from the typically used forms and the daily reports. The date of change was also recorded. If no order on life support or no change in order on life support was mentioned, either on the form or in the daily reports, it was assumed that full life support was given or that life support was given according to the order at ICU admission. If a change in life support order was found, we searched for any documentation in the clinical records concerning the next five issues:

1. Which member(s) of the ICU team were involved in the decision to change orders on life support?
   
2. Were the patient and/or the patient’s representatives involved in the change in orders?
   
3. Was the change in life support preceded by psychiatric consultation?
   
4. Was the patient capable of making a decision regarding his medical treatment at the time the decision was made to change orders?
   
5. Was there knowledge of the patient’s preferences regarding life support?
   

Definitions

• "Full life support" (order "A"): all life-saving interventions were to be performed when needed.
  
• "Withhold life support" (order "B"): a decision was made not to start one or more life-saving interventions, or only with certain restrictions. Interventions withheld in both ICU departments included defibrillation for ventricular fibrillation, cardiopulmonary resuscitation, treatment of arrhythmia, treatment with vasopressors and/or inotropics, tracheal intubation and mechanical ventilation, surgery, transfusion of blood products, antimicrobial treatment, or renal replacement therapy. Interventions withheld only in the ICU of Gelre Hospital included certain diagnostic procedures (which had to be documented on the form).
  
• "Withdraw life support" (order "C"): a decision was made to actively stop all life-supporting interventions that were already being performed. This meant that modalities aimed at survival were stopped, but other modalities aiming at patient comfort were continued.
  

Statistical Analysis
The completed data were analyzed using SPSS version 12.0 (SPSS, Chicago, IL). Continuous data are expressed as medians with interquartile range and categorical data in percentages. Comparisons were made using Mann–Whitney and Kruskal–Wallis tests for continuous data and the ² test for categorical data. All tests were two-tailed, and differences with a P value <0.05 were considered significant. Data from the ICUs were analyzed separately but may be presented together.

	RESULTS

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Patients
Of 2578 patients admitted to the two ICUs in 2005, 293 patients (11%) died during the ICU stay and 63 patients (2%) died <7 days after ICU discharge. Of this group, the clinical record files of 9 were missing, leaving 347 patients for further analysis. Demographic data are summarized in Table 1. In the AMC, relatively more patients died in the ICU as compared with the Gelre Hospital (P = 0.007). Conversely, at the Gelre Hospital, a higher percentage of patients died after ICU discharge compared with the AMC (P = 0.0004). This proved to be due to a different case mix. In particular, in the AMC, 43 (86%) neurosurgical patients died in the ICU, whereas in Gelre no neurosurgery was performed. Patients who eventually died were slightly older, had a longer ICU length of stay, and had higher Acute Physiology and Chronic Health Evaluation II and Simplified Acute Physiology Score II scores than patients who survived (data not shown).

Life Support Orders on ICU Admission and Thereafter
Of 347 patients, 321 (93%) were admitted to the ICU with an order "A" and 26 (7%) with an order "B"; there were no patients who were admitted to the ICU with an order "C" (Table 2). For 266 patients (76%), one or more changes in their life support orders were made before death (Fig. 1, details are shown in Table 3). Seventy-seven patients (22%) died with an order "A," 85 patients (25%) with an order "B," and 185 patients (53%) with an order "C." The pattern of life support orders was comparable in the two ICUs. Patients who died with an order "C" had a longer ICU stay than patients who died with full support.

View larger version (22K): [in this window] [in a new window]   Figure 1. Change and type of orders over time. See text for details on "orders."

Documentation of Changes in Life Support Orders
For 85/266 patients (32%) who had one or more changes in their life support orders, it was not clear which ICU team member was involved in the decision to change the orders (details shown in Table 4). Although 21 patients (8%) were mentioned as being capable of making a decision regarding their medical treatment at the time of a change in their life support orders, only 13 (5%) of the patients were compos mentis at the time of change and actively involved in the decision-making process. For 206 patients (78%), the patient’s preference regarding life support was not reported. For 94 patients (36%), it was not reported whether a patient’s representative existed or was involved in the decision to change life support orders.

	DISCUSSION

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In this study, we found that ICU nonsurvivors predominantly die with orders for withholding or withdrawing life support. We also found that documentation on changes in life support is far from complete, and that frequently, important information was lacking.

Our results regarding withholding and withdrawing life support are in line with Sprung et al.,3,4 who demonstrated that 73% of European ICU patients die while life support is being withheld or withdrawn. In contrast, Eidelman et al.5 showed that physicians in Israel do withhold, but never withdraw life-supporting interventions, which is in accordance with Jewish law. This emphasizes the fact that withholding or withdrawing life support is strongly influenced by culture. Still, in general, the incidence of withholding and withdrawal of life support is increasing, partly because more countries are legalizing this process if specific conditions are met.6

We can only hypothesize why documentation of changes in decisions on end-of-life orders was poor in our hospitals. We may conclude this to be a reflection of bad documentation on important decisions in general. Indeed, documentation of decisions on blood transfusion, start or change of antimicrobial therapy, change of ventilatory mode, tracheal extubation, and many other important decisions in daily ICU practice is reported to be poor.7,8 However, decisions on end-of-life care are considered so important, at least from a medico-judicial viewpoint, that we expected more complete and lucid documentation. In addition, although the usual manner of documentation might be different in the general as compared with the university hospital, which is probably caused by under-staffing of intensivists in the general hospital, we believe that this should never be a reason for poor documentation of decisions over withholding or withdrawing therapy.

Bad documentation could also be due to less continuity of care, with fewer doctors in the nonacademic setting, although the absence of differences between the academic and nonacademic settings does not support this argument. Perhaps ICU physicians in our settings are too busy with direct patient care to adequately document all discussions and agreements with patients and proxies. They could also lack training or not be fully aware of the importance of strictly documenting changes in life support orders.

Decisions on end-of-life orders are influenced by the professional experience of individual ICU team members making the decision (mostly ICU physicians),9–12 and by their age,11 religious beliefs,4,5 and country or culture of origin,4,11,13–15 potentially resulting in differences between ICUs. Indeed, in Western countries, limitation of therapy precedes up to 90% of deaths, whereas in India the rate is reported to be no more than 22%–50%.4,16 However, in Western countries the legal context of end-of-life decisions may be confusing because of the lack of specific laws.17

To support the decision-making process in the face of ethical dilemmas, several countries are developing guidelines and laws.18 In particular, patients’ relatives should be informed and consulted before a decision is made, the decision should be documented in the medical charts, and finally, the decision should be made collectively.6 However, these guidelines do not include statements pertaining to documentation of decisions to forego life support. Lack of documentation may mean that the decision of whether to withdraw or withhold life support treatment is made only by the physician, without consulting the relatives. "Noninvolvement" was shown to be as high as 50% for decisions to change end-of-life orders in the study by Ferrand et al.19 Our findings regarding poor documentation of decisions to change life support orders do not necessarily relate to an insufficiently careful decision-making process. However, all patients’ life support orders should be adequately documented for evaluation and legal purposes.

There are several limitations to our study. First, our study design does not allow generalization of our findings to all ICU patients. Indeed, we only included ICU nonsurvivors and patients who died shortly after ICU discharge in The Netherlands. Second, this study was restricted to only two ICUs in The Netherlands. Results may not be generalized to other institutions, particularly those with a patient population substantially different from that of the study hospitals. We showed that proportionally more patients died in the ICU in the academic AMC setting than in the Gelre ICU, which proved to be due to differences in case mix. Nevertheless, the similarities between these two centers with regard to practices on withholding or withdrawing life support are striking, particularly in view of the fact that they represented an academic and a nonacademic, albeit university-affiliated, teaching setting. This at least suggests that the situations in other hospitals in The Netherlands may be similar to those in our centers.

In conclusion, ICU nonsurvivors in The Netherlands die predominantly with orders to withhold or withdraw life support. Documentation of these decisions is poor and inconsistent, however, and deserves more attention from attending physicians for evaluation and legal purposes.

	Footnotes

 
Accepted for publication March 17, 2009.

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