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Documentation on Withdrawal of Life Support in Adult Patients in the Intensive Care Unit

	Abstract

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• Background Patients’ charts have been a source of data for retrospective studies of the quality of end-of-life care. In the intensive care unit, most patients die after withdrawal of life support. Chart reviews of this process could be used not only to assess the quality of documentation but also to provide information for quality improvement and research.

• Objective To assess the documentation of end-of-life care of patients and their families by care providers in the intensive care unit.

• Method Charts of 50 adult patients who died in the intensive care unit at a large midwestern hospital after initiation of withdrawal of life support (primarily mechanical ventilation) were reviewed. A form developed for the study was used for data collection.

• Results The initiation of the decision making for withdrawal was documented in all 50 charts. Sixteen charts (32%) had no information on advance directives. Eight charts (16%) had no documentation on resuscitation status. About two thirds of the charts documented nurses’ participation during the withdrawal process; only one tenth documented physicians’ participation. A total of 13 charts (26%) had no information on the time of initiation of the withdrawal process, and 11 (22%) had no documentation of medications administered for withdrawal. Thirty-seven charts (74%) had information on whether the patient was or was not extubated during withdrawal.

• Conclusion Comprehensive documentation of end-of-life care is lacking.

Chart reviews have been used to study issues related to withdrawal of life support in the intensive care unit (ICU). The proportion of deaths in ICUs that occurred during or after withdrawal of life support was assessed in some studies.^9,14–16 Chart reviews were used to ascertain factors responsible for decisions to withdraw mechanical ventilation from adults and children.^14,17 Hall and Rocker⁹ investigated differences in the use of technology, pharmacological management, and physician management between patients who died after withdrawal or withholding of life support and patients who died with active life support. Daly et al¹⁸ determined the frequency of different methods of withdrawal of mechanical ventilation in terminal patients.

In the study reported here, we assessed the completeness and comprehensiveness of documentation by care providers in the ICU of end-of-life care. We defined withdrawal of life support as the process of discontinuing life support such as mechanical ventilation that allows a patient’s disease or diseases to take a natural course leading to the patient’s death. The withdrawal process encompassed the interactions between patients, patients’ families, and healthcare providers that occurred before, during, and after withdrawal of life support. The term care provider refers to physicians, nurses, chaplains, and social workers.

	Method

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Sample
The charts of 50 patients who died in the ICU at a large level I trauma center in the Midwest were reviewed. Patients’ charts were included in the study if (1) mechanical ventilation was stopped as part of withdrawal of life support and (2) death occurred between August 2000 and July 2001. Charts of patients who died but did not have withdrawal of life support were excluded. A list of patients who had died in the ICU was obtained from the Acute Physiology and Chronic Health Evaluation database. During the specified period, 186 patients died in the ICU. Fifty charts was chosen as the sample size because we thought that about one fourth of the total number of annual deaths in the ICU would be large enough to encompass the potential variation in the ICU patients and care providers. The 50 charts were accessed from the medical record department. Charts were not randomly selected; instead, charts were retrieved as available until a total of 50 was reached.

Procedure
Permission to access and review the charts was granted by the institutional review board. The study was reviewed as low risk.

A ventilator withdrawal documentation form was developed for data collection. Information was collected on decisions on resuscitation and withdrawal of life support; care of families by physicians, nurses, chaplains, and social workers; documentation of date and time of initiation of withdrawal and of death; drugs used for comfort; and so on.

The development of the form was iterative, thereby increasing reliability and content validity. The first version of the form was developed after 1 chart was reviewed. Items on the form were then modified, and the revised form was tested by reviewing 6 more charts. A nurse-researcher and an ICU physician (intensivist) working at a different university hospital also reviewed the form and gave suggestions.

Three graduate students in nursing collected data. The student who was extensively involved in developing the form trained the other 2 students in using the form. Interrater reliability was 100% between the trainer and one student (1 chart compared) and 96% between the trainer and the other student (2 charts compared).

Definitions
In this study, poor prognosis was defined as a condition associated with a high probability of death. The term deteriorating condition was used to indicate a progressive worsening of a patient’s condition that predisposed the patient to death. The term immediately before withdrawal of life support indicated the period immediately before initiation of discontinuation of life support such as mechanical ventilation, medications, nutrition, and so on that allows a patient’s disease or diseases to take a natural course that usually leads to death.

	Results

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Characteristics of the Patients
About half (52%) of the 50 decedents were women (Table 1). The decedents were 21 to 88 years old; most (88%) were older than 40 (mean age, 60.1 years; SD, 16.86). A total of 47 patients (94%) were white; this percentage corresponds to the percentage of whites living in the area. The mean hospital stay was 13.74 days (SD, 16.87; range, 1–84).

Decisions to Withdraw Life Support
Physicians initiated the decision making to withdraw life support in 40 patients (80%); the families of 3 of the 40 patients initially did not support the physician’s opinion to discontinue life support (Table 2). The physicians of 1 of the 40 patients decided to discontinue life support without consulting the patient’s family because the patient was estranged from his family.

Important Information About the Withdrawal Process
A total of 35 charts had documentation of the participation of care providers (nurses in 34 and physicians in 7) in the withdrawal of life support. Almost one fourth of the charts (n = 11) had no record of the date and time of initiation of withdrawal of life support; 2 charts had only the date and not the time. Duration of time from the initiation of withdrawal of life support until death (available from 44 charts) ranged from 3 to 1050 minutes (mean, 133.16 minutes; SD, 210.72). Date and time of expiration were not documented in 1 chart. Documentation on whether the patient continued to be intubated or was extubated during withdrawal of life support was present in 37 charts (Table 3). Nine patients continued to have endotracheal intubation even after withdrawal of life support.

Comfort Medications
The charts indicated that many patients (n = 39) received comfort medications during the withdrawal process. A third of all patients received 2 drugs. For the 39 patients who received comfort medications, the charts of 37 indicated the dosage and frequency of the drugs; the charts of the remaining 2 had only a note about morphine infusion. Of the 50 charts, 35 indicated that the patients received morphine. Other drugs administered included fentanyl, lorazepam, midazolam, propofol, and hydromorphone.

Presence of a Physician With Patients’ Families
One patient was estranged from his family; hence his chart was excluded from analysis for items concerning patients’ families. The presence of a physician with patients’ families during withdrawal of life support was documented in only 11 charts. Documentation of a physician’s presence with patients’ family members after withdrawal of life support was minimal as well (n = 4 charts). Only 3 charts had documentation indicating that physicians prepared patient’s families for the withdrawal process.

Presence of a Nurse With Patients’ Families
Only 7 charts had data on the presence or absence of a nurse with the patients’ families during withdrawal of life support. None of the charts had documentation of nurses’ presence with patients’ family members after withdrawal of life support.

Presence of Patients’ Families at the Bedside During Withdrawal of Life Support and After the Patients’ Deaths
A total of 37 charts had documentation of the presence of patients’ families at the bedside during withdrawal of life support. According to the charts, 33 families chose to be present during withdrawal of life support, and 4 families chose not to be present. Eight charts had documentation of the presence of patients’ families at the bedside after the death of the patients. One chart had documentation that the patient’s family was not present at the bedside after the patient’s death.

Care of Patients’ Families by Nurses During the Withdrawal Process
Thirteen charts had data on the care of the patients’ families by nurses. Among these, providing support to the family was widely documented (n = 8 charts), whereas other types of family care such as explaining plan of withdrawal (n = 3), procedures performed (n = 3), medications administered (n = 1), equipment used (n = 1) and care provided to the patient (n = 3) during the withdrawal process were infrequently documented.

Advance Directives
More than half of the charts (n = 34) had documentation about advance directives; of these, 17 indicated that the patient had an advance directives and 17 indicated that the patient did not. The majority of the patients (n = 15) with advance directives had durable power of attorney for health care. Among the 17 charts of patients without advance directives, 9 had documentation that the withdrawal of life support measures was in accord with the patients’ preexisting wishes; the other 8 had no such documentation. Patients’ spouses (n = 5) and children (n = 4) were the source of information on the patients’ preexisting wishes. An absence of agreement between the patient’s advance directives and his treatment was documented in 1 patient’s chart.

Interactions of Patients’ Families With Social Workers and Chaplains
A total of 9 charts had documentation of interactions between patients’ families and social workers, and 22 charts reported interactions between patients’ families and chaplains. The family of 1 patient declined when offered the services of a chaplain.

	Discussion

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Documenting the care provided to patients and their families during the withdrawal of life support has multiple uses. The information helps us understand how decisions were made, indicates the care provided, and probably can be used to assess the quality of care. Although documentation of care is required, such documentation does not always occur.^3,9,11,13,19 Studies^2,20–22 to improve documentation of care in clinical settings have been conducted.

Care providers may provide good care but poorly document it. This fact is underscored in a study by Sulmasy et al,²³ who reviewed the charts of patients with DNR orders. The results indicated that the care concerns of patients, house officers, and nurses were accurately represented, whereas those of physicians were not. Hence, judgment of care most likely should not be based on an assessment of the quality of documentation.

Normally, a DNR order is written before withdrawal of life support; otherwise, other members of the healthcare team could inadvertently initiate resuscitation of a patient after withdrawal of support. Documenting such information would help communicate a uniform message to all staff in the unit. In a study by Simpson,²⁴ DNR orders were verbal in about a fourth of the study sample.

Manara et al²⁵ identified quality-of-life consideration (50%), imminent death (45%), and lethal conditions (5%) as reasons for withdrawing life support in ICU patients. In our study, a decision to withdraw life support was initiated by the physicians in the majority of cases. Poor prognosis, deteriorating condition, poor neurological function, the patient’s preexisting wishes, and advance directives were important reasons for the physicians’ decisions. Inclusion of patients’ wishes and advance directives indicates a positive practice, because many physicians would like to make the decision to discontinue life support on their own.^26,27 Importantly, in our study, the physicians’ decision to withdraw life support was not supported by the families of 3 patients. Recognizing that such disagreements may occur is important, and detailed documentation is helpful to care providers for legal purposes.

The families of a few patients initiated the discussion for withdrawal of life support and were supported by the patients’ physicians. The families’ documented reasons for initiating the decision were similar to those of physicians. Sjokvist et al²⁶ conducted a survey on decision making in withdrawal of life support in incompetent patients. The results indicated that most of the public and nurses thought that the decision should be made jointly by patients’ families and the patients’ physicians. In contrast, many physicians thought that physicians should be the sole decision makers.

Advance directives influence decisions to withdraw life support. Only a single chart documented an absence of agreement between the treatment that the patient received and the patient’s advance directive. This discrepancy is a major concern for both patients and care providers, and efforts should be made to resolve such conflicts in a professional manner. For patients without advance directives, care providers may need to carefully assess how knowledgeable the patients’ families are of wishes informally expressed by the patients. Consideration of such wishes by the care providers would indicate respect for patients’ choices.

Ideally, each patient’s chart should have a complete documentation of the end-of-life care given by all care providers who participated in the withdrawal of life support. Complete documentation enables healthcare providers and hospitals to have a legal document on care provided to each patient and the patient’s family during the final phase of the patient’s life in the ICU. In our study, about three fourths of the charts had documentation of the presence of at least 1 care provider. Among these, the number of charts with documentation on the participation of nurses was greater than the number with documentation on the participation of physicians. Consequently, the question that arises is, compared with the physicians, did the nurses participate more actively in the process or were they more active in charting?

Physicians, nurses, respiratory therapists, social workers, and chaplains have different roles to play during the decision-making process to discontinue life support and during the withdrawal process. The care providers who actively participate in the decision making should be patients’ physicians, nurses, and social workers. During the withdrawal of life support, physicians, nurses, and respiratory therapists are more actively involved than are other care providers in the care of patients.

Although ideally physicians would be present during the withdrawal process, they need not be present the entire time. Physicians have some critical duties to perform, such as providing information about a patient’s progress and prognosis to the patient’s family, initiating the decision-making process regarding discontinuing life support, preparing patients’ families for withdrawal of life support, and managing discontinuation of life support.

Nurses play a role during the withdrawal of life support that includes providing and reinforcing information about a patient’s progress and prognosis to the patient’s family; participating in the decision-making process regarding the discontinuation of life support; assessing and offering support to patients’ families before, during, and after discontinuation of life support; preparing patients’ families for discontinuation of life support; and managing or coordinating with physicians during discontinuation of life support.²⁸ Depending on their past experiences and comfort levels, nurses can comfortably function as case managers of the whole end-of-life care process, with minimal involvement of physicians.

Documentation of the date and time of initiation of withdrawal of life support and of the time of death is important for quality improvement and legal purposes. Data on the variation in the length of time between initiation of withdrawal of life support and occurrence of death is useful so that quality improvement personnel can assess how differences in the length affect the quality of care provided to patients and patients’ families. Quality improvement personnel can also focus on the role of care providers in offering support to patients’ family members.

In our study, the time between discontinuation of life support and the occurrence of death varied widely. When the time is longer, it becomes imperative for care providers to continue to monitor and ensure the comfort of the patients and patients’ families. Commonly, when the time between discontinuation of life support and the occurrence of death increases, patients and their families tend to be left alone by the care providers. In a study by Campbell et al,²⁹ the mean duration of survival after discontinuation of life support was 14.9 minutes.

Our findings show the variation in whether patients are extubated or left intubated when life support is withdrawn.^30–32 A fourth of the charts did not have documentation on whether or not patients were extubated. Among the charts with documentation, many indicated that the patients had been extubated. Interactions between an intubated patient and the patient’s family may differ from interactions between an extubated patient and his or her family.

In addition, the time of extubation should be considered, because patients are sometimes extubated at the end of the withdrawal of life support, immediately before death. Extubated patients have more respiratory sounds for which their families should be prepared. On the other hand, intubation interferes with close and more natural interaction between families and their loved ones.

About three fourths of patients in our study received medications for comfort, and morphine was the most commonly used drug. Faber Langendoen,³⁰ Mayer and Kossoff,³² and Keenan et al³³ found that opioids (morphine and fentanyl) and benzodiazepines were mainly used for withdrawal of life support. Importantly, only a third of the charts in our study had documentation of 2 drugs being administered for comfort; however, more patients may have received 2 drugs. Usually, a sedative and an analgesic are administered for maximum comfort at the end of life.

A few charts had no data on the dosage and frequency of the drugs administered. This finding is important because if a patient does not die soon after discontinuation of life support and is transferred to a different unit or institution, lack of documentation could reduce the information available for decision making in the receiving unit or institution. A possible reason for the lack of documentation is use of an electronic system for delivery of narcotic medications in which medication is delivered from the system only after a patient’s information is entered. This system helps the hospital or the ICU account for narcotics used in the unit. Another possible reason is that the nurses thought that the patient would die anyway and thus accurate documentation was not necessary. However, the documentation of medications administered before life support was discontinued was comprehensive.

Assessments of the patients’ need for comfort medications were not documented in half of the charts. Questions can be raised as to why comfort medications were administered when assessments indicating their need were not documented.

Care of patients’ families by care providers before, during, and after withdrawal of life support is an important part of healthcare. Truog et al³⁴ recommended that care providers prepare patients’ families for the withdrawal process, but in our study, most charts had no documentation of preparation of patients’ families. Preparing a patient’s family members for discontinuation of life support may help prepare them for what to expect as the patient progresses to death and may help them cope with the experience.³⁵

In our study, only some charts had documentation on the participation of physicians and nurses in withdrawal of life support and on the presence of these care providers with patients’ families during and after the withdrawal of life support. Because nurses normally spend considerable time with patients and patients’ families, it is surprising that only a few charts documented the nurses’ presence with families. However, this finding may not indicate that nurses are providing poor care to patients’ families; it could be solely an indication of the lack of documentation of nursing care.

Care of patients’ families and patients at the end of life by chaplains and social workers was documented in some charts. Chaplains and social workers have special skills to offer patients and patients’ families. Documenting services offered by these care providers would be valuable.

Our findings indicate that patients’ families may or may not wish to be with the patients during withdrawal of life support. Care providers should inform patients’ families that the families need not be present for withdrawal of life support, because not everyone may be comfortable with the process.³⁴ When a family decides to stay, care providers should prepare and support the family. After the death of the patient, family members may choose to stay with the patient for a variable period. The services of care providers may still be needed at this time, because the family members may be in grief and may find it difficult to support one another. In one study,³⁵ families expressed a need for better communication with care providers, especially with physicians, for the difficult decisions that the families must make during these stressful situations.

	Limitations

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Charts were not randomly selected for this study; instead, charts that were available were used. Obtaining charts was difficult sometimes because other hospital staff had the charts or the charts did not have pertinent documents or were missing. We did not compare the quality of documentation on the charts we reviewed with the quality of documentation on charts of other patients.

	Conclusions and Implications

Top Abstract Method Results Discussion Limitations Conclusions and Implications References

 
In general, efforts should be channeled to promote comprehensive documentation of end-of-life care. Development of documentation forms customized for end-of-life situations can help care providers better document and provide care. More efforts are needed to promote completion of advance directives or at least assess patients’ wishes. Improved documentation of the need for comfort medications, clinical manifestations in patients during withdrawal of life support, and response to comfort medications is required.

Assessing the extra costs incurred by the hospital and patients or patients’ families when patients’ wishes are not met and death is prolonged would be of interest. McClung³⁶ suggested clinical pathways for providing comprehensive, accessible, and coordinated care for terminally ill patients.

Finally, information gathered from what was documented cannot be used to judge the care provided at a health institution, because the information can be misleading. A prospective study of outcomes used to assess quality of care would better serve the purpose.

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This Article Abstract Full Text (PDF) A correction has been published Respond to This Article Alert me when this article is cited Alert me when eLetters are posted Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Download to citation manager Take the CE Test Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Kirchhoff, K. T. Articles by Gilbertson-White, S. H. Search for Related Content PubMed PubMed Citation Articles by Kirchhoff, K. T. Articles by Gilbertson-White, S. H.