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Journal of Palliative Medicine logoLink to Journal of Palliative Medicine
. 2011 Apr;14(4):483–489. doi: 10.1089/jpm.2010.0397

Advance Directives in an Oncologic Intensive Care Unit: A Contemporary Analysis of their Frequency, Type, and Impact

Neil A Halpern 1,, Stephen M Pastores 1, Joanne F Chou 2, Sanjay Chawla 1, Howard T Thaler 2
PMCID: PMC3678563  PMID: 21417740

Abstract

Background

Our objective was to provide a contemporary analysis of the prevalence, types, and impact of advance health care directives in critically ill cancer patients.

Methods

We retrospectively reviewed all intensive care unit (ICU) admissions (January 1, 2006 to April 25, 2008) at an oncologic center and identified all patients who completed a living will (LW), or health care proxy (HCP), or neither prior to ICU admission. Demographics, clinical data, end-of-life (EOL) parameters and outcomes were compared among three groups: LWs, HCPs, and no LW or HCP.

Results

Of 1,333 ICU admissions, 1,121 patients (84%) were included for analysis: 176 patients (15.7%) had LW, 534 (47.6%) had HCP and 411 (36.7%) had no LW or HCP. Patients with LW were significantly more likely to be older and white as compared to patients with HCP alone, or no LW or HCP. There were no significant demographic differences between patients with HCP or no LW or HCP. Patients with HCP alone, or no LW or HCP, were significantly more likely to have Medicaid than patients with LW. There were no differences noted in ICU care, EOL management, or outcomes among the three groups.

Conclusions

The prevalence of LWs in patients admitted to our oncologic ICU is low. More than half of the remaining patients had designated HCPs. Older age and white race were associated with the presence of LWs. However, the presence of LWs or HCPs did not influence ICU care, EOL management or outcomes at our institution.

Introduction

Americans hope that their physicians and designated proxies will ensure that their wishes are followed at the end of their lives.14 The Patient Self-Determination Act (PSDA) passed by Congress in 19905,6 provided a national framework for two types of advance health care directives to enhance end-of-life (EOL) care for incapacitated patients; the living will and the health care proxy. To date, despite the PSDA and a myriad of broad-based EOL planning initiatives, less than a third of Americans have completed advance health care directives.1

The dearth of EOL care planning in America has been identified as one of the barriers to optimizing EOL care and may be a major contributor to the use of overly aggressive and costly hospital resources at the EOL.7 This is especially relevant to intensive care units (ICU) in the United States where 22% of deaths in the hospital involve an ICU admission.8 Many intensivists consider EOL care to be one of the most challenging and time consuming elements of their critical care medicine (CCM) practice.9

Despite the soaring numbers of new patients annually diagnosed with cancer in the United States,10 their frequent need for ICU care,11,12 and their associated low survival rates,13 there are few reports of EOL planning in critically ill patients with cancer.14,15 Kish and colleagues15 of the University of Texas M.D. Anderson Cancer Center analyzed data from 872 cancer patients admitted to their ICU between 1994 and 1996 and found that only 27% of patients had a written living will; moreover, compliance with the provisions of these advance directives was poor. The purpose of our study was to provide a contemporary analysis of the prevalence, types, impact, and timing of both living wills and health care proxies in patients admitted to an oncologic ICU.

Methods

Study design

This study was a 28-month retrospective comparative analysis of patients with and without advance directives documented in the medical record. The study was granted a waiver of authorization by the Institutional Review Board (Project Approval Number WA 0171-08).

Using hospital and ICU databases, we reviewed the electronic medical records (EMR) of all patients admitted to the closed medical-surgical ICU of Memorial Sloan-Kettering Cancer Center from January 1, 2006 through April 25, 2008. At our institution, ICU attending approval is required for all ICU admissions, discharges, or rejections. As we are managing an oncologic ICU in a tertiary care cancer facility, our ICU triage process is focused primarily upon the perceived reversibility of the patient's acute critical illness, rather than the type, extent, duration, or aggressiveness of their malignancy.16,17

We extracted advance health care documents from the “Advance Directives” section of the EMR. Four types of documents were identified; a living will (LW), a combined/hybrid health care proxy-living will (HCP-LW), a Health Care Proxy (HCP), and a do-not-resuscitate (DNR) order. For the purpose of this study, “LW” represents patients with written instructions that limit care at EOL (LW, combined/hybrid HCP-LW, or patients with both a HCP and LW); “HCP” represents a Health care proxy or agent, or a durable power of attorney for health care.

Patients were included in the LW and HCP categories only if the advance health care documents were dated prior to the time of ICU admission. Whenever duplicate HCP or LW documents were found, we used the document that was dated closest to the date of ICU admission. Patients were excluded from analysis if their documents were not dated, if their LWs requested that there be no limitations of care, or if DNR orders were issued prior to ICU admission since the DNR may have influenced the application of aggressive ICU procedures or EOL care. If a patient had more than one ICU admission, we included only the first ICU admission for analysis.

Demographic and clinical data were extracted from the EMR. The demographic data included age, gender, race (whites and minorities/other), insurer (Medicare, Medicaid/none, and Commercial), marital status (married, divorced/separated, single, widowed), and religion (Christian, Jewish, Roman Catholic, and other/unknown). Clinical parameters tracked on ICU admission included service type (medical or surgical), mortality prediction score (Mortality Probability Model at ICU admission V2) (MPM0-II) and cancer classification.

Cancer diagnoses were grouped as follows: thoracic, gastrointestinal, genitourinary, head and neck, hematologic, hematopoietic stem cell transplantation (HSCT), miscellaneous, and no cancer. If a patient had more than one cancer diagnosis, we selected the most active. When the cancer was remote and considered nonactive by the oncologic team, and the ICU admission was not related in any way to the prior cancer, we selected “no cancer.” If a patient had a HSCT as the most recent cancer therapy, then HSCT was listed as the cancer diagnosis. However, if a patient had a HSCT in the past, but had a relapse of the primary cancer posttransplant, then the cancer was listed as the active diagnosis.

ICU-specific clinical data included use of mechanical ventilation and vasopressor agents at any time during the ICU stay, airway management (intubation or tracheostomy), renal support (hemodialysis and continuous renal replacement therapy), and other interventions (endoscopy, percutaneous insertion of gastrostomy or jejunostomy feeding tubes, chemotherapy administration, and intrahospital transports). Outcome data included length of stay (LOS) (pre-ICU, ICU, and post-ICU) and mortality (ICU and hospital). EOL data included performance of cardiopulmonary resuscitation (CPR), writing a DNR order during the ICU stay, and the implementation of no escalation of care and/or withdrawal of life-sustaining therapy.

Statistical analyses

Fisher's exact test and the Wilcoxon rank sum test were used for univariate comparisons of covariate differences between patients with LW, HCP, or no LW or HCP. Variables significant in the univariate analyses were then entered into multivariate polychotomous logistic regression model to determine the set of factors that independently associated with differences among the three groups (LW, HCP, or no LW or HCP). Odds ratio, 95% confidence interval, and p values were reported. We calculated the time period between the dates of the LW or HCP and the ICU admission using three intervals chosen a priori: 3 months, 3–6 months, and greater than 6 months prior to ICU admission. When a LW patient had both LW and HCP documents that were dated differently, we used the date on the LW as most representative of intent. The Cochran-Armitage trend test was used to examine the trends in binominal proportions in procedures performed upon or during ICU admission as well as end of life care relative to the timing of LW and HCP, respectively. In addition, the Cochran-Armitage trend test was also used to compare the timing of LW vs HCP relative to the three time intervals.

We also applied logistic regression to adjust for any significant demographic differences when comparing individual ICU or EOL parameters among the LW, HCP and no LW or HCP groups. The statistical package SAS (9.1) (SAS Institute Inc., Cary, NC) was used to generate the test statistics and build the regression model. A p value <0.05 was considered significant.

Results

During the study period, 1333 patients were admitted to our ICU. Of these, 212 (16%) patients were excluded from analysis (Fig. 1), resulting in 1121 evaluable patients: 176 patients (15.7%) had an LW, 534 (47.6%) had an HCP, and 411 (36.7%) had no LW or HCP.

FIG. 1.

FIG. 1.

Flow chart of intensive care unit (ICU) patients with advance directives. After exclusion of 212 (16%) patients, there were 1121 ICU patients for analysis. A minority (176, 15.7%) had a living will. Of these, 137 (78%) had a combined/hybrid LW-health care proxy (HCP), 34 (19%) had separate LW and HCP documents (29 were dated within 30 days of each other), and 5 (3%) patients had a LW alone.

Univariate analysis comparing demographic data among the three groups (LW, HCP and no LW or HCP) were significant only for age, race, insurance, and service type (Table 1). The presence of a LW was significantly more common in the older, white, and surgical patients, and less common in Medicaid patients (Table 1). Using multivariate analysis when we compared patients with LW versus HCP, patients who were older and white were more likely to have LW. Additionally, patients who had commercial insurance were more likely to have LW; and patients who had Medicaid were less likely to have LW (Tables 1 and 2). Similarly, when we compared patients with LW versus no LW or HCP, patients who were older and white were more likely to have LW; and patients with Medicaid were less likely to have LW. In addition, patients admitted under a surgical service were more likely to have LW than patients admitted from a medical service. In contrast, there were no significant demographic differences observed when comparing patients with HCP vs no LW or HCP (Tables 1 and 2).

Table 1.

Demographics of Patients with Living Wills, Health Care Proxies or with no Living Will or Health Care Proxy

  Living will n = 176 Health care proxy n = 534 No living will or health care proxy n = 411
Age on ICU admissiona
 Age y (mean ± SD) 64.5 (±11.7) 61.0 (±14.9) 61.0 (±15.5)
Gender
 Male 115 (65.3%) 323 (60.5%) 234 (56.9%)
Racea
 White 162 (92.0%) 412 (77.2%) 306 (74.5%)
 Minorities/others 14 (8.0%) 119 (22.8%) 105 (25.5%)
Insurancea
 Commercial 82 (46.6%) 214 (40.1%) 183 (44.5%)
 Medicare 92 (52.3%) 270 (50.6%) 188 (45.7%)
 Medicaid/none 2 (1.1%) 50 (9.3%) 40 (9.8%)
Marriage status
 Divorced 16 (9.1%) 35 (6.6%) 21 (5.1%)
 Married 122 (69.3%) 353 (66.1%) 279 (67.9%)
 Single 23 (13.1%) 94 (17.6%) 78 (19.0%)
 Widowed 15 (8.5%) 52 (9.7%) 33 (8.0%)
Religion
 Roman Catholic 76 (43.2%) 240 (44.9%) 154 (37.5%)
 Christian 29 (16.5%) 99 (18.9%) 80 (19.5%)
 Jewish 30 (17.1%) 95 (17.8%) 78 (18.9%)
 Other/Unknown 41 (23.2%) 100 (18.7%) 99 (24.1%)
Admitting servicea
 Medicine 83 (47.2%) 301 (56.4%) 256 (62.3%)
 Surgery 93 (52.8%) 233 (43.6%) 155 (37.7%)
MPM II score on ICU admission
 MPM II % (mean ± SD) 46 (±26) 48 (±26) 48 (±28)
a

p values <0.05 in univariate analysis. See Table 2 for multivariate model. Race: Minorities/others include Asian/Indian, Black, Hispanic and other. Christian includes Baptist, Christian, Christian Orthodox, Episcopalian, Greek Orthodox, Jehovah's Witness, Lutheran, Methodist, Mormon, Pentecostal, Presbyterian, Protestant, Russian Orthodox, Seventh Day Adventist, Unitarian, and Quaker). Other/unknown includes Buddhist, Hindu, Moslem, other, and unknown.

ICU, intensive care unit, MPM II, Mortality Probability Model version II.

Table 2.

Multivariate Polychotomous Logistic Regression Comparing the Three Study Groups

 
Living will vs. health care proxy
Living will vs. no living will or health care proxy
Health care proxy vs. no living will or health care proxy
Characteristics OR 95% CI p OR 95% CI p OR 95% CI p
Age on ICU admission 1.3a 1.06–1.5 0.01 1.2a 1.03–1.43 0.03 0.9a 0.8–1.1 0.71
Raceb     <0.01     <0.01     0.25
 White 2.7 1.5–5.0   3.2 1.77–5.88   1.2 0.9–1.6  
 Minorities/others 1.0     1.0     1.0    
Insurance
 Medicaid/none 0.1 0.03–0.7 0.008 0.2 0.04–0.07 0.004 1.1 0.7–1.8 0.56
 Medicare 0.6 0.4–0.9 0.02 0.7 0.43–1.15 0.17 1.2 0.8–1.8 0.21
 Commercial 1.0     1.0     1.0    
Admitting service     0.08     <0.01     0.1
 Medicine/others 1.3 0.9–1.9   0.6 0.40–0.84   0.8 0.6–1.1  
 Surgery 1.0     1.0     1.0    
a

Proportional change in OR for each 10 year increase in age. bMinorities/others include Asian/Indian, Black, Hispanic and other.

OR, odds ratio; CI, confidence interval; ICU, intensive care unit.

There were no statistically significant univariate differences in any other demographic (Table 1), clinical, procedural, or therapeutic parameters on ICU admission (Tables 1 and 3) or during the ICU stay (Table 4). Finally, there were no differences among the three groups in approach to EOL, and ICU and hospital LOS or mortality (Table 5).

Table 3.

Cancer Diagnoses

Cancer diagnosis Living will n = 176 Health care proxy n = 534 No living will or health care proxy n = 411
Thoracic 14 (8.0%) 57 (10.7%) 50 (12.2%)
Gastrointestinal 49 (27.8%) 131 (24.5%) 88 (21.4%)
Genitourinary 27 (15.3%) 79 (14.9%) 66 (16.1%)
Head and Neck 9 (5.1%) 46 (8.6%) 23 (5.6%)
Hematologic 35 (19.9%) 77 (14.4%) 86 (20.9%)
HSCT 19 (10.8%) 44 (8.2%) 24 (5.8%)
Miscellaneous 19 (10.8%) 85 (15.9%) 57 (13.9%)
No cancer 4 (2.3%) 15 (2.8%) 17 (4.1%)

Thoracic (lung, mediastinal, thymoma, and mesothelioma); gastrointestinal (esophageal, gastric, small bowel, colorectal, pancreas, hepato-biliary and peritoneal); genitourinary (renal, bladder, urothelial, prostate, testicular, ovarian, uterine, cervical and vaginal); Head and neck (oral cavity, neck, sinuses, thyroid and parathyroid); hematologica (leukemia, lymphoma, myelodysplastic syndrome, multiple myeloma and amyloidosis); HSCT, hematopoietic stem cell transplantation (allogeneic or autologous); miscellaneous (breast, central nervous system, sarcoma, human immunodeficiency virus (HIV)-related, and unknown primary).

Table 4.

Procedures and Therapies Performed upon or during ICU Admission

  Living will n = 176 Health care proxy n = 534 No living will or health care Proxy n = 411
Mechanical ventilation
 MV in ICU 109 (61.9%) 313 (58.6%) 231 (56.2%)
 MV on ICU discharge 16 (11.4%) (n = 140) 53 (12.5%) (n = 425) 40 (12.4%) (n = 323)
Vasopressors
 Vasopressors in ICU 75 (42.6%) 249 (46.6%) 180 (43.8%)
Airways
 Intubation (pre- or post-ICU admission) 60 (34.1%) 188 (35.2%) 123 (30.0%)
 Intubation in ICU (post-ICU admission) 55 (31.3%) 177 (33.2%) 116 (28.2%)
 Tracheostomy (includes pre- and post-ICU admission)a 24 (13.6%) 81 (15.2%) 47 (11.4%)
 Days in ICU to tracheostomy (mean ± SD) 11.4 ± 6.3 10 ± 6.2 10 ± 6.3
Renal support
 Hemodialysis/CRRT 19 (10.8%) 49 (9.2%) 41 (10%)
Others
 Endoscopy 8 (4.5%) 28 (5.2%) 19 (4.6%)
 PEG/PEJ 3 (2.0%) 20 (3.8%) 11 (2.7%)
 Chemotherapy 7 (4.0%) 24 (4.5%) 22 (5.3%)
 Intrahospital transports/patient (mean ± SD) 2.1 ± 1.5 (n = 84) 2.2 ± 2.3 (n = 259) 1.9 ± 1.4 (n = 193)
a

The HCP group had 5 tracheostomies pre-ICU; there were no differences in percentages of tracheostomies done after ICU admission in all three groups.

ICU, intensive care unit; MV, mechanical ventilation; VP, vasopressors; CRRT, continuous renal replacement therapy; REG, percutaneous endoscopic gastrostomy; PEJ, percutaneous endoscopic jejunostomy.

Table 5.

End-of-Life Care in the Intensive Care Unit

  Living will n = 176 Health care proxy n = 534 No living will or health care proxy n = 411
End of life
 Cardiopulmonary resuscitation 5 (2.8%) 33 (6.2%) 24 (5.8%)
 DNR in ICU 50 (28.4%) 124 (23.2%) 98 (23.8%)
 No escalation of care 10 (5.7%) 27 (5.1%) 20 (4.8%)
 Withdrawal of life-sustaining therapy 16 (9.1%) 45 (8.4%) 28 (6.8%)
Length of stay (mean ± SD)
 Pre-ICU 10 ± 13.8 (n = 135) 9.7 ± 11.4 (n = 417) 8.0 ± 16.6 (n = 296)
 ICU 7.8 ± 7.7 7.6 ± 9.0 6.2 ± 7.3
 Post-ICU 13.8 ± 15.0 (n = 140) 15.5 ± 18.9 (n = 425) 14.8 ± 18.5 (n = 323)
 Hospital total 26.5 ± 22.9 26.0 ± 26.1 24.0 ± 26.5
Mortality
 ICU 36 (20.5%) 109 (20.4%) 88 (21.4%)
 Hospital 62 (35.2%) 173 (32.4%) 146 (35.5%)

DNR, do not resuscitate; ICU, intensive care unit.

We observed a statistically significant inverse relationship between the time intervals between the dating of the LWs and HCPs and ICU admission. HCPs were dated closer to the time of ICU admission than the LWs (p < 0.01; Fig. 2). However, the differences in time from the dating of the LW or HCP to ICU admission did not impact ICU procedures, EOL care or outcomes (data not shown).

FIG. 2.

FIG. 2.

Differences in time intervals. The time intevals between writing the living will (LW) or health care proxy (HCP) and intensive care unit (ICU) admission are inversely related. HCPs were predominantly written within 6 months of ICU admission, in contrast to LWs, which were mostly written greater than 6 months prior to ICU admission.

The striking similarity in ICU or EOL parameters obviated the need for a formal post hoc power analysis. Furthermore, the lack of significant differences in the ICU or EOL parameters among the LW, HCP, and no LW or HCP groups was confirmed after adjusting for race, age and type of insurance by logistic regression.

Discussion

Our study, the first analysis of advance directives in an oncologic ICU since the mid-1990s,14,15 shows a continuing low rate of LWs in this population. Low frequencies of LWs have also been documented in patients admitted to adult ICUs (0% to 13%)1820 and in units for the chronically critically ill (16%–38%).21,22 These low LW rates are not unexpected, especially in the United States, given the paucity of advance care planning in America,1 whether among the healthy, the elderly, the hospitalized,23 those undergoing major surgical procedures,24 or those with cancer.25,26 In contrast to the low frequency of LWs, we found a much higher percentage of patients with HCPs. Our contemporary analysis replicates prior studies1,14,15,18,27 in both oncologic and medical-surgical critically ill populations, which shows that the presence of LWs has no impact on ICU care patterns, EOL management, and outcomes.

Demographic and societal factors play, albeit inconsistent, roles in the writing and compliance of LWs.1,28 We found a significantly higher frequency of LWs with advancing age. Older patients tend to address EOL issues more often than younger patients possibly as a result of their greater life experience, exposure to illness, and estate planning.29 Like others,1 we also found that whites were more apt to have LWs than minorities. This correlated with the better education, socioeconomics, and physician and attorney relationships observed in whites than minorities.30 African Americans, in far greater percentages than whites, often express the wish to preserve life at any cost, thus limiting their desire to draft LWs.31 We also found that Medicaid patients had a lower frequency of LWs than patients covered by other insurers. This finding may reflect the more limited access of Medicaid recipients to health care professionals and their perceptions that LWs negatively influence quality of care.1

The failure of LWs to exert an effect on ICU and EOL care has been well explored.1,3234 LWs are not written with the prescience required to guide ICU triage decisions and the nuances of ICU care.1,35 The lack of efficacy of LWs is commonly attributed to their confusing and legalistic writing style.1,36 The LW may also not be perceived as being a valid tool for limiting ICU care until the relevant parties have studied it. Even then, they must agree that the patient's clinical status meets the conditions of hopelessness as set forth in the typical LW.1,4,37,38 Achieving this consensus is challenging, because a universal perception of hopelessness does not exist, and the concept of an “abbreviated” ICU trial (5–7 days) for critically ill patients with cancer is just entering the CCM lexicon.17 Concomitantly, proxies do not have much faith in physicians' prognostication abilities29,30,39,40 and may disagree among themselves or with their physicians even when faced with irrefutable evidence that death is imminent.41,42 Finally, there is no legal accountability if a LW is ignored.

To our knowledge, we are the first to address the impact of HCPs on ICU care. Our data shows that having a HCP alone did not have any effect on ICU procedures, EOL actions or ICU or hospital outcomes as compared to the no LW or HCP group. This data is not surprising as having a LW with written directives limiting care also did not exert any impact. The HCP process assumes that a high level of shared understanding exists between the HCP and the patient. Ideally this results in an agreement in EOL values that permits the HCP to suspend his or her own judgement and implement the patient's wishes. In reality, communications between the patient and the proxy regarding the patient's wishes are commonly suboptimal.43,44 Even with excellent discussions, the proxy may choose to disregard earlier agreements and project their own, or the physician's, attitudes onto ICU decisions and EOL care rather than the patient's.1

A greater percentage of HCPs were completed closer to ICU admission than LWs. We can only speculate that as patients became sicker, they felt the need to identify a HCP; in contrast, healthier patients were more likely to address the writing of LWs at a greater time interval prior to becoming critically ill. Despite the differences in time periods between HCPs and LWs and ICU admission, the similarities in ICU care patterns, EOL management and outcomes in all three study groups (LW, HCP, or no LW or HCP) suggests that a common denominator exists within each group.45 We believe that whether the patient's wishes were expressed in writing or orally, explicitly, generally, or not at all, with a designated proxy or not, the suddenness of a loved one's clinical deterioration may not give the proxy, or others not formally appointed, much time to mentally and emotionally prepare for this experience and process the issues at hand.46,47 Thus, the ICU and EOL management and outcomes are the same for patients in each of the three study groups.

Our study has several limitations. First, we cannot comment on the frequency and efficacy of LWs or HCPs in patients who were never admitted to the ICU as this was beyond our scope. Second, the retrospective nature of our study precluded a determination of whether the ICU team was actually aware of the presence of the LWs or HCPs during the ICU stay.20 Third, we had no method of assessing whether there were “unofficial” surrogates in the no LW or HCP group. Finally, our findings were confined to critically ill cancer patients potentially limiting their generalizability to critically ill patients without cancer.

In conclusion, we found a low prevalence of LWs and a stronger presence of HCPs among patients admitted to our oncologic ICU. Older age and white race were demographic factors associated with the presence of LWs. Medicaid patients, a small percentage of our study population, were more likely to have HCPs, or no LWs or HCPs, than to have LWs. The existence of LWs or HCPs did not have any more impact on ICU management, EOL care, or patient outcomes than the absence of LWs or HCPs. In our opinion, the next generation LW should contain unambiguous language that applies selectivity to ICU admission,48 and documents preferences for resuscitation and provision of high-quality palliative care at EOL.4,17,49,50 Additionally, we believe that ICUs should incorporate programs on advance care planning for HCPs to assist them in making decisions about EOL care for their loved ones during critical illnesses.1,51 Further research is necessary to evaluate if the current AD system can be enhanced to ensure compliance with patients' wishes, or whether an entirely new approach to EOL is required.

Acknowledgments

We acknowledge Christie Galarza, Nicola Phillips-Tate, Kermitt Ramirez, Khy Huynh, and Ana Dabo-Trubelja, M.D., Department of Anesthesiology and Critical Care Medicine, and Elaine Ciccaroni, Medical Graphics, Memorial Sloan-Kettering Cancer Center, New York, New York, for their participation in data gathering and preliminary analysis and preparation of the figures and tables.

Supported by Department of Anesthesiology and Critical Care Medicine, Memorial Sloan-Kettering Cancer Center, New York, New York.

Author Disclosure Statement

No competing financial interests exist.

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