822
Journal of Pain and Symptom Management
Vol. 49 No. 5 May 2015
Original Article
Frequency and Factors Associated With Unexpected Death in an Acute Palliative Care Unit: Expect the Unexpected Sebastian Bruera, MD, Gary Chisholm, MS, Renata Dos Santos, MD, Eduardo Bruera, MD, and David Hui, MD, MSc Department of Palliative Care and Rehabilitation Medicine (S.B., E.B., D.H.) and Department of Biostatistics (G.C.), The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA; and Barretos Cancer Hospital (R.D.S.), Barretos, Brazil
Abstract Context. Few studies have examined the frequency of unexpected death and its associated factors in a palliative care setting. Objectives. To determine the frequency of unexpected death in two acute palliative care units (APCUs); to compare the frequency of signs of impending death between expected and unexpected deaths; and to determine the predictors associated with unexpected death. Methods. In this prospective, longitudinal, observational study, consecutive patients admitted to two APCUs were enrolled and physical signs of impending death were documented twice daily until discharge or death. Physicians were asked to complete a survey within 24 hours of APCU death. The death was considered unexpected if the physician answered ‘‘yes’’ to the question ‘‘Were you surprised by the timing of the death?’’ Results. In total, 193 of 203 after-death assessments (95%) were collected for analysis. Nineteen of 193 patients died unexpectedly (10%). Signs of impending death, including non-reactive pupils, inability to close eyelids, decreased response to verbal stimuli, drooping of nasolabial folds, peripheral cyanosis, pulselessness of the radial artery, and respiration with mandibular movement, were documented more frequently in expected deaths than unexpected deaths (P < 0.05). Longer disease duration was associated with unexpected death (33 months vs. 12 months, P ¼ 0.009). Conclusion. Unexpected death occurred in an unexpectedly high proportion of patients in the APCU setting and was associated with fewer signs of impending death. Our findings highlight the need for palliative care teams to be prepared for the unexpected. J Pain Symptom Manage 2015;49:822e827. Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Cohort studies, death, epidemiology, neoplasms, palliative care, prognosis
Introduction An unexpected death is often considered by clinicians as a sudden death that occurs earlier than anticipated. In non-traumatic cases, the prevalence of unexpected death varies between 0.5% and 23%.1e5 In the palliative care setting, unexpected deaths could deter end-of-life care plans by patients, family caregivers and clinical teams, and also may be associated with complicated grief in bereaved caregivers.6e8
Address correspondence to: David Hui, MD, MSc, Department of Palliative Care & Rehabilitation Medicine, Unit 1414, The University of Texas M. D. Anderson Cancer Center, 1515 Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Patients who die unexpectedly also may be subjected to inappropriate cardiopulmonary resuscitation (CPR).5,9 For example, one study examining 100 patients who had died consecutively in the acute palliative care unit (APCU) identified five patients who died unexpectedly and required a rushed decision to initiate or withhold CPR despite ‘‘Do Not Attempt Resuscitation’’ orders because of the sudden and unexpected nature of the event.5 Toscani et al.4 found
Holcombe Boulevard, Houston, TX 77030, USA. E-mail: [email protected] Accepted for publication: October 22, 2014. 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2014.10.011
Vol. 49 No. 5 May 2015
Unexpected Death in Palliative Care
that patients who died unexpectedly on general medicine wards were more likely to receive CPR and resuscitative efforts. It is, therefore, important to recognize which patients are at risk of unexpected death to minimize distress to the family and caregivers and to reduce the risk of inappropriate resuscitation. Limited information is available on the frequency of unexpected death in the palliative care setting. An extensive literature search revealed only two studies reporting the frequency of unexpected death in palliative care settings at 0.5% and 5% of patients.2,5 No data are available on the presence of signs of impending death and the predictors of unexpected death in the palliative care setting. A better understanding of these factors may allow clinicians to better define and characterize patients at risk of unexpected death, allowing patients and caregivers to prepare ahead. In this prospective observational study, we determined the frequency of unexpected death among cancer patients admitted to two APCUs. We further compared the frequency of signs of impending death between expected and unexpected deaths and determined the clinical factors associated with unexpected death.
Methods Participants This study was part of the Investigating the Process of Dying Study, a prospective, longitudinal, observational study that documented the serial changes in the last days of life. Details of this study have been previously reported.10 Briefly, patients 18 years or older with advanced cancer admitted to APCU at either M. D. Anderson Cancer Center (MDACC) between April 5, 2010, and July 6, 2010, or Barretos Cancer Hospital between January 27, 2011, and June 1, 2011, were consecutively enrolled. The institutional review boards at MDACC and Barretos Cancer Hospital approved this study. Physicians and bedside nurses provided informed consent to participate in the study. We obtained waivers of informed consent for patient participation because this study was purely observational and did not interfere with routine clinical practice.
Data Collection We collected baseline demographics including age, sex, race, cancer diagnosis, and admission length. Physical signs related to impending death were documented twice daily by bedside nurses in patients admitted to APCU, as reported previously.10,11 These signs included non-reactive pupils, respiration with mandibular movement, inability to close eye lids, grunting of vocal cords, death rattle, Cheyne-Stokes respiration, decreased urine output, presence of upper gastrointestinal bleeding, hyperextension of the neck, decreased response to verbal
823
and visual stimuli, drooping of nasolabial folds, peripheral cyanosis, and pulselessness in the radial artery. Recent studies demonstrated that these physical signs are highly specific for the diagnosis of impending death.10,11 Before initiation of the study, all palliative care clinicians completed an orientation that included the study objectives and methods for data collection. Standardized collection forms were used to record data. These forms were reviewed daily after completion to evaluate for completeness and precision, followed by feedback for the clinician. Data collection forms completed in Brazil were translated into Portuguese and then backtranslated. Videoconferences weekly and site visits were performed between the two institutions. For patients who died in APCU, the attending physician and bedside nurse completed an after-death assessment within 24 hours of each death. We defined a priori that a patient had an unexpected death if a physician answered ‘‘yes’’ to the question ‘‘Were you surprised by the timing of the death?’’ This question was chosen to define an unexpected death because of previous publications that have supported the ‘‘surprise question’’ as a prognostic tool.12,13 The following additional questions were answered as part of the after death assessment by physicians and bedside nurses: 1) At 24 hours prior to his/her death, were you expecting this patient to die? Yes/No; 2) At 48 hours prior to his/her death, were you expecting this patient to die? Yes/No; and 3) Did you expect this death to occur within this admission? Yes/No.
Statistical Analysis Our pre-planned sample size was a combined total of 200 deaths at the two study sites as stated previously,10 with 50 deaths from MDACC and 150 deaths from Barretos Cancer Hospital. This analysis was planned based on the combined data a priori. Demographic and baseline clinical variables were summarized using descriptive statistics. Differences in these variables were tested between study sites using t-tests, Wilcoxon rank sum tests, Chi-square tests, and Fisher’s exact tests, as appropriate for the type and distribution of the variable. We determined whether a clinical sign of impending death was present or absent within the last 72 hours of death. We then compared the frequency of each sign between expected and unexpected death as assessed by the physician and also the bedside nurse using Fisher’s exact test. We applied the t-tests, Wilcoxon rank sum tests, Chi-square tests, and Fisher’s exact tests, as appropriate for the type and distribution of the variable to identify patient characteristics associated with an unexpected death as assessed by the physicians. Inter-rater agreement between physicians and bedside nurses was assessed using Kappa statistics
824
Bruera et al.
Vol. 49 No. 5 May 2015
Table 1 Demographics Overall, n ¼ 193 (%)a
Patient Characteristics Mean age (SD) Sex Female Male Ethnicity Caucasian Black Hispanic Other Married Christian Education High school or less College Advanced degree Cancer Breast Gastrointestinal Genitourinary Gynecologic Head and neck Hematologic Respiratory Other Median length of APCU stay in days (IQR) Median length between diagnosis and admission in months (IQR)
Unexpected, n ¼ 19 (%)a
Expected, n ¼ 174 (%)a
P-value
60 (14)
63 (15)
60 (14)
0.78
93 (48) 100 (52)
10 (53) 9 (47)
83 (48) 91 (52)
0.81
38 6 148 1 109 183
13 3 3 0 10 18
(20) (3) (78) (1) (57) (95)
(68) (16) (16) (0) (53) (95)
137 (79) 27 (16) 10 (6)
15 (83) 1 (6) 2 (11)
20 65 19 16 14 10 27 22 5.0 13
4 5 1 1 4 0 3 1 4 33
(10) (34) (10) (8) (7) (5) (14) (11) (3e8) (4e31)
(21) (26) (5) (5) (21) (0) (16) (5) (3e7) (9e58)
132 15 26 1 99 165
(76) (9) (15) (1) (58) (95)
0.58
0.81 >0.99
122 (78) 26 (17) 8 (5) 16 60 18 15 10 10 19 26 4 12
0.29
(9) (34) (10) (9) (6) (6) (11) (15) (3e9) (4e30)
0.12
0.94 0.009
APCU ¼ acute palliative care unit; IQR ¼ interquartile range. a Unless otherwise specified.
(with 95% confidence intervals). For each question, we also calculated the percent of cases for which both the physicians and beside nurses found the death unexpected. The Statistical Analysis System (SAS version 9.2, SAS Institute, Inc., Cary, NC) was used for statistical analysis. A P-value of 0.05 or less was considered statistically significant.
Results Patient Characteristics A total of 203 patients died in APCU at MDACC and Barretos Cancer Hospital. One hundred ninety-three (95%) after-death assessments were completed and included for analysis. Of the 193 patients enrolled, 52 patients (27%) were from MDACC and 141 (73%) from Barretos Cancer Hospital. Patient characteristics are summarized in Table 1. The average age was 60 years, and 100 of 193 patients (52%) were
male. Most patients were of Hispanic origin (n ¼ 148, 78%). The most common cancer types were gastrointestinal (n ¼ 65, 34%) and respiratory (n ¼ 27, 14%).
Frequency of Unexpected Death in the APCU Collectively, 19 of 193 deaths (10%) in our APCU cohort were unexpected according to physicians (Table 2). There was no statistically significant difference between the frequency of unexpected deaths from MDACC and Barretos Cancer Hospital (12% vs. 9%, P ¼ 0.60).
Physical Signs of Impending Death in Unexpected Death Table 3 shows the frequency of physical signs of impending death in the last three days of life among unexpected and expected deaths. Although both groups exhibited physical signs of impending death,
Table 2 Frequency of Expected and Unexpected Deaths Outcomes a
Unexpected death Expected death Total deaths a
M. D. Anderson Cancer Center, N (%)
Barretos Cancer Hospital, N (%)
Total
P-value
6 (12) 46 (89) 52 (27)
13 (9) 128 (91) 141 (73)
19 (10) 174 (90) 193 (100)
0.60
Death was unexpected when physicians answered ‘‘Yes’’ to the question ‘‘Were you surprised by the timing of death of this patient?’’
Vol. 49 No. 5 May 2015
Unexpected Death in Palliative Care
the frequencies were higher among patients with expected death compared with those with unexpected death, except for upper gastrointestinal bleeding, which had a low observed frequency.
Clinical Factors Associated With Unexpected Deaths In univariate analyses, age, sex, cancer diagnosis, race, education, marital status, religious affiliation, and length of APCU stay did not differ significantly between expected and unexpected deaths (Table 1). However, a longer duration between the time of cancer diagnosis and hospital admission was associated with unexpected death (33 months vs. 12 months in expected deaths, P ¼ 0.009).
Inter-rater Agreement Between Physicians and Bedside Nurses The frequencies in which physicians and bedside nurses were surprised by a patient’s death and their agreement are summarized in Table 4. Physicians were surprised by the timing of death in 19 patients (10%), and nurses were surprised by the timing of death in 22 patients (12%). Physicians and nurses both agreed that the death was unexpected in seven patients (4%). We found a low but statistically significant inter-rater agreement between physicians and nurses for unexpected death (kappa ¼ 0.27, 95% confidence interval, 0.07e0.48). The other questions from the after-death assessment followed similar trends.
Discussion In this prospective observational study, we found that a significant minority of deaths in APCU (10%) were considered unexpected by the palliative medicine specialists. Signs of impending death were observed less
825
frequently among patient with unexpected deaths. A longer disease course was associated with unexpected death. A previous observational study examining unexpected death on the general medicine wards observed a frequency of 23%.4 Other studies examining death in APCU and hospice have shown that unexpected and sudden deaths occur in 0.5e5% of patients.2,5 The differences between these studies and our own could be explained by the different populations, methodologies, and definitions of unexpected death. In our study, we prospectively examined consecutive patients admitted in APCU in which a large proportion of patients are expected to be discharged alive,14 whereas another study2 examined patients who were on the Liverpool Care Pathway. Specifically, the Liverpool Care Pathway provides comfort care for patients who are imminently dying.15 Because this pathway only involves patients who are expected to die, this could result in an underestimation of the frequency of unexpected death. Our results provide an estimate of the frequency of unexpected death in the APCU, particularly when we found similar rates at two separate study sites. The high frequency of unexpected death is surprising because patients admitted to palliative care units have advanced cancer and are known to have a short life expectancy. This may be explained by the fact that physicians often overestimate survival.16,17 Furthermore, patients with advanced cancer are at risk of developing acute complications that may cause unexpected death. Further research is needed to confirm our findings. To our knowledge, this is the first study to prospectively examine the difference in signs of impending death between unexpected and expected death in the final days of life. The results of our study show
Table 3 Frequency of Signs of Impending Death in the Last 3 Days of Life Among Patients With Expected and Unexpected Death According to Physicians and Bedside Nurses Assessment of Expected/Unexpected Death by Physicians Signs of Impending Death Non-reactive pupils Death rattle Inability to close eye lids Grunting of vocal cords Decreased response to verbal stimuli Decreased response to visual stimuli Decreased urine output Drooping of nasolabial folds Peripheral cyanosis Hyperextension of neck Pulselessness of the radial artery Cheyne-Stokes breathing Respiration with mandibular movement Upper gastrointestinal bleed
Assessment of Expected/Unexpected Death by Bedside Nurses
Expected, N (%) Unexpected, N (%) P-value Expected, N (%) Unexpected, N (%) P-value 48 97 86 77 104 106 87 124 87 65 54 57 83 4
(40) (70) (63) (58) (71) (72) (64) (83) (62) (49) (42) (46) (60) (4)
1 10 4 6 6 7 7 8 5 5 1 3 4 2
(8) (56) (27) (38) (43) (50) (41) (50) (29) (31) (8) (19) (25) (14)
0.03 0.28 0.01 0.18 0.04 0.13 0.11 0.005 0.02 0.2 0.02 0.06 0.01 0.14
47 98 85 76 104 107 86 124 86 63 52 57 82 4
(41) (71) (64) (58) (74) (75) (64) (84) (62) (48) (41) (46) (59) (4)
0 7 3 4 4 3 6 5 3 4 1 2 3 2
(0) (47) (20) (29) (24) (18) (35) (33) (20) (29) (8) (14) (21) (15)
0.004 0.08 0.002 0.05
Journal of Pain and Symptom Management
Vol. 49 No. 5 May 2015
Original Article
Frequency and Factors Associated With Unexpected Death in an Acute Palliative Care Unit: Expect the Unexpected Sebastian Bruera, MD, Gary Chisholm, MS, Renata Dos Santos, MD, Eduardo Bruera, MD, and David Hui, MD, MSc Department of Palliative Care and Rehabilitation Medicine (S.B., E.B., D.H.) and Department of Biostatistics (G.C.), The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA; and Barretos Cancer Hospital (R.D.S.), Barretos, Brazil
Abstract Context. Few studies have examined the frequency of unexpected death and its associated factors in a palliative care setting. Objectives. To determine the frequency of unexpected death in two acute palliative care units (APCUs); to compare the frequency of signs of impending death between expected and unexpected deaths; and to determine the predictors associated with unexpected death. Methods. In this prospective, longitudinal, observational study, consecutive patients admitted to two APCUs were enrolled and physical signs of impending death were documented twice daily until discharge or death. Physicians were asked to complete a survey within 24 hours of APCU death. The death was considered unexpected if the physician answered ‘‘yes’’ to the question ‘‘Were you surprised by the timing of the death?’’ Results. In total, 193 of 203 after-death assessments (95%) were collected for analysis. Nineteen of 193 patients died unexpectedly (10%). Signs of impending death, including non-reactive pupils, inability to close eyelids, decreased response to verbal stimuli, drooping of nasolabial folds, peripheral cyanosis, pulselessness of the radial artery, and respiration with mandibular movement, were documented more frequently in expected deaths than unexpected deaths (P < 0.05). Longer disease duration was associated with unexpected death (33 months vs. 12 months, P ¼ 0.009). Conclusion. Unexpected death occurred in an unexpectedly high proportion of patients in the APCU setting and was associated with fewer signs of impending death. Our findings highlight the need for palliative care teams to be prepared for the unexpected. J Pain Symptom Manage 2015;49:822e827. Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Cohort studies, death, epidemiology, neoplasms, palliative care, prognosis
Introduction An unexpected death is often considered by clinicians as a sudden death that occurs earlier than anticipated. In non-traumatic cases, the prevalence of unexpected death varies between 0.5% and 23%.1e5 In the palliative care setting, unexpected deaths could deter end-of-life care plans by patients, family caregivers and clinical teams, and also may be associated with complicated grief in bereaved caregivers.6e8
Address correspondence to: David Hui, MD, MSc, Department of Palliative Care & Rehabilitation Medicine, Unit 1414, The University of Texas M. D. Anderson Cancer Center, 1515 Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Patients who die unexpectedly also may be subjected to inappropriate cardiopulmonary resuscitation (CPR).5,9 For example, one study examining 100 patients who had died consecutively in the acute palliative care unit (APCU) identified five patients who died unexpectedly and required a rushed decision to initiate or withhold CPR despite ‘‘Do Not Attempt Resuscitation’’ orders because of the sudden and unexpected nature of the event.5 Toscani et al.4 found
Holcombe Boulevard, Houston, TX 77030, USA. E-mail: [email protected] Accepted for publication: October 22, 2014. 0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2014.10.011
Vol. 49 No. 5 May 2015
Unexpected Death in Palliative Care
that patients who died unexpectedly on general medicine wards were more likely to receive CPR and resuscitative efforts. It is, therefore, important to recognize which patients are at risk of unexpected death to minimize distress to the family and caregivers and to reduce the risk of inappropriate resuscitation. Limited information is available on the frequency of unexpected death in the palliative care setting. An extensive literature search revealed only two studies reporting the frequency of unexpected death in palliative care settings at 0.5% and 5% of patients.2,5 No data are available on the presence of signs of impending death and the predictors of unexpected death in the palliative care setting. A better understanding of these factors may allow clinicians to better define and characterize patients at risk of unexpected death, allowing patients and caregivers to prepare ahead. In this prospective observational study, we determined the frequency of unexpected death among cancer patients admitted to two APCUs. We further compared the frequency of signs of impending death between expected and unexpected deaths and determined the clinical factors associated with unexpected death.
Methods Participants This study was part of the Investigating the Process of Dying Study, a prospective, longitudinal, observational study that documented the serial changes in the last days of life. Details of this study have been previously reported.10 Briefly, patients 18 years or older with advanced cancer admitted to APCU at either M. D. Anderson Cancer Center (MDACC) between April 5, 2010, and July 6, 2010, or Barretos Cancer Hospital between January 27, 2011, and June 1, 2011, were consecutively enrolled. The institutional review boards at MDACC and Barretos Cancer Hospital approved this study. Physicians and bedside nurses provided informed consent to participate in the study. We obtained waivers of informed consent for patient participation because this study was purely observational and did not interfere with routine clinical practice.
Data Collection We collected baseline demographics including age, sex, race, cancer diagnosis, and admission length. Physical signs related to impending death were documented twice daily by bedside nurses in patients admitted to APCU, as reported previously.10,11 These signs included non-reactive pupils, respiration with mandibular movement, inability to close eye lids, grunting of vocal cords, death rattle, Cheyne-Stokes respiration, decreased urine output, presence of upper gastrointestinal bleeding, hyperextension of the neck, decreased response to verbal
823
and visual stimuli, drooping of nasolabial folds, peripheral cyanosis, and pulselessness in the radial artery. Recent studies demonstrated that these physical signs are highly specific for the diagnosis of impending death.10,11 Before initiation of the study, all palliative care clinicians completed an orientation that included the study objectives and methods for data collection. Standardized collection forms were used to record data. These forms were reviewed daily after completion to evaluate for completeness and precision, followed by feedback for the clinician. Data collection forms completed in Brazil were translated into Portuguese and then backtranslated. Videoconferences weekly and site visits were performed between the two institutions. For patients who died in APCU, the attending physician and bedside nurse completed an after-death assessment within 24 hours of each death. We defined a priori that a patient had an unexpected death if a physician answered ‘‘yes’’ to the question ‘‘Were you surprised by the timing of the death?’’ This question was chosen to define an unexpected death because of previous publications that have supported the ‘‘surprise question’’ as a prognostic tool.12,13 The following additional questions were answered as part of the after death assessment by physicians and bedside nurses: 1) At 24 hours prior to his/her death, were you expecting this patient to die? Yes/No; 2) At 48 hours prior to his/her death, were you expecting this patient to die? Yes/No; and 3) Did you expect this death to occur within this admission? Yes/No.
Statistical Analysis Our pre-planned sample size was a combined total of 200 deaths at the two study sites as stated previously,10 with 50 deaths from MDACC and 150 deaths from Barretos Cancer Hospital. This analysis was planned based on the combined data a priori. Demographic and baseline clinical variables were summarized using descriptive statistics. Differences in these variables were tested between study sites using t-tests, Wilcoxon rank sum tests, Chi-square tests, and Fisher’s exact tests, as appropriate for the type and distribution of the variable. We determined whether a clinical sign of impending death was present or absent within the last 72 hours of death. We then compared the frequency of each sign between expected and unexpected death as assessed by the physician and also the bedside nurse using Fisher’s exact test. We applied the t-tests, Wilcoxon rank sum tests, Chi-square tests, and Fisher’s exact tests, as appropriate for the type and distribution of the variable to identify patient characteristics associated with an unexpected death as assessed by the physicians. Inter-rater agreement between physicians and bedside nurses was assessed using Kappa statistics
824
Bruera et al.
Vol. 49 No. 5 May 2015
Table 1 Demographics Overall, n ¼ 193 (%)a
Patient Characteristics Mean age (SD) Sex Female Male Ethnicity Caucasian Black Hispanic Other Married Christian Education High school or less College Advanced degree Cancer Breast Gastrointestinal Genitourinary Gynecologic Head and neck Hematologic Respiratory Other Median length of APCU stay in days (IQR) Median length between diagnosis and admission in months (IQR)
Unexpected, n ¼ 19 (%)a
Expected, n ¼ 174 (%)a
P-value
60 (14)
63 (15)
60 (14)
0.78
93 (48) 100 (52)
10 (53) 9 (47)
83 (48) 91 (52)
0.81
38 6 148 1 109 183
13 3 3 0 10 18
(20) (3) (78) (1) (57) (95)
(68) (16) (16) (0) (53) (95)
137 (79) 27 (16) 10 (6)
15 (83) 1 (6) 2 (11)
20 65 19 16 14 10 27 22 5.0 13
4 5 1 1 4 0 3 1 4 33
(10) (34) (10) (8) (7) (5) (14) (11) (3e8) (4e31)
(21) (26) (5) (5) (21) (0) (16) (5) (3e7) (9e58)
132 15 26 1 99 165
(76) (9) (15) (1) (58) (95)
0.58
0.81 >0.99
122 (78) 26 (17) 8 (5) 16 60 18 15 10 10 19 26 4 12
0.29
(9) (34) (10) (9) (6) (6) (11) (15) (3e9) (4e30)
0.12
0.94 0.009
APCU ¼ acute palliative care unit; IQR ¼ interquartile range. a Unless otherwise specified.
(with 95% confidence intervals). For each question, we also calculated the percent of cases for which both the physicians and beside nurses found the death unexpected. The Statistical Analysis System (SAS version 9.2, SAS Institute, Inc., Cary, NC) was used for statistical analysis. A P-value of 0.05 or less was considered statistically significant.
Results Patient Characteristics A total of 203 patients died in APCU at MDACC and Barretos Cancer Hospital. One hundred ninety-three (95%) after-death assessments were completed and included for analysis. Of the 193 patients enrolled, 52 patients (27%) were from MDACC and 141 (73%) from Barretos Cancer Hospital. Patient characteristics are summarized in Table 1. The average age was 60 years, and 100 of 193 patients (52%) were
male. Most patients were of Hispanic origin (n ¼ 148, 78%). The most common cancer types were gastrointestinal (n ¼ 65, 34%) and respiratory (n ¼ 27, 14%).
Frequency of Unexpected Death in the APCU Collectively, 19 of 193 deaths (10%) in our APCU cohort were unexpected according to physicians (Table 2). There was no statistically significant difference between the frequency of unexpected deaths from MDACC and Barretos Cancer Hospital (12% vs. 9%, P ¼ 0.60).
Physical Signs of Impending Death in Unexpected Death Table 3 shows the frequency of physical signs of impending death in the last three days of life among unexpected and expected deaths. Although both groups exhibited physical signs of impending death,
Table 2 Frequency of Expected and Unexpected Deaths Outcomes a
Unexpected death Expected death Total deaths a
M. D. Anderson Cancer Center, N (%)
Barretos Cancer Hospital, N (%)
Total
P-value
6 (12) 46 (89) 52 (27)
13 (9) 128 (91) 141 (73)
19 (10) 174 (90) 193 (100)
0.60
Death was unexpected when physicians answered ‘‘Yes’’ to the question ‘‘Were you surprised by the timing of death of this patient?’’
Vol. 49 No. 5 May 2015
Unexpected Death in Palliative Care
the frequencies were higher among patients with expected death compared with those with unexpected death, except for upper gastrointestinal bleeding, which had a low observed frequency.
Clinical Factors Associated With Unexpected Deaths In univariate analyses, age, sex, cancer diagnosis, race, education, marital status, religious affiliation, and length of APCU stay did not differ significantly between expected and unexpected deaths (Table 1). However, a longer duration between the time of cancer diagnosis and hospital admission was associated with unexpected death (33 months vs. 12 months in expected deaths, P ¼ 0.009).
Inter-rater Agreement Between Physicians and Bedside Nurses The frequencies in which physicians and bedside nurses were surprised by a patient’s death and their agreement are summarized in Table 4. Physicians were surprised by the timing of death in 19 patients (10%), and nurses were surprised by the timing of death in 22 patients (12%). Physicians and nurses both agreed that the death was unexpected in seven patients (4%). We found a low but statistically significant inter-rater agreement between physicians and nurses for unexpected death (kappa ¼ 0.27, 95% confidence interval, 0.07e0.48). The other questions from the after-death assessment followed similar trends.
Discussion In this prospective observational study, we found that a significant minority of deaths in APCU (10%) were considered unexpected by the palliative medicine specialists. Signs of impending death were observed less
825
frequently among patient with unexpected deaths. A longer disease course was associated with unexpected death. A previous observational study examining unexpected death on the general medicine wards observed a frequency of 23%.4 Other studies examining death in APCU and hospice have shown that unexpected and sudden deaths occur in 0.5e5% of patients.2,5 The differences between these studies and our own could be explained by the different populations, methodologies, and definitions of unexpected death. In our study, we prospectively examined consecutive patients admitted in APCU in which a large proportion of patients are expected to be discharged alive,14 whereas another study2 examined patients who were on the Liverpool Care Pathway. Specifically, the Liverpool Care Pathway provides comfort care for patients who are imminently dying.15 Because this pathway only involves patients who are expected to die, this could result in an underestimation of the frequency of unexpected death. Our results provide an estimate of the frequency of unexpected death in the APCU, particularly when we found similar rates at two separate study sites. The high frequency of unexpected death is surprising because patients admitted to palliative care units have advanced cancer and are known to have a short life expectancy. This may be explained by the fact that physicians often overestimate survival.16,17 Furthermore, patients with advanced cancer are at risk of developing acute complications that may cause unexpected death. Further research is needed to confirm our findings. To our knowledge, this is the first study to prospectively examine the difference in signs of impending death between unexpected and expected death in the final days of life. The results of our study show
Table 3 Frequency of Signs of Impending Death in the Last 3 Days of Life Among Patients With Expected and Unexpected Death According to Physicians and Bedside Nurses Assessment of Expected/Unexpected Death by Physicians Signs of Impending Death Non-reactive pupils Death rattle Inability to close eye lids Grunting of vocal cords Decreased response to verbal stimuli Decreased response to visual stimuli Decreased urine output Drooping of nasolabial folds Peripheral cyanosis Hyperextension of neck Pulselessness of the radial artery Cheyne-Stokes breathing Respiration with mandibular movement Upper gastrointestinal bleed
Assessment of Expected/Unexpected Death by Bedside Nurses
Expected, N (%) Unexpected, N (%) P-value Expected, N (%) Unexpected, N (%) P-value 48 97 86 77 104 106 87 124 87 65 54 57 83 4
(40) (70) (63) (58) (71) (72) (64) (83) (62) (49) (42) (46) (60) (4)
1 10 4 6 6 7 7 8 5 5 1 3 4 2
(8) (56) (27) (38) (43) (50) (41) (50) (29) (31) (8) (19) (25) (14)
0.03 0.28 0.01 0.18 0.04 0.13 0.11 0.005 0.02 0.2 0.02 0.06 0.01 0.14
47 98 85 76 104 107 86 124 86 63 52 57 82 4
(41) (71) (64) (58) (74) (75) (64) (84) (62) (48) (41) (46) (59) (4)
0 7 3 4 4 3 6 5 3 4 1 2 3 2
(0) (47) (20) (29) (24) (18) (35) (33) (20) (29) (8) (14) (21) (15)
0.004 0.08 0.002 0.05
