The majority of the cohort were female gender at birth (83%), and all were white, aside from one individual who was Native American. Of those 35 individuals, 10 (29%) were mandated into treatment and 25 (71%) voluntarily transferred into treatment at ERC. This cohort of 35 patients had a median duration of illness of 16 years (IQR: 6–24; Range: 1–49). The median number of days between the patient’s index treatment and their death was 390 days (IQR: 208-1,218; Range: 32-2584). The median days from the last residential stay, at ERC, to death for involuntary patients was 273 days (IQR: 135–650) and for the voluntary patients it was 499 days (IQR: 222-1,218). There was no significant difference in the number of days from the last ERC treatment to death between the voluntary and involuntary group (p = 0.39). During treatment at ACUTE the average age of the patients was 38.5 years (SD: 12.7; Range: 20–64), the median length of medical hospitalization was 18 days (IQR: 14–28; Range: 4–83), the average BMI on admission, was 12.8 kg/m2 (SD: 2.4) and the average percent expected body weight (EBW) was 61.4% (SD: 10.9). The last recorded BMI and %IBW at the conclusion of the treatment at ERC was 17.9 kg/m2 (SD:2.0) and 84.1% (SD:9.2) respectively. There were no significant differences in age, days of hospitalization, admission BMI to ACUTE or discharge BMI from ERC between the voluntary and involuntary cohorts (all p’s > 0.05) (Table 1).
Table 1
Patient demographics and causes of death for the whole cohort and a subset of the voluntarily and involuntarily treated cohorts (N = 35)
| Whole Cohort (n = 35) | Voluntarily Treated (n = 25) | Involuntarily Treated (n = 10) | | |
Demographic Parameters | | | | | |
| Mean (SD) | Mean (SD) | Mean (SD) | t-test | p value |
Age at death (yrs) | 41.1 (13.2) | 41.8 (14.4) | 39.5 (10.4) | 0.46 | 0.65 |
Age at ACUTE admission (yrs) | 38.5 (12.7) | 39.3 (13.8) | 36.6 (9.7) | 0.56 | 0.58 |
BMI (kg/m2) at ACUTE admission | 12.8 (2.4) | 13.1 (2.6) | 12.3 (1.9) | 0.84 | 0.41 |
BMI (kg/m2) at ERC discharge | 17.9 (2.0) | 18.2 (1.8) | 17.0 (2.3) | 1.62 | 0.12 |
LOS for ACUTE and ERC treatment (days)a | 75 (48–105) | 63 (48–105) | 90 (55–103) | 187b | 0.81 |
Duration of illness (yrs)a | 16 (6–24) | 16 (6–25) | 16 (5–23) | 168b | 0.38 |
Causes of Death | | | | | |
| n (%) | n (%) | n (%) | | |
Mental Health | | | | | |
AN/Malnutrition | 21 (60) | 15 (43) | 6 (17) | | |
Suicide | 2 (5.7) | 1 (3) | 1 (3) | | |
Substance Use | 4 (11) | 2 (5.7) | 2 (5.7) | | |
Additional Medical Causes | | | | | |
Cardiovascular | 9 (26) | 7 (20) | 2 (5.7) | | |
Gastrointestinal | 8 (23) | 7 (20) | 1 (3) | | |
Infection | 10 (29) | 9 (28) | 1 (3) | | |
Metabolic | 10 (29) | 7 (20) | 3 (9) | | |
Pulmonary | 5 (14) | 4 (11) | 1 (3) | | |
Other Causes | | | | | |
Homicide | 1 (3) | 1 (3) | 0 | | |
Severe Osteoporosis | 1 (3) | 0 | 1 (3) | | |
End-stage Renal Disease | 1 (3) | 1 (3) | 0 | | |
Skull fracture | 1 (3) | 1 (3) | 0 | | |
Huntington’s Chorea | 1 (3) | 1 (3) | 0 | | |
Multiple Sclerosis | 1 (3) | 1 (3) | 0 | | |
Scleroderma | 1 (3) | 1 (3) | 0 | | |
Note. BMI—body mass index, LOS—length of stay, AN—anorexia nervosa |
aMedian and Interquartile Range |
bMann-Whitney U test statistic |
Sixty-nine percent of the individuals were diagnosed with AN-R and 31% were diagnosed with AN-BP during their ACUTE and ERC treatments. On their death certificates, six of the involuntary patients (60%) had AN listed as their primary cause of death and 15 of the voluntary patients (43%) had AN listed as their primary cause of death. One additional voluntary and two additional involuntary patients had AN listed as a secondary cause of death. The total number of patients with AN listed as a cause of death was 24 (69%). Fifty-eight percent of deceased patients with AN-R had AN listed as a cause of death and 29% of deceased patients with AN-BP had AN listed as a cause of death. One voluntary patient was a homicide victim. One patient in each cohort (voluntary vs involuntary) died because of suicide (hanging); that is, two of the 35 deaths, or 5.7% of the deaths, were suicide (Table 1). When these two suicide deaths are viewed as a proportion of the overall original sample of 370 patients in our study, the figure is 0.54%.
Twenty-eight of the thirty-five patients (80%) had a comorbid medical disease listed as a cause of death, and seven did not. Medically, nine patients, (25.7%) (7 voluntary, 2 involuntary) died of a cardiovascular cause; eight, (22.8%) (7 voluntary, 1 involuntary) died of a gastrointestinal cause; ten, (28.5%) of an infection (9 involuntary, 1 involuntary); ten, (28.5%) (7 voluntary, 3 involuntary) of a metabolic cause; and five, (14.3%) (4 voluntary and 1 involuntary) of a pulmonary cause. Some deceased patients had more than a single medical cause of death. For AN-R patients, the top three causes of death were AN, followed by infections and gastrointestinal causes. For the patients with AN-BP, the top three causes were also AN, followed by metabolic and cardiovascular causes of death. Other miscellaneous causes of death included severe osteoporosis, end-stage renal disease, skull fracture, Huntington’s Chorea, multiple sclerosis and scleroderma. Four patients had substance abuse listed as a cause of death, three of the AN-R subtypes and one in the AN-BP subtype.
Of the cardiovascular causes of death, congestive heart failure and tachyarrhythmias accounted for 55% of these deaths; of the gastrointestinal causes of death, liver cirrhosis accounted for 50% of the deaths; pneumonia accounted for 60% of the infectious disease causes of death; hypoglycemia and hypokalemia each accounted for 40% of the metabolic causes of death; and pulmonary embolism accounted for 80% of the pulmonary causes of death.
Psychiatrically, of the 35 patients, 27 (77.1%) had at least one comorbid psychiatric or provisional psychiatric diagnosis (Table 1) on admission, in addition to their diagnosis of AN. For these 27 patients, a diagnosis of generalized anxiety disorder (GAD) was the most prevalent, with 18 patients (66.7%) receiving this diagnosis. Thirteen (48.1%) received a diagnosis of an affective disorder, with ten (76.9%) of the 13 being given a diagnosis of major depressive disorder (MDD), unspecified depressive disorder, or dysthymic disorder, and three (23.1%) of the 13 being given a diagnosis of bipolar disorder. Fifteen patients (42.9%) had more than one comorbid psychiatric diagnosis. Table 2 outlines the medical and psychological characteristics of the cohort.
Table 2
Medical and psychological characteristics of the cohort (N = 35)
ID | Mandated to Treatment | Sex at Birth | BMI (kg/m2) at ACUTE Admission | Age at ACUTE Admission | Age at Death | Duration of AN (yrs) | AN Subtype during Treatment | Days since last ERC Treatment | BMI (kg/m2) at ERC Discharge | Total LOS in Treatment (days) | Comorbid Psychiatric Diagnoses (excluding ED) | Medical Comorbidities at Death |
1 | No | M | 10.8 | 20 | 22 | 10 | AN-BP | 646 | 18.6 | 105 | MDD, GAD, OCD | None listed |
2 | Yes | F | 8.5 | 36 | 37 | 23 | AN-R | 119 | 14.3 | 95 | None listed | Severe osteoporosis |
3 | No | F | 13.9 | 43 | 50 | 25 | AN-BP | 906 | 18.8 | 99 | GAD | Cavitary lung disease, pneumonia-klebs |
4 | Yes | F | 14.8 | 47 | 49 | 3 | AN-R | 570 | 19.0 | 103 | Bipolar disorder II | Pancreatitis |
5 | No | F | 10.7 | 32 | 34 | 8 | AN-R | 390 | 19.5 | 100 | GAD | None listed |
6 | Yes | F | 13.1 | 31 | 37 | 24 | AN-BP | 117 | 17.5 | 136 | MDD, GAD, OCD | Supraventricular tachycardia |
7 | No | F | 14.2 | 35 | 35 | 22 | AN-R | 39 | 18.0 | 41 | GAD, alcohol related disorders | Pulmonary embolism, cirrhosis, hemoperitoneum, ESRD |
8 | No | F | 11.9 | 61 | 62 | 47 | AN-R | 2062 | 18.7 | 142 | GAD | Congestive heart failure, pulmonary embolism, bronchiectasis, cecal volvulus |
9 | Yes | F | 13.1 | 53 | 54 | 3 | AN-R | 218 | 19.1 | 89 | None listed | None listed |
10 | No | F | 11.0 | 37 | 38 | 21 | AN-R | 374 | 14.5 | 54 | None listed | Multiple fractures, skull fracture |
11 | No | F | 9.8 | 23 | 24 | 6 | AN-R | 156 | 20.4 | 162 | GAD, social anxiety | Pneumonia, sepsis |
12 | No | F | 9.9 | 64 | 64 | 9 | AN-R | 1096 | 17.2 | 54 | GAD, unspecified depressive disorder | Pericardial effusion, hypoglycemia, cardiac arrest-arrhythmia |
13 | No | M | 14.2 | 59 | 64 | 1 | AN-R | 1784 | 17.4 | 57 | None listed | HIV, cirrhosis |
14 | No | M | 16.6 | 25 | 26 | 6 | AN-R | 282 | 19.5 | 59 | GAD | None listed |
15 | No | F | 14.8 | 38 | 38 | 2 | AN-R | 32 | 17.0 | 63 | R/O GAD | Multiple sclerosis, Huntington's disease |
16 | Yes | F | 12.9 | 33 | 38 | 15 | AN-R | 1583 | 13.4 | 37 | MDD, GAD, OCD | PICC line infection |
17 | No | F | 12.3 | 40 | 41 | 25 | AN-R | 328 | 16.3 | 58 | OCD | Congestive heart failure, hypoglycemia |
18 | No | F | 12.5 | 42 | 47 | 23 | AN-R | 1550 | 16.0 | 102 | MDD, GAD | Prolonged QT, pneumonia, scleroderma |
19 | No | F | 14.9 | 50 | 54 | 36 | AN-BP | 1450 | 18.4 | 48 | None listed | Pneumonia, sepsis, adrenal insufficiency, bowel necrosis |
20 | No | F | 12.9 | 33 | 34 | 17 | AN-BP | 499 | 18.3 | 68 | None listed | Benzodiazepine abuse, CRD |
21 | No | F | 10.6 | 20 | 24 | 4 | AN-R | 1207 | 17.0 | 89 | Unspecified anxiety disorder, unspecified depressive disorder, OCD, PTSD | Lyme disease, SZ |
22 | Yes | F | 10.9 | 30 | 32 | 16 | AN-R | 295 | 18.1 | 141 | GAD, OCD | Bradycardia, hypoglycemia |
23 | No | F | 14.2 | 36 | 38 | 21 | AN-BP | 744 | 16.1 | 22 | Alcoholism | Hypokalemia |
24 | No | M | 13.8 | 23 | 27 | 8 | AN-BP | 358 | 22.5 | 170 | Bipolar disorder II | Lung abscess, hypokalemia, metabolic alkalosis |
25 | Yes | F | 12.9 | 30 | 31 | 19 | AN-R | 251 | 14.8 | 26 | None listed | Pulmonary embolism, hypoglycemia, hypokalemia, ETOH, substance abuse |
26 | Yes | F | 14.4 | 31 | 34 | 10 | AN-BP | 650 | 20.4 | 55 | GAD, Other specified depressive disorder | None listed |
27 | No | M | 17.8 | 37 | 41 | 5 | AN-R | 1332 | 19.8 | 32 | Opioid use disorder, Other specified trauma and stressor related disorder, Alcohol use disorder | Sepsis, cirrhosis |
28 | No | F | 18.2 | 32 | 35 | 16 | AN-R | 222 | 21.3 | 40 | MDD, GAD, PTSD, R/O somatic symptom disorder | Cardiac arrest, pulmonary embolism |
29 | Yes | F | 11.1 | 25 | 26 | 5 | AN-BP | 135 | 17.9 | 75 | OCD, ADHD, learning disability | Hypophosphatemia, Multidrug use |
30 | No | F | 9.7 | 25 | 26 | 11 | AN-R | 179 | 17.2 | 150 | Anxiety disorder NOS | Mucormycosis, cirrhosis |
31 | No | F | 17.0 | 53 | 56 | 41 | AN-BP | 1218 | 19.8 | 24 | GAD, Bipolar disorder II | Supraventricular tachycardia |
32 | Yes | F | 11.2 | 50 | 57 | 30 | AN-R | 2584 | 15.9 | 91 | Dysthymic disorder, GAD | None listed |
33 | No | F | 8.6 | 34 | 35 | 4 | AN-BP | 200 | 18.1 | 107 | None listed | None listed |
34 | No | M | 13.2 | 58 | 65 | 32 | AN-R | 2141 | 17.2 | 30 | None listed | Congestive heart failure |
35 | No | F | 13.1 | 62 | 64 | 49 | AN-R | 208 | 18.2 | 141 | GAD | Pneumonia, hyponatremia, volvulus |
Note. ADHD—attention deficit hyperactivity disorder; AN—anorexia nervosa; AN-BP—anorexia nervosa – binge eating/purging subtype; AN-R—anorexia nervosa – restricting subtype; CRD—chronic renal disease; ED—eating disorder; ERC—Eating Recovery Center; ESRD—end stage renal disease; F—female; GAD—generalized anxiety disorder; M—male; NOS—not otherwise specified; OCD—obsessive-compulsive disorder; PICC—peripherally inserted central catheter; PTSD—posttraumatic stress disorder; R/O—rule out; SZ—seizure |