Malignant NeglectMalignant Neglect

What brought Mrs Waite (not her real name) to our emergency department was the intervention of her husband of 11 years. Frail, cachectic, unable to walk, Mrs Waite glanced lovingly at her husband from her hospital bed and said, “I didn’t want to come here.” In a low, husky voice she continued, “He picked me up and drove me here, against my wishes.” Apparently, she deemed the 30-pound weight loss, sustained over the past two years, relatively inconsequential. The longstanding vaginal discharge, the odor of which was still redolent from the nurses station down the hall, had become for her a tolerable inconvenience. None of these signs of a significant medical problem were cause for Mrs Waite to seek our help. Fortunately, her husband had finally experienced enough and brought her to our emergency department.

As the teaching attending for a family practice inpatient service, I was hoping to lead a knowledgeable discussion about Mrs Waite’s illness. Her clinical presentation sounded relatively straightforward moments before, as the senior resident described her in rounds. “The patient is a 38-year-old, nulliparous white woman with a medical history significant for congenital adrenal hyperplasia (CAH), untreated 20 years, who is now admitted with urinary tract infection, renal failure, and pelvic pain.” We reviewed her physical findings and laboratory studies. We talked about her clinical manifestations of CAH, including virilization, amenorrhea, and stress-induced adrenal insufficiency. Why did her adrenal disease go untreated for so long? “Lack of medical insurance,” replied the resident without missing a beat. As we discussed the causes of her renal failure, the resident conjured up the CT scans of Mrs Waite’s abdomen and pelvis from the electronic medical record.

“There is a foreign body, stuck within a large calcified mass in her pelvis,” observed the resident. Whatever it was, encased in a calcified cocoon of flesh within the vagina, it had grown so large that it occupied most of the pelvis and subsequently caused postobstructive renal failure.

At her bedside, the resident and I sat down to take a detailed history. Barely a skeletal 100 pounds, struggling to hold up her head, Mrs Waite demonstrated remarkable candor and poise as she provided us with a road map of tragedy, lost and missed opportunities that led to this hospitalization. As we listened, I became preoccupied with the reasons why she neglected herself. What prevented her from receiving the care she so desperately needed?

The sentinel event most responsible for her predicament was a rape that occurred 12 years ago, shortly before she married her husband. She had gone to a party with some friends and had gotten drunk. She woke up the following morning naked, alone in a stranger’s bed, with blood-stained sheets. She could not remember who raped her. She recalled a great deal of physical and emotional pain after the event, but like most women who have been sexually assaulted, she felt too ashamed and embarrassed to report the rape to the police or to seek legal help. Convinced that her complaint would not be taken seriously, she believed that being intoxicated made the assault her responsibility.

After the rape, she began to experience pelvic pain and malodorous vaginal discharge that would progressively worsen and become an ignominiously tolerable part of her life. Mrs Waite was unable to have vaginal intercourse with her husband for the past 6 years because of dyspareunia and postcoital bleeding. However, she refused to seek medical attention initially because of her shame and guilt and, later, because she could not afford a gynecologic examination. When we informed her that a foreign body was present within the pelvic mass, Mrs Waite immediately identified it as an object used in the assault. “He must have put that in me when he raped me,” she concluded, shaking her head. Her calm acceptance of this news represented a sad justification for the years of anger and blame she had directed toward herself. She felt, perversely, that she “deserve[d] to have this thing” as a horrible reminder of the assault.

Mrs Waite was depressed for years after the rape. Her obsessive feelings of remorse and regret continued to haunt her. The spectrum of signs she exhibited, including social isolation and alcohol abuse, were indicative of posttraumatic stress disorder (PTSD). She never became suicidal, and her self-neglect was not an overt sign of intentional self-injury. She never sought help from the rape crisis center, nor the community mental health professional, telling us the stigma of seeing a psychotherapist, and her inability to afford counseling without insurance, prevented her from doing so. Over the past 12 years, without the benefit of formal therapy, she gradually “felt better” and was not depressed at the time of her hospitalization.

Alcoholism also impaired Mrs Waite’s judgment significantly. She had had problems with alcohol abuse as a teenager, but the rape precipitated a downward spiral toward alcoholism in the years to follow. She began drinking a bottle of Black Velvet every couple of days “because it helped my pain.” Fortunately, her alcoholism remitted in the past year, though her newfound sobriety was achieved at the cost of her increasing incapacity.

Whether Mr Waite enabled his wife’s self-neglect was unclear: How could he passively accept her progressive physical decline and alcoholism? By her account, however, Mr Waite’s emotional support never wavered during the past 11 years. Indeed, the spiritual sustenance he provided was probably the key factor in “treating” her depression over the years.

The final obstacles that prevented Mrs Waite from getting medical care were her lack of health insurance and the scarcity of clinicians for the uninsured. The Waites lived in a town located within a federally designated medically underserved area. Only one sporadically staffed “free clinic” and one family-planning clinic were available to provide care to uninsured patients, and the Waites were unaware of these resources. To make matters worse, had Mrs Waite qualified for Medicaid, many local clinicians did not accept Medicaid patients because of low reimbursement, thereby making outpatient health care as inaccessible as being uninsured.

Although the United States has a predominantly employer- or work-based health insurance system, many businesses do not offer health insurance to their employees as a cost-saving measure. Mrs Waite lost her medical insurance after high school, despite working for various small businesses over the years. Without insurance, she could not afford to see her endocrinologist, and she stopped her steroid therapy 20 years ago. Her husband, a self-employed truck driver, was also uninsured. “Paying for his truck and keeping it running” took priority over health insurance. The Waites did not seek medical care except for emergencies. The concepts of “health care mainentance” and “primary care provider” were utterly foreign to them, as they would be to millions of their uninsured and underinsured peers.

As her story unfolded, it was apparent that Mrs Waite had sailed into the “perfect storm” of terrible circumstances: her unevaluated and untreated rape, resulting in depression, PTSD, and alcoholism; her lack of health insurance; and the paucity of local resources to provide health care for the uninsured. Her pathological decision not to seek help was enabled by a prevailing culture that stigmatizes survivors of rape, and those with mental illness or substance abuse. Punctuating her sentences with an unsettling, emaciated smile, Mrs Waite continued in a calm baritone: “I’m not afraid of dying. But I want to get better and support my husband like he supported me.”

Four days in the hospital had gone by, at a cost exceeding $29 000. The urosepsis and renal failure resolved with bilateral nephrostomies, antibiotics, corticosteroids, and hydration. The consultants agreed that surgery to remove the pelvic mass could be temporarily deferred, until Medicaid coverage could be obtained. Mrs Waite was discharged home, the etiology of the pelvic mass remaining a mystery.

Together we completed reams of paperwork as she applied for Medicaid, which was denied because Mr Waite has $2000 of assets in excess of eligibility guidelines. We discussed the growing possibility that the Waites were heading toward bankruptcy, since medical catastrophe is the primary cause of financial loss for more than half of debtors filing for bankruptcy.¹ Meeting Medicaid eligibility guidelines after going broke would be no silver lining for the Waites.

An exploratory laparotomy was finally performed four months later, after Mrs Waite’s parents loaned her money to defray some of the expenses. When the 771-gram, 15 × 8 × 5-centimeter oblong petrified mass was removed, it was sawed apart in the operating room, revealing a 4.5 × 3.5-centimeter black plastic vessel that appeared to be a shot glass. Surrounded by concentric layers of calcified tissue, the shot glass had taken on a life of its own, and nearly the life of its “owner.”

The surgery proceeded without complication, and her postoperative course was uneventful. She was sent home six days later, at a cost exceeding $30 000. Facing further reconstructive surgery, struggling to make payments on her hospitalizations, Mrs Waite remains sober and confident. “I’m a people person, I’ll be all right,” she explained optimistically. What about that shot glass? Mrs Waite responded with stoic acceptance, “I don’t know what that sick bastard was thinking when he put that in me. But it’s over now, and I have to move on.”

Move on, indeed. The final identification of a shot glass, expanding within her flesh and threatening her life as any malignancy, seemed anticlimactic. The 12 years of pain and anguish accrued along the way represent a tragedy made worse by the many ways her suffering could have been alleviated. A dozen years ago, a simple pelvic examination, with removal of the foreign body, as well as screening and treatment for depression, PTSD, and alcohol abuse, could have prevented this cascade of events. Unfortunately, many barriers to health care, acting together in complex concert, made that relatively low-tech solution impossible. We will never know if she could have ameliorated her pain by seeking care earlier had she been insured, as she claims she would have.

At first glance, I was sadly struck by Mrs Waite’s self-neglect; undoubtedly her alcoholism and depression impaired her judgment and prevented her from seeking medical care in the first weeks and months after the rape. I soon realized, however, that the responsibility for this malignant neglect is shared by society and by our medical community. Perhaps the greatest tragedy is that, as years passed and her medical complications progressed, Mrs Waite believed her health problems were not worth professional attention until death was imminent. Her fear of the financial cost of receiving care convinced her to prioritize her health below other matters of less ultimate importance. This dehumanizing indoctrination, whereby patients—as well as medical professionals—“buy into” the concept of health care as a commodity and not an essential human right, is the most perverse outcome of a system that is readily available only to those fortunate enough to have “qualified” for insurance. Mrs Waite’s story is a painful reminder of the suffering that goes on largely unnoticed in our communities every day. Our hope, as medical professionals, is that we find new ways of working collaboratively to provide comprehensive health care to all people, regardless of ability to pay. Our challenge is to prevent another terribly unfortunate case of malignant neglect in the future.