Not There Yet

"Lilly," an 86-year-old woman residing in an assisted-living facility, wasn't acting her usual self. An ambulance brought her to the hospital, and she was admitted to the geriatric psychiatry service. She had dementia and severe hearing loss, and she was on an antidepressant.

On my evening intake, Lilly occupied a small portion of her large "geri-chair" recliner. She was small and frail. Her piercingly beautiful blue eyes looked above her glasses, which sat low on her nose. She looked away silently as I posed questions. Though when I amplified my voice to inquire whether she knew where she was, she shouted, "Lilly!" When I touched her hand, she screamed, "Don't!" so a physical examination was deferred. I ordered routine laboratory workups to identify common causes of altered mentation in the elderly, typed an admission note, and went home.

The next day I called Lilly's only child, her daughter, Debra, a nurse. Debra related that Lilly began showing signs of memory loss some years ago and that she had urged her mother to sell her home in the Vermont woods in order to move closer to her. Lilly had been living in her current facility for a year. Her daughter stated, "We know the neighborhood hospitals well." Knowledge of local hospitals is often the case among elder-care facility residents and their family members, with infection, constipation, and falls leading to emergency department visits, each time with a different doctor cast and nursing crew. Indeed, Debra knew well the ambulances' hospital bypass protocols and had her "favorite" emergency departments.

Debra said that in the past 12 months, her mother had become less conversant, more confused, and forgetful of her own daughter's identity. But because no acute etiology for her impaired state was found, I told Debra that we would monitor her mother and consider further tests to exclude other diagnoses. At the end of the conversation, I inquired, "At present, your mom's code status is 'full,' is that still your wish?" She answered, "Yes."

In the ensuing days, at the behest of my supervising psychiatrist, "Dr. G," no fewer than five specialty teams were brought on board to evaluate Lilly. The internist recommended demarcating an area of redness on her left wrist to track possible cellulitis, and a rheumatologist expressed concern for upper-extremity gout. The latter recommended a wrist aspiration to exclude infection. This required an orthopedic surgeon to sedate and restrain Lilly and then "tap" her joint. Concurrently, a brain MRI hinted at the possibility of normal pressure hydrocephalus as the source of her acute cognitive slide. The neurologist felt that an empiric trial of acetazolamide would be more palatable than the requisite large-volume lumbar puncture, which was needed to definitively make the diagnosis. Neurosurgery deferred involvement until there was diagnostic clarity.

With time, the outer aspect of Lilly's wrist attained a normal hue without antibiotics, and the inner part was deemed microbiologically unremarkable. An attempted lumbar puncture was halted, owing to Lilly's wiggling and squirming. Aside from transient electrolyte derangement due to poor hydration and a 2-day stupor, which the team believed to be a reaction to an antipsychotic administered for agitation, Lilly remained in her recliner for most of her hospitalization, glasses askew, generally mute, and only intermittently screaming her name during diaper changes.

Two weeks in, I requested a family meeting with Debra and the unit's social worker and case manager. I wanted to discuss remaining treatment options and the likelihood that Lilly had arrived at a new cognitive baseline and would require round-the-clock nursing, a level of care higher than what she was previously receiving. I called Dr. G to discuss the meeting's intended agenda. After a review of her hospital course and my discharge plan, I said, "I'd also like to explore Lilly's goals of care and code status; she's an elderly lady with advanced dementia who is making frequent trips to emergency rooms." Dr. G, a senior psychiatrist on the inpatient service, replied, "Hold off on that. I don't think—no, we're not there yet."

In the ensuing meeting, Debra said that she wasn't willing to consent to her mother undergoing a repeat lumbar puncture. Even if the findings were suggestive, a surgically placed shunt to drain fluid accumulating in Lilly's brain would likely offer minimal restoration of her cognitive abilities and pose intolerably high risk. She tearfully concurred that her mother needed full-time care.

Debra again recounted their frequent emergency department visits and their exacting tolls. As an oncology nurse, Debra said that she had counseled many families over the years in similar situations. When a patient's clinical picture isn't improving, when further intensive tests like blood draws are more upsetting than therapeutic, and when repeated hospital trips impinge on a person's limited days, reconsideration of the point of it all seems necessary. Yet Debra stopped short of doing so. Fearful of Dr. G's admonishment, so did I.

I did not suggest the possibility of changing Lilly's code status. Nor did I share my feelings regarding the appropriateness and likely benefit of hospice care at this juncture. Rather, Debra concluded the meeting by saying that she would take time that week to visit nursing homes in geographic proximity and provide the social worker with a ranked list to facilitate placement.

Debra, a medical professional, was also Lilly's daughter, and in the midst of crisis couldn't be expected to maintain a clinical perspective about a decision that inherently acknowledged the approaching end of her mother's life. But I too was complicit, despite a keen awareness of the need for physicians to initiate goals-of-care discussions. My own mother's death, when I was just 12 years old, came during an era when little attention was given to such conversations and when patients were subjected to aggressive, and often futile, "treatments," which those in the field of palliative care now strive to avoid.

I felt sad for Lilly and Debra, angry at Dr. G, and disappointed in myself. I was struck by the challenge that dying poses for doctors—even geriatric psychiatrists. In modern health care, a struggle persists to acknowledge, talk about, and cope with loss and to help patients and surrogates assign value to limited time. In a gently incriminating, tragically absurd, and unintentionally astute way, Dr. G captured it: we are not there yet.