Terry (pseudonym), a 78-year-old veteran, was admitted to our hospital for the 3rd time in the past 6 months. He was difficult to engage; he often refused to respond to direct questions, and in fact did not even bother to open his eyes or even acknowledge the provider in the room. When he did respond, it was with anger and disdain. He frequently declined medications, lab draws, and imaging, making diagnosis and treatment nearly impossible. He would disparage team members until they were in tears.
On his third day in the hospital, the intern practically begged him to allow a lab draw. Terry responded, “I want to die.” The team’s reaction was predictable; they immediately consulted psychiatry to assess suicidal ideation. Terry, of course, promptly told psychiatry to “shove it you know where,” rather than discuss the team’s very real concern for his safety and well-being. He was finally able to convince the team that he wasn’t actively considering self-harm, indicating he just was tired of being in the hospital.
The following day, the intern and I met Terry, his pastor, and his husband in the room to clarify his goals of care. While Terry was certainly still not talkative, he and his caregivers were able to relay the story of man who had been gradually eroded over the course of the past year. He had only been home for 3 weeks out of the past 6 months, having been shuttled from hospitalization to skilled nursing rehab and back again multiple times. All the while, his goal of getting stronger to return home was not materializing. He was instead, getting sicker and weaker.
In the nursing home, his needs were largely ignored. As his weakness progressed, he became a 2-person maximum assist for even transfers to the bedside commode, so they started bringing a bedpan instead. Like many patients, he found himself unable to successfully use the bedpan for stooling, resulting in severe painful constipation. This eventually resulted in a hospitalization for obstipation and uncontrolled bowel incontinence. His appetite and intake deteriorated and he now had severe malnutrition, resulting in profound edema and worsening mobility issues, warranting another hospitalization.
He was well aware that he was no longer able to reverse the course of his decline. Yet, he had to suffer all of this alone in a nursing home, left to gradually wither away, separated from his home and loved ones. His husband was no longer able to drive, so he could not even visit him at his facility. Everywhere Terry looked, he saw despair, no hope of returning home or ever feeling better. It became clear that he was suffering from profound demoralization. He was adrift and overwhelmed by a system that was supposed to be helping him. His anger, pessimism, and ultimately even his statements about desiring death were a natural response to the indignities which he was forced to endure on a daily basis.
We talked to him about considering a different path, one that would allow him to forgo repeat hospitalizations, labs, and nursing homes. He was reassured that he could have his symptoms controlled and that he could be with his loved ones at home where he wanted to be, cared for in a dignified manner. For the first time in months, Terry seemed ever so slightly hopeful. He quit responding to us with anger or disdain. He no longer wanted to die, he just wanted to go home to cherish his remaining time with the man he loved.
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