Editor’s Pick: Palliative Care for Inclusion Body Myositis, a Case Report

During one hospitalization for aspiration pneumonia, he underwent swallow studies that demonstrated significant dysmotility and was told he was no longer allowed to eat or drink by mouth. A percutaneous endoscopic gastrostomy (PEG) tube was placed with minimal conversation or guidance. He was told that he essentially had no choice in the decision because if he continued to eat and drink by mouth, he would die. After diligently not eating by mouth for a year, he felt overwhelmed by the emotional ramifications and the impact on his quality of life. With the support of his wife, he chose to begin eating by mouth once again, recognizing the risk of developing aspiration pneumonias. While his wife was supportive, every time he was hospitalized for aspiration he was criticized by his healthcare team for his decision to attempt oral feeding.

FIGURE C: Muscle ultrasound with increased echo intensity of vastus lateralis.

Goals-of-care discussions took place only in the days before his death. During a hospitalization for respiratory failure, for which Mr. F was admitted to the intensive care unit (ICU), Mrs. F ultimately asked for palliative care to be involved. The ICU team agreed, but Mr. F’s primary care doctor felt this decision was akin to giving up. Eventually, Mr. F passed away in the ICU due to respiratory failure secondary to IBM.

The unpredictability of Mr. F’s illness, combined with the lack of medical guidance throughout the process, led to significant distress for Mr. and Mrs. F. “You know what I think the problem was?” Mrs. F says, “I don’t think I knew when it was the end of life. There was a constant [uncertainty]. … Is it going to be this year or month? There were so many times I thought he was going to pass but he didn’t.”

Reflecting back, Mrs. F thinks earlier goals-of-care conversations would have been helpful. And as Mr. F continued to decline, there was no central person to guide them through the process.

Discussion

IBM is a serious and devastating illness without any known, effective cure. Excellent person-centered care of patients with IBM and their care partners must include palliative care—identification and management of total suffering, which includes physical, psychosocial, spiritual/existential and financial distress. Increasing access to palliative care requires educating rheumatologists about how to incorporate palliative care modalities into their management framework and identifying when referral to specialty palliative care is appropriate (see Table 2).