Understanding the Kennedy Terminal Ulcer
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The Kennedy Terminal Ulcer (KTU) is a pressure ulcer that some individuals get as they are dying. Not all patients who die with a pressure ulcer die with a KTU; a KTU is in a subset of pressure ulcers that have certain characteristics. It can come on suddenly and is usually on the sacrum or coccyx but can appear in other areas. It can have the shape of a pear, butterfly, or horseshoe. The edges are usually irregular and are red, yellow, and black as the ulcer progresses. A KTU often appears as an abrasion, blister, or darkened area and may develop rapidly to a Stage II, Stage III, or Stage IV ulcer.
The KTU was first described in 1983 while I was working at the Byron Health Center, a 500-bed, long-term care institution in Fort Wayne, IN. Clinicians at Byron started one of the first skin care teams in long-term care to track information on pressure ulcers such as prevalence, stage of the ulcer, progress of the ulcer, and which patients eventually died with the pressure ulcer. This information was recorded on a handmade spreadsheet (predating computers!). As we compiled this information, we began to notice a similarity in patients who developed a pressure ulcer who went on to die within a short time frame. Using the phenomenological approach, we observed and documented our findings. We were asked to present our 5 years of data on pressure ulcers in long-term care at the First National Pressure Ulcer Advisory Panel meeting in Washington, DC in March 1989.
At the meeting, we reported that our data indicated the overall prevalence rate revealed a gradual increase from 1983 (1.95%) to 1988 (3.36%). Clinicians at Byron believed the increase in the prevalence related to the increase in the acuity of illness of patients. The skin care team started to investigate the data regarding how long individuals lived after the onset of a pressure ulcer; data showed 55.7% of the people who died with a pressure ulcer expired within 6 weeks of the onset of their pressure ulcer. This led the committee to investigate the possibility of a pressure ulcer being a sign of impending death.
This particular terminal pressure ulcer in 1989 was given the name Kennedy Terminal Lesion by the medical director at the Byron Health Center. At the time, the ulcer was described as: shaped like a pear, always on the coccyx or sacrum, had the colors of red, yellow and black, had a sudden onset, and death was imminent. Dealing with this unique ulcer, we became accustomed to hearing, “Oh, my gosh, that was not there yesterday” or “I worked Friday, that was not there then. I was off the weekend and when I came back Monday, there it was!” The ulcer tends to appear to have been there for several days or even weeks longer than its actual duration.
On April 4–6, 2008 in Chicago, IL, a panel of 18 internationally recognized key opinion leaders including clinicians, caregivers, medical researchers, legal experts, academicians, a medical writer, and leaders of professional organizations formulated a consensus statement addressing Skin Changes At Life’s End (SCALE). A modified three-phase Delphi Method approach was used to reach consensus on 10 statements reported in this document. The paper will be published in October 2009.
For more information on the KTU, please visit www.KennedyTerminalUlcer.com.
Research regarding the etiology and pathophysiology of KTU continues and will better define this and perhaps other end-of-life phenomena. Meanwhile, as caregivers determined to provide the best evidence-based care available, we will be diligent ensurers of comfort, dignity, and respect for all patients with wounds, particularly those facing end-of-life challenges.