Terminating the Kennedy Terminal Ulcer?

Recently, we have been hearing a steady drumbeat to eliminate the term Kennedy Terminal Ulcer (KTU), the phrase used to describe skin breakdown experienced as part of the dying process. In research published in 1989, Kennedy¹ noted a KTU was a lesion or type of pressure ulcer that signaled impending death (see Figure 1). Although Kennedy was not aware at the time, Dr. Jean-Martin Charcot also researched terminal skin ulcers in 1877. He determined end-of-life ulcers were neuropathic in origin and named them decubitus ominosus; Levine² later discovered and published information from Dr. Charcot’s work. 

The first hint the term KTU was in jeopardy was in 2008, when an interdisciplinary panel convened to discuss the ulcer, skin failure, and end-of-life skin changes. Surprisingly, some panel members were adamant that the KTU not be included in the panel’s findings and were not receptive to further exploration of this phenomenon. Intense discussion and work resulted in a consensus document known as Skin Changes at Life’s End (SCALE).³ The panel concluded, “Our current comprehension of skin changes that can occur at life’s end is limited; the SCALE process is insidious and difficult to prospectively determine;  additional research and expert consensus is necessary; and contrary to popular myth, not all pressure ulcers are avoidable.” Although there was considerable pushback regarding the KTU, a recommendation was put forth to “develop a registry of Kennedy Terminal Ulcers to better categorize this phenomenon, including location, clinical description, patient and ulcer outcomes, and the presence of other end-of-life skin changes including lesions in other locations.” 

The KTU was supposed to be discussed at the 2010 National Pressure Ulcer Advisory Panel (NPUAP) conference that focused on avoidable and unavoidable pressure ulcers. The NPUAP hosted a web-based presentation before the event to introduce the topics of discussion, including “Are the Kennedy Terminal Ulcer and deep tissue injury similar? Different?” Unfortunately, toward the end of the conference, it was announced the KTU was not on the agenda due to time constraints. In the published results of the conference, it was noted, “Skin failure at end-of-life is not the same as pressure ulcers.” It also was noted, “The panelists recognized that no formal diagnostic criteria exist for skin failure. They supported that skin failure is a documentable condition and that skin failure is not the same as a pressure ulcer. There was no vote taken on Kennedy Terminal Ulcers.”⁴ No mention was made that the audience was not afforded the opportunity to discuss the KTU.

At the 2017 NPUAP conference, a discussion entitled “Panel Presentation: Untangling the Terminology: Unavoidable Pressure Injuries, Terminal Ulcers and Skin Failure” included presentations on the KTU, skin changes at life’s end, and the Trombley-Brennan Ulcer. The Trombley-Brennan Ulcer portion addressed Trombley-Brennan Terminal Tissue Injury (TB-TTI), described as “a purple maroon discoloration that may appear suddenly on the body of a patient at the end of life.”⁵ Trombley et al⁶ published research in 2012 regarding skin changes and wounds occurring in some terminally ill patients. They described purple-red discolorations that increased in size and were not always over bony prominences. The changes occurred quickly despite appropriate preventative measures. They determined these changes were not KTUs but another presentation of the skin during the dying process. 

During the Symposium on Advanced Wound Care (SAWC) Fall 2017, a presentation regarding the NPUAP’s 2016 pressure ulcer staging system (“Pressure Ulcer/Injury Terminology”) was intended to “contribute to the group’s consideration of relevant issues in the NPUAP terminology change.” The first bullet point of a slide titled “Problems with the Terms” was “Naming of diseases has changed — eponyms (KTU, TTI) are seldom used.”⁷ It is unclear why this was mentioned, because neither term is part of the NPUAP staging system, nor are they diseases. 

The session “Skin Failure: Reality or Myth?”⁸ was presented at SAWC Spring 2018. One of the initial slides was titled “Overlapping Clinical Syndromes Need Reconciliation,” which included unavoidable pressure injuries, KTU, SCALE, TB-TTI, and skin failure. The presenter acknowledged a need for a universally accepted definition of skin failure. One of the reasons listed was “an environment that was moving away from eponyms.”⁸ It is important to note other eponyms such as Alzheimer’s Disease, Parkinson’s Disease, and Marjolin’s ulcer continue to be used in health care. Langemo and Brown⁹ defined skin failure as “an event in which the skin and underlying tissue die due to hypoperfusion that occurs concurrent with severe dysfunction or failure of other organ systems.” Skin failure was further categorized as acute, chronic, or end-stage: acute is “an event in which skin and underlying tissue die due to hypoperfusion concurrent with a critical illness”; chronic is “an event in which skin and underlying tissue die due to hypoperfusion concurrent with an ongoing, chronic disease state”; and end-stage is “an event in which skin and underlying tissue die due to hypoperfusion concurrent with the end of life.”⁹ The presenter⁸ introduced his own definition of skin failure: “Skin failure is the state in which tissue tolerance is so compromised that cells can no longer survive in zones of physiological impairment that includes hypoxia, local mechanical stresses, impaired delivery of nutrients, and buildup of toxic metabolic byproducts.” He added the terms KTU, SCALE, and TB-TTI should be eliminated.

In the 2019 article “Reexamining the Literature on Terminal Ulcers, SCALE, Skin Failure and Unavoidable Pressure Injuries,”¹⁰ the authors noted the controversy regarding which term to use to describe terminal lesions. They suggested, “To help clarify the controversy among these terms, a unifying concept of ‘skin failure’ that may occur with an acute illness, chronic illness, or as part of the dying process is proposed.” They also noted, “Although the literature may not always agree as to whether KTUs, SCALE, or TB-TTIs are pressure injuries, many clinicians and researchers believe that these skin injuries are not pressure injuries and can be unavoidable as part of the dying process,” a concept with which the Centers for Medicare & Medicare Services (CMS) agrees. “For example, according to the CMS, when a clinician determines that a patient has a terminal ulcer (mostly known as Kennedy ulcers), this is no longer considered a pressure ulcer and is not coded in the pressure ulcer section of the Minimum Data Set 3.0.”¹⁰ This example refers to the long-term care setting and negates any significant controversy, demonstrating the belief that these ulcers are not pressure ulcers but are part of the dying process. The article suggested “the need to agree on definitions and terms and to begin to define diagnostic criteria for skin failure as well as skin changes at end of life” and that a consensus conference would be best to determine this information.¹⁰

It is important to remember Kennedy was sought out to present her research at the first NPUAP conference.¹ The KTU was included in the 2008 American Medical Directors Association¹¹ guidelines as well as the Clinical Practice Guidelines for Palliative and End of Life Care.¹² It has been an exam question on national certification examinations, and the CMS recognizes the KTU. Undoubtedly, the KTU is a well-established phenomenon (see Figure 2). This journal has frequent requests for information on the KTU¹³; between 2009 and 2018, 138 900+ people viewed one of its KTU articles. 

Although more research is needed to clarify the etiology, the terms KTU, SCALE, skin failure, and TB-TTI have a strong evidence base. A National Institutes of Health grant has been awarded to continue research regarding the TB-TTI.¹⁰ All of the research thus far helps explain why unavoidable skin breakdown occurs at life’s end, despite appropriate interventions. KTU, SCALE, and TB-TTI help clinicians determine the course of action with the patient and significant others. This knowledge also has been instrumental in the defense of clinicians, organizations, and lay caregivers facing litigation regarding unavoidable end-of-life skin breakdown. Campbell and Fullerton¹⁴ noted an increase in criminal litigation when the KTU was mistaken for elder abuse, especially in the home care setting; their article, “Cover Story: The Criminalization of End-Of-Life Care and the Emergence of ‘Clinical Forensic Medicine’,” is a wake-up call for all of us and highlights a disturbing trend of criminal charges against family members and the need for clinical forensic medicine. 

Where is all this headed? I predict the NPUAP will hold a conference regarding skin failure; my hope is that participants will weigh the research, act with consideration toward a consensus, and not predetermine the elimination of the KTU, SCALE, and the TB-TTI. The NPUAP’s pressure ulcer staging conference was thought by many not to have been a consensus conference.¹⁵ I hope any decisions reached at any future NPUAP skin failure conferences would be the results of true consensus.

 The belief has been expressed that  the NPUAP’s 2016 pressure ulcer staging system is a “plaintiff attorney’s best friend.”¹⁶ Essentially, a plaintiff’s attorney can say to the jury Nurse Joy injured my client. How? By the NPUAP’s definition, it was due to intense and prolonged pressure. If the NPUAP is successful, the terms KTU, SCALE, and TB-TTI will be eliminated, leaving the defense attorney with little to defend any of us.

The question about the legal ramifications of the new terminology and definitions was raised at the 2016 NPUAP consensus conference; the answer was the staging system was a clinical matter and not a legal one.¹⁵ However, I believe the deck is stacked in favor of NPUAP experts when the jury learns of their status, no matter if the NPUAP member is testifying for the defense or the plaintiff. As such, the staging system and any NPUAP decisions with regard to the KTU, SCALE, and TB-TTI are definitely clinical and most certainly legal matters that affect trial outcomes. 

The wound care community must work together, especially with this increasing trend to criminalize unavoidable end-of-life skin breakdown. At this point, it seems prudent to keep the terms and focus on the etiology of skin failure. Physical therapist Pamela Scarborough says we lost 100 plus years of learning and understanding of the KTU due to the loss of Dr. Charcot’s work. Fortunately, it was rediscovered. At this point, there seems to be no reason to repeat history and lose the terms KTU, SCALE, or TB-TTI. Until extensive research is conducted to prove otherwise, any decisions by the NPUAP should not herald the death of these terms nor alter the Langemo and Brown⁹ definition of end-of-life skin failure.