Ulcers that Masquerade as Pressure? Ulcers at End of Life

As the largest member based multi-disciplinary organization dedicated to the prevention and management of patients with and at risk for wounds, it is THE AAWC’S responsibility to draw attention to issues that IMPACT clinical practice and PATIENT CARE.  One such recent topic concerns terms used to describe skin breakdown that appears to coincide with impending death: the Kennedy Terminal Ulcer (KTU), acute skin failure, Skin Changes At Life’s End (SCALE) and Trombley-Brennan terminal tissue (TB-TTI).  First proposed and described in 1983, the KTU was introduced as a subset of pressure ulcers that a patient may develop as they were nearing death.  These were characterized by shape (pear, butterfly or horseshoe), edges (irregular), and color (red, yellow or black).  The KTU may initially be an abrasion, black or darkened area that then rapidly deteriorates into a Stage II, III or IV or unstageable pressure ulcer.  This concept has sparked much interest and debate, including validity of the concept, further descriptions of the event, and case reports.  In a recent scoping review of the concept, Latimer et al (2019) identified a need for further research to deepen understanding of the phenomenon which could then inform practice.  Similarly, Ayello et al (2019) reported a review of literature on the concepts pertaining to pressure ulcers in patients at end of life.  In this report the authors acknowledge that there exists a gap in Understanding of the pathophysiology of changes that occur in the skin as a patient is dying. 

Opinions abound on the merit and validity of KTU, SCALE and TB-TTI and skin failure.  These opinions and debates are beneficial to the discussion because they add perspective and challenge us in the way we think about these conditions in terms of biologic plausibility, defining characteristics, AMONG OTHERS. 

Thus far, the level of evidence that exists to substantiate or refine these phenomenon and terms is largely composed of expert opinion, case reports, and descriptive studies.  This is to be expected with new concepts (and yes 30 years for a relatively rare event, is still legitimately considered a “new” concept).  As the body of descriptive evidence grows, more sophisticated methods of research can be designed and conducted to validate and refine the terminology and thus move the science to a more objectively identified condition. 

However, there is also an expressed desire to agree on definitions and terms concerning skin failure and skin changes at end of life (Ayello et al, 2019).   Recently, an editorial by Schank (2019) hypothesized there may be a plan or steps being put into place to eliminate the terms such as KTU or SCALE.   The state of the existing science concerning the KTU or end of life skin changes phenomenon need a more objective and rigorous scientific process through which to advance what is known before terms can be dismissed or consolidated.

Traditionally the strategy that has been employed to advance policy concerning pressure ulcers has been the use of consensus conferences sometimes in a fully transparent process, sometimes not so much. This is a valid and appropriate methodology for rare conditions when the decision-making participants in the audience are experts with that rare event. Another scholarly approach is to use a process known as a concept analysis to compile what is known about a new condition or phenomenon and, through the rigor of the analysis, explore the utility, practicality, precision and appropriateness of that term.

It behooves all of us to be aware of the issues surrounding ulcers that may masquerade as pressure: the KTU, SCALE, TB-TTI and skin failure. The articles cited in this blog provide a succinct history of the evolution of these terms.  As the multidisciplinary membership of healthcare professionals interested in wound care, attention to these terms and these phenomena is critical so that we are prepared to engage and influence patient care, public policy and professional practice in a responsible, scholarly process that is informed by science, not opinion.


References:

  1. Understanding the Kennedy Terminal Ulcer. http://kennedyterminalulcer.com/  Last accessed 6/15/19.
  2. Latimer S, Shaw J, Hunt T, Mackrell K, & Gillespie BM (2019). Kennedy Terminal Ulcers: A scoping review. J Hospital and Palliative Nursing. doi: 10.1097/NJH.000 000 000 000 0563.
  3. Ayello EA, Levine JM, Langemo D., Kennedy-Evans KL, Brennan MR., & Sibbald RG (2019).  Reexamining the literature on terminal ulcers, SCALE, skin failure, and unavoidable pressure injuries. Advances in Skin & Wound Care 32(3): 109-121.  www.woundcarjournal.com
  4. Schank JE (2019). Special Report: Terminating the Kennedy Terminal Ulcer? Wound Management & Prevention (formerly Ostomy-Wound Management); 65(4). ISSN 2640-5245  http://www.o-wm.com/article/terminating-kennedy-terminal-ulcer
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Comments on "Ulcers that Masquerade as Pressure? Ulcers at End of Life"

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Diane L Krasner - Wednesday, June 19, 2019
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Thank you, Ruth, Well stated! We need more research to move the understanding and labeling further. I suggest we can reach agreement at this point on the fact that people who are dying may experience Alterations in Skin and/or Tissue integrity and that these changes may be unavoidable despite care that meets or exceeds the standard of care. Thanks for continuing this important discussion. Diane L. Krasner PhD RN FAAN Wound & Skin Care Consultant York PA

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