A Butterfly That May Herald End of Life

The Ostomy Wound Management website (www.o-wm.com) is experiencing an uptick in searches for information regarding the Kennedy Terminal Ulcer (KTU). This pressure ulcer exhibits unique properties: sudden occurrence and rapid progression; usually located in the sacral/coccygeal area¹ (other areas include the heels, posterior calf muscles, arms, and elbows²); most often butterfly-shaped, but also pear-, horseshoe-, or sometimes irregular-shaped; and with red/yellow/black highlights that may look similar to an abrasion or blister.¹ Its fragile blister roof may decline quickly from being intact to becoming an open wound merely as the result of gentle cleansing; the periwound and underlying skin may be soft and loose. Despite initially demonstrating the characteristics of early deep tissue injury, the ulcer may darken before demarcating, with a metamorphosis to a Stage II, Stage III, or Stage IV ulcer occurring from within 24 hours to up to 5 days.^3,4 

What particularly distinguishes this butterfly-shaped ulcer is its timing as an end-of-life phenomenon. Kennedy and other healthcare staff first noted this skin breakdown in 1983 in patients receiving appropriate preventive care in an intermediate care facility; subsequently, Kennedy conducted a 500-person, 5-year retrospective study of pressure ulcer prevalence at her facility. She found residents who developed pressure ulcers died within 2 weeks to several months; 55.7% of people with pressure ulcers died within 6 weeks of onset.¹ These data jive with more recent research. In a comparative, descriptive study by Jaul and Menczel,⁵ elderly patients with a sacral pressure ulcer had a significantly shorter median survival time than persons without pressure ulcers (70 days vs. 401 days, P<0.001). Incidental to a descriptive study that compared ways to capture and assess prevalence and incidence data, Hanson et al⁶ noted 62.5% of patients in hospice care developed pressure ulcers in their final 2 weeks of life. Following logic, many of the pressure ulcers in these studies could be KTUs.

Skin Failure 

Like other organs, the skin can fail. As noted by Langemo and Brown,⁷ skin failure involves “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” (in particular, circulatory, digestive, and immune systems⁸). For example, the skin requires 25% to 33% of cardiac output, explaining skin compromise in patients taking vasopressors to divert blood to internal organs. In addition, specific factors can impact skin integrity, such as raised temperature, comprised circulation, and external pressure.⁹ Not surprisingly then, pressure ulcers, which are a type of skin death, frequently occur in persons with a heavy disease burden, especially at or near the end of life.⁷ Thus, based on Jones and Fennie’s¹⁰ retrospective review, Thomas¹¹ reports that focus on intrinsic factors may have more of an impact on pressure ulcer care and healing than extrinsic factors (eg, pressure offloading). 

According to the 2008 American Medical Directors Association guidelines,¹² the section on pressure ulcers includes the KTU as an unavoidable ulcer, and the KTU is included in the National Pressure Ulcer Advisory Panel’s¹³ updated pressure ulcer staging system. Literature addressing the provision of evidence-based palliative or end-of-life care includes information on the KTU.¹⁴

But unlike other organs, skin changes are visible. In addition to the mission to provide evidence-based care to patients of all ages, increasing interest by clinicians providing wound care may be driven by litigious concerns. The occurrence of wounds often is viewed as negligence,¹⁵ when in actuality, the ulcer may be unavoidable. To lend credence to the reality some ulcers develop despite best practice, a consensus meeting⁸ (Skin Changes at Life's End, SCALE) was convened to discuss end-of-life skin changes, including KTUs. The experts acknowledged pressure ulcers occurred among terminal patients as well as persons with catastrophic illness that renders them susceptible to organ/skin failure. This initiative led to 10 statements/assessments/recommendations to guide care.   

The Clinicians’ Role

The primary care provider may be in the position to diagnose and subsequently direct management of skin failure/KTUs. Following the guidance provided by the SCALE document,¹⁶ physicians caring for the elderly or devastating conditions should:

• Assess the skin, paying particular attention to areas such as bony prominences most at risk for compromise 

• Provide and document provision of appropriate interventions that meet or exceed patent-centered standard care 

• Address comorbidities 

• Recognize the inability of compromised skin to withstand normal environmental assaults or perform traditional functions (eg, regulate temperature, serve as a barrier to infection, help rid the body of waste) 

• Develop and follow through on realistic expectations that embrace the healthcare team and patient family/contacts 

• Educate all interested parties: The appearance of a KTU butterfly may serve as a harbinger that despite best efforts, the patient is succumbing to the ravages of age or disease. The diligent, caring clinician should keep in mind: It is the skin’s failure, not yours.

Editor’s Note: This article was adapted from Shank J. Kennedy Terminal Ulcer: the “Ah-ha!” moment and diagnosis. Ostomy Wound Manage.2009;55(9):40–44.

References:

1.  Kennedy KL. The prevalence of pressure ulcer in an intermediate care facility. Decubitus. 1989;2(2):44-45. 

2.  Langemo DK, Brown G, Skin fails too: acute, chronic, and end-stage skin failure. Adv Skin Wound Care. 19(4);206-211.

3.  Bryant RA. Pressure ulcer prevention summit: Minnesota’s response to adverse health events. Minnesota Alliance For Patient Safety Web site. www.mnpatientsafety.org/files/tools/PU_Summit. Accessed September 8, 2009.

4.  Kennedy KL. Kennedy Terminal Ulcer. In: Milne C, Corbett L, Dubec D, eds. Wound, Ostomy and Continence Nursing Secrets. Philadelphia, PA: Hanley & Belfus, Inc; 2003:198-199.

5.   Jaul E, Menczel J. A comparative, descriptive study of systemic factors and survival in elderly patients with sacral pressure ulcers. Ostomy Wound Manage. 2015;61(3):20-26.

6.   Hanson D, Langemo DK, Olson B, et al. The prevalence and incidence of pressure ulcers in the hospice setting: analysis of two methodologies. Am J Hosp Palliat Care. 1991;8(5):18-22.

7.   Sibbald RG, Krasner DL, Lutz JB, et al. Skin changes at life’s end (SCALE). J WOCN. 2009;36(3S):S33.

8.   Medline Industries. The wound care handbook. Medline Web site. www.medline.com/compass.
Accessed September 8, 2009.

9.   Jones KR, Fennie K. Factors influencing pressure ulcer healing in adults over 50: an exploratory study. J Am Med Dir Assoc. 2007;8(6):378-387.

10. Thomas DR. Are all pressure ulcers avoidable? JAMDA. 200;4(2 Suppl):S43-S48.

11. American Medical Directors Association. Pressure Ulcers in the Long-Term Care Setting Clinical Practice Guideline. Columbia, MD: American Medical Directors Association; 2008.

12. Black J, Baharestani M, Cuddigan J, et al. National Pressure Ulcer Advisory Panel's updated pressure ulcer staging system. Dermatol Nurs. 2007;19(4):343-349.

13. Ayello EA, Schank JE. Ulcerative lesions. In: Kuebler KK, Heidrich DE, Esper P. Palliative & End-of-Life Care Clinical Practice Guidelines. 2nd ed. St. Louis, MO: Saunders-Elsevier; 2006:519-536.

14. Hogue EH. Key legal issues for wound care practitioners in 2005. The Remington Report. 2005 May-June:14-16.

15. Skin Changes At Life’s End. Final Consensus Statement. European Pressure Ulcer Advisory Website. www.epuap.org/wp-content/uploads/2012/07/SCALE-Final-Version-2009.pdf.Accessed Published March 25, 2015. Accessed March 2015.  

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