The Kennedy Terminal Ulcer is described as a pear-, butterfly-, horseshoe-, or sometimes irregular-shaped red/yellow/black ulcer, similar in appearance to an abrasion or blister, that may occur suddenly.1 The blister roof may be very fragile and even gentle cleansing may change the skin surface from intact to a fairly large open wound. The ulcer may darken quickly before demarcating within days; it has the characteristics of early deep tissue injury and can progress rapidly to a Stage II, Stage III, or Stage IV ulcer (see Figure 1). Sometimes the surrounding tissue is soft or loose beneath the surface. Time is a key factor. Pressure ulcers in general can develop within 24 hours of skin insult and take as long as 5 days to present.2 According to Kennedy1 and others, Kennedy Terminal Ulcers come on quickly and progress rapidly, often within hours.
Initially, the Kennedy Terminal Ulcer was thought to be located exclusively in the sacral/coccygeal area; this was later amended to be described as its usual location. Kennedy Terminal Ulcers have been known to appear on the heels, posterior calf muscles, arms, and elbows.3 Early descriptions compare the look of the buttocks in some cases to being dragged over a black-topped road.4
The ulcer also is addressed in literature5 on providing evidence-based treatment options for patients needing palliative or end-of-life care. The primary care provider or wound consultant customarily makes the diagnosis and prescribes/recommends treatment for this skin failure/Kennedy Terminal Ulcer. These actions often are based on the recommendations or suggestions from the nurses working with the patient and his/her family.
A Kennedy Terminal Ulcer has been found to be a pressure ulcer that heralds the end of life. Kennedy1 published results of a 5-year retrospective study of approximately 500 persons with pressure ulcers regarding pressure ulcer prevalence rate at her facility, finding that residents developing pressure ulcers died within 2 weeks to several months; 55.7% of people with pressure ulcers died within 6 weeks of onset. As part of their descriptive study comparing different methods of capturing and assessing prevalence and incidence data, Hanson et al6 noted that 62.5% of patients in hospice care developed pressure ulcers in their final 2 weeks of life. Theoretically, many of the pressure ulcers in these studies could be Kennedy Terminal Ulcers.
The skin is an organ that (similar to other organs) can fail, especially as people age. Skin integrity is dependent on the function of all other organ systems for nutrition, circulation, and immune function.7 Raised temperature, decline in circulation, pressure, and other yet-to-be determined causes increase tissue demands on the skin and can have an impact on skin integrity8; pressure ulcers, a type of skin death, frequently occur in persons with a heavy disease burden, especially those at or near the end of life.9 Although the skin is approximately 10% to 15% of total body weight, it is known to require 25% to 33% of cardiac output. It is no surprise then that the skin in patients on vasopressors that divert blood to major organs for survival is compromised.
Langemo and Brown9 describe 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.” Unlike other failing organs, skin changes are visible. Thomas10 noted that clinicians focus on the environment to effect change for patients with pressure ulcers, as well as on the role of risk factors in wound healing; however, he theorizes wounds may be more affected by intrinsic factors than is realized. Citing data in Jones and Fennie’s11 multisite retrospective chart review of pressure ulcer treatment in various settings during a period of more than 6 months, Thomas concluded that despite prudent management of extrinsic factors such as pressure offloading and nutrition, intrinsic factors may have a stronger influence on the ability to heal wounds.
The section concerning pressure ulcers in the 2008 American Medical Directors Association (AMDA) Guidelines,12 developed by an interdisciplinary group of clinicians, refers to the Kennedy Terminal Ulcer as an unavoidable ulcer. When research was limited, a consensus approach was implemented utilizing clinician expertise to establish recommendations. The recommendation regarding Kennedy Terminal Ulcer is also reflected in the National Pressure Ulcer Advisory Panel’s (NPUAP)13 update of the pressure ulcer staging system. Suspected deep tissue injury is an additional stage denoting full-thickness injury.
The federal government requires completion of the Minimum Data Set (MDS), an assessment form used for all residents in long-term care facilities certified by Medicare or Medicaid. Presently, suspected deep tissue injury is not included in this document. Thus, if the skin is intact when the Kennedy Terminal Ulcer is first noted, it would be designated as a Stage I on the MDS. Eschar-covered areas would be noted as a Stage 4. Further description of the ulcer may be addressed in the healthcare provider’s note.
Pressure ulcer care and documentation seem to be subject to increasing regulatory and legal scrutiny. Hogue,14 in addressing increased litigation risk for clinicians specializing in wound care, noted that wound development in patients often is viewed as negligence; earlier perspectives seemed to accept that wounds could develop despite appropriate intervention. As an analogy, if a cardiologist provides appropriate care and the patient suffers a myocardial infarction, usually no fault may be found. If a wound care clinician provides and documents appropriate care and the patient’s skin fails, the same standards should apply. Thus, determining that an end-of-life occurrence was inevitable due to organ failure has legal and reimbursement, as well as clinical, ramifications.
Skin Changes at Life’s End (SCALE). In April 2008, Gaymar Industries, Inc (Orchard Park, NY) provided an unrestricted educational grant for a consensus meeting to discuss skin changes at the end of life, including the Kennedy Terminal Ulcer. The panel7 of wound and skin experts recognized pressure ulcer development occurred not only in terminal patients, but also among patients experiencing overwhelming illness, lending credence to the relationship between general organ failure and skin failure. Panel members also agreed these pressure ulcers were unavoidable.
This end-of-life, skin care and patient care initiative resulted in 10 statements relevant to end-of-life wound care. These statements address assessment, accurate description and documentation of skin/wound abnormalities, using etiology to guide care goals (ie, prevention, treatment, avoiding further deterioration, and palliation), realistic expectations, communication, identification of risk factors (eg, limited mobility, compromised nutrition, decreased perfusion, incontinence), reduced tolerance of pressure on skin, manifestation of evidence of dying in skin, and education.