Notes on Practice: Elder Abuse or Kennedy Terminal Ulcer?
–Joy Schank, RN, MSN, ANP, CWOCN Kennedy Terminal Ulcers have been mistaken for elder abuse. This article reviews the literature and recognition relevant to the Kennedy Terminal Ulcer and provides several case studies that underscore classification, care, and outcomes with this end-of-life phenomenon. In one specific situation, a 42-year-old woman caring for her aunt was convicted of a felony and sentenced to 3 years in prison, demonstrating the controversy that persists with regard to the unavoidability of this particular ulcer.
The Kennedy Terminal Ulcer
History. The Kennedy Terminal Ulcer was first described in modern medical literature by Karen Lou Kennedy in 1989.1 Along with other healthcare workers at the Byron Health Center in Fort Wayne, IN, she noted that despite implementation of appropriate preventive measures, certain patients still exhibited skin breakdown in the sacral/coccygeal area. They further often noted the skin deteriorated rapidly, even during the course of a single day. Caregivers and family members alike were surprised at the sudden onset of this clinical phenomenon. This initial report was based on retrospective chart reviews of individuals with pressure ulcers. Upon further inquiry into how long these individuals lived after occurrence of this type of pressure ulcer, just over half (55.7%) died within 2 weeks to several months of discovery of their pressure ulcer. These observations were further supported by Hanson et al,2 who reported 62.5% of pressure ulcers in hospice patients occurred within 2 weeks of death. Although Kennedy is credited with being the first to describe this phenomenon in modern literature, the condition actually was first described in 1877 by Jean-Martin Charcot.3,4 Charcot appropriately termed the condition decubitus ominosus, noting that patients who developed the condition died soon afterward. Like Kennedy, Charcot also described the condition in his drawings as being butterfly in shape and occurring over the sacrum.4 However, Charcot erroneously attributed the condition to being neuropathic in nature. Charcot’s writings regarding decubitus ominosus were for the most part forgotten until recently.3 However, with the renewed interest in the concept of skin organ failure, it is noteworthy that two noted experts in the field of chronic wounds independently observed the same clinical phenomenon 112 years apart. Other authors also have noted a strong link between the occurrence of pressure ulcers and death.2,5,6 However, statistical analysis has shown that pressure ulcers are generally a marker, rather than a causative factor, in death. This is an important observation, because other clinical conditions probably play a larger role in morbidity and mortality. Again, this lends credence to the concept of skin organ failure,7,8 and the occurrence of the Kennedy Terminal Ulcer as an unavoidable aspect of the dying process. Etiology. The hallmark of the Kennedy Terminal Ulcer is that it is a marker of impending death,1 a specific subgroup of pressure ulcers that some individuals develop as they are dying.8 The ulcer has been observed to usually be shaped like a pear, butterfly, or horseshoe, and located predominantly on the coccyx or sacrum, but it has been reported in other anatomical areas.9 The ulcers exhibit a variety of colors including red, yellow, or black and have sudden onset.1 In some situations, the ulcer may first appear as a simple abrasion or spot on the skin, which rapidly deteriorates to a full thickness ulcer in a matter of hours or days.9 Kennedy Terminal Ulcer or Typical Pressure Ulcer? All pressure ulcers (by definition) have pressure as a causative factor in their etiology. Likewise, the Kennedy Terminal Ulcer is generally also associated with pressure or shear. However, it is theorized that pressure is secondary to the primary causative factor, which is skin organ failure. The concept of skin organ failure is not new to the literature and has been reviewed by Langemo and Brown.7 More recently, an expert panel met to discuss the concept of skin failure at the end of life, and termed the phenomenon Skin Changes At Life’s End (SCALE).8 This group of experts in wound care concluded that our current assessment of this complex phenomenon is limited and the panel concluded that additional research is necessary to assess the etiology of SCALE to clinically describe and diagnose the related skin changes and to recommend appropriate pathways of care.
Avoidable versus Unavoidable
The Kennedy Terminal Ulcer is not avoidable. Organ failure, often cascading multiple organ failure, is a well-accepted part of the dying process in critically ill patients. The skin is the largest organ of the body, so it, too, can fail. The American Medical Directors Association in their guideline Pressure Ulcers in the Long Term Care Setting10 notes that the Kennedy Terminal Ulcer is an unavoidable pressure ulcer. The guideline recommends that the Kennedy Terminal Ulcer be classified as a deep tissue injury for documentation purposes. 
Case Reports
Patient 1. A woman with progressive Alzheimer’s dementia had lived at a long-term care facility for several years. Preventive skin measures had been successfully in place since admission. Suddenly, she developed a full-thickness sacral ulcer (see Figure 1). The staff was horrified and quickly called for a wound consult. The patient’s wound continued to deteriorate despite appropriate care. She died 6 weeks later. Because of the sudden onset and the patient’s clinical course, the ulcer was diagnosed as a Kennedy Terminal Ulcer. The staff and family were educated on what to expect. During this same period, the facility underwent a state survey. The staff had previously printed information from the Kennedy Terminal Ulcer (www.kennedyterminalulcer.com) website and included the information with the resident’s medical record. The surveyors were interested in learning more about the phenomenon, a moment of clinical sharing and teaching that benefited everyone, including the patient, her family, the staff, and the surveyors. 
Patient 2. A woman with multiple sclerosis presented with a full-thickness sacral pressure ulcer (see Figure 2). Despite intervention, the area continued to worsen. The patient and her husband realized that she was in the terminal phase of life. Information was shared with them regarding the Kennedy Terminal Ulcer. They were directed to the website as well. Earlier they had discussed feeding tubes and other clinical options. These topics were again broached. Both of them stated that they did not want to prolong her life, because there would be no quality of life. These discussions occurred with both of them present and individually. Hospice care was initiated. It was extremely difficult for family members to observe the end-of-life skin changes. The staff continued with preventive measures, but the woman’s skin continued to fail. Breakdown occurred on her chest, arms, and areas on her feet, places that had no pressure component. The body was deteriorating. During the final days, the patient did not want to be turned to one side. The staff honored her wishes. Patient 3: Elder abuse? No! When two families were merged into one household, the niece had agreed to take care of her aunt, who later was diagnosed with Alzheimer’s disease. Per her aunt’s request, the niece promised her aunt she would be cared for and allowed to die at home. After approximately 8 years in this situation, the aunt developed a Kennedy Terminal Ulcer during her final days. The niece kept her aunt as comfortable as possible. Death came unexpectedly, and when the niece found her aunt dead, she called 911. In the months following her aunt’s death, the niece was accused of elder abuse/neglect; the focus of the trial was the pressure ulcer on the deceased’s body. Well-intentioned people may suspect elder abuse when they see a patient with a Kennedy Terminal Ulcer. Could a person die with pressure ulcers as a result of elder abuse/neglect? Absolutely this could happen, but in this case it was a case of mistaken identity. The aunt was in the terminal stage of Alzheimer’s disease. She was not eating well and had lost a great deal of weight. She was delusional, incontinent, and becoming immobile. But she made her wishes clear before the disease progressed — no doctors, no hospital, no nursing home — and the niece had fulfilled her aunt’s wishes. The niece was tried and convicted of elder abuse (State of Wisconsin v Kristine M. Mayle). She could have received a 25-year prison sentence for this felony conviction; instead, she received a 3-year sentence and 7 years’ probation. She was taken from court to the county jail where stayed for 3 months before being transferred to a prison about 2½ hours from her family. The District Attorney stated this conviction sends a message that elder abuse will not be tolerated. Actually, the message seems more like, beware if you take care of your loved ones. It is of utmost importance to recognize the terminally ill may develop a Kennedy Terminal Ulcer. Of course, it is equally important to remember that ulcers can be a sign of abuse/neglect. All pertinent data must be scrutinized to determine the etiology of the wounds. It is a serious matter that warrants attention.
Conclusion
The Kennedy Terminal Ulcer is a special subgroup of pressure ulcers that some individuals develop as they are dying. The proposed etiology of the Kennedy Terminal Ulcer is that of skin organ failure, which has recently been termed SCALE (Skin Changes at Life’s End). Although a potential marker of impending death, the Kennedy Terminal Ulcer generally is not the actual cause of death. Family members are being wrongly imprisoned for a medical phenomenon that is unavoidable. Additional research is necessary to better understand the condition and to recommend appropriate pathways of care. Education of healthcare providers, law enforcement, and the general public is crucial to decrease the likelihood of innocent people being wrongly accused when appropriate care was provided.
References
1. Kennedy KL. The prevalence of pressure ulcers in an intermediate care facility. Decubitus. 1989;2(2):44–45.
2. 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.
3. Levine JM. Historical perspective on pressure ulcers: the decubitus ominosus of Jean-Martin Charcot. J Am Geriatr Soc. 2005;53(7):1248–1251.
4. Charcot JM. Lectures on the Diseases of the Nervous System. London, UK: The New Sydenham Society;1877.
5. Berlowitz DR, Brandeis GH, Anderson J, Du W, Brand H. Effect of pressure ulcers on the survival of long-term care residents. J Gerontol A Biol Sci Med Sci. 1997;52(2):M106–M110.
6. Thomas DR, Goode PS, Tarquine PH, Allman RM. Hospital-acquired pressure ulcers and risk of death. J Am Geriatr Soc. 1996;44(12):1435–1440.
7. Langemo DK, Brown G. Skin fails too: acute, chronic, and end-stage skin failure. Adv Skin Wound Care. 2006;19(4):206¬–211.
8. Sibbald RG, Krasner DL, Lutz JB, et al. Skin changes at life’s end (SCALE): a preliminary consensus statement. World Council of Enterostomal Therapists J. 2008;28(4):15–22.
9. 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.
10. American Medical Directors Association. Pressure Ulcers in the Long-Term Care Setting Clinical Practice Guideline. Columbia, MD: AMDA;2008.
11. Lutz JB, Schank JE.The Kennedy Terminal – 20 Years Later. Poster presentation at the National Pressure Ulcer Advisory Panel 2009 Biennial Conference. Arlington, VA. February 27–28, 2009.
