Terminal Ulcer Terminology: A Critical Reappraisal

Certain wounds have long been recognized as heralding death. However, contemporary sources rarely agree on the terminology for and identification of these wounds. In the nineteenth century, Charcot described the decubitus ominosus,¹ a concept later revived and expanded with the Kennedy Terminal Ulcer (KTU),² the Trombley-Brennan Terminal Tissue Injury (TBTTI),³ and Skin Changes at Life’s End (SCALE).⁴

Advancement of medical science and development of critical care technology has altered end-of-life trajectories and impacted the epidemiology of wounds.⁵ A recent review⁶ demonstrated that various terms referencing end-of-life wounds overlap in meaning and have limited research support; in addition, nomenclature that incorporates verbiage such as terminal or end-of-life can be ambiguous and potentially subject to bias. 

Because the terms terminal and end-of-life conflate concepts regarding diagnosis and prognosis, it is unclear whether the wound is predicting death, resulting from the dying process, or both. The association with end-of-life is intrinsically problematic because this period of time is complex, often prolonged, and difficult to define. This commentary reflects on terminal ulcer terminology in the context of today’s health care system by examining inherent uncertainties, bias, and health care system evolution. I ultimately propose that use of said terminology should be limited to clinical situations where the health care team (including patient and family) agree the patient is actively dying according to the definition cited by Hui et al⁷ (ie, the hours or days preceding imminent death during which time the patient’s physiologic functions wane). Otherwise, I recommend clinicians employ nomenclature grounded in accepted concepts of physiology shared with other organ systems, such as skin failure. 

The concepts diagnosis and prognosis are separate entities. Diagnosis refers to identification and classification of a disease state; prognosis involves estimating risk or probability of a future event.⁸ The same disease may have different prognoses based on age, preexisting illness, comorbidities, and random events.⁹ In addition, poor prognosis can be modified or averted by life support measures and pharmacotherapeutics, such as pressor agents, ventilator support, hemodialysis, antibiotics, and parenteral and tube feeding. Discordant expectations regarding prognosis are common and may be impacted by a specific health care setting (ie, intensive care unit [ICU] vs. a nursing home).¹⁰ Because of the potential combination of diagnosis and prognosis, terminal ulceration terminology should be used with caution and only in specific clinical situations where all team members, including patient and family, agree the patient is dying. 

Because the term has not been adequately tested or validated as being prognostic, terminal ulceration has not been incorporated into currently available models that predict death. Prognostic models generally rely on multiple predictors with relative assigned weights¹¹; examples of prognostic models for mortality include the Palliative Prognostic Score,¹² Palliative Prognostic Index,¹³ Karnofsky Performance Status,¹⁴ and Simplified Acute Physiology Score.¹⁵ None of these models includes skin integrity as a prognostic factor, adding to the lack of research support for terminal ulcer terminology. In addition, prognosis guidelines issued by the National Hospice Organization do not include terminal ulceration.^16,17 Until prognostic models and hospice eligibility criteria incorporate end-of-life skin ulcers, caution is advised against overuse of terminal ulcer terminology.

Literature that demonstrates the lack of accuracy in predicting death is extensive.^18-20 Inaccurately predicting death may be misleading or have harmful effects on physician and family decision making.⁹ A terminal prognosis can increase emotional stress, induce depression and despair, decrease the will to live, and initiate the mourning process.¹⁸ Assigning the label terminal ulcer when terminal prognosis has not been established potentially can contribute to conflicting documentation and confusion about therapy choices and care goals because the medical chart may contain inconsistent information. As such, the conflation of diagnosis and prognosis inherent in terminal ulcer terminology is a strong reason to limit its use to situations where death is an impending and accepted certainty. 

Medical history offers numerous examples of disease manifestations whose treatment evolved with advances in knowledge and technology.²¹ Lobar pneumonia, once a leading cause of death in the early 20th century, is now easily treatable with antibiotics.²² Human immunodeficiency virus (HIV), once uniformly fatal in the 1980s, is now a chronic disease manageable with antiviral therapy.²³ The term decubitus ominosus portended death in the 19th when interventions such as antiseptics and antibiotics were unknown and the nursing profession was just becoming established through the work of Florence Nightingale.²⁴ Many patients who died from infectious complications of pressure ulcers would have survived with today’s interventions.

The KTU was described before the transformation of the nursing home into a post-acute environment and before the emergence of long-term acute care hospitals.^2,25,26 Along with changes in the therapeutic environment, medical therapy and life-support measures in and of themselves have improved, modifying resident populations and trajectories of decline. Terminal ulcer terminology does not take into consideration the multitude of variables that influence mortality, including directives for aggressive care that result in life extension.²⁷ Labels incorporating terminal ulcer terminology when families elect aggressive care are better characterized with prognosis-neutral verbiage that utilizes accepted concepts of physiology and irremediable risk factors. 

The internet has altered the dynamics of health care, providing easy access to medical information that may not always be accurate or placed properly in context. Patients and families are better informed, and expectations are higher than ever.²⁸ The psychodynamic aspects of families making end-of-life decisions  can sometimes include denial, which complicates the process of realistic communication. Disease is viewed as something to be eradicated, and death often is perceived as failure. As clinician paternalism has given way to patient choice and shared decision making, patients are living longer with multiple illnesses, rendering end-of-life decision making more complex.²⁸ Terminal ulcer terminology with its inherent uncertainties can impact the end-of-life discussion and therefore should be replaced by terms incorporating physiologic commonalities with other organ systems unless impending death is an accepted certainty. 

A century ago, life expectancy was considerably shorter and death was typically sudden, with leading causes that included infection, accident, and childbirth.²⁹ Today in economically developed countries, most people reach old age and acquire chronic disease that increasingly interferes with usual activities until death.³⁰ The medical literature^7,31 reveals wide variation in the end-of-life period, ranging from days to years. Trajectories of decline also vary, which calls into question the clinical applicability of terminal ulcer terminology except in specific situations when the patient is actively dying.

Lunney et al³² described 4 end-of-life trajectories. The first is sudden death⁵; the second is a period of steep decline, typically related to cancer or other terminal illness that can last months to years. The third is characterized by chronic conditions such as heart failure and emphysema and can last months to years with acute exacerbations and progressive deterioration in health and functional status, although the timing of death is uncertain. The fourth trajectory is progressive decline related to generalized frailty with multiple organ system involvement that often includes dementia. Death may be related to an acute event such as infection, stroke, or major fracture. Some illnesses follow none of these trajectories, and trajectories can be combined depending on rates of decline and underlying comorbidities.³³ In addition, the end-of-life period can be further subdivided by different subtrajectories. Cohen-Mansfield et al³¹ reported as many as 9 stages in end-of-life trajectories; each substage has its own slope defined by different measurable spheres.

Terminal ulcer terminology does not take into consideration the wide range of end-of-life trajectories and timeframes. In addition, literature describing late-life trajectories does not take into consideration impairment of skin integrity, leaving another gap in research support for terminal ulcer terminology. Until models are developed and validated that meld pressure injuries with end-of-life trajectories, terminal ulcer terminology should be limited to specific situations wherein all caregivers including patient and family agree the patient is actively dying. Signs and symptoms of the active phase of dying have been published by the Hospice Patients Alliance and others.^34,35

Because terminal ulcer terminology can be defensive in nature, its application is subject to bias. Pressure ulcers are a universally accepted quality indicator and a common trigger for litigation, with more than 17 000 lawsuits per year.³⁶ Terminal ulcer terminology provides an intrinsic defensive strategy that relies upon the unavoidability of death to relieve caregivers of responsibility for a potential quality deficit.³ The defensive bias inherent in terminal ulcer terminology is explicitly expressed in a recent commentary that states that without the terms KTU, SCALE, and TBTTI, the defense attorney will have “little to defend any of us.”³⁷ It is known that bias can give rise to health care disparities and defensive medical decisions to avoid exposure to malpractice litigation.^38,39

Bias also may be introduced by other factors including age, gender, ethnicity, or location of the patient within the health care continuum.^39,40 Bias also may be a factor of caregiver experience and specialty.⁴¹ For example, a new wound in an elderly nursing home patient may be diagnosed as a terminal ulceration while a new wound in a younger patient undergoing aggressive care in the ICU may not receive that diagnosis. The fact that similar physiologic factors contribute to wound genesis, including the array of factors associated with unavoidable pressure injuries, argues for replacement of terminal ulcer terminology with prognosis-neutral nomenclature in clinical situations where imminent death may not be accepted by the health care team, including patient and family.^42,43 

Bias can be eliminated by addressing the process of clinical reasoning,⁴⁴ replacing terminal ulcer terminology with commonalities in physiology of wound development, and employing nomenclature in line with other organ systems such as the term skin failure. Unless the patient is recognized as actively dying, the unavoidable occurrence of pressure injury is better explained using recognized physiologic factors rather than terminology influenced by bias related to age, caregiver specialty, location in the health care continuum, or avoidance of malpractice litigation. 

Skin is the largest organ of the body and subject to failure similar to any other organ system. Given its large surface area as well as regional variations of anatomy and mechanical stress, skin may fail regionally as well as systemically, and failure can be acute or chronic.⁴⁵ Recent reports have attempted to test risk factors for skin failure, and there is overlap between the concepts of skin failure and unavoidable pressure injury.^43,45 Several recent articles^6,46,47 have discussed usage of the term and recommended how to operationalize the concept. The first definition of skin failure was proposed by Langemo et al.⁴⁸ In a subsequent publication, I proposed building upon this definition as follows: Skin failure is the state in which tissue tolerance is so compromised that cells can no longer survive in zones of physiological impairment that include hypoxia, local mechanical stress, impaired delivery of nutrients, and buildup of toxic metabolic byproducts.⁴⁶

Because skin failure introduces a common denominator of similar physiologic mechanisms, it can account for the high rate of breakdown in the ICU with multiorgan system failure or in persons with multiple comorbidities in the nursing home.⁴⁸ Skin failure also can account for unavoidable pressure injury in patients with irremediable risk factors, a concept applicable to all patients across the health care continuum.⁴³ Although underlying structures such as muscle might prove critical in wound development, the first manifestations of breakdown appear visually in skin.⁴⁹ When describing the physiology of skin failure, one can draw upon the array of recognized risk factors associated with unavoidable pressure injuries.^42,43 However, much research needs to be done to determine a clinically reliable algorithm for unavoidability.⁵⁰

Over the years, a variety of terms have been proposed for terminal ulceration, leaving caregivers, coders, and regulators confused when discussing these lesions. These terms remain isolated from mainstream concepts including trajectories of decline, scientific approach to prognostic models, and complex measures of disease severity. In addition, health care has evolved, with changed patient and family expectations and increased availability of information on the internet. There is need to understand the limits of terminal ulcer terminology while building a modern classification system that assembles concepts of wound genesis in a fashion consistent with nomenclature applied to all organ systems. 

Terminal ulceration should be recognized as a component of the spectrum of skin failure and used in situations where patients are recognized as actively dying by the health care team, including providers, patients, and families. If the patient is not recognized as actively dying, caregivers should employ prognostically neutral nomenclature consistent with current concepts of end-of-life trajectories, tissue physiology, and organ failure. Reframing terminal ulceration within the concept of skin failure will result in improved interdisciplinary communication, elimination of bias, better understanding of wound pathology and physiology, and creation of a sensible path to the future by allowing a comprehensive model for injury. 

Dr. Levine is an Associate Clinical Professor of Geriatric Medicine and Palliative Care, Icahn School of Medicine at Mount Sinai; and a wound consultant, New Jewish Home, New York, NY; and Advantage Surgical and Wound Care, El Segundo, CA. Please address correspondence to: Jeffrey M. Levine MD, AGSF, CWS-P, 928 Broadway, Suite 709, New York, NY 10010; email: jlevinemd@shcny.com. The opinions and statements of the clinicians providing Can We Talk? are specific to the respective authors and not necessarily those of Wound Management & Prevention or HMP.