Kennedy Terminal Ulcers and the Legal Dangers of Caregiving
Clinicians are aware that organs begin to shut down as a person starts their journey through their last weeks and even days. Caregivers, however, are often left bewildered by what some patients must go through prior to death. The Kennedy Terminal Ulcer (KTU) is devastating to the caregiver if there has been no education provided on what to expect at the end of a patient's life and the skin changes that may occur.
As a certified wound and ostomy nurse, I have seen the heartbreaking effects on those caregivers who have witnessed the development of a KTU, whether it be in a facility or at the patient's home. The sad reality is a caregiver may find themselves convicted of elder abuse/neglect when a KTU is not recognized as unavoidable skin breakdown. This was the case for Kristine Mayle (The State of Wisconsin vs. Kristine M. Mayle) who was imprisoned for three years because of a KTU. I believe the conviction came because of a lack of knowledge by the medical, law enforcement and judicial systems.
The Legal Defense for a Kennedy Terminal Ulcer
Defense witness Joy Schank, a nurse practitioner, wound ostomy continence nurse, and a Skin Changes at Life's End (SCALE) panel member, testified on behalf of Mayle. She argued the deceased was in the final stages of Alzheimer's disease. "Everything was done correctly," Schank said. "There was no evidence of physical abuse."
Schank's testimony was clear that the skin breakdown was a KTU. It was caused by skin changes at life's end and was unavoidable. But the District Attorney said in his closing argument, that he didn't believe Mayle's care was good enough. He argued, "Mayle had an obligation to seek care." He added, "She was in some type of pain and she was deprived of a basic need - a lack of proper care." He claimed "the defense would have you believe that the ulcer is unavoidable and isn't treatable…Wrap it up and move on and that offends me."
What this district attorney apparently did not understand is, as we enter the dying phase, it is natural for a person not to want to eat or drink. Organs begin to fail and that includes the skin. Clinicians definitely see this in those who have advanced Alzheimer's disease.
The defense attorney stated, "Death was a natural occurrence of life." In this case "death was a natural consequence" of Alzheimer's disease. The attorney added Mayle did not walk away from her aunt. Mayle was 42 years old at the time. She had four children, with the youngest being 4 years old. She agreed to care for her aunt because her aunt asked her to do this and did not want to go to a nursing home. Mayle stated she struggled with her aunt's well-known fear of doctors and refusal to seek any type of health care. Mayle considered her aunt as a second mother and wanted to follow her aunt’s final wishes.
Mayle stated she did what she could under the circumstances, but did not know about any community resources available to her. She believes the public needs more education about help that may be available. She said, "how simple it would have been to put her [aunt] in a home and live my own life." But she added, "Her fear of doctors and medical facilities was very real. I knew that my whole life." Mayle never dreamed that caring for her aunt could lead to felony charges and imprisonment.
The Message to Caregivers
The verdict in this legal case sends a clear message to caregivers about their care. The program director for the Aging and Disability Resource Center said, "We're also hoping that this case sheds light on the issue of elder abuse, which is one of the fastest growing crimes our office deals with."
Mayle said what the SCALE panel and others in the medical community have said for years. More education is needed. It is horrifying to realize lay caregivers have been imprisoned because they chose to care for their loved ones. Unfortunately, others have been charged since this case.
So what does all this mean? There is now a precedent set and those who are caregivers are even more at-risk for a lawsuit which will deter the lay person to care for their loved one as they face skin issues at life's end.
The National Pressure Ulcer Advisory Panel and Centers for Medicare and Medicaid Services recognize there is skin breakdown that is unavoidable at the end of life, even with the best of care which includes a coordinated plan of care, therapeutic support surfaces, turning schedules, preventative skin care and other interventions. It should be noted the KTU is not the cause of death. It is a warning the individual’s body is shutting down inside. Some professional and non-professional persons believe KTUs are the result of poor care, but those who have witnessed this phenomena know it is not true.
Since the SCALE panel recommended in their 2009 consensus publication that more research be done to facilitate a better understanding of what happens to skin at life's end, no significant data or research has been completed. As a SCALE panel member, I reach out to the medical community to support the research that is needed to help us define and better understand the KTU for greater awareness and education.
About the Author
Rick Hall is a wound and ostomy educator and consultant for Kaiser Permanente.
The views and opinions expressed in this blog are solely those of the author, and do not represent the views of WoundSource, Kestrel Health Information, Inc., its affiliates, or subsidiary companies.