Managing pressure ulcer risks in the terminally ill

By Elizabeth E. Hogue, Esq.
Burtonsville, MD

Calculation of damages in malpractice cases involving negligence often includes the life expectancy of injured patients as a key component. Therefore, agencies should, at least in theory, have some added protection against large monetary awards. It now appears, however, that courts and juries may have a great deal of sympathy for patients with limited life expectancies, so providers must devote increasing attention to risk management issues when caring for terminally ill patients.

Agencies generally are familiar with liability based upon substandard wound care. Based upon the possibility that terminally ill patients may develop a type of pressure ulcer called a "Kennedy Terminal Ulcer," providers must take steps to minimize claims of substandard wound care.

The Kennedy Terminal Ulcer was first identified by Karen Kennedy. Her web site ( says that a Kennedy Terminal Ulcer is a pressure ulcer that some patients develop as they get closer to death. These types of ulcers, which often are shaped like a pear in the sacral area, are red, yellow, and black in color and have irregular borders.

Kennedy Terminal Ulcers often have an extremely sudden onset. They usually start out as blisters or Stage II pressure ulcers and rapidly progress to Stage III or IV. They tend to start out larger than other types of pressure ulcers, and usually are more superficial initially but increase very rapidly in size and depth. The causes of these ulcers are unclear. Kennedy suggests on her web site that they may be caused by a blood profusion problem exacerbated by the dying process. They also may be a symptom of multiorgan failure toward the end of life.

When Kennedy Terminal Ulcers progress to Stages III or IV, they may look terrible to patients and their families who do not know very much about pressure ulcers. It may be hard for them to understand that such awful-looking wounds developed even though care rendered was within applicable standards of care. It may be equally difficult for judges and juries to comprehend how such terrible wounds could develop unless hospice providers were negligent in some way.

How to minimize risk

The following are some practical steps home health agencies can take to minimize risks associated with claims of substandard would care.

1. Educate all staff providing direct patient care about the signs that a Kennedy Terminal Ulcer may be developing. Specifically, staff members need to know that these types of ulcers often begin as little black spots. Providers may think it is a speck of dirt or dried bowel movement and try to wash it away only to find that it is under the skin, not on the surface of the skin. In a matter of hours, the spot may look like a small black blood blister or like someone colored it with a permanent marker. The patient’s skin may be intact in the morning; but by the same afternoon, providers may observe the above.

2. Develop a policy and procedure for routine observation of all patients for development of pressure ulcers, including the Kennedy Terminal Ulcer. The policy and procedure should, of course, include routine documentation of compliance with the protocol.

3. As soon as staff members identify a possible onset of a Kennedy Terminal Ulcer, they should begin treatment. Applicable standards of care indicate that these types of ulcers should be treated just like other pressure ulcers.

4. Educate patients and their caregivers about the possibility of rapid onset of Kennedy Terminal Ulcers. Staff may even want to show patients and their caregivers pictures of these types of ulcers in various stages so that they are alert for possible development of them. Staff who provide this education should emphasize to patients and their caregivers that these types of ulcers often develop in terminally ill patients and do not necessarily mean that caregivers, both professional and nonprofessional, failed to provide appropriate care. In other words, appropriate expectations about these types of ulcers may prevent caregivers and families from reaching erroneous conclusions about the quality of care provided by agencies.

5. As soon as there are signs of the development of Kennedy Terminal Ulcers, visiting staff should take pictures of the wound. In view of the rapid onset of these ulcers, staff initially may want to take pictures during each visit. The name of the patient and the date on which the picture was taken must appear in the picture as opposed to writing it on the picture. Patients must also, of course, give written permission for the taking of photo-graphs. Agencies are well-advised to obtain general consent for the taking of pictures upon admission.

Home care providers generally care very deeply for patients and their families and have very positive relationships with them.

Allegations of substandard wound care based on the development of Kennedy Terminal Ulcers should not adversely affect an otherwise excellent relationship if agencies take proper precautions to manage risks associated with these types of pressure ulcers.

[To obtain more information about negligence and risk management related to wound care in a book — Legal Liability — send a check for $30 (includes shipping and handling) to Elizabeth E. Hogue at the following address. To obtain a copy of Wound Care: Legal Issues, send a check for $35 (includes shipping and handling) to Elizabeth E. Hogue. A complete list of Elizabeth Hogue’s publications is available by contacting Elizabeth E. Hogue, Esq., 15118 Liberty Grove, Burtonsville, MD 20866. Phone: (301) 421-0143. Fax (301) 421-1699. E-mail:]