NPIAP Tackles Issue of Skin Changes in Actively Dying Patients

The National Pressure Injury Advisory Panel, Inc.(NPIAP) hosted a conference on November 19th and 20th in Washington, D.C. to address the condition widely known as “Skin failure,” “Kennedy Terminal Ulcers” or “Skin Changes at Life’s End (SCALE)”. The purpose of this event was to draw attention to how little current science exists on this skin color change. The conference was co-chaired by NPIAP President, Bill Padula, PhD, MS, MSc
and Vice President, Joyce Black, PhD, RN, FAAN.

The conference kicked off with a keynote address from former U.S. Congressman, Jack Kingston, who gave strategic advice to the audience on how to communicate the importance of pressure injury outcomes as a matter of national importance.

Following the conference’s keynote, NPIAP dove into a matter that has rarely achieved more than scratch the surface attention in our understanding of unavoidable wounds, commonly confused as pressure injuries. A “word salad” process showed that most attendees called changes in the color of the skin at the sacrum/coccyx near the time of death “skin failure.” The words evolved by the end of the conference to “skin change” (associated with dying). These events below are likely what contributed to the change in thinking.

Conference proceedings started with an unfolding case study of an elderly patient with sepsis from pneumonia whose lung and mental condition had not improved despite six days of antibiotic treatment. On the day of the family conference, which was held to consider intubation versus hospice, a maroon-purple area was found on her coccyx. It was diagnosed by a team of expert clinicians as deep tissue pressure injury. The clinicians didn’t know at the time of their diagnosis, that the patient would die the following day. So, was this skin failure? A Kennedy Terminal Ulcer? SCALE? How could they have known when she was “examined”? With little diagnostic guidance, how can you know? What guidance can be given to the family? One of the NPIAP members related the role of the family when a loved one develops these skin changes.

Three new data sets were presented to the audience:

1. A survey of experienced nurses who had seen firsthand this skin change that preceded death. These lesions were non-blanchable, cool purple (or maroon) skin color changes associated with critical illness. The pain in the area was generally unknown because the patient could not respond. Most patients died before the area progressed.
2. Histologic specimens taken from embalmed cadavers from areas on the sacrum that were dark intact skin. An important component to these samples is that the uninvolved skin was histologically intact to draw some comparisons. Changes in the lesions were present but did not appear like stage 1 or deep tissue pressure injury histologic specimens.
3. Thermographic images of skin color change in the sacrum and coccyx in patients in hospice showed no ischemia or inflammation. The thermal images appeared like normal skin.

It was evident from the photographs that a change in the skin color was present, but the pathology of the condition remained unclear. Two attorneys (one representing the patient claiming the pressure injury should have been prevented and one representing the providers of care) emphasized the need to have a clearer cadre of science to diagnose these wounds. The unsupported opinion of the experts without scientific data will be challenged in court.

The next portion of the program recognized that the science behind these skin changes was also important to organizations that regulate and measure healthcare outcomes. This unique component of the conference offered higher level views on data accuracy drawn from an electronic medical record, compared pressure injury outcomes in one facility to another, and explored the probable impact of the current and future shortage of nurses on pressure injury outcomes.

A clinical panel in the latter half of the day determined that whether or not NPIAP needed to differentiate skin changes at end-of-life depended on whether clinicians should treat that patient differently than they treat a patient rehabilitating from a staged pressure injury. One palliative care physician, in particular, noted that the withdrawal of care is not a care tactic, nor is it evidence-based.

Next, a policy panel presented options for NPIAP to advocate for coding and reimbursement of these wounds not caused by pressure and shear. Establishing a new diagnosis code using the term “unavoidable” could prove challenging given existing codes already in use within the ICD coding system. The addition of exclusions to PSI-03 for specific cohorts of patients predisposed to risk of pressure injury using empirical evidence may be easier to incorporate into the current ICD coding system. Exclusions may not necessarily get other wound outcomes reimbursed, but could help hospitals avoid penalties if their wound outcomes justifiably are not caused by pressure.

On the final day of the conference, attendees self-selected and actively contributed to the discussion in one of seven small working groups. Each group explored a pertinent topic that had been previously identified or was raised during the course of the conference. Groups discussed whether or not additional scientific data was needed on their topic and what methods might be utilized to gather that data.. Each group generated a list of ideas and methods to close the gaps which were shared verbally at the conclusion of the conference. The lists will be published at a later date.