Steven was a charismatic gentleman who had been admitted to hospice about three months ago for end stage Parkinson’s Disease. Steven lived at home with his wife Bea, who also served as his primary caregiver.

Overall, Steven had been steadily declining and had experienced some recent bouts of confusion, but he was still able to ambulate some and was still taking some of his Parkinson’s medications. During the IDG team meetings, it always felt like Steven was up on the screen for a short time, little was changed and often “no change” was communicated by the team. So, it was a little bit of shock when his wife called and reported things were not going well. Steven had not slept for the past three nights and was very confused.

Now I’m a big proponent of teaching the following:

1) Understand the likely symptoms that each patient might have based on their hospice diagnosis or diagnoses. If you know what these are, you can plan.

2) Recognize and understand the difference between acute vs gradual change and reversible and irreversible causes of agitation/delirium.

With the above in mind, this is an acute change for Steven, though common to see increased confusion and agitation with end stage Parkinson’s and he could be declining towards the end, it didn’t seem to fit and warranted a rule out. In addition, the chief complaint is no sleep, agitation and confusion, which go hand in hand.

Reminding ourselves of possible causes of delirium, we know that lack of sleep with hospice patients is a major cause. The hospice case manager and I immediately start working through what’s likely to happen in Parkinson’s and where we should look. Constipation, urinary retention, infection (UTI and aspiration pneumonia), dehydration/electrolyte abnormality, pain, and medications typically float to the top. For Steven, his bowel and bladder were unchanged, no signs of infection were present, skin turgor was unremarkable, no changes in non-verbal signs of pain. We briefly discussed that Parkinson’s medications towards the end provide limited benefit and often can start to produce agitation, confusion and hallucinations, but overall, that wasn’t what caught my attention.

Bea had said something to the nurse that sparked a thought. She was talking about how Steven had been getting worse and his “freezing of gait” (FOG) with door thresholds had become a challenge despite his medications. She had to make the hard decision to move Steven from the bedroom to the dining room where there was just more room and a direct path to the restroom.

Change in location, like moving from a bedroom to the dining room, is on the list of causes of delirium, but it was Bea’s next comment that solidified the cause.  Bea states: “I just want everyone to be safe, so I added these nightlights”.  Adding nightlights is common and what any person would do to prevent falls, but what this can sometimes do in Parkinson’s patients is cause shadows. “Parkinson’s Shadows” can lead to hallucinations and fear and can be a common cause of insomnia. The timeline fits with the location change and nightlight addition.

So instead of increasing the dose of quetiapine (Seroquel) and attempting to “force” sleep with antipsychotics, which is not best practice and usually fails, we removed the low light nightlights and added a brighter light in the room, discussed with the medical director about using trazodone to reverse the sleep deprived delirium and after 48 hours the agitation and delirium subsided.

Cases like these remind us the importance of walking through a differential and looking for causes of our patient’s symptoms, sharing with the IDG team, and the importance to always be listening for clues.