Patient Family Perspective on the Delirium Experience

Contributed by Namrata Patil, MD MPH of Brigham & Women’s Hospital and Faculty at Harvard Medical School, Boston.


Two female doctors looking at an older man lying in a hospital bed.

“Doctor, is he still like that? If he is still the same I am not coming in….,” her voice cracks as she breaks into sobs on the other side of the phone. My patient’s wife does not want to see him in his current delirious condition. I have witnessed many such conversations and scenarios during my training and then as a staff. Typically, as residents, we were trained to respond to pages from the nursing staff as, “I will write for Haldol”.
Unless we heard again from the nursing staff we tended to our other responsibilities. Now the scene has changed.
As the attending staff and a delirium researcher, I have become extremely aware of challenges delirium poses to our patient’s recovery and the impact it leaves behind. This impact is not only limited to the patients and bedside providers but extends to patient families. In fact, patient’s families bear most of the emotional burden of watching their loved one suffer through the delirious state complicating their recovery. Most of the patients have no recall of their delirious state. The ones who have some recall either have vague and unclear memories of instances or they report it as ‘being under the fog.’ Some patients are left with feelings of embarrassment or guilt once they hear of their inappropriate behavior towards the staff. It is very important that we educate patients and families to treat this phase as part of the patient’s recovery process and supportive in overcoming this guilt or embarrassment.
Delirium often invokes the emotions of fear, mistrust, disappointment, embarrassment, and worry among the patient’s family members. They get very scared if the patient gets very agitated requiring chemical or physical restraints. They develop mistrust if the patient keeps voicing suspicions that one or more members of the care team are trying to hurt him/her. As we know from research studies, delirious patient’s perceptions of harm are derived from the misunderstanding they have of their surroundings in the altered state of mind. If the family develops mistrust or worry, the best way to help the situation is by asking them to be at the bedside as much as possible. This helps the patient feel secure, helps them reorient and allows the family an opportunity to witness that no one is trying to hurt their loved one. This presents an opportunity to educate the patient families about delirium. Many times delirious patients don’t recognize their family members. This is very disappointing and heartbreaking to the family members, especially if it is their spouse. These are the situations where more often they would not want to see the patient until their delirium starts resolving. If you try to convince them to be at the bedside to help the patient reorient, you often will get a reply, “He/she doesn’t even recognize me!”
Many times I overhear conversations between the care team members and the family members about why their loved one is having an agitational or hypoactive delirium. It is interesting to see how our own biases play a role in how we, as the care providers, disseminate the information. Sometimes I see the conversation revolve more around alcohol and delirium to such an extent that the family members think that the staff is accusing their loved one of abusing alcohol. Other times, I have seen it open more layers of the patient’s history that may prove helpful into the recovery of the patient. Many times fear that something bad is going on with the patient grips the family so much that they cannot receive any information consciously as their minds are pre-occupied with the fear.
There is not much in the scientific literature about the family’s perspectives of the delirious patient. Most of the studies come from the nursing literature and they are retrospective qualitative studies that endorse the feelings of the family members discussed above. Based on my own longitudinal experience of more than a decade in working with delirious patients, I have found that this perspective is one of the most difficult aspects of the delirium studies. In real time, delirium causes so much worry among the family members that they are very distraught to talk about it and after discharge, they have one strong feeling that they carry with them and that is the suspicion of the patient having received one or more medications that caused this episode.
As we continue to work further in this field and keep having more conversations with the families, we have an opportunity to educate not only the staff members but also the patents and their families about delirium.
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