Terminal Delirium

Lately we had a training session on signs and symptoms associated with dying. I had never realized what the difference between signs and symptoms is: Signs are what doctors or others observe. Symptoms are what people feel.

Some signs associated with dying are:

• Respiratory compromise, or irregular breathing.
• The person’s eyes are open and staring. This may happen coincident with mandibular breathing (see below), and death may be about five hours away.
• There is possible delirium due to decreased blood and therefore less oxygen to brain. This is specifically “terminal delirium” and is identified in retrospect: If the person dies before coming out of it, it was terminal delirium.
• Less eating and drinking.
• Decreased socialization. Person turns inward, and touch may be unwelcome.
• Weakness and fatigue.

In the last 48 hours of life, these may be seen:

• Mandibular breathing: jaw slack, mouth open. Sometimes you see someone’s head all wrapped up; this is to keep her mouth from hanging open.
• Death rattle. Pharyngeal muscles get weak and secretions pool. Death is a median 57 hours away.
• Cyanosis: cool/bluish extremities, often in hands. Mottling of legs. Death about 2.5 hours away.
• Lost radial (wrist) pulse. Seen at the same time as cyanosis. Death about 2.5 hours away.
  

As for symptoms, the dying person may experience shortness of breath, pain (depending on what she is dying of), nausea, dry mouth (due to breathing with mouth open), spiritual distress.

I heard a palliative care doctor tell a patient that, while other teams often think about pain in terms of intensity (“What number is your pain from one to ten?”), palliative care team members think about function: “What are you unable to do because of your pain?”

We recently had a didactic on family meetings—gatherings of the care team plus the patient’s family, with or without the patient, depending on her preferences and how decisions are made in that family. This varies culturally.

Chaplains generally don’t run these meetings. They are usually led by a doctor, but a chaplain may have the closest relationship with the patient and the best understanding of the patient and her emotions. Meetings have both informational and emotional bands, and are to build relationships and work toward making decisions about care. If a meeting shows no sign of ending, someone can say something like, “We’ve been meeting for a while—I wonder if there are decisions we need to make today.” The social worker presenting this didactic estimated that the “executive function” (the ability to make decisions) of a patient or family member goes down by one-third as soon as the person steps into the hospital.

Delia explained to me some of the downsides of providing nutrition via a tube: it prolongs the dying process, is uncomfortable for the patient, and leads to “third spacing” (fluid ending up where it normally isn’t in the body and where it should not be). It can even cause pneumonia due to aspiration of the substance being delivered, even though it’s coming in through a tube.

In all these weeks of my being on the palliative care rotation, Delia has observed me conducting a visit with a patient only a couple of times. I have often gone on my own, or observed her, or gone on a team visit and watched her or a doctor or social worker in action. The other day, she observed me as I visited a patient who was waiting for life-or-death news after a test to be performed later that day. He was in tears.

I spent 15 or 20 minutes with him, and afterward, Delia shared her notes with me. She pointed out a couple of things she liked, but on the whole, she felt I was not willing to journey with him emotionally, as evidenced by the fact that I changed the subject a couple of times. (I can explain why I did that, but it would get into rather arcane details of our training, so I will just say that, in the moment, I thought I was doing the right thing.) Delia said she thinks about diving down versus popping up, and she said I kept popping up.

Delia has said in the past that the three most important things a chaplain does, in this order, are to be present, to listen, and to affirm strengths. However, when the patient is having feelings is not the time to affirm strengths, and she also said not to strain for things to affirm. If I do happen to observe strengths, I can mention them at the end of the visit: “This is very difficult and you’re coping very well.”

At this point, I was somewhat stricken. I felt I’d failed this man utterly and wanted to rush back into his room to try again, but Delia said, “What you did was acceptable. I’m trying to nudge you up a level. He felt cared for. Don’t beat yourself up over it.” She also said, “I’m being tough on you. Hope that’s OK. You can take it. You’re mature enough.”

I was extremely relieved and also delighted when, the next day, Delia said, “Mr. B. has been approved for a transplant.”