How to Manage Confusion and Delirium at End-of-Life
Confusion and delirium are common end-of-life occurrences, but they can be very distressing to the patient and the family or caregiver.
Sometimes confusion stems from the chronic disease itself. When patients have brain cancer, there is often confusion and emotional lability because of tumor location. If patients have lung disease, their brain oxygen supply is limited, which may lead to confusion. If a patient has end-stage liver disease, the liver cannot adequately remove toxins from the blood, which can lead to confusion. With renal disease, kidneys are not functioning at their optimum capacity and the toxins built up in the blood may lead to confusion.
Medications like opioids and benzodiazepines can also cause confusion or the inability to think clearly.
Delirium is a type of confusion that may be treatable or reversible if discovered early. It presents in a wide range of ways: the patient may confuse their days and nights; they may speak incoherently, become forgetful, have a difficult time concentrating on a task or conversation; they may alternate from sleepy to hypervigilant, and/or they may have hallucinations. They may be restless and agitated. The most defining characteristic of delirium is that it comes on suddenly and has a fluctuating course (it comes and goes).
Common reasons for delirium include constipation, extremely low or high blood sugar, an infection (urinary tract infection, sepsis, pneumonia), medications like opioids (morphine, oxycodone) or benzodiazepines (lorazepam), urinary retention, urinary catheters, low oxygen levels, unrelieved pain, and decreased fluid intake.
Sometimes the delirium can be treated when the cause is found. If the patient has a UTI, they may need a round of oral antibiotics; if the patient's oxygen levels are low, the patient may simply need some oxygen; and if they have not had a bowel movement for three days, they may need a suppository.
Sometimes delirium occurs because the patient is in their final days to weeks of life, and this is called terminal delirium or terminal agitation. It generally manifests as agitation, restlessness, confusion, or attempts to get out of bed when they are too weak. We don't know why certain patients experience this distressing symptom at the end of their life, but we can medicate it (and medication is typically the only way to calm the patient).
If your loved one is exhibiting any new confusion or any of these characteristics listed, call the hospice team right away because delirium often gets worse.
Sometimes the only way to manage delirium is with medications, especially if the patient is distressed, agitated, restless, or unsafe. Medications that we use for delirium are:
Risperdal, or risperidone
Haldol, or haloperidol
Zyprexa, or olanzapine
Seroquel, or quetiapine
Phenobarbital
These medications can be surprisingly effective in alleviating the delirium, but it may take anywhere from hours to days for the patient to return to their normal cognitive baseline. Or they may not return to their normal baseline. They may need consistent medication to manage the delirium.
My personal opinion is that it’s better for the patient to sleep than to be awake and agitated or awake and distressed by hallucinations or restlessness.
When your loved one is confused or delirious, here are some considerations to keep in mind:
Call the hospice team any time you have a concern.
You probably need to increase the amount of home care because the patient is not safe to be alone and will likely need 24/7 coverage. You will need some additional support at this time.
Constantly think about their safety. Can they make it to the bathroom on their own? Are there any hazards in their path, like rugs, pets, or small children?
If their confusion is not distressing to them, do not try to correct them and their confused story—just go with it. Reassure them they are safe, they are home, and you are with them.
Sometimes delirious patients will have disturbing hallucinations. Reassure them they are safe and you are with them. Call the hospice team as they may prescribe medications to alleviate this distress.
Establish routines to help orient them to the day and night. Open blinds in the morning. Ideally, get them outside for some air and sunlight during the day, and consider setting breakfast, lunch, and dinner times.
Gently remind them of the day, the month, and the year. You can keep a calendar nearby for reference.
Try to find meaning in the behavior. One of my patients kept kicking her suitcase, and I said, “You seem like you are really mad that you are here.” She said in the clearest voice I had heard in two hours, “You bet I am! That man and woman just dropped me off here and left me. You bet I'm mad.” I assumed the man and woman were her daughter and son-in-law, who had dropped her off for respite care. To recognize and verbalize the meaning in her behavior helped to establish trust and rapport with the patient. She felt seen and understood.
Sometimes the inability to communicate can be misinterpreted for confusion—they simply do not have the ability to express themselves appropriately.
Maintain a calm room environment, calm lighting, and calm sounds. Sometimes television shows can seep into their reality, which increases their confusion.
Try distraction or redirection. One of my patients had clever adult children who knew how to redirect and distract their mom. She would call her daughter and the daughter would say, “Mom, are you calling me because I'm your favorite?” This would make the patient laugh and completely forget her distress. Or her son would FaceTime her and say, “Mom, look at me closely. No, really look at me.” And the patient would bring her phone close and inspect her son. He would say, “You made this fine specimen.” The patient would crack up, roll her eyes, and say, “Return to sender, return to sender,” completely forgetting her agitation.
Always think about their safety and consider all of the steps involved in their requests. If they want to take a shower, consider if they could realistically get in the shower, withstand five minutes in the shower, and get safely out of the shower. Stairs are also a big one. It is much easier to get someone up the stairs but waaaaay more dangerous to help someone down the stairs. If you think it will end in a disaster, it just may. Redirect your loved one and call the hospice team for guidance.
If they cannot safely take a shower, you can request a home health aide to give them a bed bath.
Ask to increase the frequency of the nurse visits.
Delirium and confusion are very distressing symptoms. Call your hospice team if your loved one is confused at any time. Call in family support and reinforcement at home because this can be a tough symptom to manage on your own. Too many patients and families endure delirium because it comes and goes. The hospice team will suss out the root cause of the delirium and, if it is fixable, will make every attempt to reverse it. Sometimes medication management may be the most peaceful resolution for the delirium, and sometimes helping the patient orient themself is the best option.
Blessings.
Writer’s note: The subjects described in the following story are not actual patients, but stories that include a combination of many patients and scenarios over the years.