As we prepare for death, we often become preoccupied with the physical components. For example, we get a room ready. Order a portable commode or hospital bed to help make us more comfortable. We ask many questions about what our bodies will do as we slow down.
All of this is important. But what about emotional and psychological changes that are coming? Unfortunately, we don’t always think about these aspects of the experience and, as a result, experience discomfort of a different sort.
When all three – physical, emotional, and psychological distress – combine, it often leads to terminal agitation. Awful, yes, but I’d argue - mostly avoidable.
Everybody is different. No two lives are the same, and no two deaths are the same either. Nonetheless, I’ve seen some commonalities in the dying process, including common feelings or emotions.
Not all of them, negative.
For example, dying people become understandably less interested in the outside world. They’ve got a lot going on inside themselves and sometimes withdraw from family and friends. Engaging in a “life review” is normal. During this important introspection, some careseekers want to be surrounded by very close loved ones. Others want to be completely alone.
They often spend their days contemplating everything, which means letting go and saying goodbye.
I’ve also seen many folks exhibit a unique awareness that confuses caregivers and visitors as death draws near. They talk to loved ones the rest of us can’t see or hear. Other times, they talk about a trip or “going away” somewhere.
A person close to death may have trouble remembering something that just occurred while remembering with great detail the events of long ago.
It’s not unusual for an impending death to bring periods of delirium. This can be the result of a drug’s side effects or changes in metabolism. Delirium looks different depending on the person but usually includes hallucinations or changes in consciousness. Medication helps ease these symptoms.
A Deep and Painful Agony
Terminal agitation is more extreme than the above examples and appears toward the very end of life. I’ve seen it most often show up as someone pulling or tugging at their bedsheets or clothes. They’re restless.
Other symptoms include:
Verbal outbursts
Anger
Hostility
Pulling out medical tubes
Indecisiveness
I’ve seen careseekers of different races, religions, and cultures experience terminal agitation. Some believe in a higher power; others do not. The one thing they had in common? Controlling personalities with notable anger and frustration.
The Root of It
By the time someone has this affliction, they’re usually unconscious or close to it. They can’t easily tell us what’s ailing them. I work with loved ones and experienced hospice nurses to try and figure it out so we can help them feel better.
Pain
It’s hard to be comfortable when we’re experiencing physical pain. This is especially true if someone postponed palliative or hospice care. Careseekers who choose hospice early on are better supported with medication and often avoid the physical suffering that leads to agitation.
I’ve also seen really great hospice nurses leaning close to a person’s face and asking simple yes-or-no questions, looking for changes in facial expressions to give us a clue. It could be that a catheter is needed or a sip of water.
Emotional Suffering
Sometimes my clients are angry about dying. This doesn’t just happen to the young. We can all feel like we’re leaving too soon - no matter our age.
While my clients are able, we make a list of what they’d like to do before they die. I help them prioritize and figure out a death plan for what’s reasonable. Therapists or psychologists also help ease suffering. They allow my clients to deal with unfinished business and the emotions that come along with it. That reduces the risk they’ll get agitated while actively dying.
Confusion
Those suffering from dementia especially get angry because they can’t cope with being so confused. A team with experience supporting patients with cognitive decline responds in ways that help dementia patients transition more peacefully and with less irritation.
Drugs and Side Effects
Some medicine that reduces anxiety also increases the risk of agitation. An experienced medical team will adjust medication as symptoms vary from person to person.
Organ Failure
When the liver and kidneys start to slow down, metabolism and chemistry alter our personality. Heart and lung failure also results in lower oxygen levels, and irritation follows.
Again, call hospice before it’s an emergency situation. Medical teams who are on call earlier get to know their patients, their medical history, and help alleviate terminal agitation by reducing symptoms of:
Anemia
Infections
Fevers
Urinary retention
Constipation
Informed Caregivers Make a Difference
Understand that even though terminal agitation isn’t personal, there are things caregivers can do to make it less of an issue.
For example:
Remember and apply the Ring Theory. You’re going to naturally feel sad, but it’s your role to “comfort in, dump out.”
Find a solid support system to work through any troubles or emotional pain you’re experiencing as a result of providing care. Take time to process your feelings and care for yourself. This is how you better care for others.
Stay calm when interacting with your dying loved one.
Lower your voice, even if your loved one gets louder.
Do not argue.
Sit down rather than stand over the person. This will help lower their anxiety.
Keep your body open and receptive. For example, uncross your arms and legs.
Take breaks to meditate and breathe.
Create a peaceful space.
Make sure only positive people visit and hold vigil.
Turn the lights down, play soft music, and limit the number of visitors.
Ask if you may hold their hands and be okay sitting in silence.
Check with the medical team frequently. Make sure they are doing everything in their power to ensure your loved one is comfortable. This includes asking about palliative sedation.
Preparation Makes a Difference
Before you start actively dying, build a supportive care team. Address emotional and spiritual needs before it’s too late. Talk with hospice teams to make sure they’ll support loved ones who request palliative sedation when you cannot.
This helps make the last few days easier for everyone involved.