Friday, December 1, 2017

The Emotions of the Dying

By Lizzy Miles

In my role as a hospice social worker, I find that there are recurring concerns expressed by family and friends of the dying. These are some of my responses to their worries. Mostly I find that I am normalizing behavior that they find confusing or unsettling, while also validating their discomfort. Families often feel helpless and I do my best to reassure them that what is happening with the patient is part of the process of dying.

I am careful to be mindful of faith/cultural beliefs of the patient and family so as to not suggest an explanation that is outside of their dogma.

Restlessness
Restlessness is a common symptom for patients who are dying. It can be distressing for family members because you want to help calm them and nothing seems to work. Medicine may help some, but you may see them still moving around and/or trying to get out of bed.
• Know that restlessness is normal and part of the process.
• When patients are restless, they are experiencing a disconnect between their conscious and unconscious mind. They subconsciously know they are dying, but their conscious mind just knows they need to go somewhere. There are books about the travel metaphors patients sometimes use. I need my ticket. I’m going to be late for the train. There is a helicopter waiting for me.
• As a patient gets closer to death, they often settle down on their own.
• Be mindful of guest activity in the room.  Restlessness can sometimes be contagious. The patient, even when their eyes are closed, can tell if their family is unsettled.
• Observe hand gestures. Sometimes patients experience a “life review” and you may notice they are miming favorite activities such as fishing, construction, driving or eating.
• Update hospice staff if you see changes or if the patient is at risk of falling out of bed.

Waiting for Death
The feeling of uncertainty for patients and families during this time can be unsettling. How much time do they have left? A patient may say they are ready to die, and then express frustration when it doesn’t happen right away. Sometimes they say, “Why isn’t God taking me?”
• Frustration with the uncertainty of everything is normal for patients and their loved ones.
• For loved ones, it is an act of love to have patience with the process of dying.  This includes an acceptance that a patient’s withdraw from the outside world is part of the process.
• When patients are imminently dying, internally, they may be experiencing a “life review.” As part of this process, patients are reflecting on their lives. If a patient has regrets, it may take them a while to sort through everything. 
• Patients usually withdraw from the outside world with or without medications. It is not necessarily medication that is making them talk less or sleep more.
• Prognostication (predicting when) is never an exact science. Hospice providers do their best to give a range because every patient is different. The emotional aspect of dying can affect the timing of how fast or how slowly everything happens.

On “Letting Go”
The act of letting go for a dying patient may be more complicated than family members and friends realize. Patients may want reassurance from their loved ones that it’s okay to “go,” however, there might be other factors.
• Patients who were accepting of death “in theory” may be scared now. Even patients with strong faith who feel they lived a good life and believe in Heaven can be nervous.
• The patient may not be able to “let go” when certain people are present or until someone arrives. Every patient is unique, and we may not be able to anticipate the right conditions for them to feel okay with letting go, but it usually makes sense afterwards.
• As part of the process of letting go, patients often become more withdrawn and less interactive. This is their “leave-taking” behavior. We cannot stop them from dying. If we cling too tightly, it may just make the goodbye more difficult for them.
• A patient could die in front of a room full of people, or may choose to die in the middle of the night when no one is there.
• If you have already told your loved one, “It’s okay to go” – be aware that if you tell them multiple times that it’s okay to die it may be feel like you are pressuring them. Don’t forget, dying can be scary!  Perhaps you could say, “Take your time. Go when you’re ready.”

With every patient death, I learn more. In addition to my personal and work experiences with dying, I am an avid reader on the topic. Here are some books that I found helpful on the subject of actively dying.

The Four Things that Matter Most by Ira Byock
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley
Visions, Trips, and Crowded Rooms: Who and What You See Before You Die by David Kessler
The Grace in Dying: How We Are Transformed Spiritually as We Die by Katherine Singh

Photos via unsplash
Samuel Zeller
Dan Gribbin

Lizzy Miles, MA, MSW, LSW is still trying to figure out how she needs to project a happy-go-lucky vibe. She is a hospice social worker in Columbus, Ohio and regular contributor to Pallimed.org. Lizzy authored a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

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