Am I Doing Any Good?: Spiritual Care for People with Cognitive Deficits at the End of Life
“What can I do if a patient can’t talk to me?” “Will this person remember my visit five minutes from now?” “How do I know if this person can hear me?” “Is my being here doing any good?”
These questions bothered me every day when I started work as a chaplain. I was new to hospice chaplaincy after serving in congregational ministry for 30 years. As a pastor, spiritual care had been mostly conversation and prayer. It was hard for me to see how a non-conversational person could receive any spiritual care at all. I asked other chaplains who worked with me what they did when they visited someone with Alzheimer’s, but they had no answers.
This issue kept disturbing me until I decided to make it the focus of my dissertation. I was engaged in a Doctor of Ministry degree at ACU, and my intervention was solving the question of how to provide spiritual care for people with cognitive deficits. I found a group of seasoned hospice chaplains around the country who agreed to provide specific answers to my questions.
They told me what to do and what not to do. They said to slow down, not be in a hurry, and always speak in a calm and reassuring voice. Speak directly to the patient, rather than talking about her in the third person. Don’t assume they can’t hear you, but ask a caregiver if they have hearing aids or if one ear works better than the other. Play them music on your phone. Ask their family what they like, or play music their generation liked when they were young.
They told me what to say and what not to say. If they ask for their mother or father, don’t say, “Your parents are dead.” Instead, go along with their reality. Say things like, “Your parents are about to see you. They can’t wait to see you.” Say things like, “We are here for you. We are taking good care of you. You are in a good place. You are safe.”
Perhaps most importantly, they told me how to think differently. Instead of thinking, “I am wasting my time here,” think, “the gift of my time here honors this person as an individual worthy of love and respect.” A chaplain’s role is not to fix things or “do” something, but to bear silent witness to the suffering of another person.
As I gained insight from veteran chaplains on serving unresponsive patients, I heard stories of hope that inspired me. One story was from Chaplain Darrah Glenn, who worked in a facility where all of her patients were intubated and comatose, unable to respond in any way to her ministry. One of her patients named Jim had been in a coma for many years. Each time she visited him, she greeted him and told him her name. She talked about current events or what a beautiful day it was. She told him he was loved and important.
One day Jim was surrounded by excited nurses. He had moved! He didn’t open his eyes, but he could respond to “yes” or “no” questions by raising either his left index finger (yes) or his right (no). Chaplain Darrah approached Jim’s bed and gave him her usual greeting. She asked, “Do you know who I am?” He raised his left index finger: “yes.” She said, “Do you remember me coming to visit you for the last two years?” Again, his left index finger went up: “yes.” He knew her, and he remembered her visits. Jim had been unresponsive and in a coma for the last 19 years, but the final two years a chaplain provided him spiritual care that made a difference in his life.
More than any advice or any story, a live demonstration of spiritual care helped me the most. The video in the link below is a brilliant example of what can happen when a chaplain is willing to take their time, engage at the patient’s level of accessibility, and build on that (while stirring up the brain chemistry) to facilitate actual cognitive interaction where there might otherwise be none:
In all my searching, I have learned that death is as sacred as birth. My job as a chaplain is to be there, to be with people in their sacred spaces. That is how I can be an instrument of care and blessing, especially to patients who can’t respond to my care in typical ways.
Resources
Berry, Kathy. “When Words Fail: Practical Ministry to those with Dementia and their Caregivers.”
https://www.amazon.com/When-Words-Fail-Practical-Caregivers/dp/0825445590
Cheatham, Carla. “Hospice Whispers: Stories of Life.”
https://www.amazon.com/Hospice-Whispers-Rev-Carla-Cheatham/dp/0996601007
Golding, Linda, and Dixon, Walter. “Spiritual Care for Non-Communicative Patients.”
https://www.amazon.com/Spiritual-Care-Non-Communicative-Patients-Handbook/dp/1785927426
Puchalski, Christina, and Ferrell, Betty. “Making Health Care Whole: Integrating Spirituality into Patient Care.”
https://www.amazon.com/Making-Health-Care-Whole-Spirituality/dp/B01JXUWQMW/ref=monarch_sidesheet
Swinton, John. “Dementia: Living in the Memories of God.”
https://www.amazon.com/Dementia-Living-Memories-John-Swinton/dp/0802867162
