Death seems to be one of the most difficult topics for people to discuss, especially when it comes to their own death. The reason we don’t talk about death is probably as complex as other human behaviors we prefer not to discuss. But I like to think that death is particularly difficult, even scary to some, simply because although it is the one thing we all share as human beings, there are a lot of unknowns with the death experience.
As an end-of-life doula, often called a death doula, my job is to help make a client’s final months, weeks, or days the best possible by supporting them and being aware of their individual needs. An end-of-life doula does not provide medical or hospice care but can let the family know when to call for those services, especially as the end of life draws near. One of the most beautiful roles of an end-of-life doula is to “hold space” for someone who is dying. When we hold space for others, it means we open our hearts, and offer unconditional support, without judging them. For families, the final days can be long and full of emotion, but knowing they and their loved ones are being held by someone reassuring and supportive gives them peace through the end-of-life process.
A doula’s role is to care for their client by making sure they are at peace and have all the support they desire through the dying process. Through the years, I have learned to approach each client with a clean slate, never assuming I know what is important to them, but instead asking them questions, getting to know them, understanding their relationship with family and friends, and supporting any concerns they have. Even though every client has individual needs, there is always one need in common that they share, the need to be understood and heard by those around them. That may seem like a simple thing, but to someone who has little time left, it is a very important thing.
Sometimes my role is to soften conflict that may arise. One of my clients was a young man of 46 with a terminal illness. He had moved into my parents’ assisted living facility and because of the disease progression, he knew this was his final home. From the day he arrived, he began to push his wife away, yet she was the one person he needed most. He was mean to the nurses, aids, and other residents.
The facility director asked if I could help him, and to my surprise, Eric agreed. After talking with him it was easy to understand that the underlying cause of his anger was frustration from feeling helpless. Together with his hospice team, we made changes to how he was cared for at the facility, which gave him control over some decisions and things that he could still do. Almost immediately his frustration decreased as his ability to feel more in control increased. His anger diminished, which allowed his wife to once again be more of a comfort to him and gave them more meaningful time together with less anger. Redirecting him from reacting with anger and focusing on the real problem, his frustration of not being in control, changed everything for him. His final days were happier because he was in control until close to the very end.
Other times, my doula experience has resembled that of a manager, by creating a protective bubble around clients and their closest family members during the final days. Usually, families appreciate the kind gestures from neighbors and friends but are not up to visiting or receiving visitors. I simply stand as the first contact for anyone offering condolences, support, help, or food.
One exception to the rule occurred when I was a new end-of-life doula. The client had been given only a few days to live and under the care of hospice, was released from the hospital to pass at home with his family surrounding him. I wrongly assumed the client and his family would want privacy so I immediately went into protective bubble mode for my client, trying to turn away the first visitor who knocked on the door. To my surprise, I heard a voice from the bedroom, “No, let them in, I would love to see them,” my client said. Surprised, I followed his wishes. As the doorbell continued to ring, each time he would call from his bedroom, and each time the visitor was welcomed in. Soon there was standing room only in his bedroom. Concerned, I worked my way up to the front of the crowd to check on my client and discovered the biggest grin on his face and his entire family was beaming also. For them, having friends who they loved near them was exactly what they needed and desired.
This taught me that whatever I assumed my client needed, was only my assumption and probably not what my client really needed. It helped me put into practice a focused pattern to really listen to my client to understand them, their specific needs, concerns, worries, and final wishes. The greatest lesson I have learned as an end-of-life doula is the keep still and listen, really listen. Learning to listen has helped me find gratitude and appreciation for the smallest, simplest things that are often only noticed during the quietest of times.
As an end-of-life doula, I wear many different hats, but the most important one I wear is the one my client needs at that very moment. It may be one of a coach, a manager, a listener, or one that ensures final wishes are fulfilled, but it is always the hat my client and their family need in that moment as they walk through one of the most difficult journeys of their lives.