A Conversation With Kirsten DeLeo, Author of Present Through The End: A Caring Companion's Guide For Accompanying the Dying

I met Kirsten DeLeo several years ago while attending a Quality of Life Care Retreat in Texas.  Over this 3 day retreat, Kirsten was one of those educating this small group of like-minded individuals, whom were either interested in End-of-Life, or were part of the CareDoula Program, which I was.  

Kirsten shared valuable resources from Authentic Presence, Contemplative End-of-Life Care Training, which was inspired by the teachings on compassion, mindfulness and presence taught in Tibetan Buddhism,  particularly the approach found in The Tibetan Book of Living and Dying.

Kirsten is currently the main developer of Authentic Presence curriculum, and is the author of Present Through The End: A Caring Companion's Guide for Accompanying the Dying.  This profound book helps to provide guidance to those that accompany the dying.   Please read the following excerpt that Kirsten provided me.


HOW WE CAN OPEN UP A CONVERSATION WHEN SOMEONE IS DYING
 
At some point in our lives, we have all been on the receiving end of so-called well-meaning advice that usually begins with something like, “I know how you feel," or “It could be worse,” or “Don’t cry.” In truth, we can never fathom how someone really feels and sometimes you just don't know what to say.
It is rarely helpful to compare one person’s experience to another’s, or encourage someone to stop feeling what they are feeling. Though we have been taught these stock responses for crisis situations, when the script ends and we find ourselves at a loss. 
Walking alongside the dying, we quickly realize that there is no fixed script or set formula to follow. So if you are questioning whether what you are about to say is going to be helpful or not, ask yourself how it would feel to hear those words if you were in the same situation. In essence, a dying person needs to hear, feel, and be assured of three things: you matter, you are loved, and your wishes and values are respected. 
 
I think it is not safe to express how I really feel, deep, deep inside. If I would, what if you turn away? What if I end up all alone?
—Voice of a dying person
 
Make a Genuine Connection
 
Every dying person has their own life wisdom. Helping the person to discover or reconnect with this life wisdom is incredibly meaningful, rich, and moving, not only for the dying person but for the listener as well.
Asking good questions can help you to reach out to the dying person, and will make it easier for the person to open up to you. Open questions are generally better; closed questions that prompt a simple yes or no answer often diminish the potential for communication. 
 
Open questions encourage the other person to reflect, as well as signals that we are listening. 
The following questions have been helpful in encouraging meaningful conversations with the dying. The first set of questions can help open up a conversation. These are just suggestions and are not meant to be used like a checklist that you have to hurry through and tick off. It might even be helpful just to stick to one question each visit to draw the person out. 
 
Keep in mind that the purpose of these questions is not to enable you to give the other person your own answers. Follow the other’s lead and explore what is upmost in their mind. Allow for spaces of silence, be patient, and resist the temptation to jump in. If the urge is too strong, take three long, deep breaths before you respond. 
 
Openers 

• Is there anything weighing on your mind or heart that you would like to talk about?
• If there ever comes a time when you want to talk about something or feel frightened, please know that you can always do that.

 
Understanding and Transforming Suffering 

• Are you frightened of dying?
• What do you make of everything that is happening to you?
• What are your fears and concerns? What are your hopes?
• When you went through difficulties in the past, what helped you to get through them?
• What part of you is the strongest right now?

 
Experiencing Authentic Connection and Love 

• Where have you felt connection and love?
• Who has been most important to you?
• Where do you belong?
• Who would you like to be here?
• Is there anything you would like to share with them? Is there anything that stops you?
• Are you worried about being a burden to others?
• What are your biggest concerns for the people you leave behind?
• Who would you like me to call when death draws near?

 
Finding Meaning in Life 

• Tell me about your life.
• What has given you joy? What are you proud of?
• Is there anything you are not at peace with?
• What is most important to you now?
• What do you enjoy doing?
• Is there anything you would like to accomplish with the time you have left?
• How would you like to be remembered?

 
Finding a Refuge or Source of Peace 

• What gives you strength?
• What is your spiritual home?
• Is there a religious or spiritual community that you are connected with or would like to connect with?
• How at peace are you with what is happening?
• Are there things that would offer you comfort?
• Tell me about places or times in your life that brought you peace.
• At the time of dying, is there anything I could do for you?

 
The way you choose to use the questions will depend on your relationship with the dying person. For some, a direct question might work well. For others, a more indirect and gentle approach might be best. Remember, the purpose of these questions is to reach out and to open the door. It is fine if you don’t get a response. You have let them know that it is safe to talk to you, if they choose, whether now or later. 
 
The reality of the other person lies not in what he reveals to you but in what he cannot reveal to you. Therefore, if you would understand him, listen not to what he says but rather to what he does not say.
—Kahlil Gibran
 
Those who are dying will feel safe and connected when we continue spending time with them and thus show them that they matter. We can help them focus their minds on what still gives them a sense of joy, and recognize and celebrate the good things in their lives and what they have accomplished. 
When they feel confused, fearful, and lost in the dark, our caring attention can guide them through. Even when we stumble while finding the right words, we will show them that we care by listening, by not shying away from their deeper concerns and questions, and by respecting and trusting their own inner wisdom.
​

Kirsten Deleo

present through the end book

Authentic Presence Contemplative EOL Care Training