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.
Understanding and Transforming Suffering
Experiencing Authentic Connection and Love
Finding Meaning in Life
Finding a Refuge or Source of Peace
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.
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.
Several years ago, as part of my Death Doula training, I attended a "Quality of Life Care Retreat" in Texas, where I was introduced to Ann Allegre and Kirsten Deleo, and the teachings of Authentic Presence.
Authentic Presence has been a profound part of my End-of-Life/Death Doula practice.
After the retreat, I knew I wanted to learn more about this organization and the courses that they offered, so I took the following courses and received Certification of Completion in the following:
Cultivating Mindfulness and Awareness in End of Life Care.
Cultivating Compassionate Presence.
Please read about my conversation with Ann Allegre, from Authentic Presence below.
Tell us about Authentic Presence:
Authentic Presence training programs have been developed over more than 30 years to teach a contemplative approach to end-of-life care. Participants deepen their capacity for compassion, presence and mindfulness in ways that enhance their ability to meet the deeper needs of those they are caring for, as well as to care for themselves more skillfully and compassionately. The program offers online courses, residential retreats and workshops to teach contemplative-based tools and resources to professionals and volunteers in healthcare as well as family caregivers. The training is presented in an experiential way, and the skills can easily be applied when caring for the dying.
What was the inspiration for the organization?
The program 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. The training is offered through a secular approach that is appropriate for people of all faith traditions or none.
What emotional, physical and spiritual benefits does Authentic Presence offer?
The skills and tools taught in this training help caregivers to reconnect as with sources of joy, purpose, spirituality and wholeness in their work and lives. They provide a strong foundation for resiliency and self-compassion. This training allows caregivers to stay well while meeting the deeper emotional and spiritual needs of those they are caring for. Professionals, volunteers in healthcare and family caregivers who have taken the training say that what they have learned is often transformative and has given them renewed joy and meaning in their roles.
What would you like others to know about the organization?
The organization has trained over 30,000 healthcare professionals and volunteers over the past 30 years. It is a non-profit organization, run largely by dedicated volunteers who have backgrounds in hospice and palliative care as well as their own contemplative practice. Students from many countries attend the courses, and the online format allows like-minded people from around the world to connect and feel supported in this work.
In your experiences, what keeps people from using your network of tools?
The biggest barrier is that people who are interested in a contemplative approach to end-of-life care haven’t heard about what we offer. Once they have taken our courses, most people continue to apply what they have learned in their daily lives.
What hinders others from talking about death, dying and grief?
As a culture, we fear aging, death and loss. We see conversations about these topics as being morbid or depressing. We have come to think that medical miracles can ‘save’ us any time we are threatened by death. In reality, avoiding these conversations about death can lead to more intensive medical interventions, more suffering and a prolongation of dying. In reality, those people who prepare for their death and tell their loved ones what will be important to them often have more peaceful deaths with less-complicated grieving for the survivors.
Is there any other pertinent information, regarding Authentic Presence, that you’d like to add?
Kirsten DeLeo, who is currently the main developer of our curriculum and training, has written the book Present Through the End: A Caring Companion’s Guide for Accompanying the Dying (Shambhala Publications, 2019).