Finding Hope in Troubled Times:

Practical advice for communication at the end-of-life

By Sophia Case

THE JOURNEY
It is natural to be at a loss for words at the end-of-life. Many people are afraid of saying something wrong, or of an uncomfortable silence. Others are afraid of talking about loss and dying, afraid that talking about it will make it real. These fears can be overwhelming, but this time can also be an opportunity for connection, comfort, and understanding. This pamphlet addresses some commons worries many experience at the end of life about communication, giving practical advice on how overcome those fears and find hope. The pamphlet is organized into four sections: each addresses a specific fear you may have, providing detailed strategies for moving past them.

THE FEAR OF NOTHING TO SAY AND THE POSSIBILITY FOR COMFORT

Moments of silence are sacred, bonding us in soulful ways, Val Walker Silence can be scary; we tend to rush to fill silence with conversation instead of simply paying attention to the present. We may be thinking about the past and the future all in an instant. Consider silence as an opportunity to connect with the present moment, as an opportunity for gathering your thoughts and words. You can also try saying something such as, Im unsure of what to say right now, but I want to be here with you and I want to listen. When patients with cancer were asked to list the most and least helpful things that their loved ones had done for them, most often, they rated their loved ones simply being there as very important. Someone who is suffering may want another person simply to witness their experience. Never underestimate the power of presence.

Tip: Reflect on ways to connect besides speaking, such as eye contact, soft touch, and turning your body towards your loved one to show your interest.

THE FEAR OF LOSS AND THE POSSIBILITY FOR GAIN AND DIGNITY
I wanted to be in reality with him. That didnt mean there was no hope. You always have hope, even the day before someone dies.

Most of us do not talk about death often, and it may be difficult to start a conversation about it. Like many things, talking about death may become easier over time. Patients and their family members may feel relieved when they can finally talk about feelings or issues with which they have been struggling. Talking about death allows us to express our feelings, so that death may not be as frightening. Patients report that their loved ones tended to minimize the seriousness of their disease or force cheerful conversation. Patients reported that they were more comfortable when their family members accepted their illness along with its consequences. Every relationship is different, and not everyone wants or needs to talk about death. If you are suffering in silence, or you suspect that your loved one is suffering in silence, an honest, open conversation about death may be helpful. Tip: Communication does not need to be uplifting or painless. Acknowledgement of pain, death, and fear can be affirming and comforting.

THE FEAR OF SAYING SOMETHING WRONG AND THE POSSIBILITY FOR CONNECTION
When you give someone your total attention you are creating a bubble of comfort. Reverend Patricia Ellen, M.Div. One may worry about saying the right thing so much that we stop communicating and we miss opportunities for connection. We may feel we must make each conversation profound; yet simple conversation and quiet moments with loved ones can be meaningful at the end of life. Life continues along with illness and the dying process, so discussing everyday topics is important. Think back on a tender memory with your loved one; sometimes it is the simple, quiet moments that can be the most significant. Everyday conversation can be joyful!

Tip: The experience of stress and grief can affect thinking, concentration and reasoning skills. Avoid asking many questions all at once.

THE FEAR OF THE UNSAID AND THE POSSIBILITY FOR UNDERSTANDING

When a loved one is dying, unresolved issues can be distressing. The issues themselves may be distressing, but it can also be difficult to decide whether to discuss them. If you have many things to discuss, choose what is the most important. It can help to write down your feelings and then go back at a later time to see what is most essential to discuss. You may fear what your loved one might say in response to your questions or comments. This is natural. However, when we release the expectation of what we want to hear and focus on what we want to communicate, communication is easier. If you arent sure how to react to

something your loved one says, consider expressing gratitude for their honesty. Communicating gratitude can be simple as saying, I am honored that you shared this with me. If you are having difficulty putting your feelings to words, there are many other ways to communicate. Activities such as drawing, or painting can be gateways to communication. Doing a creative activity can allow communication to flow naturally. Passages from books and poems can open communication. Sometimes it is easier to speak through the words of others; for example, one may find piece of writing that perfectly states what you are feeling at that time. If speaking is difficult, writing a letter to share with your loved one may be helpful. When you share your letter with your loved one, be sure to give them time to read and reflect.

Tip: Consider this exercise from The End of Life Handbook by David Feldman PhD and S. Andrew Lasher Jr Md. 1. Take some time to write down all of the unfinished business you have with your loved one. This list may be long. List actions you can take to resolve these issues. Do not worry about whether you will do these things. Just have an open mind. 2. Write down the potential consequences of each action and try to be impartial; not too negative or too positive. 3. Take a break and return to your thoughts when you are ready. 4. Decide what you would like to do. You may choose to address only some of your unresolved issues. You may decide that it is better not to discuss them at all. If you decide to take action, write down your plan.

WHAT TO DO WHEN VERBAL COMMUNICATION IS NO LONGER POSSIBLE

There will come a time when your loved one will be unable to speak. Just because they are no longer speaking, however, doesnt mean that they cannot hear you or connect with you. The last sense to leave us is hearing. Speaking with your loved one, even if they cant respond, can be an incredibly meaningful experience for both of you. Do not be afraid to speak to your loved one even if they cannot reply. Your presence and the sound of your voice is a powerful gift of hope and connection in the last moments of life.

RESOURCES FOR YOU AND YOUR LOVED ONE

Online: National Hospice and Palliative Care Organizations list of resources: http://www.nhpco.org/resources/end-life-care--resources The Texas Childrens Cancer Center: www.childendoflifecare.org Americans for Better Care of the Dying: www.abcd-caring.com

In Print (all are available through the Houston Public Library): The Healing Companion: Simple and Effective Ways Your Presence Can Help People Heal by Jeff Kane, MD The Needs of the Dyin g by David Kessler Living With Death and Dying by Mary Kubler Ross The End of Life Handbook: A Compassionate Guide to Connecting with and Caring for a Dying Loved One by David B Feldman, S. Andrew Lasher Jr. Final Journeys: A Practical Guide for Brining Care and Comfort at the End of Life by Maggie Callanan, RN The Art of Comforting by Val Walker