Learning about the most common fears, challenges, and complications that arise when you’re facing death can help you cope with end of life issues. These insights are from Claire Willis, author of Lasting Words: A Guide to Finding Meaning Toward the Close of Life.
“About five years ago, I had a life threatening condition and almost died,” says Claire. “I remember driving away from the hospital and starting to call my friends, weeping with gratitude for being alive and expressing gratitude for all that they had done for me. The intensity of that gratitude left me skinless and open in a way that I could barely sustain.”
Claire had gotten a close-up and searing view of death, yet the intensity and gratitude of being alive abated. When she asked her teacher why she didn’t sustain that intense gratitude, she said, “We cannot live that way; it’s too much for us.” The lesson there? That we should remember death three times a day as a practice, so we are living as fully and truthfully as we can. And, part of living truthfully is learning how to cope with end of life issues.
How to Cope With End of Life Issues
Here, Claire shares her thoughts on coping with a variety of end of life issues, from talking about death with family members to dealing with the regrets many dying people have. This article is in Claire’s own words, and is based on our email interview. You can connect with her on her website, which is included in her bio at the end of this article.
Plan early for end of life care. In Lasting Words, Claire devotes an entire chapter on Saying Goodbye or Endings. She offers conversation openers to help people talk about how to cope with end of life issues from the point of view of either family or the patient, such as “I have been thinking about what I would want if I became sicker or were to die suddenly” and “I have been thinking about how I want to be cared for as I grow older or sicker and I want to share that with you.”
Families are often reluctant to talk about end of life issues. They fear the dying person will think their life is over, or the family has given up. The patient initiating the conversation worries about the fear of dying their loved ones have. Some people even feel that opening the conversation may expedite the dying process.
It is important to make your end of life wishes known long before it is necessary to do so. Too many people are dying in ways that they would not choose, leaving family and loved ones with conflict and complicated grief. I see this so often in my private practice – the decisions that are made under incredibly difficult conditions in the ER or ICU. If you start coping with end of life issues early, you’ll avoid unnecessary grief and trauma.
There is a great deal of superstition around planning for death. I have learned how much superstition there can be around death and coping with end of life issues. Having the patient’s wishes be clear frees the family to really “be with the dying person” in a much more easeful way. For instance, there is no second guessing treatment options (a legal document such as an enduring power of attorney can help you cope with end of life issues). Knowing this earlier would have helped many people transition from this life to the next with much more ease.
An important end of life issue is considering what you most need to do. Who are the people you want to see, where are the places you want to go, what are the words you need to speak? Do you want a service and if so, how do you want to be remembered? Are there words of your own that you would like to have read at the service? What about writing your own eulogy? And death – what is the meaning of death for you and what do you believe happens when you slip out of your body? Talking about our ideas of death and where these ideas came from – not a topic many people have closely considered – can be helpful in accepting death.
Death is a spiritual event, as well as a physical one. Somewhere in the dropping away of all our roles and our cultivated personnas, our physical appearance and self-images, there is often something precious that happens toward the end of life, a natural wisdom that often inspires people to open more profoundly to life, and to love, and it is in this opening that unexpected growth, connection with others and healing comes.
The most common regret among people who are dying is that they did not lead a life true to themselves. Say what is true and say it right now while you can. Be honest. End of life planning is in your power. Don’t wait. Open the conversation now about what has meaning for you. Speak up about your needs.
Talk about end of life issues. Having end of life conversations are a simple way to take control and reduce the medicalization of death. 60% of people feel that not burdening their families is important, yet 56% have not communicated their end of life wishes. 90% of people say they want the conversation, yet only about 30% had actually had it. Coping with end of life issues involves having difficult discussions.
The Conversation Project is an organization recently started in Boston by Pulitzer Prize winner columnist, Ellen Goodman, and has grown into a national campaign. It is dedicated to helping people talk about their wishes for end-of-life care. The goal of The Conversation Project is that everyone’s wishes for end-of-life care be expressed and respected. Ellen is quick to say that regardless of your life circumstances, whether you are young, old, sick or healthy, that end of life issues are a subject that is too often delayed – until it is too late. On Conversation Project website, there is a Starter Kit that anyone can download which will help open the conversation with loved ones.
Writing is a gift for loved ones to read after you die. In working with people with cancer and leading writing groups, I have found that when people leave their writing behind for their family and friends, it helps them close their lives with more ease. It’s a concrete gift to loved ones, it is a way to feel less mortal, and it can be an utter treasure to the bereaved. Writing is a way to cope with end of life issues because it gives the patient’s life meaning and it can help their family know the patient more fully.
Your self is the most valuable tool to bring people who are dying. Preparing yourself from the inside is not just a matter of clinical training. It’s a matter of contemplating your own death, your own suffering and your own grief. The most valuable thing I can bring to a dying patient is my utter and complete presence. There is so little that one needs to “do” to help someone cope with end of life issues (assuming basic comfort needs are met). Just sitting and being with someone is enough, just slipping in next to them, coming alongside them, as they leave this life. People who are dying often need someone to hold the space for them, either being quiet together or to allow one to feel the whole range of feelings that accompany the dying process.
If you have any thoughts on these end of life issues – or how to cope with dying – please comment below.
Claire Willis, author of Lasting Words: A Guide to Finding Meaning Toward the Close of Life, is a clinical social worker, an ordained lay Buddhist chaplain and a yoga teacher. In her private practice she has spent over two decades working with oncology patients and with end-of-life issues. A co-founder of Facing Cancer Together: A Community of Hope, Claire is also an adjunct faculty at Andover Newton Theological School in Newton, MA and a former group facilitator and instructor at The Wellness Community. She earned an M.A. from the Episcopal Divinity School and an MSW from Boston University. Claire lives in Brookline, Massachusetts where she maintains a private practice. Connect with her at www.lastingwordsbook.com.