By Beba Tata
“When I first received the news that I had cancer, I froze. Then I sat on the floor of my doctor’s office. My husband came down and held my shoulders, we sat in that position for a long time before I was able to come out of the trance.”
When many people first hear the news of a possibly fatal diagnosis, the immediate moment seems to come to a standstill. It is shocking and mind-blowing. One 40-year-old woman who had had cancer seven times told me, “Each time I am told that I have cancer, it always sounded like a time bomb.” After the initial shock, most people start thinking about the process of their death, the disease burden and how life will look like from then on. They think about the impact their illness will have on their families, friends, and community. They wonder who will be there for them and care for them as their illness progresses.
The Hear My Voice project at the Mayo Clinic in Rochester, MN, lets people with neurologic diseases and other advanced illnesses tell their stories while they can. The project seeks to capture the uniqueness of each person’s story and to understand its significance and how it gives meaning to them. A spiritual legacy document is then prepared that holds their beliefs, values, and life-learned wisdom.
To produce the document, a board-certified chaplain records an interview, either in person or by phone, working from a script of questions. The interview provides the participant with an opportunity to review spiritual beliefs, values, experiences, and sources of spiritual comfort and hope, as well as spiritual struggle, spiritual distress, and spiritual meaning. The interview is preceded by a validated questionnaire measuring spiritual well-being and quality of life, and followed by two follow-up questionnaires. Interviews last 45 to 60 minutes over one or two sessions.
The process of the HMV interview and the empathetic presence of the chaplain create a sacred space and invite people to review their lives in the light of their spirituality and tap into resources that may have otherwise been suppressed. Through this study I have experienced the power of voice. Telling their stories was part of the legacy that the people wanted their loved ones to hold on to and remember them by.
In the three years that I have participated in the HMV project, I have seen illness become a transformative event. I have seen people move from shock to acceptance, from desolation to consolation. I have heard expressions of perseverance, positivity and hope that have helped people adjust to diagnosis and give comfort during treatment. The preliminary results of the study have indicated increased religious coping, peacefulness, emotional wellbeing and quality of life. Many patients expressed a renewed relationship with God that has given them peace, hope, acceptance and the ability to journey with their cancer. One woman said, “I have made peace with my God. I have peace with my children and with my family. I am ready to go anytime he wants to take me home.”
Many saw their fears dwindled and their hopes rekindled as they experienced the love of their spouses and their children. A 55-year-old woman said, “I am so glad there has been a strong sense of connection for me and my girls and my husband through this whole cancer thing.”
Many expressed a great sense of resilience that they did not have when they were first diagnosed. “I would say that I’m proud I have reached this point, and I did not really drop down during the process of illness,” said a 34-year-old woman. “I am proud that even though I do have always a member of the family around, that I’m still standing strong and I can handle it, I would say.”
People not only used resources they had at hand; they reached out to the rich resources that were cultivated in the course of their lives. I interviewed a legally blind 91-year-old who used to sing. She radiated joy when she talked about music. She could not see, but music still lifted her spirits. A younger woman, 48, emphasized that if she should lose her ability to read, “I want people to know it is really important to me that I be read to… that is going to be a big source of happiness for me to be able to be read to, just like I did with my kids.” A 96-year old told me, “I cannot forget my devotion to Mary. I reach out to God and that sustains me every day.”
It is always an amazing moment for me when I bring the legacy documents to the patients. The smiles on their faces can only be described as priceless. They are revived and re-energized. They want everyone to know that they got their books. Being a part of this study has enriched me personally and added vitality to the work I do as a chaplain.
The process creates an increased sensitivity and attentiveness to the needs of those faced with chronic or life-limiting illness. It generates a wealth of resources that could be explored and offered not only to cancer patients but also to other patients. Giving voice to people helps them remember what their faith, beliefs and values can do to enhance their coping with illness.
Beba Tata, BCC, is a staff chaplain at Mayo Clinic Rochester, Minnesota and Transforming chaplaincy Research Fellow
