Dignity Therapy Helps Mesothelioma Patients Create Legacy

Hands holding a legacy note

My father’s battle with mesothelioma ended when I was just 14.

I recount my memories of him on a daily basis. Most of them stemmed from a happy childhood spent being “Daddy’s Girl.” But because I knew him only as a child knows her father, my mental picture of him is incomplete.

Memories from those who knew him longer crafted the “relationship” I have with Dad as an adult. With every story I hear about him, I long to know more.

There is one story I’ll never have the chance to know: Dad’s life from his perspective.

Others who have suddenly lost their loved ones to mesothelioma may find themselves in the same position of not truly knowing those who were taken from us much too soon.

But with the help of dignity therapy and legacy documents, sons, daughters, nieces and nephews, and grandchildren can learn about departed loved ones in their own words.

What Is Dignity Therapy?

Dignity therapy is a short-term counseling treatment, usually lasting a couple of weeks, aimed at improving the mental well-being of people facing terminal illness.

Counselors guide patients toward realizing the meaning and purpose in their lives despite their diagnosis. Dignity therapists also incorporate dignity conservation tasks designed to foster mental and spiritual preparedness for death.

Some dignity conservation tasks include tying up loose ends in personal relationships, sharing life lessons and loving sentiments, and perhaps most importantly, the creation of a life story or legacy document.

Creating a Legacy Document

A legacy document, also known as a life story or generativity document, compiles a patient’s thoughts and life events to pass on to family, friends and other loved ones.

Patients also may recount events that made an impact in their past and dreams for the future. It is a tale of a patient’s life through their eyes.

Writing a legacy document with the help of a dignity therapist usually requires four therapy sessions. The first meeting focuses on determining a patient’s goals in counseling and establishing a relationship.

Subsequent therapy sessions involve an interview process to detail aspects of a patient’s life. A therapist will ask questions and document the patient’s answers. Some of the prompts may include:

  • Tell me about some of your more memorable life events.
  • When in your life did you feel most alive?
  • What important roles have you fulfilled in your life?
  • What have you learned about life that you might like to pass to others?

Counselors will take notes or make an audio recording of a patient’s answers and create the life story from those responses, capturing the most important parts of a patient’s life experience.

Revision Process

During the legacy document interview process, patients will talk about many different aspects of life, including some that may be painful.

However, discussing these issues can bring emotions to the surface, further consolidating them. For many patients, this is a chance to address painful life events and have closure.

By the third session, the first draft of the legacy document is likely taking shape. Counselors may address life events patients may find distressing. Patients ultimately decide whether to omit or include content. For example, the patient may choose to remove any portion of the document they feel depicts their life story in a negative way.

The last dignity therapy session involves a patient’s final approval. Therapists make several copies of the patient’s life story to share with friends and loved ones. Although the words are not directly from a patient’s mouth, the thoughts and feelings behind them comprise the lasting story the document represents.

Leaving a Legacy for Your Loved Ones

Creating a life story is as much about the family members who cherish it, as it is about the person who creates it. A legacy document leaves family members with something tangible to hold on to long after their loved one has passed.

A 2015 study on using biographical approaches in end-of-life care suggest patients who choose dignity therapy may experience a heightened sense of purpose in life and increased self-esteem.

But this type of counseling may not be for everyone, the study shows. Patients who experienced rapid deterioration of their health and cognitive abilities did not view dignity therapy as helpful because they found the interview process tedious. Those patients opted for another form of counseling.

As an adult, my pursuit to know my father, who died when he was 45, has led me to reach out to people who knew and loved him. While I sincerely appreciate every tiny tidbit of information they can lend, their memories are not my father’s memories.

I would love to have owned his written legacy to explore as an adult and pass on to his grandchildren.

  1. Fitchett, G. et al. (2015, March 21). Care of the human spirit and the role of dignity therapy: A systematic review of dignity therapy research. Retrieved from http://europepmc.org/articles/PMC4384229
  2. Lindqvist, O. et al. (2015, January). Reflections on using biographical approaches in end-of-life care. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/25189536

Melanie is currently pursuing a Master's degree at the University of the Cumberlands. She has a Bachelor of Science in psychology from the University of Phoenix. Her father was diagnosed with mesothelioma in 1992. She is dedicated to writing about her unique experience with the rare disease.

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