Enhancing Dignity for Those Nearing the End of their Life – Steve Calder

Introducing Dignity Therapy

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from Luke’s Journal 2020 | Ageing Gracefully | Vol.25 No.3

An aged woman leaning on a walking stick

As I write this, I’m looking at a book on my desk. It’s a book I had a hand in producing, and yet I didn’t write it. It was written by Penny. It is Penny’s story. How the book came about is a story in itself. But first let me introduce you to Penny.

Introducing Penny

Penny was a patient in the Palliative Care Ward where I work. She was 80 years old, suffering from metastatic endometrial cancer, and bed bound. When I met Penny she was sitting up in bed, her long silver hair pulled up into a tight bun. At first she eyed me with suspicion; after all, I was the “chaplain”, and by her own admission she wasn’t at all religious. Indeed, it became immediately obvious that she was very angry about her upbringing in a very religious household, which had turned her off anything… and anyone… who reminded her of that past.

Soon, though, as we began to talk, Penny softened and slowly told me her story. Penny had grown up in country NSW in a large and strict family, and at a young age had been sent away to boarding school. Tragically, she’d experienced physical abuse there. Later, as a young woman, she’d endured a broken engagement, had a child out of wedlock, and had suffered biting criticism from family members. She had been emotionally hurt by many people throughout her life. She knew little of the worth and value that she had, though she was made in the image of God and deeply loved by him (Genesis 1:26, Psalm 36:7).

Penny's Book
Penny’s book.

Her son, Adrian, was the light of her life. He was a gifted university academic, and Penny often spoke of how proud she was of him. Of course, Adrian knew most of his mother’s stories, and yet it was clear that in the retelling of the account of her life, there were feelings that Penny had never shared with Adrian – her hopes and dreams for him, her love for him. She was also worried about him. He was single, and she longed for him to have a family of his own. But she found it difficult to talk to him face-to-face, and this was distressing to her, especially as she knew her time was short.

Introducing Dignity Therapy

It was then that I realised that Penny would be an excellent candidate for a specialised intervention to which I had been introduced only weeks before: Dignity Therapy. In short, Dignity Therapy is a way of capturing a person’s story in writing so that hopes and wishes for loved ones can be expressed, and so “live on” after death, thereby conserving and enhancing dignity. 

Dignity Therapy was developed by Canadian Palliative Care physician, Harvey Chochinov.1 His research indicated that many people with a life-limiting illness have dignity-related concerns. In one study, over 87% of patients reported that their sense of dignity was most likely to be influenced by end-of-life worries, such as not being treated with respect or understanding, and feeling like they didn’t matter anymore.2 

Dignity Therapy dignifies the patient through the process of engaging in a directed and captured conversation. This conversation is built around a set of questions called the “Dignity Therapy Protocol Questions” (which are presented to the patient for review before the therapy begins). Questions include: 

  • Are there particular things that you would want your family to know about you and are there particular things you would want them to remember?
  • What do you take most pride in in your life?
  • Are there particular things that you feel need to be said to your family (and others) or things that you would like to take the time to say once again?
  • What are your hopes and dreams for your loved ones?

The directed conversation is recorded, transcribed, and, in an iterative process, the transcript is edited to form a final document which is then handed to the patient. It is this whole process which imbues the patient with dignity. 

Dignity Therapy dignifies the patient through the process of engaging in a directed and captured conversation.

Penny’s Book

As I went through this process with Penny, and she talked fondly about the rolling hills of the town in which she grew up, I saw an opportunity to further enhance the document I would hand her at the end. I sourced some beautiful recent photos of her town, and having obtained permission to use them, included them with her words in a book made using an online bookbinder. Penny graciously allowed me a make and keep a copy of the book myself. 

I well remember the day I handed Penny her completed book. Her copious tears of joy were eloquent testimony that she knew that she had been dignified by this process. She had been able to express herself in a way that would have a lasting effect, especially upon Adrian. Later, when I visited her, the book was prominently displayed on her over-bed table, and she would beam when she recounted how she would show it to every visitor.

Final reflections

As I reflect back on participating in Dignity Therapy with Penny, I am reminded of what a privilege it is to spend time with older people, and to listen carefully to their stories. We mediate Christ’s love by slowing down, attending to, reflecting, and seeking to understand what they say. Their stories always contain clues about their spiritual state. My conversations with Penny were deeper and more profound after Dignity Therapy, as we touched on her relationship with God in a way that would have been impossible before. Dignity Therapy is not for everyone, but when appropriate it is one tool that enhances the message that we want to convey as Christians: that each person has God-given worth and value, and indeed dignity, right to the last moment of their life.



 
Steve Calder     
Steve Calder is the Senior Pastoral Care Coordinator for HammondCare Health, a provider of inpatient and community services (including palliative care) in NSW. Originally working in Anglican ministry in Sydney, he is married to Sandra and has five sons. 


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References:

  1. Chochinov, Harvey Max. Dignity Therapy: Final Words for Final Days. Oxford: OUP, 2006.
  2. Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S, Harlos M. Dignity in the terminally ill: revisited. J Palliat Med. 2006:9(3):666-672.

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