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Most people nearing the end of their life don’t want to be remembered as a weak, seriously ill patient but as the person they once were.
Up to now, there has been very little psychological end-of-life help for those who are dying. However, the growing recognition of a unique, individualised short-term psychotherapy called “dignity therapy” is changing the way how people facing death are able to derive meaning from their life and regain a sense of self.
In Western Australia, psychologist and researcher Brenda Bentley from Curtin University’s School of Psychology and Speech Pathology in Perth, is leading the way in advocating dignity therapy. Part of her PhD research entailed conducting a study of patients with motor neurone disease (MND). This devastating incurable disease causes progressive paralysis and patients gradually lose their ability to move, speak, swallow and breathe.
What is dignity therapy?
In essence, dignity therapy involves a trained therapist inviting a patient to look back on their life in a personal narrative way by means of directed questioning. The interview process is audio recorded and transcribed before the therapist and patient work together to edit the transcript.
The therapy concludes when the transcript is compiled into a final legacy document which the patient can pass on and share with family, friends and loved ones either before or after their death.
According to Bentley, the interview process is very positive and meaningful. Terminally ill people are able to talk about “aspects of their life that they want remembered, the meaning and purpose to their life and express final words or advice to their loved ones”.
The process takes a minimum of two weeks to complete and the interviewee should be cognitively aware most of the time. Bentley comments that the completed document is not supposed to be a comprehensive autobiography, but rather one that captures the essence of a person and the meaning of their life. At the end of a life, says Bentley, there is a lot to review. Some people want to write their life story, record their voices or make videos, leave important messages behind or simply share the highlights and accomplishments they are most proud of.
According to Bentley’s study on MND patients, about 85% of family members interviewed six months after their loved one’s death reported that the process of dignity therapy had helped them deal with their grief.
While she acknowledges that some may view the process as confrontational, this applies more often to the person’s family, since most of the patients who consult her have already been dealing with the idea of a terminal illness for a while and are well prepared.
New life perspective
A help guide for Alzheimer’s disease (AD) states that every patient’s emotional needs differ in the final stages of life. However, some emotions are common to many patients during end-of-life care. These include worries about loss of control and dignity as physical abilities decline, fear of being a burden to loved ones yet simultaneously fear of being abandoned.
“Even if a patient’s memory and cognitive functions diminish, their capacity to feel emotions such as fear, love, loneliness, sadness and security remain regardless of whether they are at home, in hospital or a hospice.”
While end-of-life psychotherapy is still a relatively new field, dignity therapy is increasingly being used in hospices and hospitals worldwide to directly neutralise the downward depressive slide that terminally ill people experience when they lose their sense of self.
A number of research studies have looked at the impact of dignity therapy on various participants, i.e. terminally ill patients, family members and carers/hospice workers:
1. Dr Lori P Montross of the Department of Psychiatry, San Diego Hospice and the Institute for Palliative Medicine in San Diego, California was the lead researcher of a study on hospice staff perspectives on dignity therapy. The article, published in the Journal of Palliative Medicine concluded that hospice staff believes dignity therapy is a worthwhile service that offers a positive, quality-enhancing experience for patients at the end of their life. Ninety two percent of hospice staff members said the treatment would help patients' families in the future, while 100% reported a desire to recommend the treatment to others.
2. In an article published in the Journal of Palliative Medicine, a study by Dr Susan McClement of the Faculty of Nursing at the University of Manitoba in Canada and other researchers found that family members endorsed dignity therapy as a therapeutic intervention that moderated their bereavement experiences and lessened suffering and distress in terminally ill relatives.
Other findings of this study were that:
• Ninety-five percent of participants reported that dignity therapy helped the patient.
• 78% reported that it heightened the patient's sense of dignity.
• 72% reported that it heightened the patient's sense of purpose.
• 65% reported that it helped the patient prepare for death.
• 65% reported that it was as important as any other aspect of the patient's care.
• 43% reported that dignity therapy reduced the patient's suffering.
3. In a study published in the Lancet – on the effect of dignity therapy on distress and end-of-life experience, terminally ill patients reported that dignity therapy was significantly more likely than client-centred care or standard palliative care to be helpful, improve their quality of life, increase their sense of dignity, change how their family saw and appreciated them and be helpful to their family.
Benefits of dignity therapy for terminally ill patients
• It allows individuals to look back at their important life events, and reframe or reinterpret things which intrinsically add a sense of meaning and dignity to their life.
• It enhances hope during the end of people’s life experience and reduces dignity-related distress.
• The completed legacy document provides peace of mind not just for the person who is dying, but also for their loved ones, as it serves as an important memento that will outlast them.
Sources:
1. http://www.biomedcentral.com/1472-684X/13/12Research article
2. http://health.thewest.com.au/news/1006/finding-the-meaning-of-life-at-the-end#.Ul3YTqyIak8.twitter
3. http://hospicebuffalo.tumblr.com/post/54097299791/dignity-therapy
4. www.dignityincare.ca
5. http://www.helpguide.org/elder/alzheimers_disease_dementia_caring_final_stage.htm
6. http://www.pratttribune.com/apps/pbcs.dll/article?Template=MobileArticle&AID=/20140118/OPINION/140119298/1664/ENTERTAINMENTLIFE
7. Susan McClement et al Dignity Therapy: Family Member Perspectives. Journal of Palliative Medicine. October 2007, 10(5): 1076-1082. doi:10.1089/jpm.2007.0002.
8. Lori P. Montross et al, Hospice Staff Perspectives on Dignity Therapy, Journal of Palliative Medicine; September 2013.
