There has been much progress in the assessment and treatment of the somatic symptoms of people with advanced cancer, however less is known about assessing and treating psychosocial, existential and spiritual issues. Loss of dignity for people with advanced cancer is associated with high levels of psychological and spiritual distress and the loss of the will to live. For some people, a sense that nothing of one's life will be transcendent of death was associated with loss of dignity, and many felt that maintaining dignity was highly dependent on how they perceived themselves to be seen by others. It is therefore crucial to develop and evaluate interventions to address these needs. An empirically based model of dignity in the terminally ill has been developed in Canada from interviews with 50 people with advanced cancer focussing on what supports and what undermines their dignity [2, 3]. The model comprises three major categories (illness-related concerns, dignity conserving repertoire, social aspects of the illness experience), which refer to broad issues that determine how individuals experience a sense of dignity as death approaches. Each of the three categories has several themes and sub-themes. The model provides a theoretical framework, which helps understanding of how people with advanced cancer may experience a loss of dignity and provides the theoretical base for a therapeutic intervention: dignity therapy.
Dignity Therapy is a brief, individualized intervention to increase the sense of purpose, meaning and worth and reduce spiritual and psychological suffering for people with advanced cancer. The therapy can be delivered at the bedside by health care professionals (after brief training). The therapist conducts an interview, which is based on the dignity model. Individuals are offered the opportunity to address aspects of life they feel most important, such as recounting parts of their life they feel proudest of, things they feel are or were most meaningful, the personal history they would most want remembered, or advice to their family and friends. Interviews last between 30 and 60 minutes. They are tape recorded, transcribed, edited, (see methods for details of editing procedure) and quickly returned to the patient to share with people of their choosing. These 'generativity' documents allow people to leave behind something lasting. An important feature of the therapy is that it also has the potential to help friends and relatives in their bereavement.
A preliminary evaluation of Dignity Therapy conducted with patients with advanced cancer in Canada and Australia have produced positive findings for patients and their families. Ninety-one percent of participants reported being satisfied with dignity therapy; 76% reported a heightened sense of dignity; 68% reported an increased sense of purpose; 67% reported a heightened sense of meaning; 47% reported an increased will to live; and 81% reported that it had been, or would be of help to their family. Randomised controlled trials (RCTs) of Dignity Therapy for hospice patients are underway in Canada, Australia and the USA, assessing outcomes immediately after the intervention. However, the longer term impact of the intervention on patients is not being assessed. Furthermore, since responses to Dignity Therapy may be influenced by a range of important social and cultural factors, the results of these trials may not be generalisable to the UK. There are a number of potential moderators of the impact of intervention (e.g. ethnicity, age, cognitive acuity, stage of illness, baseline levels of distress). Answering these questions would require a randomised controlled trial in the UK. There are a number of methodological and ethical issues concerning conducting RCTs of patients with advanced cancer, including concerns about randomisation, loss to follow-up and appropriate user involvement in the research.
In-depth piloting, which includes an exploration of the feasibility of delivering an intervention and attention to the context in which interventions take place, as planned here, is recommended in the new Medical Research guidance for developing and evaluating complex interventions. As recommended in the MRC framework, we are also testing our proposed outcome measures. The results will inform the design of a Phase III RCT.