Implementation and Evaluation of Dignity Therapy in Denmark (DignityDK)

• Sense of dignity [ Time Frame: Pre-post intervention (when the document was recieved by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured with the Structured Interview for Symptoms and Concerns (SISC)
  
  

• Hopelessness [ Time Frame: Pre-post intervention (when the document was recieved by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured with the Structured Interview for Symptoms and Concerns (SISC)
  
  
• Anxiety [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the Hospital anxiety and depression scale
  
  
• Depression [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the Hospital Anxiety and Depression scale
  
  
• Not able to perform tasks of daily living [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the Patient Dignity Inventory
  
  
• Suffering [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured with the Structured Interview for Symptoms and Concerns
  
  
• performance status [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the Palliative Performance Scale v2
  
  
• Communication [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the Structured Interview for Symptoms and Concerns
  
  
• Social Contact [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the Structured Interview for Symptoms and Concerns
  
  
• Depression [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured with the Structured Interview for Symptoms and Concerns
  
  
• Not able to attend to bodily functions [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Physically distressing symptoms [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling how I look has changed [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling depressed [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling anxious [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling uncertain [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Worried about future [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not able to think clearly [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not able to continue usual routines [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling no longer who I was [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not feeling worthwhile or valued [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not able to carry out important roles [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling life no longer has meaning or purpose [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling of not having made a meaningful contribution [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling of unfinished business [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Concerns regarding spiritual life [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling like a burden to others [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling of not having control [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Feeling of reduced privacy [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not feeling supported by friends or family [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not feeling supported by health care providers [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not feeling able to mentally fight illness [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not being able to accept things as they are [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Not being treated with respect [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Item from the Patient Dignity Inventory
  
  
• Physical function [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Emotional function [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Overall quality of life [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Fatigue [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Nausea / Vomiting [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Pain [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Dyspnoea [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Insomnia [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Appetite loss [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  
• Constipation [ Time Frame: Pre-post intervention (when the document was received by the patient), and again two weeks later. ] [ Designated as safety issue: No ]
  Measured on the EORTC QLQ-C15-PAL
  
  

Research in palliative care has primarily focused on physical and psychological symptoms. Research in other psychosocial and existential problems has been sparse. Loss of dignity as a consequence of serious illness may be an important cause of suffering. The research team of the Canadian psychiatrist and professor, Harvey Chochinov has investigated the concept of dignity and developed the psychosocial intervention 'Dignity Therapy' (DT). The preliminary research results were promising.

Research questions: Do Danish cancer patients have a need of, interest in, and benefit from DT? Methods: DT consists of an interview revolving around the patient's life, values, and accomplishments and is also an opportunity to leave messages and words of hope and compassion for friends and family. The interview is audio taped, transcribed, and edited together with the patient, and made into a tangible document, which the patient can give to his/her relatives. The project consists of three parts: (1) a cross-sectional investigation of the prevalence of loss of dignity and related symptoms/problems among at least 200 incurable cancer patients. (2) A feasibility study, testing the intervention in terms of relevance and the need of any modifications in relation to Danish patients. (3) An evaluation study testing the effect of and satisfaction with DT.

At least 80 patients are planned for the feasibility and evaluation studies. Questionnaires are used for detection of loss of dignity and as measures of effect. These will be administered before the intervention and, along with a semi-structured evaluation questionnaire, right after the intervention, when the document is received and again approximately two weeks later.

The duration of the intervention (DT) varies markedly between patients. In some cases the process (interview, transcription, editing of document, and the final meeting where the document is given back to the patient) is completed urgently in a few days, whereas in other cases, the patient prefers a slower pace, and may want to sub-divide the interview into two or more parts. Also, when presented with the document, some patients want to have something changed or they want add material. This variation is seen as intentional, as it illustrates that the process is tailored to the patient's wishes.

As stated, the effect of the DT intervention is evaluated at completion of the intervention, i.e. when the final document is given back to the patient, and about two weeks later. Due to process described above, the time from the first measurement (before intervention) to the second measurement (which takes places at completion of the intervention) therefore varies considerably (median 36 days after baseline, range 7-121 days).

Perspective: If Danish patients have a need of, an interest in and benefit from DT, it can be offered to Danish patients admitted to palliative care.