Dignity therapy

The main goal of palliative care is to respect and promote the dignity of seriously ill and dying people. The dignity therapy (Dignity Therapy) is a psychotherapeutic brief intervention for patients with end-stage life-threatening illness (eg. As in cancer). She strives to reduce psychosocial, spiritual and existential burdens on sick people and to strengthen their sense of dignity, meaningfulness and purposefulness. The patients are guided to a life review as a contribution to a comprehensive preparation for death. Finally, the patient is given a summarizing "Generativity Document". The dignity therapy was developed by the Canadian psychiatrist Harvey M. Chochinov and his research group (2005) and empirically broadly investigated. It is one of the meaningful interventions in psycho-oncology .

Chochinov's dignity model

Maintaining quality of life and dignity are - in addition to adequate treatment of pain and other stressful symptoms - essential goals of palliative care . When confronted with their death, people often deal with psychosocial, spiritual or existential issues. According to Irvin D. Yalom (1989), these include death, freedom and responsibility, isolation and the meaning of life. The impairment of the experience of dignity can have serious psychological consequences. People at the end of life often experience depression, anxiety, an increased wish to die, hopelessness, the feeling of being a burden to others, and a lower general quality of life.

Chochinov et al. (2002) have developed an empirical "dignity model of palliative care" based on the perspective of the person concerned. Patients with very advanced cancer who were not cognitively impaired were asked in detail how they define dignity, which factors support or diminish their perception of dignity, and whether a life without dignity is still worth living for them. The factors influencing the patient's experience of dignity are divided into the three categories of disease-related factors , dignity-preserving psychological functions and social factors (see Table 1).

Dignity - categories, subjects, and subtopics
disease-related factors	Dignity of preserving mental functions	social factors
Degree of independence with regard to cognitive performance Coping with everyday life Symptom burden through physical stress mental stress: uncertainty in medical questions; fear of death	Dignity preserving perspectives Continuity of self Maintaining roles Generativity / Legacy Preservation of pride hope Autonomy / control acceptance Resilience / fighting spirit Dignified behavior Living in the here and now Maintaining normalcy Striving for spiritual strengthening	privacy Social support Basic nursing attitude Be a burden to others Concerns about the future of loved ones

Tab. 1 Dignity model by Chochinov et al. (2002)

Negative characteristics of disease-related factors (e.g. decreasing independence, pain) and social factors (e.g. loss of privacy, feeling of being a burden for others) have an undermining influence on the feeling of dignity. The dignity-preserving functions (perspectives and behaviors) act as a buffer against these negative influences; they support the sense of dignity. - Recommendations for palliative care are formulated for all three categories . With regard to disease-related factors, dignity can be strengthened through careful management of physical and psychological symptoms, pain management , education, etc. Social dignity can be maintained by ensuring privacy, strengths of social support, respectful basic nursing attitude, among others. Dignity therapy was developed to promote perspectives that preserve dignity .

Concept of dignity therapy

The patient is invited to a life review, whereby the memories of positive aspects of their own life should be in the foreground. The conversation is pre-structured by nine key questions, which are primarily aimed at perspectives that preserve dignity (see Tab. 2). The aspect of generativity is emphasized . This is understood as the ability "to lead the next generation, [and] including how patients can find strength or comfort in the knowledge that something lasting and transcendent will be left behind after they die." "Generativity" is the developmental task of middle adulthood in Erik H. Erikson's (1966) development model . The concept is extended here until the end of life. Six of the nine questions relate directly to the patient's relatives.

Tell me about your life story, especially the parts that you remember most or that you think are most important. When did you feel most alive? Are there certain things your family should know and remember about you in particular? What are the most important positions you have held in your life (in your family, at work, in the community, etc.)? Why were these so important to you and what do you think you have achieved in these roles? What are your most important achievements and what are you most proud of? Are there any special things that you would like to say urgently to your relatives or that you would like to say again? What are your hopes and dreams for your loved ones? What did you learn about life that you would like to give to others? What advice or guidelines would you like to pass on to your ... (son, daughter, husband, wife, parents or others)? Are there words or even teachings that you would like to give your family members to help them prepare for the future? Are there any other things you would like to include in this permanent document?

Tab. 2 Key questions in dignity therapy (Chochinov et al. 2005)

A total of 3 - 4 sessions are planned within approximately 10 days. The key questions are discussed with the patient in a preparatory session. Then he is interviewed in detail in one to two hour-long sessions. The sessions are taped and transcribed . The therapist puts the text in a legible form in chronological order. The entire text is read out in another session. Sentences that could cause harm to a relative are discussed with the patient and changed if necessary. Finally, multiple copies of the completed "generativity document" are handed over to the patient, who can hand it over or leave it to a person of his choice like a legacy .

Two text excerpts show how participants deal with the impending death and the importance of family and generativity for them. A 56-year-old patient: “Most of all I want my family to know that it is okay for me to die and that they must move on. […] The therapy showed me, I am not the cancer, I still exist here. I'm so grateful for that because I was lost. […] It actually helped me to remember who I am. "A 61-year-old patient:" This experience helped me to immerse myself in myself and to see more meaning in my life. I look forward to sharing them with my family. I have no doubt that it will illuminate them. "

Empirical research on dignity therapy

(1) Patients who have participated in dignity therapy report consistently high levels of satisfaction and gain for themselves and for their families, including an increased sense of dignity, purpose in life, and purposefulness. In a randomized controlled study , patients with end-stage cancer were randomly assigned to one of three treatments: "Dignity therapy", "Client centered care" and "Standard palliative care". They were examined with psychological questionnaire tests (e.g. depression, suicidality, anxiety) at the beginning and after the end of treatment. The three groups showed no significant differences in the test values. So far, positive effects of dignity therapy on physical, emotional or psychological symptoms have only been partially proven (see collective presentation by Fitchett et al. 2015).

(2) In generativity documents, which were analyzed for content, almost all patients expressed "care for the family" as a life-defining value, less often the values ​​"joy" and "being there for others". The memories related about equally often to oneself (e.g. by expressing a "personal moral norm") and to caregivers (e.g. by expressing a "positive feeling about or towards another person"). Family and social relationships are very important to patients.

(3) About a year after the patient's death, relatives gave a very positive opinion on dignity therapy in a survey. Afterwards, participation increased the patient's feeling of dignity and helped him to prepare for death. One daughter said: “Mother was extremely closed emotionally and had great difficulty expressing her feelings. [The interview] gave her an opportunity to do this without feeling vulnerable. ”The relatives also found positive effects on themselves. The Generativity Document helped them through the time of mourning, and it would continue to be a source of comfort for their families and themselves. A widow: “I think dignity therapy really made him feel like he was doing something useful and that he could leave a part of himself behind. That, in turn, helped me and the children, because it is almost as if we were receiving a special gift with his words that we will have for the rest of our lives. ”The participation had a beneficial effect on the relationship between patient and family member.

(4) The applicability of dignity therapy was also tested in people in need of care in a long-term facility (mean age 80 years), both in cognitively intact and cognitively impaired demented people. In the case of the latter, dignity therapy was carried out partly with the participation of relatives, and partly on behalf of relatives. The key questions have been reformulated accordingly. The dignity therapy proved to be well feasible for these two groups. The relatives expressed different content for the demented residents than the cognitively intact residents expressed for themselves. Relatives and selected nurses who had received the generativity document rated the therapy as positive, especially for themselves.

(5) An adapted version of dignity therapy was successfully tested in Denmark. The key questions have been expanded slightly.

Similar approaches

(1) The short-term life review (Ando et al. 2010) is a comparable psychotherapeutic intervention in two sessions for end-stage cancer patients. It was developed in Japan. The aim is for the patient to experience continuity of the self from the past to the present, accept the completion of life and achieve satisfaction with life. In the first session, the patient remembers events in his life using eight key questions and integrates them. The therapist then creates an "album" of key words from the interview that relate to both positive and negative elements, and enriches it with photographs and drawings from books and magazines. In the second session, the patient and therapist look at the album together. The addressee of the album is the patient, who should be strengthened in the feeling for the value of his life and who can look at it again and again.

(2) The relationship dynamics between a terminally ill person and their relatives was described in detail by Elisabeth Kübler-Ross (1926–2004; 1971) as well as by Anne-Marie Tausch (1925–1983) & Reinhard Tausch (1921–2013; 1985). It is helpful to have a direct and open conversation between the sick and their relatives about the impending death, about the fears, worries, wishes and needs of everyone involved. This enables the patient and his relatives to accept death more easily. According to the assessment of the relatives and helpers interviewed by Tausch & Tausch, only about half of the dying had "been able to deal with and accept his death" (p. 83). In dignity therapy, the relationship between patient and family member comes up through the topic of generativity. Participation favors an open exchange between patient and family member (see above).

(3) In African countries there are very many children and young people of whom one or both parents are infected with HIV , have AIDS or have died from it. Affected women in a non-governmental organization in Uganda have started to impart knowledge and coping skills to affected families. This includes instructions on how to write a "memory book" on the history of parents and family to be given to the children. The memory book - a notebook with texts, documents, photos - can be a help in life and the most valuable possession for the child. Similar workshops are held for orphaned children in which they are instructed to write a "hero book" about themselves. The hero books are made accessible to other children and thus have a generative effect. In the "Memory Box Program" in South Africa , all adults in a family (e.g. also grandparents) and the children are included. Under the guidance of a "memory facilitator", mementos are collected, photos are taken, texts are written and a joint interview is held about the life of the sick or deceased person. The memory box is given to the family or children. Memory books and memory boxes are generativity documents. The mothers and parents who are confronted with the threat to life pass something valuable on to their children, through which they are encouraged and supported in their identity formation .

(4) Special generativity documents were created by Randy Pausch - a US professor of computer science. After he was diagnosed with pancreatic cancer at the age of almost 46 years , almost a year later on September 18, 2007, he gave his academic "Last Lecture" entitled "Really Achieving Your Childhood Dreams" ) and published it in an expanded form. He has taken trips and excursions with his family and recorded them on video. These recordings - including those from the Last Lecture - were intended to give his three young children a rich and lasting picture of their father.

See also

• Biography work
• Life Review Therapy
• Palliative care
• Psycho-oncology
• To die

Individual evidence

1. ↑ ^{a b c d e f g} H. M. Chochinov, T. Hack et al .: Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. In: Journal of Clinical Oncology. 23, 2005, pp. 5520-5525.
2. ↑ A. Mehnert, K. Braack, S. Vehling: Meaning-oriented interventions in psycho-oncology. In: Psychotherapist. 56, 2011, pp. 394-399.
3. ↑ German Society for Palliative Medicine e. V., German Hospice and Palliative Association e. V., German Medical Association (Hg): Charter for the care of seriously ill and dying people in Germany. 2015.
4. ^ ID Yalom: Existential Psychotherapy. Edition Humanistic Psychology, Cologne 1989.
5. ↑ ^{a b} H. M. Chochinov, T. Hack, S. McClement et al: Dignity in the terminally ill: A developing empirical model. In: Social Science and Medicine. 54, 2002, pp. 433-443.
6. ↑ ^{a b} A. Schramm, D. Berthold, M. Weber, J. Gramm: A short psychological intervention to strengthen dignity at the end of life. In: Z Palliative Medicine. 15, 2014, pp. 99-101.
7. ↑ ^{a b c} H. M. Chochinov, LJ Kristjanson, W. Breitbart et al .: Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: A randomized controlled trial. In: The Lancet Oncology. 12 (8), 2011, pp. 753-762.
8. ^ EH Erikson: Growth and crises of the healthy personality. In: his identity and life cycle. Suhrkamp, ​​Frankfurt am Main 1966, pp. 55-122. (American 1950)
9. ^ F. Höpflinger: Generativity in old age. Generational sociological considerations on an old topic. In: Z Gerontology Geriatrics. 35, 2002, pp. 328-334.
10. ↑ S. Forstmeier: Life review with adjustment problems and life crises. In: A. Maercker, S. Forstmeier (Hrsg.): The life review in therapy and counseling. Springer, Heidelberg 2013, pp. 86-105; here 102 ff.
11. ↑ G. Fitchett, L. Emanuel et al .: Care of the human spirit and the role of dignity therapy: A systematic review of dignity therapy research. In: BioMed Central BMC Palliative Care. 14, 2015, p. 8.
12. ↑ TF Hack, SE McClement, HM Chochinov et al.: Learning from dying patients during their final days: Life reflections gleaned from dignity therapy. In: Palliative Medicine. 24 (7), 2010, pp. 715-723.
13. ^ S. McClement, HM Chochinov, T. Hack et al .: Dignity therapy: Family member perspectives. In: Journal of Palliative Medicine. 10 (5), 2007, pp. 1076-1082.
14. ↑ HM Chovinov, B. Cann et al .: Dignity therapy: A feasibility study of elders in long-term care. In: Palliative and Supportive Care. 10, 2012, pp. 3–15.
15. ↑ LJ Houmann, HM Chochinov, LJ Kristjanson et al .: A prospective evaluation of Dignity Therapy in advanced cancer patients admitted to palliative care. In: Palliative Medicine. 28, 2014, pp. 448-458.
16. ↑ Michiyo Ando, ​​Tatsuya Morita, et al .: Efficacy of short-term life-review interviews on the spiritual well-being of terminally ill cancer patients . In: Journal of Pain and Symptom Management . tape 39 , no. 6 , June 2010, p. 993-1002 ( PDF ).
17. ^ E. Kübler-Ross: Interviews with the dying. Kreuz, Stuttgart 1971. (Droemer Knaur, Munich 2001; Amer. 1969)
18. ↑ A.-M. Tausch, R. Tausch R: gentle dying. What death means to life. Rowohlt, Reinbek 1985.
19. ↑ A. Biryetega: The memory project in Uganda. In: Medicus Mundi Switzerland MMS Bulletin. 97, 2005, pp. 30-33.
20. ↑ P. Schnirch: Pages of love. Memory Books for AIDS Orphans. In: Süddeutsche Zeitung. December 6, 2010.
21. ^ J. Morgan: "I am a hero, I will survive." The 10 Million Hero Book Project. In: Medicus Mundi Switzerland MMS Bulletin. 97, 2005, pp. 11-17.
22. ↑ P. Denis, N. Makiwane: Stories of love, pain and courage: AIDS orphans and memory boxes. In: Oral History. 31, 2003, pp. 66-74.
23. ^ R. Pausch, J. Zaslow: Last Lecture. The lessons of my life. Bertelsmann, Munich 2008, p. 22.