Meeting in the Middle Deathtalk

1. Meeting in the Middle Deathtalk Bragi Skúlason Ph.D.

2. There’s no real talk about death without a talk about life

3. My backround My training in Clinical Pastoral Education, was Minneapolis based, with Carl Rogers and a client-centered approach very much in focus

4. My background The most important hospital units during my training were in the area of adult oncology, pediatric oncology, NICU, chronic pain, mental health, follow-up program for bereaved parents

5. My background My work as a hospital chaplain at the Universdity Hospital in Reykjavík Iceland for almost 28 years has been mostly in the areas of bereavement, NICU, adult ICU, ER, pediatric oncology, adult oncology and hematology, mental health, being a member of the ethics committee, on the palliative care advisory booard, work with the effects of natural disasters, fatal accidents and suicides. My work has included work with families of well over 2.400 deceased persons

6. This study started as a study of Icelandic widowers This was the first nation-wide study of widowers in Iceland, and included all widowers age 30-75 Their wives died 1999-2001

7. My Ph.D. study included: Anthropology of Health, Psychology and Pastoral Care

8. This survey is MI inspired It´s part of a larger survey which is my Ph.D. work

9. This is a retrospective analysis of detailed prospective “field notes” from chaplain interviews of all patients aged 30–75 years. After all study patients had died, these notes were analyzed to assess the prevalence of patient-initiated discussions regarding their own impending death and whether non-provocative evocation-type interventions had facilitated such communication

10. According to common practice based on a generally agreed interpretation of Icelandic law on the rights of patients, health care professionals cannot discuss prognosis and treatment with a patient’s family without that patient’s consent. This limitation poses ethical problems, because research has shown that, in the absence of insight and communication regarding a patient’s impending death, patient’s significant others may subsequently experience long-term psychological distress

11. Ethical sustainability The patient’s boundaries are respected

12. Article 4

13. Talk about own impending death during a standard clinical interview 91% 80% 59% 30% Patient initiated talk about own impending death. After “evocation”

14. Benefits of deathtalk The long-term benefits of having information concerning a loved one´s impending death can significantly lower the psychological trauma and morbidity in bereavement Awareness time

15. It has been well documented, that many clinicians are uncomfortable discussing end of life until death is imminent The AM, Hak T, Koëter, van Der Wal G (2000) Miyaji NT (1993) Ruddick W (1999) Christakis NA, Iwashyna TJ (1998)

16. The aim of the study was to document in a systematic way if and how dying patients initiate a talk about death with health care professionals A gender perspective may be of importance, we hypothesized that female patients would initiate such talks more often than male patients

17. During the years 2006-2008 a total of 195 interviews were conducted at the Landspitali University Hospital During data analysis, simple methods from Motivational Interviewing were used as a way of addressing deathtalk, when interviews were not going in that direction, including open-ended questions and complex reflections

18. 195 patients in end-of-life care 114 81 All had booked an interview with hospital chaplain

19. The patients were all terminal and were registered at the University Hospital in Reykjavík, at various units but a majority came from oncology and hospice, seeking pastoral care

20. All patients were receiving palliative care and/or had DNR written in their chart Before data collection began, certain groundrules were set

21. Groundrules Anonymity By nature of a patient-chaplain interview, sometimes the issue is confession and forgiveness, and then it may be unnecessary to initiate deathtalk because it is somehow part of everything discussed, even though death is never mentioned. When this happened, the person seeking communion and/or wanting to confess sins, was included in the numbers of patients initiating deathtalk

22. Groundrules Deathtalk was never initiated by chaplain in interviews which were less than 20 minutes long, when there was some other dominant topic When patient was showing ambivalence regarding difficult issues, without initiating deathtalk, the chaplain always initiated When deathtalk was initiated by chaplain, and the patient didn´t want to talk about death, the chaplain immediately backed away from the topic

23. Open-ended questions were used How do you perceive your life in the future? What changes can you see take place in the future? What will you do if your disease progresses?

24. Complex reflection was also used Patient says: I worry about my family Interviewer responds: You´re worried about what will happen to your family when you´re no longer able to be there for them

25. Opening statements leading to deathtalk were registered Opening statements in interviews where deathtalk didn´t take place, in spite of chaplain´s evocation, were also registered indicating the direction of the interview The opening statements were categorized so prevalence of various topics would be easier to compare

26. General characteristics of participants

27. Client’s most common identified reasons for interview

28. Client’s identified reasons for interview

29. Acceptance I look forward to dying This has been a good life I don´t want to die, but it´s not up to me

30. Concerns: family well-being, family crisis I´m really worried about my family My wife encouraged me to talk to you My husband is having an affair

31. Hope I´ve lost all hope I keep fighting I hope I can get well soon

32. Existential/spiritual/religious/pastoral I´ve been having dreams about dying Does life have a purpose? Does God exist? Can I talk to you about not believing in God? Will God forgive all my sins? Will you pray for me?

33. Physical concerns It hurts so much, and it´s like it´s never going to end My heart is weak

34. Remorse In my lifetime I´ve done some bad things I have wasted my life I have abused a lot of people

35. Issues involving care I´m angry with my doctor

36. Chaplain´s “expertise” It looks like I´m dying. What do you think?? I wanted to talk to someone I can trust Can prayer help? Is death merciful? Does it hurt when the soul leaves the body?

37. Unspecified/other I still have so much to do I don´t have much to talk about I don´t want to talk about cancer Are you about my age?

38. Conclusions: In an interview with a chaplain, a great majority of terminal female patients initiate a talk about death. In a same situation, much fewer male patients initiate such talks In an interview with a chaplain, terminal male patients seem to benefit from a pastor’s evocation to talk about death to a greater extent compared to women For a person with an terminal disease, the most common reason for seeking a pastoral interview, are spiritual/religious needs or concerns about family

39. Results Gender differences in terminal care communication may be radically reduced by using simple evocation methods that are relatively unpretentious, but require considerable clinical training. Men in terminal care are more reluctant than women to enter into discussion regarding their own impending death.

40. It is urgent that more attention be paid to end-of-life communication, for the benefit of terminal patients and, also, for the benefit of mourners. It calls for a multi-disciplinary effort in the area of communication in palliative care. The time has come for death talk.

41. Professionals were also interviewed To find out what ideas they had about death

42. Doctor Question: What is your view of death? Answer: I´m afraid of death and find it very threatening

43. Funeral director Question: What is your view of death? Answer: I believe in life after death. I believe there´s a purpose behind all this

44. Nurse Question: Are some of the patients afraid of being buried alive? Answer: Yes, I remember a few..if we know of this fear, then e open up a vein to make sure that this person is definitely dead Question: Do health-care professionals work with the image of an “ideal death”? Answer: Yes