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Delivering bad news: the importance of involving family members
Patient Education and Counseling 34 (1998) S5–S41
Individual presentations 1
Decision making during bad news interviews BAD NEWS INTERVIEWS
Experience of cancer–A study of the dialogue between patients operated on for testicular cancer and their physicians ´ Ullabeth Satterlund ¨ Inger Sanden, Larsson (a), Charli Eriksson. (a) Department of Advanced Nursing Educa¨ ¨ tion, Goteborg University, S-431 26 Molndal , Sweden Introduction. Cancer is a disease which affects many areas of the afflicted person’s life. Consequently, the disease and the interpretation of its meaning is unique for each person who is diagnosed as suffering from cancer. The way in which the afflicted person gives expression to his suffering can be seen as a symbolic bridge between the individual, his body and the cultural environment in which he lives and works. The theoretical framework in this study is communication. The particular interest here is interaction in health care settings. Such interaction can be viewed as an instance of institutional discourse. The overall aim of the study is to investigate how young men operated on for testicular cancer and their physicians talk about the disease, its treatment and the prognosis. Method. The study consist of 21 audio-taped dialogues between men, operated on for testicular cancer, and their physicians during the control phase of the disease. In all cases, the patients as well as the physicians (the oncologist) were interviewed. In the present analysis, we will draw on data from transcribed dialogues as well as on the audio-tapes with the oncologist. The interviews have been used to validate the interpretations made. Preliminary results show how patients and physicians give expression to the disease, its treatment and the prognosis. The disease is described partly in terms of lumps and spots and partly as cancer. These results also provide an insight into how men with testicular cancer have ‘‘learnt’’ to talk about their affliction and discomfort in connection with care and treatment. Finally, the results focused on when society regards an individual, who has had a tumour disease, as being healthy. Conclusion. The results will be discussed during the presentation in the framework of scientific perspectives e.g. it is the social, medical or individual voice that prevails in practice.
Drs. Fetzen de Groot. Martini Hospital, P& O Department, Postbus 30033, 9700 RM Groningen, The Netherlands. Introduction. To hear and to tell the diagnosis ‘cancer’ is a complex event. Grief and fear run parallel with making far-reaching decisions. In this study we are searching for patterns in decision processes during this event. The results are discussed in theoretical concepts of harmony and discrepancy in patient-doctor communication, in the theory of rational decision-making and in the context of the informed consent discussion. Methods. For this qualitative study nine bad news interviews were observed. Additional information was gathered by individual in-depth interviews with patients and four internists. Results. The diagnosis is communicated in words like: ‘cancer’ and ‘metastasis’ and in more implicit phrases such as: ‘You’d better go home to be with your children’. Implicit phrases can be useful to smoothen communication but can confuse the patient as well. When the doctor has told the diagnosis, the patient asks for the impact on his future. The doctors tell,often in medical details, about all the possibilities in research and therapy. This information confuses the patient too. Doctors tend to pose possible examinations and therapy as accomplished facts, especially when the prognosis is hopeful.The patient accepts the examinations to come without discussion. In case of a therapy however, the patient usually asks information and time to think it over. Especially in the cases when the prognosis is hopeless, the patient-doctor communication seems to be characterized by a more equal relationship. Conclusions. Clarity about the diagnosis and prognosis seems to be prerequisite for a patient’s active role in the decision-making process. The way a doctor introduces the subject of further examinations influences this process too. The more equal the patient-doctor communication is, the more the patient is aware of his influence. Many patients appreciate this. Nevertheless, some caution with respect to the growing influence of patients in medical choices is necessary. Delivering bad news: the importance of involving family members J. Speice, H. Laneri, J. Harkness, R. Frankel, D.Roter,AB
0738-3991 / 98 / $19.00 1998 Elsevier Science Ireland Ltd. All rights reserved. PII S0738-3991( 98 )00056-1
S6
Individual presentations / Patient Education and Counseling 34 (1998) S5 –S41
Kornblith, T.Ahles, E.Winer, S.Fleishman, P.Luber, M.Zevon, R. McQuellon, P.Trief, J.Finkel, J.Spira, JC Holland, D.Greenberg, J.Rowland, Doctor-patient Communication Consortium, Rochester, NY, USA Primary Care Institute, Highland Hospital, 1000 South Avenue, Rochester, NY 14620, USA. Introduction. Not much attention has been paid to involving family members in the process of delivering bad news. As part of a larger study, we studied the comments of cancer patients and their providers on the positive and challenging aspects of having family members present during the delivery of a cancer diagnosis and throughout the course of treatment. Methods. The study included 19 focus groups (11 patient and 8 provider groups) at cancer centers around the United States. A semi-structured focus group guide was used to facilitate the discussion of receiving a cancer diagnosis and to address communication and patientprovider relationship issues across the continuum of care from pre-diagnosis through diagnosis, postdiagnosis, treatment and remission or recurrence. Focus groups were audiotape recorded and transcribed verbatim. We developed 33 categories and coded 1001 focus group comments with a high degree of agreement among the researchers. One principle finding was the importance of including family members. Results. Each of the transcripts contained examples of statements by providers or patients highlighting the importance of including family members in the care that patients received. These statements most frequently were related to positive aspects of having family members or friends present during the consultation. These included support and additional checks on the content of information exchanges during the encounter. Some statements were focused on the challenges of including family member. Conclusions. Participants generally described the experiences of including family members as positive, however some challenging aspects of including family members were noted. Patients and providers can benefit from the information-gathering and emotional support that family members can offer. Providers may also benefit from assessing family dynamics and negotiating with patients and family members to determine the optimal conditions for inclusion. European Donor Hospital Education Programme (EDHW)–Effects on the competence of intensive care doctors and nurses Blok, G.A. (a), Dalen, J. van, Morton, J.M., Morley, M.J.P. (a) University of Maastricht, Dept. of Educ. Development & Research, P.O.Box 616, 6200 MD Maastricht, The Netherlands. Introduction. EDHEP is a one-day workshop for mixed groups of sixteen doctor and nurses from intensive care. It was designed to address the need for sensitive and
appropriate communication when dealing with death and donation. EDHEP was piloted in The Netherlands and has been implemented in 30 countries since 1992. Programme evaluation data suggest that participants feel more secure in dealing with bereavement and also their ‘barrier’ to requesting donation is reduced. Method. A research project was started in 1993 to examine the effect of attending EDHEP on the competence of doctors and nurses in intensive care to death and donation. Two interrelated studies, involving The Netherlands and the United Kingdom, utilized an ‘untreated control group design with pretest and posttest’ and a six-month follow-up. A knowledge test, an attitude scale, a self-efficacy scale and two different instruments for communication skills (paper cases in The Netherlands and simulated-relatives encounters in the United Kingdom) were used to measure the effect on competence. Results. The results show that in both countries EDHEP had a significant effect on self-efficacy (p , .001). EDHEP participants’ attitudes changed in The Netherlands at post test and was still apparent at follow-up (p , .01). There was a lasting effect on breaking news of death in the United Kingdom. All EDHEP participants indicated to have less difficulty with the donation request after attending the workshop (p , .05). EDHEP participants indicated they had made more request for organ donation at follow-up (p , . 05). Conclusion. It can be concluded that EDHEP is an effective programme for medical and nursing professionals to improve their communication skills to develop more positive views on donation and to increase their confidence when dealing, with death and donation. Challenges in communicating about surgical breast biopsy in mammography screening process Aro AR, Rehnberg N, Absetz P. Health Education Research Unit, Department of Epidemiology and Health‘ Promotion, National Public Health Institute, Mannerheimintie 166, 00300 Helsinki, Finland. Introduction. Mammography screening is used for detecting early stage breast cancer in order to improve prognosis. Screening is targeted to age groups of unselected (asymptomatic) women. The study describes needs of communication and how these needs were met among women going through surgical breast biopsy in a screening programme. Methods. Subjects were 46 women (22 benign, 24 malign finding) who responded the survey both pre- and postscreening out of 98 invited to breast biopsy. Background factors were measured one month before invitation to screening, and experience of the screening process and biopsy 10 weeks after the referral to biopsy -using both structured and open questions. Results. In general the subjects expressed satisfaction with the amount of information received at hospital, and
Individual presentations 1
Decision making during bad news interviews BAD NEWS INTERVIEWS
Experience of cancer–A study of the dialogue between patients operated on for testicular cancer and their physicians ´ Ullabeth Satterlund ¨ Inger Sanden, Larsson (a), Charli Eriksson. (a) Department of Advanced Nursing Educa¨ ¨ tion, Goteborg University, S-431 26 Molndal , Sweden Introduction. Cancer is a disease which affects many areas of the afflicted person’s life. Consequently, the disease and the interpretation of its meaning is unique for each person who is diagnosed as suffering from cancer. The way in which the afflicted person gives expression to his suffering can be seen as a symbolic bridge between the individual, his body and the cultural environment in which he lives and works. The theoretical framework in this study is communication. The particular interest here is interaction in health care settings. Such interaction can be viewed as an instance of institutional discourse. The overall aim of the study is to investigate how young men operated on for testicular cancer and their physicians talk about the disease, its treatment and the prognosis. Method. The study consist of 21 audio-taped dialogues between men, operated on for testicular cancer, and their physicians during the control phase of the disease. In all cases, the patients as well as the physicians (the oncologist) were interviewed. In the present analysis, we will draw on data from transcribed dialogues as well as on the audio-tapes with the oncologist. The interviews have been used to validate the interpretations made. Preliminary results show how patients and physicians give expression to the disease, its treatment and the prognosis. The disease is described partly in terms of lumps and spots and partly as cancer. These results also provide an insight into how men with testicular cancer have ‘‘learnt’’ to talk about their affliction and discomfort in connection with care and treatment. Finally, the results focused on when society regards an individual, who has had a tumour disease, as being healthy. Conclusion. The results will be discussed during the presentation in the framework of scientific perspectives e.g. it is the social, medical or individual voice that prevails in practice.
Drs. Fetzen de Groot. Martini Hospital, P& O Department, Postbus 30033, 9700 RM Groningen, The Netherlands. Introduction. To hear and to tell the diagnosis ‘cancer’ is a complex event. Grief and fear run parallel with making far-reaching decisions. In this study we are searching for patterns in decision processes during this event. The results are discussed in theoretical concepts of harmony and discrepancy in patient-doctor communication, in the theory of rational decision-making and in the context of the informed consent discussion. Methods. For this qualitative study nine bad news interviews were observed. Additional information was gathered by individual in-depth interviews with patients and four internists. Results. The diagnosis is communicated in words like: ‘cancer’ and ‘metastasis’ and in more implicit phrases such as: ‘You’d better go home to be with your children’. Implicit phrases can be useful to smoothen communication but can confuse the patient as well. When the doctor has told the diagnosis, the patient asks for the impact on his future. The doctors tell,often in medical details, about all the possibilities in research and therapy. This information confuses the patient too. Doctors tend to pose possible examinations and therapy as accomplished facts, especially when the prognosis is hopeful.The patient accepts the examinations to come without discussion. In case of a therapy however, the patient usually asks information and time to think it over. Especially in the cases when the prognosis is hopeless, the patient-doctor communication seems to be characterized by a more equal relationship. Conclusions. Clarity about the diagnosis and prognosis seems to be prerequisite for a patient’s active role in the decision-making process. The way a doctor introduces the subject of further examinations influences this process too. The more equal the patient-doctor communication is, the more the patient is aware of his influence. Many patients appreciate this. Nevertheless, some caution with respect to the growing influence of patients in medical choices is necessary. Delivering bad news: the importance of involving family members J. Speice, H. Laneri, J. Harkness, R. Frankel, D.Roter,AB
0738-3991 / 98 / $19.00 1998 Elsevier Science Ireland Ltd. All rights reserved. PII S0738-3991( 98 )00056-1
S6
Individual presentations / Patient Education and Counseling 34 (1998) S5 –S41
Kornblith, T.Ahles, E.Winer, S.Fleishman, P.Luber, M.Zevon, R. McQuellon, P.Trief, J.Finkel, J.Spira, JC Holland, D.Greenberg, J.Rowland, Doctor-patient Communication Consortium, Rochester, NY, USA Primary Care Institute, Highland Hospital, 1000 South Avenue, Rochester, NY 14620, USA. Introduction. Not much attention has been paid to involving family members in the process of delivering bad news. As part of a larger study, we studied the comments of cancer patients and their providers on the positive and challenging aspects of having family members present during the delivery of a cancer diagnosis and throughout the course of treatment. Methods. The study included 19 focus groups (11 patient and 8 provider groups) at cancer centers around the United States. A semi-structured focus group guide was used to facilitate the discussion of receiving a cancer diagnosis and to address communication and patientprovider relationship issues across the continuum of care from pre-diagnosis through diagnosis, postdiagnosis, treatment and remission or recurrence. Focus groups were audiotape recorded and transcribed verbatim. We developed 33 categories and coded 1001 focus group comments with a high degree of agreement among the researchers. One principle finding was the importance of including family members. Results. Each of the transcripts contained examples of statements by providers or patients highlighting the importance of including family members in the care that patients received. These statements most frequently were related to positive aspects of having family members or friends present during the consultation. These included support and additional checks on the content of information exchanges during the encounter. Some statements were focused on the challenges of including family member. Conclusions. Participants generally described the experiences of including family members as positive, however some challenging aspects of including family members were noted. Patients and providers can benefit from the information-gathering and emotional support that family members can offer. Providers may also benefit from assessing family dynamics and negotiating with patients and family members to determine the optimal conditions for inclusion. European Donor Hospital Education Programme (EDHW)–Effects on the competence of intensive care doctors and nurses Blok, G.A. (a), Dalen, J. van, Morton, J.M., Morley, M.J.P. (a) University of Maastricht, Dept. of Educ. Development & Research, P.O.Box 616, 6200 MD Maastricht, The Netherlands. Introduction. EDHEP is a one-day workshop for mixed groups of sixteen doctor and nurses from intensive care. It was designed to address the need for sensitive and
appropriate communication when dealing with death and donation. EDHEP was piloted in The Netherlands and has been implemented in 30 countries since 1992. Programme evaluation data suggest that participants feel more secure in dealing with bereavement and also their ‘barrier’ to requesting donation is reduced. Method. A research project was started in 1993 to examine the effect of attending EDHEP on the competence of doctors and nurses in intensive care to death and donation. Two interrelated studies, involving The Netherlands and the United Kingdom, utilized an ‘untreated control group design with pretest and posttest’ and a six-month follow-up. A knowledge test, an attitude scale, a self-efficacy scale and two different instruments for communication skills (paper cases in The Netherlands and simulated-relatives encounters in the United Kingdom) were used to measure the effect on competence. Results. The results show that in both countries EDHEP had a significant effect on self-efficacy (p , .001). EDHEP participants’ attitudes changed in The Netherlands at post test and was still apparent at follow-up (p , .01). There was a lasting effect on breaking news of death in the United Kingdom. All EDHEP participants indicated to have less difficulty with the donation request after attending the workshop (p , .05). EDHEP participants indicated they had made more request for organ donation at follow-up (p , . 05). Conclusion. It can be concluded that EDHEP is an effective programme for medical and nursing professionals to improve their communication skills to develop more positive views on donation and to increase their confidence when dealing, with death and donation. Challenges in communicating about surgical breast biopsy in mammography screening process Aro AR, Rehnberg N, Absetz P. Health Education Research Unit, Department of Epidemiology and Health‘ Promotion, National Public Health Institute, Mannerheimintie 166, 00300 Helsinki, Finland. Introduction. Mammography screening is used for detecting early stage breast cancer in order to improve prognosis. Screening is targeted to age groups of unselected (asymptomatic) women. The study describes needs of communication and how these needs were met among women going through surgical breast biopsy in a screening programme. Methods. Subjects were 46 women (22 benign, 24 malign finding) who responded the survey both pre- and postscreening out of 98 invited to breast biopsy. Background factors were measured one month before invitation to screening, and experience of the screening process and biopsy 10 weeks after the referral to biopsy -using both structured and open questions. Results. In general the subjects expressed satisfaction with the amount of information received at hospital, and