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Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study

Background Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical pract...

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Published in:Health expectations : an international journal of public participation in health care and health policy 2017-02, Vol.20 (1), p.69-84
Main Authors: Brom, Linda, De Snoo‐Trimp, Janine C., Onwuteaka‐Philipsen, Bregje D., Widdershoven, Guy A. M., Stiggelbout, Anne M., Pasman, H. Roeline W.
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container_title Health expectations : an international journal of public participation in health care and health policy
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creator Brom, Linda
De Snoo‐Trimp, Janine C.
Onwuteaka‐Philipsen, Bregje D.
Widdershoven, Guy A. M.
Stiggelbout, Anne M.
Pasman, H. Roeline W.
description Background Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care. Objective To examine whether and how the steps of SDM can be recognized in decision making about second‐ and third‐line chemotherapy. Methods Fourteen advanced cancer patients were followed over time using face‐to‐face in‐depth interviews and observations of the patients' out‐clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding. Results Patients were satisfied with the decision‐making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy. Conclusion To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened.
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M. ; Stiggelbout, Anne M. ; Pasman, H. Roeline W.</creator><creatorcontrib>Brom, Linda ; De Snoo‐Trimp, Janine C. ; Onwuteaka‐Philipsen, Bregje D. ; Widdershoven, Guy A. M. ; Stiggelbout, Anne M. ; Pasman, H. Roeline W.</creatorcontrib><description>Background Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care. Objective To examine whether and how the steps of SDM can be recognized in decision making about second‐ and third‐line chemotherapy. Methods Fourteen advanced cancer patients were followed over time using face‐to‐face in‐depth interviews and observations of the patients' out‐clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding. Results Patients were satisfied with the decision‐making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy. Conclusion To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened.</description><identifier>ISSN: 1369-6513</identifier><identifier>EISSN: 1369-7625</identifier><identifier>DOI: 10.1111/hex.12434</identifier><identifier>PMID: 26669902</identifier><language>eng</language><publisher>England: John Wiley &amp; Sons, Inc</publisher><subject>Adult ; Aged ; Aged, 80 and over ; Attitude of Health Personnel ; Cancer ; Cancer patients ; Cancer therapies ; Care and treatment ; Chemotherapy ; Clinical decision making ; Clinics ; Collaboration ; Communication ; Death &amp; dying ; Decision analysis ; Decision Making ; end of life ; Female ; Group decision making ; Humans ; Interviews as Topic ; Longitude ; Longitudinal Studies ; Male ; Medical personnel ; Medical prognosis ; Middle Aged ; Neoplasms - drug therapy ; Neoplasms - pathology ; Oncology, Experimental ; Original Research Paper ; Original Research Papers ; Palliative care ; Participation ; Patient care planning ; Patient Participation ; Patient satisfaction ; Patients ; Physician-Patient Relations ; Physicians ; Precision medicine ; Qualitative Research ; Quality of life ; Researchers ; Risk communication ; shared decision making ; treatment options</subject><ispartof>Health expectations : an international journal of public participation in health care and health policy, 2017-02, Vol.20 (1), p.69-84</ispartof><rights>2015 The Authors. Published by John Wiley &amp; Sons Ltd.</rights><rights>2015 The Authors. Health Expectations Published by John Wiley &amp; Sons Ltd.</rights><rights>COPYRIGHT 2015 John Wiley &amp; Sons, Inc.</rights><rights>Copyright © 2017 John Wiley &amp; Sons Ltd</rights><rights>2017. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). 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M.</creatorcontrib><creatorcontrib>Stiggelbout, Anne M.</creatorcontrib><creatorcontrib>Pasman, H. Roeline W.</creatorcontrib><title>Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study</title><title>Health expectations : an international journal of public participation in health care and health policy</title><addtitle>Health Expect</addtitle><description>Background Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care. Objective To examine whether and how the steps of SDM can be recognized in decision making about second‐ and third‐line chemotherapy. Methods Fourteen advanced cancer patients were followed over time using face‐to‐face in‐depth interviews and observations of the patients' out‐clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding. Results Patients were satisfied with the decision‐making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy. Conclusion To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. 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M.</au><au>Stiggelbout, Anne M.</au><au>Pasman, H. Roeline W.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study</atitle><jtitle>Health expectations : an international journal of public participation in health care and health policy</jtitle><addtitle>Health Expect</addtitle><date>2017-02</date><risdate>2017</risdate><volume>20</volume><issue>1</issue><spage>69</spage><epage>84</epage><pages>69-84</pages><issn>1369-6513</issn><eissn>1369-7625</eissn><abstract>Background Patients' preferences and expectations should be taken into account in treatment decision making in the last phase of life. Shared decision making (SDM) is regarded as a way to give the patient a central role in decision making. Little is known about how SDM is used in clinical practice in advanced cancer care. Objective To examine whether and how the steps of SDM can be recognized in decision making about second‐ and third‐line chemotherapy. Methods Fourteen advanced cancer patients were followed over time using face‐to‐face in‐depth interviews and observations of the patients' out‐clinic visits. Interviews and outpatient clinic visits in which treatment options were discussed or decisions made were transcribed verbatim and analysed using open coding. Results Patients were satisfied with the decision‐making process, but the steps of SDM were barely seen in daily practice. The creation of awareness about available treatment options by physicians was limited and not discussed in an equal way. Patients' wishes and concerns were not explicitly assessed, which led to different expectations about improved survival from subsequent lines of chemotherapy. Conclusion To reach SDM in daily practice, physicians should create awareness of all treatment options, including forgoing treatment, and communicate the risk of benefit and harm. Open and honest communication is needed in which patients' expectations and concerns are discussed. Through this, the difficult process of decision making in the last phase of life can be facilitated and the focus on the best care for the specific patient is strengthened.</abstract><cop>England</cop><pub>John Wiley &amp; Sons, Inc</pub><pmid>26669902</pmid><doi>10.1111/hex.12434</doi><tpages>16</tpages><oa>free_for_read</oa></addata></record>
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subjects Adult
Aged
Aged, 80 and over
Attitude of Health Personnel
Cancer
Cancer patients
Cancer therapies
Care and treatment
Chemotherapy
Clinical decision making
Clinics
Collaboration
Communication
Death & dying
Decision analysis
Decision Making
end of life
Female
Group decision making
Humans
Interviews as Topic
Longitude
Longitudinal Studies
Male
Medical personnel
Medical prognosis
Middle Aged
Neoplasms - drug therapy
Neoplasms - pathology
Oncology, Experimental
Original Research Paper
Original Research Papers
Palliative care
Participation
Patient care planning
Patient Participation
Patient satisfaction
Patients
Physician-Patient Relations
Physicians
Precision medicine
Qualitative Research
Quality of life
Researchers
Risk communication
shared decision making
treatment options
title Challenges in shared decision making in advanced cancer care: a qualitative longitudinal observational and interview study
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