Shared decision-making at the end of life: A focus group study exploring the perceptions and experiences of multi-disciplinary healthcare professionals working in the home setting

Background: Globally recommended in healthcare policy, Shared Decision-Making is also central to international policy promoting community palliative care. Yet realities of implementation by multi-disciplinary healthcare professionals who provide end-of-life care in the home are unclear. Aim: To explore multi-disciplinary healthcare professionals’ perceptions and experiences of Shared Decision-Making at end of life in the home. Design: Qualitative design using focus groups, transcribed verbatim and analysed thematically. Setting/participants: A total of 43 participants, from multi-disciplinary community-based services in one region of the United Kingdom, were recruited. Results: While the rhetoric of Shared Decision-Making was recognised, its implementation was impacted by several interconnecting factors, including (1) conceptual confusion regarding Shared Decision-Making, (2) uncertainty in the process and (3) organisational factors which impeded Shared Decision-Making. Conclusion: Multiple interacting factors influence implementation of Shared Decision-Making by professionals working in complex community settings at the end of life. Moving from rhetoric to reality requires future work exploring the realities of Shared Decision-Making practice at individual, process and systems levels.

Download Full-text

Faculty Opinions recommendation of Uncertainty in end-of-life care and shared decision making.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.717968480.15765060 ◽

2012 ◽

Author(s):

Rik Gerritsen

Keyword(s):

Decision Making ◽

End Of Life ◽

Shared Decision Making ◽

End Of Life Care ◽

Shared Decision ◽

Life Care

Download Full-text

Healthcare professionals’ behaviour regarding the implementation of shared decision-making in screening programmes: A systematic review

Patient Education and Counseling ◽

10.1016/j.pec.2021.01.032 ◽

2021 ◽

Author(s):

María José Hernández-Leal ◽

María José Pérez-Lacasta ◽

María Feijoo-Cid ◽

Vanesa Ramos-García ◽

Misericòrdia Carles-Lavila

Keyword(s):

Systematic Review ◽

Decision Making ◽

Shared Decision Making ◽

Healthcare Professionals ◽

Shared Decision

Download Full-text

Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development

BMC Medical Informatics and Decision Making ◽

10.1186/s12911-021-01479-w ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

I. E. H. Kremer ◽

P. J. Jongen ◽

S. M. A. A. Evers ◽

E. L. J. Hoogervorst ◽

W. I. M. Verhagen ◽

...

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Decision Aid ◽

Healthcare Professionals ◽

Treatment Options ◽

Shared Decision ◽

Patient Decision Aid ◽

Disease Modifying Drugs ◽

Patient Decision ◽

Further Development

Abstract Background Since decision making about treatment with disease-modifying drugs (DMDs) for multiple sclerosis (MS) is preference sensitive, shared decision making between patient and healthcare professional should take place. Patient decision aids could support this shared decision making process by providing information about the disease and the treatment options, to elicit the patient’s preference and to support patients and healthcare professionals in discussing these preferences and matching them with a treatment. Therefore, a prototype of a patient decision aid for MS patients in the Netherlands—based on the principles of multi-criteria decision analysis (MCDA) —was developed, following the recommendations of the International Patient Decision Aid Standards. MCDA was chosen as it might reduce cognitive burden of considering treatment options and matching patient preferences with the treatment options. Results After determining the scope to include DMDs labelled for relapsing-remitting MS and clinically isolated syndrome, users’ informational needs were assessed using focus groups (N = 19 patients) and best-worst scaling surveys with patients (N = 185), neurologists and nurses (N = 60) to determine which information about DMDs should be included in the patient decision aid. Next, an online format and computer-based delivery of the patient decision aid was chosen to enable embedding of MCDA. A literature review was conducting to collect evidence on the effectiveness and burden of use of the DMDs. A prototype was developed next, and alpha testing to evaluate its comprehensibility and usability with in total thirteen patients and four healthcare professionals identified several issues regarding content and framing, methods for weighting importance of criteria in the MCDA structure, and the presentation of the conclusions of the patient decision aid ranking the treatment options according to the patient’s preferences. Adaptations were made accordingly, but verification of the rankings provided, validation of the patient decision aid, evaluation of the feasibility of implementation and assessing its value for supporting shared decision making should be addressed in further development of the patient decision aid. Conclusion This paper aimed to provide more transparency regarding the developmental process of an MCDA-based patient decision aid for treatment decisions for MS and the challenges faced during this process. Issues identified in the prototype were resolved as much as possible, though some issues remain. Further development is needed to overcome these issues before beta pilot testing with patients and healthcare professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, healthcare professionals and the quality of care.

Download Full-text

How individual ethical frameworks shape physician trainees’ experiences providing end-of-life care: a qualitative study

Journal of Medical Ethics ◽

10.1136/medethics-2020-106690 ◽

2021 ◽

pp. medethics-2020-106690

Author(s):

Sarah Rosenwohl-Mack ◽

Daniel Dohan ◽

Thea Matthews ◽

Jason Neil Batten ◽

Elizabeth Dzeng

Keyword(s):

Decision Making ◽

End Of Life ◽

Shared Decision Making ◽

End Of Life Care ◽

The United States ◽

Ethical Framework ◽

Shared Decision ◽

Life Care ◽

Best Interest ◽

Ethical Frameworks

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.

Download Full-text

Interventions for increasing the use of shared decision making by healthcare professionals

Cochrane Database of Systematic Reviews ◽

10.1002/14651858.cd006732.pub4 ◽

2018 ◽

Cited By ~ 41

Author(s):

France Légaré ◽

Rhéda Adekpedjou ◽

Dawn Stacey ◽

Stéphane Turcotte ◽

Jennifer Kryworuchko ◽

...

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Healthcare Professionals ◽

Shared Decision

Download Full-text

Making shared decision-making (SDM) a reality: protocol of a large-scale long-term SDM implementation programme at a Northern German University Hospital

BMJ Open ◽

10.1136/bmjopen-2020-037575 ◽

2020 ◽

Vol 10 (10) ◽

pp. e037575 ◽

Cited By ~ 1

Author(s):

Marion Danner ◽

Friedemann Geiger ◽

Kai Wehkamp ◽

Jens Ulrich Rueffer ◽

Christine Kuch ◽

...

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Large Scale ◽

Healthcare Professionals ◽

Medical Center ◽

Ethics Committee ◽

University Hospital ◽

Shared Decision ◽

Programme Implementation ◽

Patient Decision

IntroductionShared decision-making (SDM) is not yet widely used when making decisions in German hospitals. Making SDM a reality is a complex task. It involves training healthcare professionals in SDM communication and enabling patients to actively participate in communication, in addition to providing sound, easy to understand information on treatment alternatives in the form of evidence-based patient decision aids (EbPDAs). This project funded by the German Innovation Fund aims at designing, implementing and evaluating a multicomponent, large-scale and integrative SDM programme—called SHARE TO CARE (S2C)—at all clinical departments of a University Hospital Campus in Northern Germany within a 4-year time period.Methods and analysisS2C tackles the aforementioned components of SDM: (1) training physicians in SDM communication, (2) activating and empowering patients, (3) developing EbPDAs in the most common/relevant diseases and (4) training other healthcare professionals in SDM coaching. S2C is designed together with patients and providers. The physicians’ training programme entails an online and an in situ training module. The decision coach training is based on a similar but less comprehensive approach. The development of online EbPDAs follows the International Patient Decision Aid Standards and includes written, graphical and video-based information. Validated outcomes of SDM implementation are measured in a preintervention and postintervention evaluation design. Process evaluation accompanies programme implementation. Health economic impact of the intervention is investigated using a propensity-score-matched approach based on potentially preference-sensitive hospital decisions.Ethics and disseminationEthics committee review approval has been obtained from Medical Ethics Committee of the Medical Faculty of the Christian-Albrechts-University Kiel. Project information and results will be disseminated at conferences, on project-hosted websites at University Hospital Medical Center Schleswig Holstein and by S2C as well as in peer-reviewed and professional journals.

Download Full-text

Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals

Palliative & Supportive Care ◽

10.1017/s1478951519000865 ◽

2019 ◽

Vol 18 (4) ◽

pp. 425-430 ◽

Cited By ~ 2

Author(s):

Oindrila Dutta ◽

Priya Lall ◽

Paul Victor Patinadan ◽

Josip Car ◽

Chan Kee Low ◽

...

Keyword(s):

Decision Making ◽

End Of Life ◽

Patient Autonomy ◽

Healthcare Professionals ◽

Program Effectiveness ◽

Self Determination ◽

Truth Telling ◽

Focus Group Study ◽

Eol Care ◽

Care Decision

AbstractObjectivesAsia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients’ autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled.MethodsGuided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals’ attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis.ResultsThe extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices.Significance of resultsHealthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

Download Full-text