Space for intuition – the ‘Surprise’-Question in haemato-oncology: Qualitative analysis of experiences and perceptions of haemato-oncologists

Background: Early integration of palliative care can improve outcomes for people with cancer and non-cancer diagnoses. However, prediction of survival for individuals is challenging, in particular in patients with haematological malignancies who are known to have limited access to palliative care. The ‘Surprise’-Question can be used to facilitate referral to palliative care. Aim: To explore experiences, views and perceptions of haemato-oncologists on the use of the ‘Surprise’-Question in the haemato-oncology outpatients clinics of a university hospital in Germany. Design: A qualitative study using individual semi-structured interviews transcribed verbatim and analysed thematically based on the framework approach. Setting/participants: The study took place at the haemato-oncology outpatient clinic and the bone marrow transplantation outpatient clinic of a university hospital. Nine haemato-oncologists participated in qualitative interviews. Results: Thematic analysis identified 4 themes and 11 subthemes: (1) meaning and relevance of the ‘Surprise’-Question; (2) feasibility; (3) the concept of ‘surprise’ and (4) personal aspects of prognostication. A key function of the ‘Surprise’-Question was to stimulate intuition and promote patient-centred goals of care by initiating a process of pause → reflection → change of perspective. It was easy and quick to use, but required time and communication skills to act on. Participants’ training in palliative care enhanced their willingness to use the ‘Surprise’-Question. Conclusion: Irrespective of its use in prognostication, the ‘Surprise’-Question is a valuable tool to facilitate consideration of patient-centred goals and promote holistic care in haemato-oncology. However, prognostic uncertainty, lack of time and communication skills are barriers for integration into daily practice. Further research should involve haematology patients to integrate their needs and preferences.

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A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals

Palliative Medicine ◽

10.1177/0269216318757622 ◽

2018 ◽

Vol 32 (6) ◽

pp. 1078-1090 ◽

Cited By ~ 18

Author(s):

Sophie Pask ◽

Cathryn Pinto ◽

Katherine Bristowe ◽

Liesbeth van Vliet ◽

Caroline Nicholson ◽

...

Keyword(s):

Palliative Care ◽

Qualitative Interviews ◽

Family Health ◽

Specialist Palliative Care ◽

Structured Interviews ◽

Framework Analysis ◽

Individual Patient Level ◽

Patient Level ◽

Palliative Care Services ◽

Family Professionals

Background: Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. Aim: To explore palliative care stakeholders’ views on what makes a patient more or less complex and insights on capturing complexity at patient-level. Design: In-depth qualitative interviews, analysed using Framework analysis. Participants/setting: Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). Results: 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services’ respond to needs and societal perspectives on care. ‘Pre-existing’, ‘cumulative’ and ‘invisible’ complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner’s Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Conclusion: Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.

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The silent transition from curative to palliative treatment: a qualitative study about cancer patients’ perceptions of end-of-life discussions with oncologists

Supportive Care in Cancer ◽

10.1007/s00520-020-05750-0 ◽

2020 ◽

Author(s):

A. Kitta ◽

A. Hagin ◽

M. Unseld ◽

F. Adamidis ◽

T. Diendorfer ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

Cancer Patients ◽

Defense Mechanisms ◽

Qualitative Methodology ◽

Transition Process ◽

Structured Interviews ◽

Advanced Cancer Patients ◽

Early Integration ◽

Disease Trajectory

Abstract Objective The aims of the study were to examine patients’ experiences of end-of-life (EOL) discussions and to shed light on patients’ perceptions of the transition from curative to palliative care. Methods This study was based on a qualitative methodology; we conducted semi-structured interviews with advanced cancer patients admitted to the palliative care unit (PCU) of the Medical University of Vienna. Interviews were recorded digitally and transcribed verbatim. Data were analyzed based on thematic analysis, using the MAXQDA software. Results Twelve interviews were conducted with patients living with terminal cancer who were no longer under curative treatment. The findings revealed three themes: (1) that the medical EOL conversation contributed to the transition process from curative to palliative care, (2) that patients’ information preferences were ambivalent and modulated by defense mechanisms, and (3) that the realization and integration of medical EOL conversations into the individual’s personal frame of reference is a process that needs effort and information from different sources coming together. Conclusions The results of the present study offer insight into how patients experienced their transition from curative to palliative care and into how EOL discussions are only one element within the disease trajectory. Many patients struggle with their situations. Therefore, more emphasis should be put on repeated offers to have EOL conversations and on early integration of aspects of palliative care into the overall treatment.

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Incident investigations by the regulatory authority of Swedish healthcare – a 20-year perspective

Journal of Hospital Administration ◽

10.5430/jha.v4n6p68 ◽

2015 ◽

Vol 4 (6) ◽

pp. 68 ◽

Cited By ~ 2

Author(s):

Jonas Wrigstad ◽

Johan Bergström ◽

Pelle Gustafson

Keyword(s):

Healthcare System ◽

Regulatory Authority ◽

Qualitative Interviews ◽

Healthcare Providers ◽

University Hospital ◽

Office Work ◽

Structured Interviews ◽

Incident Investigation ◽

Micro Level

Objective: The purpose of this study was to describe procedural changes in hospital incident investigations and show the consequences of these changes over time.Methods: A two-stage method was used. First component of the study was a content analysis of 87 incident investigation sconducted 1995-2014 by the regulatory authority after adverse events in a Swedish university hospital. Second component was conducting semi-structured interviews with 11 investigators from all regulatory authority regional offices in Sweden.Results: In a minority of incident investigations, where further demands for action were required by the regulatory authority, a major portion of these were aimed at the micro-level. A plan for follow-up was expressed in only one tenth of the investigations. All investigators had a background from the healthcare system and saw this as advantageous. Their personal memory was claimed to be the only tool when referring to previous cases. Less fieldwork, more office work and more uniformity of language were recognised changes in comparison over time. The role of doing “auditing” was the most common description by the investigators themselves.Conclusions: The micro-level focus of the investigations reflected an organisational structure within the regulatory authority. We saw signs of parallel system weaknesses within the Swedish healthcare system with a clear absence of formalised organisational memory and a malfunctioning follow-up system of incident investigations. This can be seen both regarding the healthcare providers and the regulatory authority. The reports from the qualitative interviews data indicated that “auditing at the office” was considered the main occupation in incident investigations conducted by the regulatory authority.

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Patients’ and Relatives’ Preferences for a Palliative/Oncology Day Ward and Out-of-Hours Telemedicine—An Interpretive Description

Healthcare ◽

10.3390/healthcare9060758 ◽

2021 ◽

Vol 9 (6) ◽

pp. 758

Author(s):

Eithne Hayes Bauer ◽

Anders Nikolai Ørsted Schultz ◽

Anette Brink ◽

Lena Oechsle Jørgensen ◽

Georg Bollig

Keyword(s):

Palliative Care ◽

Interpretive Description ◽

Burden Of Care ◽

Structured Interviews ◽

Out Of Hours ◽

Early Integration ◽

Palliative Oncology ◽

Hospital To Home ◽

Palliative Patients

Demographical challenges require adaptation and tailoring of services to suit palliative patients’ and relatives’ needs. Therefore, an interpretive descriptive study was performed to explore patients’ and relatives’ preferences for the establishment of a day ward and out-of-hours telemedicine. Semi-structured interviews were performed, and data were analysed using thematic analysis. Participants included patients (n = 12) and relatives (n = 5). Three themes emerged: (1) ‘Transport burden’ relates to transition from home-to-hospital-to-home and acknowledges the strain placed on patients and relatives. (2) ‘Role of relatives’ contemplates how the role of families in patient care influences patient preferences. (3) ‘Telemedicine—preferences and concerns’ covers preferences and concerns related to telemedicine in palliative care. The burden of transport and living alone play substantial roles in preferences for place of treatment. Relatives of palliative patients who avail of a day ward and telemedicine may experience an increase in the burden of care. Recognition of concerns pertinent to palliative patients and relatives is an important step in planning new services in palliative care. Concerns may be mitigated by rethinking referral guidelines, incorporating voluntary services, early integration of telemedicine into palliative care and examining patients and relatives’ expectations to care, but requires further research.

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Establishing key criteria to define and compare models of specialist palliative care: A mixed-methods study using qualitative interviews and Delphi survey

Palliative Medicine ◽

10.1177/0269216319858237 ◽

2019 ◽

Vol 33 (8) ◽

pp. 1114-1124 ◽

Cited By ~ 3

Author(s):

Alice M Firth ◽

Suzanne M O’Brien ◽

Ping Guo ◽

Jane Seymour ◽

Heather Richardson ◽

...

Keyword(s):

Palliative Care ◽

Mixed Methods ◽

Delphi Study ◽

Qualitative Interviews ◽

Models Of Care ◽

Mixed Methods Study ◽

Specialist Palliative Care ◽

Structured Interviews ◽

Care Services ◽

Palliative Care Services

Background: Specialist palliative care services have various configurations of staff, processes and interventions, which determine how care is delivered. Currently, there is no consistent way to define and distinguish these different models of care. Aim: To identify the core components that characterise and differentiate existing models of specialist palliative care in the United Kingdom. Design: Mixed-methods study: (1) semi-structured interviews to identify criteria, (2) two-round Delphi study to rank/refine criteria, and (3) structured interviews to test/refine criteria. Setting/participants: Specialist palliative care stakeholders from hospice inpatient, hospital advisory, and community settings. Results: (1) Semi-structured interviews with 14 clinical leads, from eight UK organisations (five hospice inpatient units, two hospital advisory teams, five community teams), provided 34 preliminary criteria. (2) Delphi study: Round 1 (54 participants): thirty-four criteria presented, seven removed and seven added. Round 2 (30 participants): these 34 criteria were ranked with the 15 highest ranked criteria, including setting, type of care, size of service, diagnoses, disciplines, mode of care, types of interventions, ‘out-of-hours’ components (referrals, times, disciplines, mode of care, type of care), external education, use of measures, bereavement follow-up and complex grief provision. (3) Structured interviews with 21 UK service leads (six hospice inpatients, four hospital advisory and nine community teams) refined the criteria from (1) and (2), and provided four further contextual criteria (team purpose, funding, self-referral acceptance and discharge). Conclusion: In this innovative study, we derive 20 criteria to characterise and differentiate models of specialist palliative care – a major paradigm shift to enable accurate reporting and comparison in practice and research.

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O Discurso do Sujeito Coletivo Emergente de Médicos em Relação a Cuidados Paliativos/ The Collective Subject Discourse Emerging Physicians Regarding palliative Care

REVISTA CIÊNCIAS EM SAÚDE ◽

10.21876/rcsfmit.v3i3.238 ◽

1970 ◽

Vol 3 (3) ◽

pp. 25-34 ◽

Cited By ~ 1

Author(s):

Katrine de Freitas Valeriano ◽

Thais de Paiva Guimarães Barreiro ◽

José Vitor Da Silva ◽

Jorge Leonardo Narcy ◽

Maria Tereza de Jesus Pereira

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Social Representations ◽

University Hospital ◽

Structured Interviews ◽

Relieve Pain ◽

Positive Feelings ◽

Negative Feelings

Objetivos: conhecer os significados e os sentimentos emergentes dos médicos em relação aos cuidados paliativos, bem como identificar a atuação desses profissionais frente aos pacientes com necessidades de cuidados paliativos numa instituição hospitalar da cidade de Pouso Alegre-MG. Materiais e métodos: o presente trabalho foi de abordagem qualitativa, do tipo exploratório e transversal. A amostra foi de 25 médicos atuantes no Hospital Universitário Samuel Libânio, Pouso Alegre, MG. A amostragem foi do tipo intencional ou teórica. A coleta de dados ocorreu por meio de entrevista semiestruturada e usaram-se as estratégias metodológicas do Discurso do Sujeito Coletivo (DSC) para a análise e tratamento dos dados. Resultados e discussão: do tema “significado de cuidados paliativos”, emergiram-se as ideias de cuidados diversificados, aliviar a dor e o sofrimento e proporcionar conforto. Do tema “sentimento ao prestar assistência”, as representações sociais dos médicos foram diversos sentimentos negativos, diversos sentimentos positivos e sentimentos ambivalentes. Sobre o “atendimento aos pacientes”, os médicos mencionaram as ideias de oferecer conforto e qualidade de vida, atendendo o paciente normalmente e dando atenção. Conclusão: A atuação profissional dos médicos abordados, em paliação, visa a oferecer conforto e qualidade de vida, mas se verifica que há uma diversidade de significados e sentimentos em relação aos cuidados paliativos na percepção destes profissionais. Palavras chave: Cuidados paliativos; Medicina; Terminalidade. ABSTRACT Objectives: To know the meanings and feelings emerging of physicians in relation to palliative care, and to identify the role of these professionals against patients in need of palliative care in a hospital in the city of Pouso Alegre-MG. Materials and methods: This study was a qualitative, exploratory and cross. The sample consisted of 25 doctors working at the University Hospital Samuel Libânio, Pouso Alegre, MG. Sampling was the intentional or theoretical. The data were collected through semi-structured interviews and used up the methodological strategies of the Collective Subject Discourse (CSD) for the analysis and processing of data. Results and discussion: theme "meaning of palliative care," sprang up ideas diversified care, relieve pain and suffering and provide comfort. Theme "feeling to assist" the social representations of the doctors were many negative feelings, many positive feelings and ambivalent feelings. On the "patient care" physicians mentioned the ideas of comfort and quality of life, given the patient normally and paying attention. Conclusion: The role of physicians addressed in palliation, aims to offer comfort and quality of life, but it turns out that there is a diversity of meanings and feelings in relation to the perception of palliative care professionals. Keywords: Palliative care; Medicine; Terminality.

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‘Are we on the same wavelength?’ International nurses and the process of confronting and adjusting to clinical communication in Australia

Communication & Medicine ◽

10.1558/cam.28953 ◽

2017 ◽

Vol 13 (3) ◽

pp. 263-274 ◽

Cited By ~ 1

Author(s):

Tonia Crawford ◽

Peter Roger ◽

Sally Candlin

Keyword(s):

Communication Skills ◽

Thematic Analysis ◽

Care Setting ◽

Linguistically Diverse ◽

The Other ◽

Culturally And Linguistically Diverse ◽

Central Theme ◽

Structured Interviews ◽

Clinical Communication ◽

Professional Experiences

Effective communication skills are important in the health care setting in order to develop rapport and trust with patients, provide reassurance, assess patients effectively and provide education in a way that patients easily understand (Candlin and Candlin, 2003). However with many nurses from culturally and linguistically diverse (CALD) backgrounds being recruited to fill the workforce shortfall in Australia, communication across cultures with the potential for miscommunication and ensuing risks to patient safety has gained increasing focus in recent years (Shakya and Horsefall, 2000; Chiang and Crickmore, 2009). This paper reports on the first phase of a study that examines intercultural nurse patient communication from the perspective of four Registered Nurses from CALD backgrounds working in Australia. Five interrelating themes that were derived from thematic analysis of semi-structured interviews are discussed. The central theme of ‘adjustment’ was identified as fundamental to the experiences of the RNs and this theme interrelated with each of the other themes that emerged: professional experiences with communication, ways of showing respect, displaying empathy, and vulnerability.

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