Challenges to Exploring the Patient Perspective in Palliative Care Conversations: A Qualitative Study Among Chronic Obstructive Pulmonary Disease and Chronic Heart Failure Patients and Their Health Care Professionals

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Abstract

Objectives:

The aim of this study was to reveal the challenges faced in exploring the patient's perspective as experienced by patients with chronic obstructive pulmonary disease or chronic heart failure and their health care professionals (HCPs), including the circumstances under which these challenges are experienced during palliative care conversations.

Methods:

This is a qualitative, explorative study in the Netherlands using purposive sampling to create diversity in demographic variables of both patients and HCPs. Semistructured interviews with 12 patients and 7 HCPs were carried out with the use of topic lists. All interviews were audiorecorded, verbatim transcribed, and thematically analyzed.

Results:

Patients find it challenging to express their wishes, preferences, and boundaries and say what is really preoccupying them, especially when they do not feel a good connection with their HCP. HCPs find it challenging to get to know the patient and discuss the patient's perspective particularly when patients are not proactive, open or realistic, or unable to understand or recall information.

Conclusions:

Patients and HCPs seem to share the same aim: patients want to be known and understood and HCPs want to know and understand the patient as a unique individual. At the same time, they seem unable to personalize their conversations. To move beyond this impasse patients and HCPs need to take steps and be empowered to do so.

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Most cited references 45

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Barriers and facilitators to the implementation of person‐centred care in different healthcare contexts

Lucy Moore, Nicky Britten, Doris Lydahl … (2016)

Background To empower patients and improve the quality of care, policy‐makers increasingly adopt systems to enhance person‐centred care. Although models of person‐centredness and patient‐centredness vary, respecting the needs and preferences of individuals receiving care is paramount. In Sweden, as in other countries, healthcare providers seek to improve person‐centred principles and address gaps in practice. Consequently, researchers at the University of Gothenburg Centre for Person‐Centred Care are currently delivering person‐centred interventions employing a framework that incorporates three routines. These include eliciting the patient's narrative, agreeing a partnership with shared goals between patient and professional, and safeguarding this through documentation. Aim To explore the barriers and facilitators to the delivery of person‐centred care interventions, in different contexts. Method Qualitative interviews were conducted with a purposeful sample of 18 researchers from seven research studies across contrasting healthcare settings. Interviews were transcribed, translated and thematically analysed, adopting some basic features of grounded theory. Ethical issues The ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Swedish Research Council. Results Barriers to the implementation of person‐centred care covered three themes: traditional practices and structures; sceptical, stereotypical attitudes from professionals; and factors related to the development of person‐centred interventions. Facilitators included organisational factors, leadership and training and an enabling attitude and approach by professionals. Trained project managers, patients taking an active role in research and adaptive strategies by researchers all helped person‐centred care delivery. Conclusion At the University of Gothenburg, a model of person‐centred care is being initiated and integrated into practice through research. Knowledgeable, well‐trained professionals facilitate the routines of narrative elicitation and partnership. Strong leadership and adaptive strategies are important for overcoming existing practices, routines and methods of documentation. This study provides guidance for practitioners when delivering and adapting person‐centred care in different contexts.

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Patients' unvoiced agendas in general practice consultations: qualitative study.

C Bradley, Simon Barry, F Stevenson … (2000)

To investigate patients' agendas before consultation and to assess which aspects of agendas are voiced in the consultation and the effects of unvoiced agendas on outcomes. Qualitative study. 20 general practices in south east England and the West Midlands. 35 patients consulting 20 general practitioners in appointment and emergency surgeries. Patients' agendas are complex and multifarious. Only four of 35 patients voiced all their agendas in consultation. Agenda items most commonly voiced were symptoms and requests for diagnoses and prescriptions. The most common unvoiced agenda items were: worries about possible diagnosis and what the future holds; patients' ideas about what is wrong; side effects; not wanting a prescription; and information relating to social context. Agenda items that were not raised in the consultation often led to specific problem outcomes (for example, major misunderstandings), unwanted prescriptions, non-use of prescriptions, and non-adherence to treatment. In all of the 14 consultations with problem outcomes at least one of the problems was related to an unvoiced agenda item. Patients have many needs and when these are not voiced they can not be addressed. Some of the poor outcomes in the case studies were related to unvoiced agenda items. This suggests that when patients and their needs are more fully articulated in the consultation better health care may be effected. Steps should be taken in both daily clinical practice and research to encourage the voicing of patients' agendas.

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Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor-patient communication in general practice.

C Bradley, Simon Barry, F Stevenson … (2001)

Mishler (The discourse of medicine. The dialectics of medical interviews. Norwood, NJ: Ablex), applying Habermas's theory of Communicative Action to medical encounters. showed how the struggle between the voice of medicine and the voice of the lifeworld fragmented and suppressed patients' multi-faceted, contextualised and meaningful accounts. This paper investigates and critiques Mishler's premise that this results in inhumane, ineffective medical care. Using a more complex data collection strategy, comprising patient interviews, doctor interviews and transcribed consultations we show more complex relations than emerged from Mishler's analysis. We found four communication patterns across 35 general practice case studies. When doctor and patient both used the voice of medicine exclusively (acute physical complaints) this worked for simple unitary problems (Strictly Medicine). When both doctor and patient engaged with the lifeworld, more of the agenda was voiced (Mutual Lifeworld) and patients were recognised as unique human beings (psychological plus physical problems). Poorest outcomes occurred where patients used the voice of the lifeworld but were ignored (Lifeworld Ignored) or blocked (Lifeworld Blocked) by doctors' use of voice of medicine (chronic physical complaints). The analysis supports the premise that increased use of the lifeworld makes for better outcomes and more humane treatment of patients as unique human beings. Some doctors switched communication strategies in different consultations, which suggests that their behaviour might be open to change. If doctors could be sensitised to the importance of dealing with the concerns of the lifeworld for patients with chronic physical conditions as well as psychological conditions, it might be possible to obtain better care for patients. This would require attention to structural aspects of the healthcare system to enable doctors to work fully within the patient-centred model.

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Author and article information

Journal

Journal ID (nlm-ta): Palliat Med Rep

Journal ID (iso-abbrev): Palliat Med Rep

Journal ID (publisher-id): pmr

Title: Palliative Medicine Reports

Publisher: Mary Ann Liebert, Inc., publishers (140 Huguenot Street, 3rd Floor New Rochelle, NY 10801 USA )

ISSN (Electronic): 2689-2820

Publication date (Electronic): April 2024

Publication date Collection: 2024

Publication date PMC-release: April 2024

Volume: 5

Issue: 1

Pages: 150-161

Affiliations

[ ¹ ]Research Group Smart Health, Saxion University of Applied Sciences, Deventer/Enschede, the Netherlands.

[ ² ]Department of Anesthesiology, Pain and Palliative Medicine, Radboudumc University Medical Center, Nijmegen, the Netherlands.

[ ³ ]Research Group Living Well with Dementia, Windesheim University of Applied Sciences, Zwolle, the Netherlands.

[ ⁴ ]Nivel Netherlands Institute for Health Services Research, Utrecht, the Netherlands.

Author notes

[ ** ]

Co-first authors.

[*] [ ^* ]Address correspondence to: Annet Olde Wolsink-van Harlingen, MSc, Research Group Smart Health, Saxion University of Applied Sciences, Personalized Care PO Box 70.000, 7500 KB Enschede, the Netherlands, a.s.oldewolsink@ 123456saxion.nl

Article

Publisher ID: 10.1089/pmr.2023.0071

DOI: 10.1089/pmr.2023.0071

PMC ID: 11002561

PubMed ID: 38596696

SO-VID: a775899f-26d0-42f9-8053-b7daf3395a65

License:

This Open Access article is distributed under the terms of the Creative Commons License [CC-BY] ( http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Challenges to Exploring the Patient Perspective in Palliative Care Conversations: A Qualitative Study Among Chronic Obstructive Pulmonary Disease and Chronic Heart Failure Patients and Their Health Care Professionals

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Abstract

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Most cited references 45

Barriers and facilitators to the implementation of person‐centred care in different healthcare contexts

Patients' unvoiced agendas in general practice consultations: qualitative study.

Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor-patient communication in general practice.

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