Initiating decision-making conversations in palliative care: an ethnographic discourse analysis

Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Macdonald, Mary Ellen; Marchand, Robert

doi:10.1186/1472-684x-13-63

Cited by 34 publications

(39 citation statements)

References 28 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Late referrals to palliative care are an aspect that may complicate patient involvement in care and the promotion of autonomy. In late engagement, besides the reduced ability of the patient to participate in decision-making due to advanced illness, the decisions that remained mainly concern terminal symptom management [68].…”

Section: Discussionmentioning

confidence: 99%

The influence of spirituality on decision-making in palliative care outpatients: a cross-sectional study

et al. 2020

View full text Add to dashboard Cite

Background: Decision-making in palliative care can be complex due to the uncertain prognosis and general fear surrounding decisions. Decision-making in palliative care may be influenced by spiritual and cultural beliefs or values. Determinants of the decision-making process are not completely understood, and spirituality is essential for coping with illness. Thus, this study aims to explore the influence of spirituality on the perception of healthcare decision-making in palliative care outpatients. Methods: A cross-sectional study was developed. A battery of tests was administered to 95 palliative outpatients, namely: sociodemographic questionnaire (SQ), Decisional Conflict Scale (DCS), Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp), and a semi-structured interview (SSI) to study one's perception of spirituality and autonomy in decision-making. Statistical analyses involved descriptive statistics for SQ and SSI. The Mann-Whitney test was used to compare scale scores between groups and correlations were used for all scales and subscales. The analysis of patients' definitions of spirituality was based on the interpretative phenomenological process. Results: Spiritual wellbeing significantly correlated with greater levels of physical, emotional and functional wellbeing and a better quality of life. Greater spiritual wellbeing was associated with less decisional conflict, decreased uncertainty, a feeling of being more informed and supported and greater satisfaction with one's decision. Most patients successfully implemented their decision and identified themselves as capable of early decision-making. Patients who were able to implement their decision presented lower decisional conflict and higher levels of spiritual wellbeing and quality of life. Within the 16 themes identified, spirituality was mostly described through family. Patients who had received spiritual care displayed better scores of spiritual wellbeing, quality of life and exhibited less decisional conflict. Patients considered spirituality during illness important and believed that the need to receive spiritual support and specialised care could enable decision-making when taking into consideration ones' values and beliefs. Conclusion: The impact of spiritual wellbeing on decision-making is evident. Spirituality is a key component of overall wellbeing and it assumes multidimensional and unique functions. Individualised care that promotes engagement in decision-making and considers patients' spiritual needs is essential for promoting patient empowerment, autonomy and dignity.

show abstract

Section: Discussionmentioning

confidence: 99%

The influence of spirituality on decision-making in palliative care outpatients: a cross-sectional study

et al. 2020

View full text Add to dashboard Cite

show abstract

“…End-of-life communication is a well-researched phenomenon amongst terminally ill patients, often in liaison with healthcare professionals [ 1 , 2 ]. Studies show that communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death [ 3 – 5 ].…”

Section: Introductionmentioning

confidence: 99%

Socio-cultural contexts of end- of- life conversations and decisions: bereaved family cancer caregivers’ retrospective co-constructions

Githaiga

Swartz

2017

BMC Palliat Care

View full text Add to dashboard Cite

Background: End-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya. Method: An interpretative phenomenological analysis approach was utilized to explore pertinent end-of-life communication themes. Four mini focus group interviews with a total of 13 participants [n = 5; n = 3; n = 3; n = 2] were conducted. Results: Two end-of-life themes, advance directives as preparedness for death, and initiating death talk were examined. Findings (a) illustrate the role of family dynamics in influencing the nature of end-of-life conversations and decisions (b) demonstrate the transitional nature of family caregiver roles, and (c) underscore the paradox of the critical role played by family members in palliative care versus their ill preparedness in dealing with end-of-life issues. Conclusions: Findings are relevant in informing palliative psychosocial interventions and specifically the concerns and decisions of cancer patients and their families. This prompts further engagement with the question of how to equip family caregivers in resource-limited contexts for end of life care. Methodologically, these results demonstrate the possibility of simultaneous elucidation of individual experiences, interactive co-constructions and the socio-cultural contexts of experiences and meaning making processes in IPA research.

show abstract

“…The palliative care service under study was mobile across a community hospital, and also followed palliative care patients in the outpatient clinic and at home (Bélanger, Rodríguez, Groleau et al, 2014). Health care providers included two pivot nurses who were responsible for overseeing the continuum of care and six family physicians who were each responsible for hospitalized patients for one week and who followed their own patients at home and at the outpatient clinic unless an exacerbation required hospitalization.…”

Section: Methodological Approachmentioning

confidence: 99%

Patient participation in palliative care decisions: An ethnographic discourse analysis

Bélanger

Rodríguez

Groleau

et al. 2016

International Journal of Qualitative Studies on Health and Well

Self Cite

View full text Add to dashboard Cite

The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize decisions that shaped patients’ dying trajectories. Discourse analysis encourages awareness of the role of language in either promoting or hindering patient participation in decision-making.

show abstract

Initiating decision-making conversations in palliative care: an ethnographic discourse analysis

Cited by 34 publications

References 28 publications

The influence of spirituality on decision-making in palliative care outpatients: a cross-sectional study

The influence of spirituality on decision-making in palliative care outpatients: a cross-sectional study

Socio-cultural contexts of end- of- life conversations and decisions: bereaved family cancer caregivers’ retrospective co-constructions

Patient participation in palliative care decisions: An ethnographic discourse analysis

Contact Info

Product

Resources

About