Dataset Information

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

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.

SUBMITTER: Kitta A

PROVIDER: S-EPMC7981304 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundEnd-of-life discussions (EOLds) occur infrequently until cancer patients become terminally ill.MethodsTo identify factors associated with the timing of EOLds, we conducted a nationwide survey of 864 medical oncologists. We surveyed the timing of EOLds held with advanced cancer patients regarding prognosis, hospice, site of death, and do-not-resuscitate (DNR) status; and we surveyed physicians' experience of EOLds, perceptions of a good death, and beliefs regarding these issues. Multivariate analyses identified determinants of early discussions.ResultsAmong 490 physicians (response rate: 57%), 165 (34%), 65 (14%), 47 (9.8%), and 20 (4.2%) would discuss prognosis, hospice, site of death, and DNR status, respectively, "now" (i.e., at diagnosis) with a hypothetical patient with newly diagnosed metastatic cancer. In multivariate analyses, determinants of discussing prognosis "now" included the physician perceiving greater importance of autonomy in experiencing a good death (odds ratio [OR]: 1.34; p = .014), less perceived difficulty estimating the prognosis (OR: 0.77; p = .012), and being a hematologist (OR: 1.68; p = .016). Determinants of discussing hospice "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.58; p = .018), less discomfort talking about death (OR: 0.67; p = .002), and no responsibility as treating physician at end of life (OR: 1.94; p = .031). Determinants of discussing site of death "now" included the physician perceiving greater importance of life completion in experiencing a good death (OR: 1.83; p = .008) and less discomfort talking about death (OR: 0.74; p = .034). The determinant of discussing DNR status "now" was less discomfort talking about death (OR: 0.49; p = .003).ConclusionReflection by oncologists on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death is helpful for oncologists to perform appropriate EOLds.Implications for practiceOncologists' own perceptions about what is important for a "good death," perceived difficulty in estimating the prognosis, and discomfort in talking about death influence their attitudes toward end-of-life discussions. Reflection on their own values regarding a good death, knowledge about validated prognostic measures, and learning skills to manage discomfort talking about death are important for improving oncologists' skills in facilitating end-of-life discussions.

Project description:ObjectiveThe COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities.DesignQualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework.SettingResidential long-term care.Participants23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians.ResultsMotivation barriers include families' lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population.ConclusionFindings reveal that validating families' concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.

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Project description:BackgroundHigh-quality communication about end-of-life care results in greater patient and family satisfaction. End-of-life discussions should occur early during the patient's disease trajectory and yet is often addressed only when patients become severely ill. As a result, end-of-life discussions are commonly initiated during unplanned hospital admissions, which create additional challenges for physicians, patients, and families.ObjectiveTo better understand how internal medicine attending physicians and trainees experience end-of-life discussions with patients and families during acute hospitalizations.DesignWe conducted an interview-based qualitative study using an interpretivist approach. We selected participants based on purposeful maximal variation and theoretical sampling strategies. We conducted an individual, in-depth, semi-structured interview with each participant.ParticipantsWe recruited 15 internal medicine physicians with variable levels of clinical training and experience who worked in one of five university-affiliated academic hospitals.ApproachInterview transcripts were analyzed inductively and reflectively. Data were grouped by themes and categories. Data collection and analysis occurred concurrently, led to iterative adjustments of the interview guide, and continued until theoretical sufficiency was reached.Key resultsPhysicians depicted end-of-life discussions as a process directed at painting a realistic picture of a clinical situation. By focusing their efforts on reaching a shared understanding of a clinical situation with patients/families, physicians self-delineated the boundaries of their professional responsibilities regarding end-of-life care (i.e., help with understanding, not with accepting or making the "right" decisions). Information sharing took precedence over emotional support in most physicians' accounts of end-of-life discussions. However, the emotional impact of end-of-life discussions on families and physicians was readily recognized by participants.ConclusionEnd-of-life discussions are complex, dynamic social interactions that involve multiple, complementary competencies. Focusing mostly on sharing clinical information during end-of-life discussions may distract physicians from providing emotional support to families and prevent improvements of end-of-life care delivered in acute care settings.