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

Author(s):  
A. Kitta ◽  
A. Hagin ◽  
M. Unseld ◽  
F. Adamidis ◽  
T. Diendorfer ◽  
...  

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.

2021 ◽  
Author(s):  
Johanna Sommer ◽  
Christopher Chung ◽  
Dagmar M. Haller ◽  
Sophie Pautex

Abstract Background: Patients suffering from advanced cancer often loose contact with their primary care physician (PCP) during oncologic treatment and palliative care is introduced very late.The aim of this pilot study was to test the feasibility and procedures for a randomized trial of an intervention to teach PCPs a palliative care approach and communication skills to improve advanced cancer patients’ quality of life. Methods: Observational pilot study in 5 steps. 1) Recruitment of PCPs. 2) Intervention: training on palliative care competencies and communication skills addressing end-of-life issues.3) Recruitment of advanced cancer patients by PCPs. 4) Patients follow-up by PCPs, and assessment of their quality of life by a research assistant 5) Feedback from PCPs using a semi-structured focus group and three individual interviews with qualitative deductive theme analysis.Results: 8 PCPs were trained. PCPs failed to recruit patients for fear of imposing additional loads on their patients. PCPs changed their approach of advanced cancer patients. They became more conscious of their role and responsibility during oncologic treatments and felt empowered to take a more active role picking up patient’s cues and addressing advance directives. They developed interprofessional collaborations for advance care planning. Overall, they discovered the role to help patients to make decisions for a better end-of-life.Conclusions: PCPs failed to recruit advanced cancer patients, but reported a change in paradigm about palliative care. They moved from a focus on helping patients to die better, to a new role helping patients to define the conditions for a better end-of-life.Trial registration : The ethics committee of the canton of Geneva approved the study (2018-00077 Pilot Study) in accordance with the Declaration of Helsinki


2019 ◽  
Vol 33 (7) ◽  
pp. 783-792 ◽  
Author(s):  
Monica Fliedner ◽  
Sofia Zambrano ◽  
Jos MGA Schols ◽  
Marie Bakitas ◽  
Christa Lohrmann ◽  
...  

Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions. Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 92-92
Author(s):  
Mohamedtaki Abdulaziz Tejani ◽  
Charles Stewart Kamen ◽  
Supriya Gupta Mohile ◽  
Robert E. Gramling

92 Background: Despite scientific advances, uncertainty remains an inherent and significant issue in clinical practice. Among patients with advanced cancer, uncertainty about the future can lead to distress, loss of sense of control and lower quality of life. Helping patients manage uncertainty is a core domain of patient-centered care. Little is known about how palliative care providers work with cancer patients to accomplish this goal. Methods: We performed descriptive analysis of transcripts from audio recorded inpatient palliative care consultations among adult cancer patients referred for ‘goals of care’ or ‘end of life decision making.’ Each transcript was read as a whole and then again line by line to code verbal expressions of uncertainty. Excerpted segments dealing with uncertainty about the future were grouped and analyzed by an experienced qualitative research working group. Results: 33 consultations were analyzed: 53% men, median age 62 and median survival 3.6 weeks. Multiple expressions of uncertainty were identified – 106 by patients/families and 56 by providers. A majority (63%) were centered on the inevitable uncertainty in predicting clinical course at the end of life. Palliative care providers managed this type of uncertainty in three main ways: (a) pairing expressions of unpredictability with reiteration of what was certain/known at time of consultation (e.g. ‘we will not let you suffer’); (b) utilizing inherent uncertainty of future to promote hope and faith (e.g. ‘nobody knows how long you are going to live’) and (c) reassurance that multi-disciplinary providers would convene to provide consensus and clarity for next visit (e.g. ‘we will all put our heads together and come up with exactly which options are available.’). Conclusions: Uncertainty is highly prevalent during end of life consultations with advanced cancer patients. Palliative care providers use validating strategies to help patients acknowledge and cope with what is inherently uncertain about their future. These methods can be used to develop communication training and guidelines for use with advanced cancer patients at the end of life.


2020 ◽  
Author(s):  
Ellinor Christin Haukland ◽  
Christian von Plessen ◽  
Carsten Nieder ◽  
Barthold Vonen

Abstract Background: Anticancer treatment exposes patients to negative consequences such as increased toxicity and decreased quality of life, and there are clear guidelines recommending limiting use of aggressive anticancer treatments for patients near end of life. The aim of this study is to investigate the association between anticancer treatment given during the last 30 days of life and adverse events contributing to death and elucidate how adverse events can be used as a measure of quality and safety in end-of-life cancer care Methods: Retrospective cohort study of 247 deceased hospitalised cancer patients at three hospitals in Norway. The Global Trigger Tool method were used to identify adverse events. We used Poisson regression and binary logistic regression to compare adverse events and association with use of anticancer treatment given during the last 30 days of life. Results: 30 % of deceased hospitalised cancer patients received some kind of anticancer treatment during the last 30 days of life, mainly systemic anticancer treatment. These patients had 62 % more adverse events compared to patients not being treated last 30 days, 39 vs. 24 adverse events per 1 000 patient days (p<0.001, OR 1.62 (1.23 – 2.15). They also had twice the odds of an adverse event contributing to death compared to patients without such treatment, 33 vs. 18 % (p=0.045, OR 1.85 (1.01 – 3.36)). Receiving follow up by specialist palliative care reduced the rate of AEs per 1 000 patient days in both groups by 29 % (p= 0.02, IRR 0.71, CI 95% 0.53 – 0.96). Conclusions: Anticancer treatment given during the last 30 days of life is associated with a significantly increased rate of adverse events and related mortality. Patients receiving specialist palliative care had significantly fewer adverse events, supporting recommendations of early integration of palliative care in a patient safety perspective.


2020 ◽  
Author(s):  
Ellinor Christin Haukland ◽  
Christian von Plessen ◽  
Carsten Nieder ◽  
Barthold Vonen

Abstract Background: Anticancer treatment exposes patients to negative consequences such as increased toxicity and decreased quality of life, and there are clear guidelines recommending limiting use of aggressive anticancer treatments for patients near end of life. The aim of this study is to investigate the association between anticancer treatment given during the last 30 days of life and adverse events contributing to death and elucidate how adverse events can be used as a measure of quality and safety in end-of-life cancer careMethods: Retrospective cohort study of 247 deceased hospitalised cancer patients at three hospitals in Norway in 2012 and 2013. The Global Trigger Tool method were used to identify adverse events. We used Poisson regression and binary logistic regression to compare adverse events and association with use of anticancer treatment given during the last 30 days of life.Results: 30 % of deceased hospitalised cancer patients received some kind of anticancer treatment during the last 30 days of life, mainly systemic anticancer treatment. These patients had 62 % more adverse events compared to patients not being treated last 30 days, 39 vs. 24 adverse events per 1 000 patient days (p<0.001, OR 1.62 (1.23 – 2.15). They also had twice the odds of an adverse event contributing to death compared to patients without such treatment, 33 vs. 18 % (p=0.045, OR 1.85 (1.01 – 3.36)). Receiving follow up by specialist palliative care reduced the rate of AEs per 1 000 patient days in both groups by 29 % (p= 0.02, IRR 0.71, CI 95% 0.53 – 0.96).Conclusions: Anticancer treatment given during the last 30 days of life is associated with a significantly increased rate of adverse events and related mortality. Patients receiving specialist palliative care had significantly fewer adverse events, supporting recommendations of early integration of palliative care in a patient safety perspective.


2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 121-121 ◽  
Author(s):  
Kyle Whelan

121 Background: Longitudinal palliative care has demonstrated benefits for cancer patients, and the American Society for Clinical Oncology recommends that palliative care be used along with standard anti-cancer therapy at the diagnosis of serious disease. However, studies have shown that oncologists still often refer to palliative care within days of the end of life, or not at all. This indicates that oncologists face barriers, systems-based or self-imposed, to palliative care referral. This study aims to identify specific barriers that prevent oncologists from referring cancer patients to palliative care services. Methods: Barriers to referral were identified via a dual approach. A literature review was performed using a PubMed search of articles published since 2012, when the ASCO provisional opinion was issued. This was narrowed down to 27 articles that meaningfully commented on barriers that oncologists face in referring to palliative care. Additionally, a qualitative analysis of semi-structured interviews of five practicing oncologists was performed. Oncologists interviewed for the study practice in a cancer center affiliated with an academic tertiary hospital. Results: 20 distinct barriers to referral, both systems-based and at the individual provider level, were enumerated from the literature review and interview analysis. Conclusions: Oncologists face a wide range of specific barriers that prevent appropriate referral to palliative care, related both to the logistics of the healthcare system and to providers’ preconceptions about palliative care. A significant barrier at the oncologist level is a tendency to associate palliative care exclusively with the end of life, despite demonstrated benefits earlier in the course of disease.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Maria Wajid ◽  
Eslavath Rajkumar ◽  
J. Romate ◽  
Allen Joshua George ◽  
R. Lakshmi ◽  
...  

Abstract Background Palliative care has proven over time that it can help prolong life spans with the use of hospices. The literature reports that most patients with cancer are diagnosed in the later stages and since there is no cure, they will require palliative care at some point during their illness. However, most developing countries, including India, have failed to establish hospices; as a result, large numbers of cancer patients are still deprived of palliative care. To initiate better access to hospices, it is important to understand the benefits of the same. Therefore, the present study aims to explore the advantages of hospice care from the perspectives of advanced cancer patients living in hospice centres. Methods The present study uses the method of exploratory research. Using purposive sampling, 8 participants living in a hospice in Bengaluru, India were selected and semi-structured interviews were conducted to collect data from the patients. This data was analysed using thematic analysis. Any underlying patterns were determined to identify the evident themes that emerged from the data. Results After thematic analysis, 4 themes were identified, namely, pain management, altruism, a good death, and overall satisfaction. Within some themes, there were specific sub-themes that have been illustrated using direct quotes from the interviews. Conclusion The findings of this study suggest that hospice centres play an important role in helping patients to come out of the trauma during the advanced stages of cancer. A sense of relief can be given to the patient by implementing palliative care. This is possible by building more hospice centres in the country where all individuals, irrespective of their financial status, can opt for the service. Having palliative care will provide dignified death to the patients.


Author(s):  
Paige E. Sheridan ◽  
Wendi G. LeBrett ◽  
Daniel P. Triplett ◽  
Eric J. Roeland ◽  
Andrew R. Bruggeman ◽  
...  

Background: There is inconsistent evidence that palliative care intervention decreases total healthcare expenditure at end-of-life for oncology patients. This inconsistent evidence may result from small sample sizes at single institution studies and disparate characterization of costs across studies. Comprehensive studies in population-based datasets are needed to fully understand the impact of palliative care on total healthcare costs. This study analyzed the impact of palliative care on total healthcare costs in a nationally representative sample of advanced cancer patients. Methods: We conducted a matched cohort study among Medicare patients with metastatic lung, colorectal, breast and prostate cancers. We matched patients who received a palliative care consultation to similar patients who did not receive a palliative care consultation on factors related to both the receipt of palliative care and end of life costs. We compared direct costs between matched patients to determine the per-patient economic impact of a palliative care consultation. Results: Patients who received a palliative care consultation experienced an average per patient cost of $5,834 compared to $7,784 for usual care patients (25% decrease; p < 0.0001). Palliative care consultation within 7 days of death decreased healthcare costs by $451, while palliative care consultation more than 4 weeks from death decreased costs by $4,643. Conclusion: This study demonstrates that palliative care has the capacity to substantially reduce healthcare expenditure among advanced cancer patients. Earlier palliative care consultation results in greater cost reductions than consultation in the last week of life.


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