Coping with uncertainty: A qualitative study of 33 palliative care consultations among patients with advanced cancer.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 92-92
Author(s):  
Mohamedtaki Abdulaziz Tejani ◽  
Charles Stewart Kamen ◽  
Supriya Gupta Mohile ◽  
Robert E. Gramling
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Descriptive Analysis ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Patient Centered ◽  
The Future ◽  
Research Working Group

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.

scholarly journals Shifting Palliative Care Paradigm in Primary Care From Better Death to Better End-of-Life : A Swiss Pilot Study

2021 ◽  
Author(s):  
Johanna Sommer ◽  
Christopher Chung ◽  
Dagmar M. Haller ◽  
Sophie Pautex
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Palliative Care ◽  
Pilot Study ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Communication Skills ◽  
Advanced Cancer Patients

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

An early palliative care intervention can be confronting but reassuring: A qualitative study on the experiences of patients with advanced cancer

2019 ◽  
Vol 33 (7) ◽  
pp. 783-792 ◽  
Author(s):  
Monica Fliedner ◽  
Sofia Zambrano ◽  
Jos MGA Schols ◽  
Marie Bakitas ◽  
Christa Lohrmann ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advanced Cancer Patients ◽  
End Of Life Decisions ◽  
Early Palliative Care ◽  
Network Support ◽  
Care Intervention ◽  
Life Decisions

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.

The ESCAPADE Study: Early supportive care for advanced cancer patients, assessing care delivery and provider engagement.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23142-e23142
Author(s):  
Oren Hannun Levine ◽  
Daryl Bainbridge ◽  
Gregory Russell Pond ◽  
Marissa Slaven ◽  
Sukhbinder K. Dhesy-Thind ◽  
...  
Keyword(s):  
Palliative Care ◽  
Disease Management ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Healthcare Providers ◽  
Primary Care Providers ◽  
Newly Diagnosed ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Gi Cancer

e23142 Background: Advanced cancer patients benefit from early integration of palliative care (EIPC) with usual care. A proposed model of EIPC reserves specialized palliative care (SPC) for complex patients, while primary care providers (PCP) and oncologists oversee basic palliative care (PC). We studied the attitudes among patients and their healthcare providers regarding delivery of EIPC. Methods: A cross-sectional study at a tertiary cancer centre in Ontario. Patients with newly diagnosed incurable gastrointestinal (GI) cancer were surveyed using a study specific instrument for the outcomes of interest: importance of and preferences for accessing support across 8 domains of PC (disease management, physical, psychological, social, spiritual, practical, end of life care, loss and grief). Healthcare providers within the circle of care completed a parallel survey for each recruited patient. Primary analysis involved use of descriptive statistics to summarize survey results and concordance between patient and provider responses. Results: From Oct 2017 - Nov 2018, 67 patients were surveyed (median age 69, 34% female). 90% had an identified medical oncologist, and 19% had SPC. 97% had a PCP, but only 42% listed a PCP as part of the care team. Median time from first oncology assessment for advanced cancer to patient survey completion was 52.5 days. 85 providers responded (oncologist = 59, PCP = 20, SPC = 6; response rate 92%; 1-3 physician responses per patient). Disease management and physical concerns were most important to patients. In these domains, 67% and 81% of patients endorsed receiving care from the preferred provider, but concordance between patient and physician responses regarding most responsible provider was only 58% and 38%. For all other domains, 87 – 100% of patients attributed primary responsibility to self or family rather than any healthcare provider. Conclusions: Respondents did not assign responsibility to physicians early in the disease trajectory for many domains of PC. Our findings suggest that incorporating patient activation and empowerment into EIPC requires further study. PCPs appeared to have limited involvement in PC for newly diagnosed advanced GI cancer patients.

scholarly journals Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

2018 ◽  
Vol 32 (8) ◽  
pp. 1410-1418 ◽  
Author(s):  
Ingebrigt Røen ◽  
Hans Stifoss-Hanssen ◽  
Gunn Grande ◽  
Anne-Tove Brenne ◽  
Stein Kaasa ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Support Needs ◽  
Care Providers ◽  
Family Carers ◽  
Advanced Cancer Patients ◽  
Qualitative Interview Study

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

Cost Savings Associated With Palliative Care Among Older Adults With Advanced Cancer

2021 ◽  
pp. 104990912098680
Author(s):  
Paige E. Sheridan ◽  
Wendi G. LeBrett ◽  
Daniel P. Triplett ◽  
Eric J. Roeland ◽  
Andrew R. Bruggeman ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Healthcare Costs ◽  
Healthcare Expenditure ◽  
Advanced Cancer Patients ◽  
Palliative Care Consultation ◽  
Care Consultation ◽  
The Impact

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.

End-of-life discussions with advanced cancer patients and their effects on bereaved families’ mental health.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 3-3
Author(s):  
Takashi Yamaguchi ◽  
Isseki Maeda ◽  
Yutaka Hatano ◽  
Masanori Mori ◽  
Yasuo Shima ◽  
...  
Keyword(s):  
Mental Health ◽  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Complicated Grief ◽  
Advanced Cancer Patients ◽  
Palliative Care Teams ◽  
Prevalence Of Depression

3 Background: End-of-life (EOL) discussions are important for providing appropriate care to patients with advanced cancer at the end of their life. To explore the relationship between EOL discussions and bereaved families’ mental health, as well as the quality of the patient’s death and quality of care at the end of life. Methods: This was a nationwide questionnaire survey of bereaved families of deceased cancer patients who died at 75 sites (20 inpatient palliative care teams in acute hospitals, 33 palliative care units/inpatient hospices, and 22 outpatient clinics that provide home palliative care service) in Japan. 13,711 bereaved family members of cancer patients who died before January 2014 in each of the participating institutions were potential participants. We evaluated the prevalence and details of EOL discussions which were defined as “a discussion with physicians about the preferred place of death or resuscitation”. We also evaluated the prevalence of depression (defined as the Patient Health Questionnaire-9 ≥ 10) and complicated grief (defined as the Brief Grief Questionnaire ≥ 8) in bereaved families. Results: 9123 questionnaires returned (response rate 67%). Of those, 80.6% had EOL discussions. After propensity score weighted adjustment, bereaved families with EOL discussion less frequently developed depression (17.3% and 21.6% ; P < 0.001) and complicated grief (13.7% and 15.9% ; P = 0.03) than without. There were significant differences in the trend test among families without and in those with EOL discussions < 1, 1–3, and > 3 months before the patient’s death, for the prevalence of depression (21.6%, 20.6%, 16.8%, and 15.5%, respectively; P trend < 0.001) and complicated grief (15.9%, 16.4%, 12.8%, and 12.9%, respectively; P trend < 0.001). Conclusions: EOL discussions may contribute to decrease depression and complicated grief in bereaved families. EOL discussions should be initiated with advanced cancer patients when physicians expect a patient’s prognosis is limited to several months.

Questions prompt lists used by palliative care teams help trigger discussions on prognosis and end-of-life issues with advanced cancer patients.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 12110-12110
Author(s):  
Carole Bouleuc ◽  
Alexis Burnod ◽  
Paul H. Cottu ◽  
Jean-Yves Pierga ◽  
Sylvie Dolbeault
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
P Value ◽  
Advanced Cancer Patients ◽  
Palliative Care Consultation ◽  
Palliative Care Teams ◽  
Life Issues ◽  
End Of Life Issues

12110 Background: Accuracy of prognosis perception is a key element to allow advanced cancer patients to make informed decisions and to reflect on their end-of-life priorities. This study aims to explore whether a question prompt list can promote discussions on prognosis and end-of-life issues during palliative care consultations for advanced cancer patients. Methods: In this multicentric randomised study, patients assigned in the interventional arm receive a question prompt list during the first palliative care consultation (T1) after referral by oncologists. The primary endpoint is the number of questions asked by patients during the second palliative care consultation (T2) one month later. Secondary objectives are anxiety and depression, quality-of-life, satisfaction with care, coping assessed at baseline (T1) and at two months (T3). Palliative care teams from 3 french comprehensive cancer centers participate in the study. Main inclusion criteria were adult patients with metastatic non-haematological cancer referred to the palliative care team and with an estimated life expectancy less than one year. Results: Patients (n = 71) in the QPL arm asked more questions (mean 21.8 versus 18.2, p-value = 0.03) during the palliative care consultations compared to patients in the control arm (n = 71). These questions addressed palliative care (mean 5.6 versus 3.7, p-value = 0.012) and end-of-life issues (mean 2.2 versus 1, p = 0.018) more frequently than in the control arm. At two months, compared to baseline, there was no change in anxio-depressive symptoms or quality of life. Conclusions: QPL favours discussion on prognosis and end-of-life care during the palliative care consultations for advanced cancer patients. Clinical trial information: NCT02854293 .

One Thousand Lives

2021 ◽  
pp. 31-44
Author(s):  
Gary Rodin ◽  
Sarah Hales
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Psychosocial Interventions ◽  
Psychosocial Oncology ◽  
Advanced Cancer Patients ◽  
Will To Live

This chapter provides an overview of the foundational contributions of early leaders in psychosocial oncology and palliative care that informed the development of the Managing Cancer and Living Meaningfully (CALM) intervention. This includes the collective works of such pioneers as Kübler-Ross, Glaser and Strauss, and Pattison, which were instrumental in the development of psychosocial interventions such as CALM. The research conducted by our team with advanced cancer patients and their families over two decades is also described, highlighting the longitudinal Will to Live Study. In that study over 700 patients with advanced cancer were assessed at baseline and over 400 were followed longitudinally until the end of life, deepening our understanding of their experience over the trajectory of this disease. The findings of this research confirmed the need for an intervention such as CALM and helped to shape its nature and form.

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