scholarly journals Physicians’ views on the usefulness and feasibility of identifying and disclosing patients’ last phase of life: a focus group study

2021 ◽  
pp. bmjspcare-2020-002764
Author(s):  
Catherine Owusuaa ◽  
Irene van Beelen ◽  
Agnes van der Heide ◽  
Carin C D van der Rijt

ObjectivesAccurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced cancer or advanced organ failure. Several palliative care quality standards recommend the surprise question (SQ) to identify those patients. Little is known about physicians’ views on identifying and disclosing the last phase of life of patients with different illness trajectories.MethodsData from two focus groups were analysed using thematic analysis with a phenomenological approach.ResultsFifteen medical specialists and general practitioners participated. Participants thought prediction of patients’ last phase of life, i.e. expected death within 1 year, is important. They seemed to find that prediction is more difficult in patients with advanced organ failure compared with cancer. The SQ was considered a useful prognostic tool; its use is facilitated by its simplicity but hampered by its subjective character. The medical specialist was considered mainly responsible for prognosticating and gradually disclosing the last phase. Participants’ reluctance to such disclosure was related to uncertainty around prognostication, concerns about depriving patients of hope, affecting the physician–patient relationship, or a lack of time or availability of palliative care services.ConclusionsPhysicians consider the assessment of patients’ last phase of life important and support use of the SQ in patients with different illness trajectories. However, barriers in disclosing expected death are prognostic uncertainty, possible deprivation of hope, physician–patient relationship, and lack of time or palliative care services. Future studies should examine patients’ preferences for those discussions.

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 384-384
Author(s):  
Vinay B Rao ◽  
Emmanuelle Belanger ◽  
Pamela C Egan ◽  
Thomas W. LeBlanc ◽  
Adam J Olszewski

Background: Patients with hematologic malignancies often receive aggressive care at the end of life (EOL), leading to lower quality of life. Access to early palliative care may improve EOL care outcomes, its benefits are less well established in hematologic malignancies than in solid tumors. We sought to describe the use of palliative care services among Medicare beneficiaries with hematologic malignancies, and associated EOL quality measures. Methods: Using the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare registry, we studied fee-for-service Medicare beneficiaries diagnosed with acute or chronic leukemias, lymphomas, myeloma, myelodysplastic syndrome, or myeloproliferative neoplasms, who died in 2001-2015. We described trends in the use of billed palliative care services (BPCS, identified by codes in clinician encounter claims: ICD-9 V66.7 or ICD-10 Z51.5). Among patients surviving >30 days from diagnosis, we compared baseline characteristics and EOL care quality metrics for patients with and without "early" BPCS (defined as services initiated >30 days before death), as well as Medicare spending in the last 30 days of life. Multivariable models were fitted as appropriate according to outcome variable (robust Poisson, negative binomial, or log-gamma) and adjusting for hematologic malignancy histology, patients' age, sex, race, marital status, Medicaid co-insurance, comorbidity index and performance status indicator (calculated from claims within 1 year before death), and year of death. Results: Among the 139,191 decedents, median age at death was 82 years and 46.4% were women. The proportion with any BPCS was 5.2% overall during the study period, and it increased from 0.4% in 2001 to 13.3% in 2015 (Fig. A). Median time from the first BPCS encounter to death was 10 days (interquartile range, 3 to 39), and it increased from 6 days in 2001 to 12 days in 2015. Most (84.3%) BPCS encounters occurred during hospital admissions (Fig. B), and this proportion did not significantly change over time. Although the number of BPCS claims increased over time for any specialty, there was a relative increase in claims billed by nurse practitioners (from 7.9% in 2001/05, to 29.7% in 2011/15) or palliative care specialists (from 0% to 15.6%, respectively). Use of early BPCS remained rare, but increased from 0.2% in 2001 to 4.3% in 2015. Overall, early BPCS constituted 28.5% of all first BPCS. A relatively higher proportion of early BPCS occurred in the ambulatory setting (15.0%). In the comparative cohort of patients who survived >30 days from diagnosis (N=120,741, Table), the use of early BPCS (1.7% overall) was more frequent in acute leukemia than in other histologies, adjusting for other factors. It was also significantly more frequent among Black patients, those with higher comorbidity indices or poor performance statuses, and those who received active chemotherapy at any point. Presence of early BPCS was associated with significantly improved EOL care quality metrics, including higher rates of hospice use, longer hospice length of stay, and lower use of aggressive measures, like repeated hospitalizations, admissions to the intensive care unit, and receipt of chemotherapy in the last 14 days of life (see Table). Early BPCS were also associated with significantly lower average Medicare spending in the last 30 days of life (marginal means $21,380 with and $23,651 without early BPCS, P<.001). Conclusion: Use of BPCS among Medicare beneficiaries with hematologic malignancies has increased steeply in recent years, but most encounters still occur within days of death in the inpatient setting. This pattern potentially limits the benefits that could be achieved for patients and their caregivers with earlier institution of palliative care. Early BPCS are associated with better EOL care quality metrics similar to those observed in solid tumors, but causation remains uncertain in retrospective claims data, especially given known underutilization of palliative care billing codes in non-terminal patients. Our results support the need for prospective trials of early palliative care for patients with hematologic malignancies, and for research about the barriers to early access to palliative care that may be specific to this patient population. Disclosures LeBlanc: Pfizer Inc: Consultancy; Heron: Membership on an entity's Board of Directors or advisory committees; Daiichi-Sankyo: Membership on an entity's Board of Directors or advisory committees; CareVive: Consultancy; Agios: Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Medtronic: Membership on an entity's Board of Directors or advisory committees; Otsuka: Consultancy, Membership on an entity's Board of Directors or advisory committees; Helsinn: Consultancy; Astra Zeneca: Consultancy, Research Funding; Amgen: Membership on an entity's Board of Directors or advisory committees; AbbVie: Membership on an entity's Board of Directors or advisory committees; Seattle Genetics: Consultancy, Research Funding; American Cancer Society: Research Funding; Duke University: Research Funding; Jazz Pharmaceuticals: Research Funding; NINR/NIH: Research Funding; Flatiron: Consultancy; Celgene: Honoraria. Olszewski:Genentech: Research Funding; TG Therapeutics: Research Funding; Adaptive Biotechnologies: Research Funding; Spectrum Pharmaceuticals: Research Funding.


2017 ◽  
Vol 13 (9) ◽  
pp. e712-e720 ◽  
Author(s):  
Casey M. Hay ◽  
Carolyn Lefkowits ◽  
Megan Crowley-Matoka ◽  
Marie A. Bakitas ◽  
Leslie H. Clark ◽  
...  

Purpose: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusion: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.


2020 ◽  
Author(s):  
Catherine Owusuaa ◽  
Irene van Beelen ◽  
Agnes van der Heide ◽  
Carin C.D. van der Rijt

Abstract Background: Accurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced cancer or advanced organ failure. Several palliative care quality standards recommend the surprise question to identify those patients.Methods: Physicians’ views of identifying and disclosing the last phase of life and their experiences with using the surprise question for patients with advanced cancer or chronic obstructive pulmonary disease (COPD) were explored in a qualitative focus group study. Data were analyzed using thematic analysis.Results: Fifteen medical specialists and general practitioners participated in two focus groups. Themes discussed in the focus groups were: prediction and disclosure of the imminence of death. Participants thought prediction of imminent death, within one year, was important. The surprise question was considered a useful prognostic tool; its use is facilitated by its simplicity but hampered by its subjective character. The medical specialist was considered mainly responsible for prognosticating and gradual disclosing a patient’s imminent death. Physicians’ reluctance to disclose the imminence of death to a patient was related to the uncertainty around prognostication, concerns about depriving patients of hope or affecting the physician–patient relationship, or about a lack of time or of palliative care services. Conclusions: Physicians consider the assessment of patients’ imminent death important and support the use of the surprise question. However, they experience uncertainty and other barriers in disclosing imminent death. Future studies should examine patients’ preferences for those discussions. Trial registration: not applicable.


2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 258-258
Author(s):  
Victoria Zwicker ◽  
Sandy Buchman ◽  
Denise Marshall ◽  
Sara Urowitz

258 Background: A wait time indicator is being developed for outpatient palliative care services for cancer patients in Ontario. Once developed, this indicator will become the first palliative performance measure for Regional Cancer Centres (RCCs) across the province. The wait time indicator will serve as one measure of accessibility, a key dimension of health care quality. However, in order to create this indicator, it is first necessary to identify targets against which current performance can be compared. Methods: A systematic review of the academic literature was conducted to a) identify existing palliative care wait time standards, and b) to gather evidence on how delays in care impact patient outcomes. An environmental scan was also conducted to identify wait time standards and benchmarks used in other Canadian provinces or territories. In addition, existing palliative care triaging tools and wait time standards from Ontario RCCs were collected. A consensus panel comprised of palliative clinicians, patient and family advisors, and administrators was convened to articulate a maximum acceptable wait time and a provincial target for the percentage of patients who should be seen within the maximum acceptable wait time. Results: The environmental scan and literature review found no existing standards or benchmarks for outpatient palliative care services. However, there are a number of triaging tools and wait time standards in use at Ontario RCCs for these services. Taking these tools and standards into consideration, the consensus panel identified a wait time benchmark and a provincial target for Ontario RCCs. Conclusions: This foundational work will help to highlight gaps and variation in timely access to palliative care services in Ontario. The benchmarks and targets identified through this process as well as the methods used can be useful for other jurisdictions seeking to measure and improve wait times for these services. Next steps include ensuring that data is of sufficient quality, identifying incremental improvement targets for the province based on current performance, and further refining the implementation of a palliative care wait time indicator for quality improvement.


2021 ◽  
Author(s):  
Catherine Walshe ◽  
Ian Garner ◽  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Andy Bradshaw ◽  
...  

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. Aims: To understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19. These were across a number of roles (from 458): direct patient/family facing support (58.7%), indirect support (e.g. driving) (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95%CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers and with policy changes preventing volunteers from supporting services. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Discussion and conclusion: Volunteers were mostly prevented from supporting many forms of palliative care, particularly in in-patient hospices, which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19


Author(s):  
Catherine Walshe ◽  
Ian Garner ◽  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Andy Bradshaw ◽  
...  

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95% CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Conclusion: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19.


2015 ◽  
Vol 5 (1) ◽  
Author(s):  
Peter Angerer ◽  
Matthias Weigl

Background: Physician jobs are associated with adverse psychosocial work conditions. We summarize research on the relationship of physicians' psychosocial work conditions and quality of care. Method: A systematic literature search was conducted in MEDLINE and PsycINFO. All studies were classified into three categories of care quality outcomes: Associations between physicians' psychosocial work conditions and (1) the physician-patient-relationship, or (2) the care process and outcomes, or (3) medical errors were examined. Results: 12 publications met the inclusion criteria. Most studies relied on observational cross-sectional and controlled intervention designs. All studies provide at least partial support for physicians’ psychosocial work conditions being related to quality of care. Conclusions: This review found preliminary evidence that detrimental physicians’ psychosocial work conditions adversely influence patient care quality. Future research needs to apply strong designs to disentangle the indirect and direct effects of adverse psychosocial work conditions on physicians as well as on quality of care. Keywords: psychosocial work conditions, physicians, quality of care, physician-patient-relationship, hospital, errors, review, work stress, clinicians


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