scholarly journals Timing and nature of palliative care discussions are patient-specific according to clinicians: a qualitative study

2019 ◽  
Author(s):  
Nuno Tavares ◽  
Tom Wilkinson ◽  
Nikki Jarrett ◽  
Katherine Hunt
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Complex Disease ◽  
Qualitative Interviews ◽  
Direct Care ◽  
Patient Specific ◽  
Chronic Obstructive ◽  
Usual Practice ◽  
Disease Trajectory ◽  
Future Care

Background: Chronic obstructive pulmonary disease (COPD) is associated with an unpredictable and complex disease trajectory. Consequently, most patients are not involved in advance care planning and do not receive palliative care until the end of life. Aim: To explore clinicians experiences, opinions and recommendations for the timing and nature of palliative care discussions in COPD. Design: Qualitative interviews with nurses and doctors that provide direct care to COPD patients. Setting/Participants: 14 clinicians working across primary and secondary care in the UK were interviewed. Results: Participants suggested that those with the appropriate expertise and an established relationship with patients were best placed to initiate discussions about palliative and future care. Early, gradual and informed palliative and future care discussions were considered best practice, however they uncommon occurrence due to service, patient and clinician-related barriers. The unpredictable disease trajectory and fine balance between providing acute care and discussing palliative care options were suggested as key greatest barriers for discussions. However, damaging patient hope was a concern for clinicians and reduced their inclination to discuss palliative care. Clinicians did not seem to think that patients were ready for discussions, therefore they avoided broaching the subject leading early in the disease trajectory. Conclusion: Stand-alone conversations about and near the end of life was described as current usual practice by clinicians, however individualised early, regular and gradual discussions with patients about immediate and long-term future plans may make such discussions feel less negative and ordinary for patients and clinicians.

scholarly journals Caring precariously: An interpretive description of palliative care and welfare worker perspectives on end of life carers navigating social welfare

2020 ◽  
pp. 026921632096649
Author(s):  
Kristin Bindley ◽  
Joanne Lewis ◽  
Joanne Travaglia ◽  
Michelle DiGiacomo
Keyword(s):  
Palliative Care ◽  
Social Welfare ◽  
End Of Life ◽  
Financial Burden ◽  
Qualitative Interviews ◽  
Housing Assistance ◽  
Structural Determinants ◽  
Psychosocial Sequelae ◽  
Framework Approach ◽  
Informal Carers

Background: Caring at end-of-life is associated with financial burden, economic disadvantage, and psychosocial sequelae. Health and social welfare systems play a significant role in coordinating practical resources and support in this context. However, little is known about social policy and interactions with public institutions that shape experiences of informal carers with social welfare needs at end-of-life. Aim: To explore ways in which palliative care and welfare sector workers perceive and approach experiences and needs of the carers of people with life-limiting illnesses who receive government income support or housing assistance, in an area of recognised socioeconomic disadvantage. Design: An interpretive descriptive study employed in-depth, qualitative interviews to explore participants’ reflections on working with carers of someone with a life-limiting illness. Data were analysed using the framework approach. Setting/participants: Twenty-one workers employed within three public services in Western Sydney were recruited. Results: Workers articulated understandings of welfare policy and its consequences for carers at end-of-life, including precariousness in relation to financial and housing circumstances. Identified resources and barriers to the navigation of social welfare needs by carers were categorised as personal, interpersonal and structural. Conclusions: Caring at end-of-life while navigating welfare needs was seen to be associated with precariousness by participants, particularly for carers positioned in vulnerable social locations. Findings highlighted experiences of burdensome system navigation, inconsistent processes and inequity. Further exploration of structural determinants of experience is needed, including aspects of palliative care and welfare practice and investment in inter-agency infrastructure for supporting carers at end-of-life.

scholarly journals Improving End-of-Life Care: Palliative Care Embedded in an Oncology Clinic Specializing in Targeted and Immune-Based Therapies

2017 ◽  
Vol 13 (9) ◽  
pp. e729-e737 ◽  
Author(s):  
David J. Einstein ◽  
Susan DeSanto-Madeya ◽  
Matthew Gregas ◽  
Jessica Lynch ◽  
David F. McDermott ◽  
...  
Keyword(s):  
Palliative Care ◽  
Usual Care ◽  
End Of Life ◽  
Odds Ratio ◽  
Care Clinic ◽  
Usual Practice ◽  
Embedded Model ◽  
Enrollment Rates ◽  
Oncology Practice ◽  
The Impact

Purpose: Patients with advanced cancer benefit from early involvement of palliative care. The ideal method of palliative care integration remains to be determined, as does its effectiveness for patients treated with targeted and immune-based therapies. Materials and Methods: We studied the impact of an embedded palliative care team that saw patients in an academic oncology clinic specializing in targeted and immune-based therapies. Patients seen on a specific day accessed the embedded model, on the basis of automatic criteria; patients seen other days could be referred to a separate palliative care clinic (usual care). We abstracted data from the medical records of 114 patients who died during the 3 years after this model’s implementation. Results: Compared with usual care (n = 88), patients with access to the embedded model (n = 26) encountered palliative care as outpatients more often ( P = .003) and earlier (mean, 231 v 109 days before death; P < .001). Hospice enrollment rates were similar ( P = .303), but duration was doubled (mean, 57 v 25 days; P = .006), and enrollment > 7 days before death—a core Quality Oncology Practice Initiative metric—was higher in the embedded model (odds ratio, 5.60; P = .034). Place of death ( P = .505) and end-of-life chemotherapy (odds ratio, 0.361; P = .204) did not differ between the two arms. Conclusion: A model of embedded and automatically triggered palliative care among patients treated exclusively with targeted and immune-based therapies was associated with significant improvements in use and timing of palliative care and hospice, compared with usual practice.

Happiness at the End of Life: A Qualitative Study

2020 ◽  
pp. 104990912093985
Author(s):  
Anne O’Callaghan ◽  
Ben Bickford ◽  
Conor Rea ◽  
Antonio Fernando ◽  
Phillipa Malpas
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Hospice Care ◽  
Qualitative Interviews ◽  
Well Being ◽  
Natural World ◽  
The Internet ◽  
Present Moment ◽  
Hospice Patients ◽  
Health And Well Being

Background: Happiness is a core ingredient of health and well-being, yet relatively little is known about what happiness means for individuals near the end of life, and whether perceptions of happiness change as individuals approach the end of their lives. Aim: The aim of this study was to explore, through interviews, how individuals experiencing hospice care understood and conceptualized happiness. Design: Qualitative interviews with hospice patients were analyzed thematically. Setting/Participants: Adult patients (n = 20) in a New Zealand hospice who were receiving palliative care and who could give their informed consent were invited by hospice nurse coordinators to an interview. Results: Four themes emerged from analysis of the transcribed interviews. Participants defined happiness most frequently and in most depth in relation to connection with others. They identified being in the present moment, particularly in relation to nature, and that happiness had become less associated with money, status, or possessions. They had an attitude of determination to focus on what mattered now. Conclusion: Patients receiving palliative care were generally happy with their lives, appreciated the simpler aspects of life away from the material. There was a common exhortation to young people to avoid focusing too much on acquisition and the internet and to prioritize instead social connection and engagement with the natural world.

scholarly journals Ambulance staff and end-of-life hospital admissions: A qualitative interview study

2018 ◽  
Vol 32 (9) ◽  
pp. 1465-1473 ◽  
Author(s):  
Sarah Hoare ◽  
Michael P Kelly ◽  
Larissa Prothero ◽  
Stephen Barclay
Keyword(s):  
End Of Life ◽  
Hospital Admissions ◽  
Qualitative Interviews ◽  
Chronic Obstructive ◽  
Obstructive Pulmonary Disease ◽  
Policy Problem ◽  
Dying Patients ◽  
Qualitative Interview Study ◽  
At Home

Background: Hospital admissions for end-of-life patients, particularly those who die shortly after being admitted, are recognised to be an international policy problem. How patients come to be transferred to hospital for care, and the central role of decisions made by ambulance staff in facilitating transfer, are under-explored. Aim: To understand the role of ambulance staff in the admission to hospital of patients close to the end of life. Design: Qualitative interviews, using particular patient cases as a basis for discussion, analysed thematically. Participants/setting: Ambulance staff ( n = 6) and other healthcare staff (total staff n = 30), involved in the transfer of patients (the case-patients) aged more than 65 years to a large English hospital who died within 3 days of admission with either cancer, chronic obstructive pulmonary disease or dementia. Results: Ambulance interviewees were broadly positive about enabling people to die at home, provided they could be sure that they would not benefit from treatment available in hospital. Barriers for non-conveyance included difficulties arranging care particularly out-of-hours, limited available patient information and service emphasis on emergency care. Conclusion: Ambulance interviewees fulfilled an important role in the admission of end-of-life patients to hospital, frequently having to decide whether to leave a patient at home or to instigate transfer to hospital. Their difficulty in facilitating non-hospital care at the end of life challenges the negative view of near end-of-life hospital admissions as failures. Hospital provision was sought for dying patients in need of care which was inaccessible in the community.

Does Time for (in)Direct Nursing Care Activities at the End of Life for Patients With or Without Specialized Palliative Care in a University Hospital Differ? A Retrospective Analysis

2020 ◽  
Vol 37 (10) ◽  
pp. 844-852
Author(s):  
Monica C. Fliedner ◽  
Monika Hagemann ◽  
Steffen Eychmüller ◽  
Cynthia King ◽  
Christa Lohrmann ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Nursing Care ◽  
Direct Care ◽  
University Hospital ◽  
Before And After ◽  
Indirect Care ◽  
Specialized Palliative Care ◽  
Eol Care ◽  
Insight Into

Background: Nurses’ end of life (EoL) care focuses on direct (eg, physical) and indirect (e,g, coordination) care. Little is known about how much time nurses actually devote to these activities and if activities change due to support by specialized palliative care (SPC) in hospitalized patients. Aims: (1) Comparing care time for EoL patients receiving SPC to usual palliative care (UPC);(2) Comparing time spent for direct/indirect care in the SPC group before and after SPC. Methods: Retrospective observational study; nursing care time for EoL patients based on tacs® data using nonparametric and parametric tests. The Swiss data method tacs measures (in)direct nursing care time for monitoring and cost analyses. Results: Analysis of tacs® data (UPC, n = 642; SPC, n = 104) during hospitalization before death in 2015. Overall, SPC patients had higher tacs® than UPC patients by 40 direct (95% confidence interval [CI]: 5.7-75, P = .023) and 14 indirect tacs® (95% CI: 6.0-23, P < .001). No difference for tacs® by day, as SPC patients were treated for a longer time (mean number of days 7.2 vs 16, P < .001).Subanalysis for SPC patients showed increased direct care time on the day of and after SPC ( P < .001), whereas indirect care time increased only on the day of SPC. Conclusions: This study gives insight into nurses’ time for (in)direct care activities with/without SPC before death. The higher (in)direct nursing care time in SPC patients compared to UPC may reflect higher complexity. Consensus-based measurements to monitor nurses’ care activities may be helpful for benchmarking or reimbursement analysis.

Estimating needs in life threatening illness: a feasibility study to assess the views of patients and doctors

2006 ◽  
Vol 20 (3) ◽  
pp. 205-210 ◽  
Author(s):  
Shamsul Shah ◽  
Martin Blanchard ◽  
Adrian Tookman ◽  
Louise Jones ◽  
Robert Blizard ◽  
...  
Keyword(s):  
Palliative Care ◽  
Health Status ◽  
Life Expectancy ◽  
Supportive Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Feasibility Study ◽  
Chronic Obstructive ◽  
Care Needs ◽  
Obstructive Pulmonary Disease

Background: Provision of palliative care for patients with non-cancer conditions is hindered by the difficulty of predicting when people will die and fear of causing distress by raising end-of-life issues. Objectives: To compare patients’ and professionals’ (1) estimations of prognosis; (2) perceptions of the seriousness of the illness and needs for supportive care; and (3) acceptability of this sensitive research, in end-stage cancer and non-cancer diseases. Design: Prospective cohort study. Setting: A teaching hospital and a Marie Curie hospice in London. Subjects: Twenty patients with advanced non-malignant disease (heart failure, chronic obstructive pulmonary disease and renal failure) and 20 patients with advanced cancer, and their physicians in charge. Method: A feasibility study using vignettes to aid patients and doctors estimate of prognoses. Main outcome measures were (1) patients’ and physicians’ estimates of health status, care needs and prognosis; and (2) patient survival. Results: Patients were willing and able to estimate their own life expectancy and cancer patients correctly estimated that they had a poorer prognosis than non-cancer patients. Non-cancer patients perceived that they had similar needs for supportive care as cancer patients. Physicians made little distinction in palliative care needs between patients with and without cancer, but tended to make more pessimistic estimates of prognosis in non-cancer patients. Conclusions: Patients are able to judge their health status and life expectancy and do not object to questions about end-of-life care. Cancer and non-cancer patients have similar needs for supportive care. We need further evidence on the value of self-rated prognosis and how to provide palliative and supportive care for all patients who are near death.

scholarly journals “We don’t want to sedate him” - A qualitative interview study on intentions when administering sedative drugs at the end of life in nursing homes and hospitals

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sophie Meesters ◽  
Bettina Grüne ◽  
Claudia Bausewein ◽  
Eva Schildmann
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
End Of Life ◽  
Side Effect ◽  
Healthcare Professionals ◽  
Qualitative Interviews ◽  
Qualitative Interview Study ◽  
The Family ◽  
Framework Approach ◽  
Sedative Drugs

Abstract Background Previous data indicate major differences between countries and settings regarding the intention when administering sedative drugs at the end of life and the perception, which drugs are sedating. Therefore, we aimed to explore the concept of ‘sedative drugs’ and the intentions of German healthcare professionals in general palliative care when administering sedative drugs at the end of life. Methods Semi-structured qualitative interviews with physicians and nurses (n = 49). Recruitment took place via contact persons in five hospital departments (haematology/oncology (n = 2), neurology, geriatrics, gynaecology) and five nursing homes. We thematically analysed the transcripts by the Framework approach, using MAXQDA version 2018.2. Results Most interviewees referred to benzodiazepines, opioids, and antipsychotics. Some subsumed all into sedative drugs, others differentiated between sedative drugs, anxiolytics, and analgesics. In explaining their intention, interviewees particularly emphasized what they want to avoid when administering sedative drugs. We identified three main themes regarding (excluded) intentions: (1) use of sedative drugs to relieve the patient’s suffering with reduction of consciousness as side effect, (2) use of sedative drugs to relieve the situation for the team and/or the family, (3) distinction between intention and expectation regarding hastening death. Interviewees often equated the term ‘sedation’ with inducing a state of unconsciousness, which should be avoided. Conclusion German healthcare professionals in general palliative care seem to negatively connote the term ‘sedation’. Moreover, they see themselves in a more passive role by accepting a side effect rather than performing an intentional act. Critical reflection of indications and intentions in accordance with respective guidelines is needed.

ID-PALL: An Instrument to Help You Identify Patients in Need of Palliative Care

Praxis ◽  
2021 ◽  
Vol 110 (15) ◽  
pp. 839-844 ◽  
Author(s):  
Fabienne Teike Lüthi ◽  
Mathieu Bernard ◽  
Claudia Gamondi ◽  
Anne-Sylvie Ramelet ◽  
Gian Domenico Borasio
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Practice ◽  
End Of Life ◽  
Disease Trajectory ◽  
Care Project ◽  
The Right ◽  
Identification Phase

Abstract. Palliative care is frequently associated with the end of life and cancer. However, other patients may need palliative care, and this need may be present earlier in the disease trajectory. It is therefore essential to identify at the right time patients who need palliative care and to distinguish between those in need of general palliative care and those for whom a referral to specialists is required. ID-PALL has been developed as an instrument to support professionals in this identification and to discuss a suitable palliative care project, in order to maintain the best quality of life for patients and their relatives. Recommendations for clinical practice are also proposed to guide professionals after the identification phase.

Recording patient preferences for end-of-life care as an incentivized quality indicator: What do general practice staff think?

2011 ◽  
Vol 26 (4) ◽  
pp. 336-341 ◽  
Author(s):  
Kerin L Hannon ◽  
Helen E Lester ◽  
Stephen M Campbell
Keyword(s):  
Palliative Care ◽  
General Practice ◽  
End Of Life ◽  
End Of Life Care ◽  
Population Level ◽  
Patient Specific ◽  
Life Care ◽  
Single Issue ◽  
Practice Staff ◽  
To Receive

Introduction: Since April 2009, indicators for the UK Quality and Outcomes Framework pilot have been developed and piloted across a nationally representative sample of practices. In October 2009 a single palliative care indicator was piloted for 6 months that looked at, ‘ the percentage of patients on the palliative care register who have a preferred place to receive end-of-life care documented in the records’. Aim: The aim of this study was to gain the views and experiences of general practice staff on whether the inclusion of a single incentivized indicator to record the preferred place to receive end-of-life care would improve the quality of palliative care. Any issues arising from its implementation in a pay-for-performance scheme were also explored. Methods: Interviews took place with 57 members of staff in 24 practices: 21 GPs, 16 practice managers, 12 nurses and eight others (mostly information technology experts). Results: The indicator was not deemed appropriate for incentivization due to concerns about incentivizing an isolated, single issue within a multi-faceted, multi-disciplinary and complex topic. Palliative care was seen to be too sensitive and patient specific to be amenable to population-level quality measurement. In implementation, the indicator would pose potential harm to patients who may be asked about their end-of-life care at an inappropriate time and by a member of staff who may not be best placed to address this sensitive topic. Conclusions: The most appropriate time to ask a patient about end-of-life care is subjective and patient specific and therefore does not lend itself to an inflexible single indicator. Focusing on one isolated question simplifies and distracts from a multi-faceted and complex issue and may lead to patient harm.

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