scholarly journals General practitioners’ perceptions of best practice care at the end of life: a qualitative study

BJGP Open ◽  
2019 ◽  
Vol 3 (3) ◽  
pp. bjgpopen19X101660 ◽  
Author(s):  
Anne Herrmann ◽  
Mariko Carey ◽  
Alison Zucca ◽  
Lucy Boyd ◽  
Bernadette Roberts
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Best Practice ◽  
Qualitative Content Analysis ◽  
Care Delivery ◽  
Natural Extension ◽  
Family Needs ◽  
Qualitative Interview Study ◽  
Wide Range ◽  
Practice Care

BackgroundGPs can play a central role in palliative care delivery. However, little is known about their views on what constitutes best practice care at the end of life.AimTo explore, in a sample of Australian GPs, their perceptions of best practice palliative care and their ideal role in its delivery.Design & settingA qualitative interview study of 25 GPs practising in metropolitan and non-metropolitan locations in New South Wales, Australia.MethodSemi-structured telephone interviews were conducted. Data were analysed using qualitative content analysis.ResultsParticipants had a mean age of 51 years, and had practised between 3 and 38 years (mean 19 years). Best practice palliative care was perceived to be proactive and responsive to a wide range of patient and family needs. Many participants indicated a need for relational continuity, which involves GPs establishing a care pathway from diagnosis to palliation, coordinating care across the pathway, and collaborating with other healthcare providers. A number of participants perceived palliative care as a natural extension of primary care and indicated that best practice palliative care mainly requires experiential knowledge and good communication skills, rather than specialised medical knowledge. Participants listed a number of communication strategies to offer patients and their families choice and ongoing negotiation about the recommended treatments.ConclusionThis study provides novel in-depth insights into GPs’ perceptions of best practice palliative care. Future research should further investigate the identified features of care, and whether they can maximise the outcomes of patients and their families.

scholarly journals Homecoming—Dignity Through Movement at the End of Life: A Qualitative Interview Study With Healthcare Professionals

2021 ◽  
pp. 104990912110178
Author(s):  
Fiona Cameron ◽  
Anna Janze ◽  
Anna Klarare
Keyword(s):  
Physical Activity ◽  
Palliative Care ◽  
Focus Group ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
Main Theme ◽  
Difficult Situation ◽  
Qualitative Interview Study ◽  
Wide Range

Aim: To describe healthcare professionals’ and volunteers’ experiences of a pathway for movement on a hospice ward. Method: This was a qualitative study with an inductive approach. Data were collected in a hospice setting through 4 focus group interviews with healthcare professionals and volunteers (n = 12). The focus group participants varied in age, profession, and length of experience in palliative care. The interviews were audio recorded, transcribed and analyzed with qualitative content analysis. Results: Dignity through movement at the end of life was the main theme, complemented by 4 sub-themes. Two descriptive sub-themes: “A practical tool to facilitate physical activity” and “Companionship and goals give meaning to the day,” and 2 interpretative sub-themes: “Regaining control and having a choice” and “Feeling normal and alive” based on participants’ views of patient experiences. Significance of Results: Indications are that the pathway for movement addresses a wide range of experiences related to different aspects of being human in a difficult situation. Experiences of movement and physical activity can promote wellbeing, dignity, and a sense of feeling “at home” for patients within hospice care. The pathway for movement is simple to set up, offers access to appropriate physical activity and seems to benefit patients both in the early and later phases of palliative care.

scholarly journals Examining public knowledge, attitudes and perceptions towards palliative care: a mixed method sequential study

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Sonja McIlfatrick ◽  
Paul Slater ◽  
Esther Beck ◽  
Olufikayo Bamidele ◽  
Sharon McCloskey ◽  
...  
Keyword(s):  
Public Health ◽  
Palliative Care ◽  
End Of Life ◽  
Current Knowledge ◽  
Care Delivery ◽  
Public Awareness ◽  
Public Understanding ◽  
Public Health Issue ◽  
Public Health Approach ◽  
Cross Sectional Survey

Abstract Background Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access. Methods An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis. Results A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents’ levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person’s ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience. Conclusions Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum

2019 ◽  
Vol 36 (1) ◽  
pp. 22-28 ◽  
Author(s):  
Meaghann S. Weaver ◽  
Rebecca Jenkins ◽  
Christopher Wichman ◽  
Jacob E. Robinson ◽  
Meghan R Potthoff ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Curriculum Design ◽  
Phase 1 ◽  
Pediatric Palliative Care ◽  
Family Needs ◽  
Team Members ◽  
Curricular Content ◽  
Home Based ◽  
Perception Of Support

Background: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. Objectives: To develop a pediatric palliative care curriculum for inpatient nurses and adult-trained hospice teams caring for children in a rural region. Methods: Curriculum design and delivery was informed by local culture through an interdisciplinary, iterative development approach with confidence, intention, and support measured pre-, post-, and 4 months after delivery. A needs assessment was completed by pediatric nurses caring for children receiving palliative or end-of-life care to inform curricular content (phase 1). A curriculum was designed by an interdisciplinary pediatric palliative care team and piloted with nursing cohorts annually through educational conferences with monthly discussion series for 3 consecutive years (phase 2). Curricular content was then provided for 31 rural hospice team members (phase 3). Results: Self-reported confidence in caring for children increased by 1.1/10 points for adult-trained hospice team members. Mean score for intention to care for children increased by 5.2 points (sustained 5.1 points above baseline at 4 months). Perception of support in caring for children increased by 5 points (mean sustained 5.4 points above baseline at 4 months). Family needs, care goals, and symptom management were prioritized learning topics. Rural hospices previously unwilling to accept children enrolled pediatric patients in the 4 months following the conference. Conclusion: Grassroots curricular initiatives and ongoing educational mentorship can grow pediatric palliative and hospice services in rural regions.

scholarly journals Spiritual care provided by nursing home physicians: a nationwide survey

2019 ◽  
Vol 10 (4) ◽  
pp. e42-e42 ◽  
Author(s):  
Marie-José H E Gijsberts ◽  
Jenny T van der Steen ◽  
Cees M P M Hertogh ◽  
Luc Deliens
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
End Of Life ◽  
Spiritual Care ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Elderly Care ◽  
Life Care ◽  
Additional Training ◽  
Broad Concept

ObjectiveTo examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors associated with spiritual care provision.MethodsA cross-sectional survey was sent to a representative sample of 642 elderly care physicians requesting information about their last patient who died and the spiritual care they provided. We compared their general perception of spiritual care with spiritual and other items abstracted from the literature and variables associated with the physicians’ provision of spiritual care. Self-reported reasons for providing spiritual care were analysed with qualitative content analysis.ResultsThe response rate was 47.2%. Almost half (48.4%) provided spiritual end-of-life care to the last resident they cared for. Half (51.8%) identified all 15 spiritual items, but 95.4% also included psychosocial items in their perception of spirituality and 49.1% included other items. Physicians who included more non-spiritual items reported more often that they provided spiritual care, as did more religious physicians and those with additional training in palliative care. Reasons for providing spiritual care included a request by the resident or the relatives, resident’s religiousness, fear of dying and involvement of a healthcare chaplain.ConclusionMost physicians perceived spirituality as a broad concept and this increased self-reported spiritual caregiving. Religious physicians and those trained in palliative care may experience fewer barriers to providing spiritual care. Additional training in reflecting upon the physician’s own perception of spirituality and training in multidisciplinary spiritual caregiving may contribute to the quality of end-of-life care for nursing home residents.

scholarly journals Palliative Care in High-Grade Glioma: A Review

2020 ◽  
Vol 10 (10) ◽  
pp. 723
Author(s):  
Rita C. Crooms ◽  
Nathan E. Goldstein ◽  
Eli L. Diamond ◽  
Barbara G. Vickrey
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Care Delivery ◽  
High Grade Glioma ◽  
Functional Independence ◽  
High Grade ◽  
Care Needs ◽  
Palliative Care Needs

High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.

Outpatient palliative care at a tertiary cancer center: Perceptions, pathways, and pitfalls.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 28-28
Author(s):  
Kavitha Ramchandran ◽  
Sandy Trieu ◽  
Stephanie Harman ◽  
Judy Passaglia ◽  
Janet Rodriguez ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Cancer Center ◽  
Care Planning ◽  
Life Care ◽  
Code Status ◽  
Wide Range ◽  
Advance Care

28 Background: To describe an outpatient palliative care program at a quaternary cancer center- Stanford Cancer Institute. Outpatient palliative care (PC) programs are still in their nascency. Best practices are still being developed and key performance metrics are being delineated. This is a description of Stanford Cancer Institute outpatient PC program. Methods: Observational study of the first six months of encounters to the outpatient PC program. Description of potential barriers to launch and growth, as well as description of resources required for continued success. Data evaluated included program volume, referral patterns, advance care planning, symptom assessment and team structure as collected by the clinical team. Results: Initial barriers to program initiation included lack of funding and infrastructure. Additional barriers included coordination between teams, flow of care (patients late for next appointments), and cultural perceptions of palliative care as equal to end of life care. There are 32 referring practitioners to the program. Over the first six months the outpatient PC program has seen growth with volume increasing from 10 consults per month to 26 consults per month for a total of 60 patients. At the time of initial consult, 11 of the 60 patients seen had an advance directive. Only 1 patient had a physician order for life sustaining treatment (POLST). Code status was documented in 21 of the 60 patients. Conclusions: Our program had multiple barriers to launch: perceptions that palliative care equaled end of life care, lack of infrastructure and funding, and difficulty with coordination between teams. With administrative support the program secured funding, developed infrastructure with the assistance of IT, Cancer Center administration, and Care Coordination. Consults now come from a wide range of providers. Based on preliminary data indicating a very low percentage of completion of these tasks by patients on initial consult there is need for outpatient palliative care for advance care planning. Future growth will include continued penetration of the cancer center, increasing volume of consults, and additional assessments of patient satisfaction, symptom improvement, and hospital utilization.

Evaluation of an NP-based model of palliative care delivery within an oncology clinic.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 163-163
Author(s):  
Sarah F. DAmbruoso ◽  
Neil Wenger ◽  
Anne Coscarelli ◽  
Sara A. Hurvitz ◽  
Christopher Pietras ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Language Processing ◽  
Best Practice ◽  
Psychosocial Support ◽  
Care Delivery ◽  
Care Quality ◽  
Full Time ◽  
Multiple Sources ◽  
Significant Difference

163 Background: We initiated a nurse practitioner (NP)-based model of palliative care delivery embedded within an oncology clinic guided by a shared mental model (SMM) between palliative care, oncology, and psychosocial oncology clinicians in order to foster best practice collaboration and closed-loop communication between teams. These data represent processes and outcomes three years after initial implementation of the program. Methods: We evaluated program growth as well as advance care planning, hospice use, and utilization in patients with advanced cancer seen by the palliative care NP compared to patients receiving usual care from March 2014 to March 2017 at University-based oncology clinics. We developed a palliative care quality improvement tool integrating administrative and clinical data from multiple sources, including the electronic health record (EHR) and external hospices, using progressive methods of pulling data, such as natural language processing, in order to identify patients with advanced cancer and key process and end of life utilization measures. We used chi square tests to compare care received by the two groups. Results: There was good adoption of the intervention. The number of participating oncologists increased from 2 to 5 and the palliative care NP shifted from part-time to full-time after the first 1.5 years of implementation. Patients enrolled in the NP-based model of palliative care delivery were more likely to have a documented goals of care conversation (74.6% v. 9%, p < 0.01), to be referred for additional psychosocial support (52.5% v. 30.9%, p < 0.01), and to complete physician orders for life sustaining treatment (POLST) (20.3% v. 4.5%, p < 0.01). There was no statistically significant difference in advance directive completion (28.8% v. 23.5%). Among decedents, patients enrolled in the NP-based model were more likely to be enrolled in hospice (50.5% v. 29.1%, p < 0.01). There were non-statistically significant trends toward less hospital (4.6 days v. 5.6 days) and ICU use (1.0 day vs. 1.3 days) in the last 30 days of life. Conclusions: An NP-model of palliative care delivery within an oncology clinic led to important improvements in key palliative care processes and outcomes.

scholarly journals A scoping review of initiatives to reduce inappropriate or non-beneficial hospital admission and bed days in people nearing the end of their life: Much innovation but limited supporting evidence

2020 ◽  
Author(s):  
Ros Taylor ◽  
Jonathan Ellis ◽  
Wei Gao ◽  
Liz Searle ◽  
Kate Heaps ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Hospital Admissions ◽  
Care Home ◽  
Supporting Evidence ◽  
Out Of Hours ◽  
Medical Need ◽  
Telephone Advice ◽  
Wide Range ◽  
Bed Days

Abstract Objectives Hospitalisation during the last weeks of life when there is no medical need or desire to be there is distressing and expensive. This study sought palliative care initiatives which may avoid or shorten hospital stay at the end of life and analysed their success in terms reducing bed days. Methods Part 1 included a search of literature in PubMed and Google Scholar between 2013 and 2018, an examination of governmental and organisational publications plus discussions with external and co-author experts regarding other sources. This initial sweep sought to identify and categorise relevant palliative care initiatives. In Part 2, we looked for publications providing data on hospital admissions and bed days for each category. Results A total of 1252 abstracts were reviewed, resulting in ten broad classes being identified. Further screening revealed 50 relevant publications describing a range of multi-component initiatives. Studies were generally small and retrospective. Most researchers claim their service delivered benefits. In descending frequency, benefits identified were support in the community, integrated care, out-of-hours telephone advice, care home education and telemedicine. Nurses and hospices were central to many initiatives. Barriers and factors underpinning success were rarely addressed. Conclusions A wide range of initiatives have been introduced to improve end-of-life experiences. Formal evidence supporting their effectiveness in reducing inappropriate/non-beneficial hospital bed days was generally limited or absent.

scholarly journals Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers’ experiences in metastatic melanoma

2020 ◽  
Vol 34 (10) ◽  
pp. 1351-1360 ◽  
Author(s):  
Jennifer A Fox ◽  
John Rosenberg ◽  
Stuart Ekberg ◽  
Danette Langbecker
Keyword(s):  
Palliative Care ◽  
Targeted Therapy ◽  
Qualitative Study ◽  
Metastatic Melanoma ◽  
End Of Life ◽  
Targeted Therapies ◽  
Treatment Options ◽  
Family Needs ◽  
Term Survival ◽  
Treatment Paradigm

Background: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood. Aim: To explore bereaved carers’ experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma. Design: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods. Setting/participants: Participants ( n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres. Results: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life. Conclusion: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively.

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