scholarly journals A novel care guide for personalised palliative care – a national initiative for improved quality of care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Dröfn Birgisdóttir ◽  
Anette Duarte ◽  
Anna Dahlman ◽  
Bengt Sallerfors ◽  
Birgit H. Rasmussen ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Care Needs ◽  
Comprehensive Overview ◽  
Pilot Studies ◽  
Early Palliative Care ◽  
The Family ◽  
Palliative Care Needs

Abstract Background Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide. Methods The Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings. Results After extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients’ needs and possibilities for ensuring optimal quality of life, the family included. Conclusions Based on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings – including implementation, patient and family outcomes, and experiences of patient, family and personnel.

Dying Fit or Not—Physical Activity as Antidote to Death?

2020 ◽  
pp. 003022282091371
Author(s):  
Hanne Bess Boelsbjerg ◽  
Stinne Glasdam
Keyword(s):  
Physical Activity ◽  
Health Care ◽  
Palliative Care ◽  
Field Study ◽  
Advanced Cancer ◽  
Health Care Professionals ◽  
Care Needs ◽  
Palliative Care Needs ◽  
Empirical Material

Physical activity has increasingly gained attention within palliative care. This article aims to explore how the idea of physical activity influences patients with advanced cancer and health-care professionals’ interactions. The empirical material was gathered as part of an anthropological field study about palliative care needs among 16 patients with advanced cancer, consisting of observations and interviews with patients, relatives, and professionals. Two of the patient cases were analyzed, inspired by Goffman’s theory, showing how patients and health-care professionals interact in relation to physical activity. The findings show that patients played roles either embracing physical activity or distancing it by postponement. Professionals played expert roles of duty and attachment, stressing the importance of physical activity. Thus, they accepted a minimum of physical activity when patients were close to death. Professionals regarded patients’ absence of physical activity as a lack of desire to live; patients regard it as a way to live.

Patients with acquired immunodeficiency syndrome

2015 ◽  
pp. 628-649
Author(s):  
Carl A. Kirton ◽  
Deborah Witt Sherman
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Care Needs ◽  
Acquired Immunodeficiency ◽  
Aggressive Care ◽  
Immunodeficiency Syndrome ◽  
Palliative Care Needs

This chapter provides an overview and update of the comprehensive care related to HIV/AIDS and addresses the palliative care needs of individuals and families living with and dying from this illness. With this information, nurses and other health-care professionals will gain the knowledge to provide effective and compassionate care, recognizing the need for both curative and aggressive care as well as supportive and palliative therapies to maximize the quality of life of patients and their family caregivers.

Paediatric pain control

2015 ◽  
Author(s):  
Renée McCulloch ◽  
John Collins
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Pain Control ◽  
Current Evidence ◽  
Care Needs ◽  
The Past ◽  
Dying Children ◽  
Poor Understanding ◽  
Palliative Care Needs

Our understanding regarding pain in children has grown significantly in the past few decades; however, we still find reluctance to acknowledge and treat pain in children. Many myths prevail, and coupled with poor understanding, can undermine the effective treatment of pain in children. Understandably many health-care professionals are apprehensive and fearful about working with very sick and dying children; perhaps there is a sense of failure for being unable to ‘cure’. However, as pain is one of the most common symptoms in this group of children, relieving pain and distress can be an extremely rewarding experience. This chapter outlines the background and principles of understanding, evaluating, and treating pain in children with palliative care needs. It offers an overview of current evidence and hopes to support health-care professionals working in this challenging discipline.

Referral practices of medical oncologists to palliative care for patients with metastatic non-small cell lung cancer (NSCLC).

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 108-108 ◽  
Author(s):  
Emily Feld ◽  
Leora Horn ◽  
Sharon E. Phillips
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Treatment Options ◽  
Care Needs ◽  
Early Palliative Care ◽  
Metastatic Nsclc ◽  
Medical Oncologists ◽  
Referral Practices ◽  
Palliative Care Needs

108 Background: Early implementation of palliative care has shown to improve quality of life and prolong survival in pts with metastatic NSCLC. We sought to investigate the attitudes and referral practices among medical oncologists treating pts with metastatic NSCLC. Methods: Participants were identified through the IASLC 2015 membership directory. All participants were contacted via email to complete an 18-question online survey that included demographic variables as well as questions on referral practice and attitudes regarding the role of palliative care in the treatment of metastatic NSCLC pts. Results: The response rate was 31% (93/303). The majority of participants (94%) practice in an academic setting and 57% had no prior palliative care training. 88% of oncologists report easy access to palliative care providers and 94% have an affiliated palliative care practice within their institution. 83% believe there is definitive evidence in the literature supporting the benefit of early palliative care; however, 40% feel this evidence supports only improved quality of life, not prolonged survival. 58% of oncologists agree that metastatic NSCLC pts should be referred to palliative care early in their disease course. In practice, however, they refer 19% of pts to palliative care at the time of first treatment initiation and this only increases to 38% when considering all referrals made when pts are actively receiving chemotherapy. Reasons for not referring pts include lack of symptoms (56%), belief that oncologists can manage palliative care needs independently (46%), not wanting to burden pts with appointments (41%), concern that referral may not be well received by pts (38%), and long wait times (20%). Reasons for referral include inadequately managed pain (97%), no further treatment options (70%), weak support network (71%), depression/anxiety (68%), other cancer-related symptoms (69%), dwindling treatment options (66%), and lack of time to address palliative care needs (58%). Conclusions: While most oncologists acknowledge the benefit of early palliative care consultation for metastatic NSCLC pts, a minority of pts are referred and strategies to improve referrals are needed.

Palliative Referrals in Advanced Cancer Patients: Utilizing the Supportive and Palliative Care Indicators Tool and Rothman Index

2021 ◽  
pp. 104990912110178
Author(s):  
Abigail Sy Chan ◽  
Amit Rout ◽  
Christopher R. D.’Adamo ◽  
Irina Lev ◽  
Amy Yu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Length Of Hospital Stay ◽  
Inpatient Setting ◽  
Advanced Cancer Patients ◽  
Care Needs ◽  
Early Palliative Care ◽  
Code Status ◽  
Palliative Care Needs

Background: Timely identification of palliative care needs can reduce hospitalizations and improve quality of life. The Supportive & Palliative Care Indicators Tool (SPICT) identifies patients with advanced medical conditions who may need special care planning. The Rothman Index (RI) detects patients at high risk of acutely decompensating in the inpatient setting. SPICT and RI among cancer patients were utilized in this study to evaluate their potential roles in palliative care referrals. Methods: Advanced cancer patients admitted to an institution in Baltimore, Maryland in 2019 were retrospectively reviewed. Patient demographics, length of hospital stay (LOS), palliative care referrals, RI scores, and SPICT scores were obtained. Patients were divided into SPICT positive or negative and RI > 60 or RI < 60.Unpaired t-tests and chi-square tests were utilized to determine the associations between SPICT and RI and early palliative care needs and mortality. Results: 227 patients were included, with a mean age of 68 years, 63% Black, 59% female, with the majority having lung and GI malignancies. Sixty percent were SPICT +, 21% had RI < 60. SPICT + patients were more likely to have RI < 60 (p = 0.001). SPICT + and RI < 60 patients were more likely to have longer LOS, change in code status, more palliative/hospice referrals, and increased mortality (p <0.05). Conclusions: SPICT and RI are valuable tools in predicting mortality and palliative/hospice care referrals. These can also be utilized to initiate early palliative and goals of care discussions in patients with advanced cancer.

scholarly journals Identifying Palliative Care Needs in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 788-788
Author(s):  
Daniel David ◽  
Abraham Brody ◽  
Tina Sadarangani ◽  
Bei Wu ◽  
Tara Cortez
Keyword(s):  
Palliative Care ◽  
Assisted Living ◽  
Unmet Needs ◽  
Care Needs ◽  
Code Status ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care ◽  
Palliative Care Needs

Abstract Many residents of Assisted Living (AL) confront serious illness and therefore might benefit from greater access to Palliative Care Services to improve quality of life. We surveyed resident records and AL nursing staff to identify patients in need of Palliative Care. Preliminary findings showed that nurses predicted 23% would not be alive and 49% would no longer live in AL. A majority of residents were over the age of 90, yet 30% did not have a reported code status. These findings suggest that a substantial portion of AL residents may have unmet needs with respect to palliative care. Future interventions are needed to support advance care planning conversations and make palliative care more accessible to this population.

Nursing patients with palliative care needs

2009 ◽  
pp. 861-884
Keyword(s):  
Palliative Care ◽  
Hospice Care ◽  
Psychological Symptoms ◽  
Symptom Control ◽  
Nausea And Vomiting ◽  
Care Needs ◽  
Appetite Loss ◽  
The Family ◽  
Control Pain ◽  
Palliative Care Needs

Principles of palliative care 862 Hospice care 863 Palliative care interventions 864 The importance of the family in palliative care 868 Symptom control: overview 870 Symptom control: pain 872 Symptom control: appetite loss 875 Symptom control: nausea and vomiting 876 Symptom control: psychological symptoms 878...

scholarly journals Quality of collaboration and information handovers in palliative care: a survey study on the perspectives of nurses in the Southwest Region of the Netherlands

2020 ◽  
Vol 30 (4) ◽  
pp. 720-727
Author(s):  
Marijanne Engel ◽  
Andrée van der Ark ◽  
Rosanne Tamerus ◽  
Agnes van der Heide
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Information Exchange ◽  
Survey Study ◽  
Regional Survey ◽  
Cross Sectional ◽  
Organizational Collaboration ◽  
Deceased Patient

Abstract Background When patients receiving palliative care are transferred between care settings, adequate collaboration and information exchange between health care professionals is necessary to ensure continuity, efficiency and safety of care. Several studies identified deficits in communication and information exchange between care settings. Aim of this study was to get insight in the quality of collaboration and information exchange in palliative care from the perspectives of nurses. Methods We performed a cross-sectional regional survey study among nurses working in different care settings. Nurses were approached via professional networks and media. Respondents were asked questions about collaboration in palliative care in general and about their last deceased patient. Potential associations between quality scores for collaboration and information handovers and characteristics of respondents or patients were tested with Pearson’s chi-square test. Results A total of 933 nurses filled in the questionnaire. Nurses working in nursing homes were least positive about inter-organizational collaboration. Forty-six per cent of all nurses had actively searched for such collaboration in the last year. For their last deceased patient, 10% of all nurses had not received the information handover in time, 33% missed information they needed. An adequate information handover was positively associated with timeliness and completeness of the information and the patient being well-informed, not with procedural characteristics. Conclusion Nurses report that collaboration between care settings and information exchange in palliative care is suboptimal. This study suggests that health care organizations should give more attention to shared professionalization towards inter-organizational collaboration among nurses in order to facilitate high-quality palliative care.

Current Research Status of Palliative Care in Mainland China

2018 ◽  
Vol 33 (4) ◽  
pp. 215-241 ◽  
Author(s):  
Tao Wang ◽  
Alex Molassiotis ◽  
Betty Pui Man Chung ◽  
Jing-Yu Tan
Keyword(s):  
Health Care ◽  
Decision Making ◽  
Palliative Care ◽  
Health Care Professionals ◽  
Mainland China ◽  
Education And Training ◽  
Care Needs ◽  
Research Status ◽  
Palliative Care Services ◽  
And Training

Objectives: This study aimed to obtain an overview of the current research status of palliative care in Mainland China and identify research directions for future studies by characterizing palliative care studies conducted among patients with any life-limiting illness in Mainland China and published in a peer-reviewed journal before November 2016. Methods: A review guide with 7 categories was initially developed based on existing international palliative care definitions and guidelines through content analysis. Ten databases were used to identify relevant studies from the inception of online cataloging to November 2016. Studies conducted in Mainland China and their research topic that fell within one of the categories of the review guide were included for further analysis. Descriptive analysis was adopted to summarize the relevant findings. Results: 54 studies found to be relevant were included for the analysis. Three studies on “palliative care education and training” (category 1) asserted that education and training programs were scant in Mainland China and that only 1 program had been devised within the health-care context of Shanghai. Five studies on “palliative care screening and timely identification” (category 2) highlighted the absence of early screening criteria or checklists and referral procedures for palliative care. Thirty-one studies on “palliative care needs assessment (n = 12/31) and implementation (n = 19/31)” (category 3) were identified, and various methodological flaws were observed in most of these included studies. Twelve studies on “advanced decision-making” (category 4) were identified, all of which focused on investigating the attitudes of patients with cancer, their families, and/or health-care professionals toward advanced decision-making only. The percentage of patients, family members, and health-care professionals who held positive attitudes toward advanced decision-making were varied and suboptimal, particularly for family members (51.4%-58.0%). Five studies on “caring for patients at the end of life” (category 5) were identified, and the experience of health-care professionals in caring for those patients was explored. No studies relating to “death and bereavement care” (Category 6) and “psychological support for palliative care providers” (Category 7) were identified. Conclusion: The current research status of palliative care in Mainland China remains at an early stage with minimal palliative care services used. Although several knowledge gaps were identified, the first step, which should be addressed, is assessing the palliative care needs. An appropriate and ongoing needs assessment could provide important information for constructing comprehensive education and training programs of palliative care, identifying prognostic factors of timely palliative care referral, and developing evidence-based and tailored palliative care services.

scholarly journals Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review

2020 ◽  
pp. 026921632096394 ◽  
Author(s):  
Stephanie MC Ament ◽  
Inge ME Couwenberg ◽  
Josiane JJ Boyne ◽  
Jos Kleijnen ◽  
Henri EJH Stoffers ◽  
...  
Keyword(s):  
Heart Failure ◽  
Systematic Review ◽  
Palliative Care ◽  
Chronic Heart Failure ◽  
Health Care Professionals ◽  
Healthcare Professionals ◽  
Care Process ◽  
Care Needs ◽  
Process Guidance ◽  
Palliative Care Needs

Background: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. Aim: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. Design: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools’ development, evaluation, feasibility, and implementation was sought and described. Data sources: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. Results: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. Conclusion: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.

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