Objective: Little data about the management of drugs in terminally ill palliative care cancer patients is available. The present study aimed at describing the evolution of anticancer and non-anticancer treatments (NACTs) in cancer patients in palliative care units. The second objective was to identify factors leading to the medical decision to withdraw or not NACTs.
Methods: Data from 1,091 cancer patients hospitalized in palliative care units were prospectively collected in 2010-2011, through a multicenter, observational French cohort.
Results: The median overall survival after admittance in palliative care units was 15 days. Specific anticancer treatments were systematically stopped in the first 24 h in palliative care units, but for 4.5% of patients. Regarding NACTs, patients were heavily treated with strong opioids (74%), corticosteroids (51%), and antidepressants (21.8%) until death. Antiulcer agents (63.4%), antibiotics (25.7%), thrombosis prevention (21.8%), antidiabetics (7.6%), and transfusions (4%) were often also continuously prescribed. In multivariate analysis, ECOG PS 4 was an independent predictor of continuous prescription of morphine and an independent predictor of discontinuation of corticosteroids, proton-pump inhibitors, antidiabetics, and preventive anticoagulant therapy. Infection symptoms independently predicted continuous prescription of paracetamol. Paralysis and cancer palpable mass independently predicted corticosteroid withdrawal. Brain metastases independently predicted antiulcer withdrawal. Hemorrhage independently predicted preventive anticoagulant withdrawal. Availability to a venous access independently predicted paracetamol and antiulcer continuous prescriptions. Co-prescriptions independently predicted continuous prescriptions (antibiotics with antiulcer, antifungals with antibiotics) or withdrawal (preventive anticoagulant with antiplatelets and antifungals).
Conclusions: NACT prescription remained commonplace in terminally ill palliative cancer patients, although their benefit is questionable.
Introduction: Today, new health care models are being proposed with the aim of reducing hospital beds and providing services in primary facilities and homes. These models are developed with the focus on the patients and towards their self-management and self-accomplishment of the activities. Among these, Mobile Health Technology seems to be appropriate for making a new model in palliative care and in different types of care, in general. Palliative care Application (app)can pave the way for promoting the patients' knowledge and thus improving their quality of life, which, in turn, can provide appropriate care at the end of the patients' life.
Aim: This study endeavored to develop the initial version of Mobile Application for cancer Palliative care for the purpose of improving the quality of Iranians' life.
Methods: A mixed method study was conducted in three Phases as follows: 1) comparative study of current mobile applications; 2) developing an object-oriented conceptual model for mobile apps; and 3) developing the initial version of Ghasedak (Ghasedakis the Persian word stand for "Dandelion") approved for production.
Results: Ghasedak was developed for the appropriate cancer self-care, with such functionalities as user training; including cancer definition, cancer factors, its signs and symptoms, types, prevention, cure, adherence to the constraints, strategies for reducing anxiety and overcoming fear, definition and importance of palliative care, management of physical, psychological, social as well as spiritual complications. Ghasedak also includes Clinicians appointment reminds, personal health, user guide, application setting, and patient notes.
Conclusion: Ghasedak was developed in compliance with Iranian experts' opinions. It seems it would be of help in self-care of patients with needed to palliative care.
Background: In healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users' expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design.
Methods: Results from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically.
Results: Interviews highlighted minor areas for change within the questionnaire and provided broader insight into patients' experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions.
Conclusions: Questionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.
Background: Breathlessness, a common symptom in advanced disease, is a distressing, complex symptom that can profoundly affect the quality of one's life. Evidence suggests that specialist palliative care breathlessness intervention services can improve physical well-being, personal coping strategies and quality of life. In the UK, the use of quality improvement methods is well documented in the National Health Service. However, within the independent hospice sector there is a lack of published evidence of using such methods to improve service provision.
Aim: The aim of this project was to reduce the waiting time from referral to service commencement for a hospice breathlessness service by 40%-from a median of 19.5 to 11.5 working days.
Methods: Using a quality planning and systems thinking approach staff identified barriers and blockages in the current system and undertook plan-do-study-act cycles to test change ideas. The ideas tested included offering home visits to patients on long-term oxygen, using weekly team 'huddles', streamlining the internal referral process and reallocating staff resources.
Results: Using quality improvement methods enabled staff to proactively engage in positive changes to improve the service provided to people living with chronic breathlessness. Offering alternatives to morning appointments; using staff time more efficiently and introducing accurate data collection enabled staff to monitor waiting times in real time. The reduction achieved in the median waiting time from referral to service commencement exceeded the project aim.
Conclusions: This project demonstrates that quality improvement methodologies can be successfully used in a hospice setting to improve waiting times and meet the specific needs of people receiving specialist palliative care.
Background: When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden.
Aim: To determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured.
Design: An international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1–5, lowest to highest priority) of domains. Participants’ rationales for their choices were analysed thematically.
Setting/participants: In all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016.
Results: Participants’ years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were ‘overall wellbeing/quality of life’ (2.75), ‘pain’ (2.06), and ‘information needs/preferences’ (2.06), respectively. The palliative measure ‘Phase of Illness’ was recommended as the preferred measure of time period over which the domains were measured.
Conclusion: The domains of ‘overall wellbeing/quality of life’, ‘pain’, and ‘information needs/preferences’ are recommended for regular measurement, assessed using ‘Phase of Illness’. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.
Experience-based design, co-design, and experience-based co-design can be used within healthcare to design services that improve the patient, carer and staff experience of the services. As palliative and end-of-life care centrally value person-centred care, we believe that service designers, commissioners and those tasked with making quality improvements will be interested in this growing field. This paper outlines these approaches-with a particular emphasis on experience-based co-design-and describes how they are and can be used within palliative and end-of-life care. Based on a rapid review and several case studies, this article highlights the key lessons learnt from previous projects using these approaches and discusses areas for improvement in current reporting of service design projects.
BACKGROUND: Hospitals are important sites of end-of-life care, particularly for older people. A need has been identified to understand best practice in hospital end-of-life care from the service-user perspective.
AIM: The aim of this study was to identify examples of good care received in the hospital setting during the last 3 months of life for people dying in advanced age from the perspective of bereaved family members.
DESIGN: A social constructionist framework underpinned a qualitative research design. Data were analysed thematically drawing on an appreciative enquiry framework.
SETTING/PARTICIPANTS: Interviews were conducted with 58 bereaved family carers nominated by 52 people aged >80 years participating in a longitudinal study of ageing. Data were analysed for the 21 of 34 cases where family members were 'extremely' or 'very' satisfied with a public hospital admission their older relative experienced in their last 3 months of life.
RESULTS: Participants' accounts of good care aligned with Dewar and Nolan's relation-centred compassionate care model: (1) a relationship based on empathy; (2) effective interactions between patients/families and staff; (3) contextualised knowledge of the patient/family; and (4) patients/families being active participants in care. We extended the model to the bicultural context of Aotearoa, New Zealand.
CONCLUSION: We identify concrete actions that clinicians working in acute hospitals can integrate into their practice to deliver end-of-life care with which families are highly satisfied. Further research is required to support the implementation of the relation-centred compassionate care model within hospitals, with suitable adaptations for local context, and explore the subsequent impact on patients, families and staff.
OBJECTIVE: To select outcomes and indicators of the Nursing Outcomes Classification (NOC), in order to assess patients with cancer under palliative care with Acute and Chronic Pain Nursing Diagnoses; and to construct the conceptual and operational definitions of the indicators.
METHOD: Expert opinion study and literature review. The sample consisted of 13 experts. The data collection was in own tool applied in face-to-face meeting and by e-mail. In the analysis of the data, it was considered between 75% and 100% of agreement.
RESULTS: Eight outcomes and 19 indicators were selected. The results with higher scores were Pain Level, Pain Control and Client Satisfaction: Pain Management. For all indicators selected, conceptual and operational definitions were constructed.
CONCLUSION: The selection of results and priority indicators for the assessment of pain in palliative care, as well as the construction of its definitions, will support clinical practice.
BACKGROUND: Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness.
METHODS: After-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident’s death.
RESULTS: Primary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer.
CONCLUSIONS: Overall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach.
Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting. Nurses are inadequately prepared to provide end-of-life (EOL) care because of cure-focused education. Friends and family of dying patients report poor quality of death largely as a result of inadequate communication from health care professionals about the dying process. The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. These acronym organized tools were developed based upon the common symptom management needs of the dying including Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. The CARES tool for nurses improved nursing knowledge and comfort related to EOL care and common symptom management needs of the dying and also enhanced nurses' confidence in communicating about the dying process with friends and family. Final Journey, the friends and family version of the CARES tool, reinforced EOL information for friends and family, helped nurses answer difficult questions, and promoted and enhanced communication between health care professionals and friends and family of the dying.
The authors conducted an integrative review to determine evidence-based and most efficient strategies for improving the palliative care of patients at the end-of-life stage. Thirteen articles that met the overall inclusion criteria were evaluated. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses flowchart approach was used for the screening process. The Critical Appraisal Skill Program and the Mixed-Methods Appraisal Tool were also used for the critical appraisal of the data. Full reports of relevant articles were retrieved, and data were extracted by 2 reviewers independently. The quality of studies was appraised in reference to Consolidated Criteria for Reporting Qualitative Research guidelines. Key aspects included communication and coordination among the team members-patient-centered approach. The major theme was the application of a holistic approach to palliative care consisting of providing comfort to the dying patient. It was identified that relationships, which were identified as spiritual needs, are also crucial to the improvement of palliative care. Improving nursing education in this area, undertaking appropriate curriculum development, and providing coordination among training programs will help knowledgeable health care providers deliver compassionate, affordable, sustainable, and high-quality care to a growing population of aging patients facing the end of their lives.
Background: Few measures exist to assess the quality of care received by home care clients, especially at the end of life.
Objective: This project examined the rates across a set of quality indicators (QIs) for seriously ill home care clients.
Design: This was a cross-sectional descriptive analysis of secondary data collected using a standardized assessment tool, the Resident Assessment Instrument for Home Care (RAI-HC).
Setting/Subjects: The sample included RAI-HC data for 66,787 unique clients collected between January 2006 and March 2018 in six provinces. Individuals were defined as being seriously ill if they experienced a high level of health instability, had a prognosis of less than six months, and/or had palliative care as a goal of care.
Measurements: We compared individuals with cancer (n = 21,119) with those without cancer (n = 47,668) on demographic characteristics, health-related outcomes, and on 11 QIs.
Results: Regardless of diagnosis, home care clients experienced high rates (i.e., poor performance) on several QIs, namely the prevalence of falls (cancer = 42.4%; noncancer = 55%), daily pain (cancer = 48.3%; noncancer = 43.2%), and hospital admissions (cancer = 48%; noncancer = 46.6%). The QI rates were significantly lower (i.e., better performance) for the cancer group for three out of the 11 QIs: falls (absolute standardized difference [SD] = 0.25), caregiver distress (SD = 0.28), and delirium (SD = 0.23).
Conclusions: On several potential QIs, seriously ill home care clients experience high rates, pointing to potential areas for quality improvement across Canada.
BACKGROUND: Palliative care guidelines and quality measures have been developed in many countries to improve the quality of care. The challenge is to implement quality measures nationally to improve quality of care across all settings.
OBJECTIVE: This article describes the development and implementation of National Guidelines for Palliative Care (NGPC) in Singapore.
DESIGN: The NGPC was developed through literature review, multidisciplinary inputs, and modified RAND Delphi method. Quality measures for the guidelines were developed through literature review and multidisciplinary inputs and implemented with an audit of specialist palliative care providers.
RESULTS: The NGPC consisted of 13 guidelines and 64 quality measures. A total of 11 palliative care services (73.3%) participated in the audit from September 2015 to October 2015. National-level and service-level gaps in quality of care were identified and individual providers identified priority areas for improvement.
CONCLUSION: We successfully developed the national palliative care guidelines and quality measures. We implemented voluntary self-assessment among health care institutions in various settings nationally that serve to catalyze quality improvement and cultivate a culture of quality improvement.
BACKGROUND: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase.
AIM: To identify the elements that nursing home residents' family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective.
DESIGN: Systematic review (PROSPERO no. 95581) with meta-aggregation method.
DATA SOURCES: Five electronic databases were searched from inception between April and May 2018. Published qualitative studies (and mixed-method designs) of end-of-life care experience of nursing home family carers whose relative was dead or at the end-of-life were included. No language or temporal limits were applied.
RESULTS: In all, 18 studies met inclusion criteria. A 'life crisis' often resulted in a changed need of care, and the transition towards palliative care was sustained by a 'patient-centered environment'. Family carers described good end-of-life care as providing resident basic care and spiritual support; recognizing and treating symptoms; assuring continuity in care; respecting resident's end-of-life wishes; offering environmental, emotional and psychosocial support; keeping family informed; promoting family understanding; and establishing a partnership with family carers by involving and guiding them in a shared decision-making. These elements improved the quality of end-of-life of both residents and their family, thus suggesting a common ground between good end-of-life care and palliative care.
CONCLUSION: The findings provide a family-driven framework to guide a sensitive and compassionate transition towards palliative care in nursing home.
BACKGROUND: Women with metastatic breast cancer (MBC) experience unique symptom management and psychosocial needs due to aggressive, yet palliative treatment with a progressive, chronic illness.
OBJECTIVE: This article describes the effect of a quality improvement project for coordination of supportive care in MBC. Program evaluations included referral rates for supportive services, patient-reported outcomes of symptom distress, generalized anxiety, and overall well-being.
DESIGN: An interdisciplinary Support, Education and Advocacy Program (MBC-SEA) was developed. The 1-hour, weekly, patient review included collaborative assessments to determine needs for social service, psychological counseling, and palliative care. A prospective pre- and postexperimental cohort design with convenience sampling was used. Analysis was conducted with paired t test analysis of pre- and postimplementation outcomes.
SETTING/PARTICIPANTS: Program outcomes of 118 women with MBC visiting an urban outpatient breast cancer clinic during September 2016 to November 2016 (pre) and January 2017 to March 2017 (post) were evaluated.
MEASUREMENTS: Referral rates to social work and palliative care, symptom, anxiety, and overall well-being scores.
RESULTS: Following program implementation, referrals to palliative care and social work supportive services increased significantly including patient-reported outcomes symptom distress scores mean difference 1.4 (95% confidence interval [CI]: 0.4306-2.6428), P = .004; generalized anxiety scores mean difference 1.5 (95% CI: 0.5406-2.5781), P = .003; and overall well-being mean difference of -0.7 (95% CI: -1.3498 to -0.0570), P = .03.
CONCLUSIONS: Purposeful nurse-led assessment for social service and palliative care needs increases referrals with improvement in patient-reported outcomes.
CONTEXT: The Bereaved Family Survey (BFS) is used to evaluate the quality of end-of-life (EOL) care in VA inpatient settings. The BFS consists of a global Performance Measure (BFS-PM) and three factors that relate to specific aspects of EOL care.
OBJECTIVE: The purpose of this study was to identify empirically-based target scores on each BFS factor that are most strongly related to a rating of "excellent" on the BFS-PM.
METHODS: We conducted a cross-sectional analysis of BFS and Veteran clinical data from January 2012 to January 2016. Logistic regression models were constructed for each potential cut-point on the three BFS factors and accounted for facility case-mix and nonresponse bias. Model fit was assessed primarily using the Liu Index, Bayesian Information Criterion (BIC) and classification accuracy values.
RESULTS: Our analytic sample included 40,180 Veterans whose next-of-kin completed a BFS. The mean BFS response rate across study years was 58%. A score of 14 or higher on the Respectful Care and Communication factor (range 0-15) had the lowest BIC (121355) and highest percent correctly classified (81.2%). The Emotional and Spiritual Support factor (range 0-9) had an optimal score of 8 or higher (BIC=133685; % correctly classified=77.1%). An optimal cut-point on the Benefits factor was not identified.
CONCLUSION: The identification of data-driven targets make BFS factor scores more useful to clinicians and administrators focused on improving quality of EOL care in their facilities. Our results lend support for prioritizing quality improvement efforts related to respectful care and communication.
BACKGROUND: Accessible indicators of aggressiveness of care at the end-of-life are useful to monitor implementation of early integrated palliative care practice. To determine the intensity of end-of-life care from exhaustive data combining administrative databases and hospital clinical records, to evaluate its variability across hospital facilities and associations with timely introduction of palliative care (PC).
METHODS: For this study designed as a decedent series nested in multicentre cohort of advanced cancer patients, we selected 997 decedents from a cohort of patients hospitalised in 2009-2010, with a diagnosis of metastatic cancer in 3 academic medical centres and 2 comprehensive cancer centres in the Paris area. Hospital data was combined with nationwide mortality databases. Complete data were collected and checked from clinical records, including first referral to PC, chemotherapy within 14 days of death, >=1 intensive care unit (ICU) admission, >=2 emergency department visits (ED), and >= 2 hospitalizations, all within 30 days of death.
RESULTS: Overall (min-max) indicator values as reported by facility providing care rather than the place of death, were: 16% (8-25%) patients received chemotherapy within 14 days of death, 16% (6-32%) had >=2 admissions to acute care, 6% (0-15%) had >=2 emergency visits and 18% (4-35%) had >=1 intensive care unit admission(s). Only 53% of these patients met the PC team, and the median (min-max) time between the first intervention of the PC team and death was 41 (17-112) days. The introduction of PC > 30 days before death was independently associated with lower intensity of care.
CONCLUSIONS: Aggressiveness of end-of-life cancer care is highly variable across centres. This validates the use of indicators to monitor integrated PC in oncology. Disseminating a quality audit-feedback cycle should contribute to a shared view of appropriate end-of-life care objectives, and foster action for improvement among care providers.
La prise de décision partagée correspond à l’un des modèles de décision médicale où patient et professionnels de santé délibèrent autour des options disponibles et les hiérarchisent selon les préférences du patient. Des aides à la décision peuvent les aider dans ce dialogue. Elles participent à l’amélioration de la qualité des soins.
PURPOSE: Quality end-of-life care (EoLC) is a key aspect of oncology. Days at home in the last 6 months of life represents a novel, patient-driven quality indicator of EoLC. We measured days at home in a large population of patients with cancer in Ontario, Canada. Trends over time and predictors of more or less time at home were also determined.
METHODS: We conducted a population-based retrospective study using health administrative data linked by unique, encoded identifiers and analyzed at the ICES. Quantile regression was used to determine significant predictors of more or less time at home.
RESULTS: Of 72,987 patients who died of cancer in Ontario, Canada and met our inclusion criteria, the median number of days spent at home in the last 6 months of life was 164 (interquartile range [IQR], 144 to 175 days) of a possible 180 days. Patients with hematologic cancers spent significantly fewer days at home (156; IQR, 134 to 170 days). The strongest predictors of more time at home were male sex (+2.87 days relative to female sex; CI, 2.43 to 3.31 days) and receipt of palliative care before the last 6 months of life (+2.38 days; CI, 1.95 to 2.08 days). Additional predictors included income, age, cancer type, comorbidity burden, and health region. The majority of patients (69.7%) did not die at home.
CONCLUSION: Days at home in the last 6 months of life, obtained from administrative data, can be used as a measure of quality EoLC. Predictors of days at home may prove valuable targets for future policy intervention.
OBJECTIVE: To compare perceptions of various aspects of palliative care for doctors and nurses; and examine factors contributing to perceived quality palliative care in intensive care units (ICUs).
DESIGN: A cross-sectional survey study conducted from November to December 2013. Questionnaires used were Knowledge, Attitudinal and Experiential Survey on Advance Directives (ADs), Clarke's Quality of Palliative Care and Nurses' Participation in the end-of-life (EOL) decision-making process.
SETTING: Seven adult medical and surgical ICUs at a medical center in Northern Taiwan.
PARTICIPANTS: In total, 172 doctors and nurses who worked in adult ICU for more than 3 months.
MAIN OUTCOME MEASURES: Nurses' and doctors' perception of quality palliative care.
RESULTS: Nurses provided better care than doctors in symptom management, comfort care and spiritual care; their participation in EOL decision-making was the sole modifiable contributor to perceived quality palliative care in ICUs (ß = 0.24, P < 0.01). Both doctors and nurses had positive attitudes towards ADs (mean = 4.05/10; standard deviation [SD] = 1.38) while their knowledge of ADs was poor (mean = 29.72/40; SD = 3.00). More than half of nurses currently participated in EOL decision-making and over 80% of doctors and nurses agreed both parties should engage in EOL decision-making process. Majority of doctors (83.9%) reckoned nurses agreed with their EOL decisions while a significant percentage (40%) of nurses were uncertain about doctors’ decisions ( 2 = 12.07, P < 0.01).
CONCLUSIONS: Nurses' participation in EOL decision-making and strengthening spiritual care are imperative to rendering quality palliative care in ICUs. Potential disagreements arose during EOL decision-making between doctors and nurses; and insufficient knowledge of ADs should be addressed.