Purpose: The aim of the study was to determine the effectiveness of dignity therapy for end-of-life patients with cancer.
Methods: This study used a quasi-experimental study design with a nonrandomized controlled trial. Dignity therapy was used as an intervention in the experimental group, and general visit was used in the control group. Thirty end-of-life patients with cancer were recruited, with 16 in the experimental group and 14 in the control group. Outcome variables were the participants' dignity, demoralization, and depression. Measurements were taken at the following time points: pre-test (before intervention), post-test 1 (the 7th day), and post-test 2 (the 14th day). The effectiveness of the interventions the two groups was measured using the generalized estimating equation, with the p value set to be less than 0.05.
Results: After dignity therapy, the end-of-life patients with cancer reflected increased dignity significantly [ß = -37.08, standard error (SE) = 7.43, Wald 2 = 24.94, p < 0.001], whereas demoralization (ß = -39.55, SE = 6.42, Wald 2 = 37.95, p < 0.001) and depression (ß = -12.01, SE = 2.17, Wald 2 = 30.71, p < 0.001) were both reduced significantly.
Conclusion: Clinical nurses could be adopting dignity therapy to relieve psychological distress and improve spiritual need in end-of-life patients with cancer. Future studies might be expanded to looking at patients vis-à-vis end-of-life patients without cancer to improve their psychological distress. These results provide reference data for the care of end-of-life patients with cancer for nursing professionals.
All healthcare services strive to achieve the six factors of quality health care - safe, effective, patient-centered, timely, efficient and equitable. Yet multiple structural, process, policy and people factors can combine to result in medical error and patient harm. Measuring the quality of palliative care has many challenges due to its presence across multiple health sectors, variable skill and experience of providers and lack of defined processes for providing services. In Canada there is screening for symptoms and distress in most cancer centers, but not in non-cancer diseases. Screening for distress and disease burden can identify suffering, that when properly addressed, improves quality of life and reduces depression and hopelessness that can lead to requests for hastened death. Our hypothesis is that some requests for hastened death (known as Medical Assistance in Dying or MAiD in Canada) are driven by lack of access to palliative care or lack of quality in the palliative care attempting to address disease burden and distress such that the resulting provision of hastened death is a medical error. The root cause of the error is in the lack of quality palliative care in the previous weeks, months and years of the disease trajectory - a known therapy that the system fails to provide. The evidence for palliative care addressing symptoms and improving quality of life and mood as well as providing caregiver support is established. Early evidence supporting the use of psychotherapeutics in emotional and existential distress is also considered. We present three cases of request for assisted death that could be considered medical error. The paper references preliminary evidence from a review of previous access to palliative care in a limited number of MAiD cases showing that only a minority were identified as having palliative care needs prior to the admission where MAiD was provided. The evidence linking disease burden to hopelessness, depression and hastened death is provided. The many studies revealing the inequity or underservicing of the Canadian population with regards to palliative care are reviewed. We examine a recent framework for palliative care in Canada and point out the need for more aggressive use of standards, process and policies to ensure that Canadians are receiving quality palliative care and that it is equitably accessible to all.
BACKGROUND: Palliative care knowledge is essential in primary healthcare due to the increasing number of patients who require attention in the final stage of their life. Health professionals (physicians and nurses) need to acquire specific knowledge and abilities to provide high-quality palliative care. The development of education programmes in palliative care is necessary. The Palliative Care Knowledge Test (PCKT) is a questionnaire that evaluates the basic knowledge about palliative care, but it has not been adapted into Spanish, and its effectiveness and utility for Spanish culture have not been analysed.
OBJECTIVE: The aim of this study was to report the translation into Spanish and a psychometric analysis of the PCKT.
METHODS: The questionnaire survey was validated with a group of 561 physicians and nurses. The PCKT Spanish Version (PCKT-SV) was obtained from a process, including translation, back translation and revision by experts and a pilot study. The content validity and reliability of the questionnaire were analysed.
RESULTS: The results showed internal consistency and reliability indexes similar to those obtained by the original version of PCKT.
CONCLUSION: The PCKT-SV is a useful instrument for measuring Spanish-speaking physician and nurse knowledge of palliative care, and it is suitable to evaluate the effectiveness of training activities in palliative care.
Background: Measuring functional status in palliative care may help clinicians to assess a patient’s prognosis, recommend adequate therapy, avoid futile or aggressive medical care, consider hospice referral, and evaluate provided rehabilitation outcomes. An optimized, widely used, and validated tool is preferable. The Palliative Performance Scale Version 2 (PPSv2) is currently one of the most commonly used performance scales in palliative settings. The aim of this study is the psychometric validation process of a Polish translation of this tool (PPSv2-Polish).
Methods: two hundred patients admitted to a free-standing hospice were evaluated twice, on the first and third day, for test-retest reliability. In the first evaluation, two different care providers independently evaluated the same patient to establish inter-rater reliability values. PPSv2-Polish was evaluated simultaneously with the Karnofsky Performance Score (KPS), Eastern Cooperative Oncology Group (ECOG) Performance Status (ECOG PS), and Barthel Activities of Daily Living (ADL) Index, to determine its construct validity.
Results: A high level of full agreement between test and retest was seen (63%), and a good intra-class correlation coefficient of 0.85 (P < 0.0001) was achieved. Excellent agreement between raters was observed when using PPSv2-Polish (Cohen’s kappa 0.91; P < 0.0001). Satisfactory correlations with the KPS and good correlations with ECOG PS and Barthel ADL were noticed. Persons who had shorter prognoses and were predominantly bedridden also had lower scores measured by the PPSv2-Polish, KPS and Barthel ADL. A strong correlation of 0.77 between PPSv2-Polish scores and survival time was noted (P < 0.0001). Moderate survival correlations were seen between KPS, ECOG PS, and Barthel ADL of 0.41; - 0.62; and 0.58, respectively (P < 0.0001).
Conclusion: PPSv2-Polish is a valid and reliable tool measuring performance status in a hospice population and can be used in daily clinical practice in palliative care and research.
BACKGROUND: We aim to describe the access to palliative care (PC) in hospitalized children during end-of-life care and compare the circumstances surrounding the deaths of hospitalized children as a basis for implementing a pediatric PC program at our institution.
METHODS: We performed a retrospective chart review of deceased pediatric patients at a tertiary referral hospital in Colombia. The study group was selected by randomly drawing a sample of 100 observations from the 737 deceased children from 2013 to 2016. A 1:1 propensity score (PS) matching was performed to compare the characteristics and outcomes between PC and non-PC treated patients.
RESULTS: We included 87 patients. After PS matching, we found that patients under the care of non-PC physicians were more likely to die in the pediatric intensive care unit (non-PC: 6/10 vs PC: 1/10; P = .02), to be on vasopressor agents and mechanical ventilation (non-PC: 7/10 vs PC: 1/10; P = .02), and to receive cardiopulmonary resuscitation at the end of life (non-PC: 5/10 vs PC: 0/10; P = .03). In contrast, a significantly higher proportion of patients under the care of the pediatric PC team died with comfort measures (non-PC: 2/10 vs 8/10; P = .02) and nonescalation of care in physician orders (non-PC: 5/10 vs PC: 10/10; 0.03).
CONCLUSION: In this study, only 10 of 87 patients were treated by the pediatric PC team at the end of life. The latter finding is concerning and is a call to action to improve access to pediatric PC at our institution.
Background: factors associated with place of death inform policies with respect to allocating end-of-life care resources and tailoring supportive measures.
Objective: To determine factors associated with non-hospital deaths among cancer patients.
Design: Retrospective cohort study of cancer decedents, examining factors associated with non-hospital deaths using multinomial logistic regression with hospital deaths as the reference category.
Setting/subjects: Cancer patients (n = 15254) in Singapore who died during the study period from January 1, 2012 till December 31, 2105 at home, acute hospital, long-term care (LTC) or hospice were included.
Results: Increasing age (categories =65 years: RRR 1.25–2.61), female (RRR 1.40; 95% CI 1.28–1.52), Malays (RRR 1.67; 95% CI 1.47–1.89), Brain malignancy (RRR 1.92; 95% CI 1.15–3.23), metastatic disease (RRR 1.33–2.01) and home palliative care (RRR 2.11; 95% CI 1.95–2.29) were associated with higher risk of home deaths. Patients with low socioeconomic status were more likely to have hospice or LTC deaths: those living in smaller housing types had higher risk of dying in hospice (1–4 rooms apartment: RRR 1.13–3.17) or LTC (1–5 rooms apartment: RRR 1.36–4.11); and those with Medifund usage had higher risk of dying in LTC (RRR 1.74; 95% CI 1.36–2.21). Patients with haematological malignancies had increased risk of dying in hospital (categories of haematological subtypes: RRR 0.06–0.87).
Conclusions: We found key sociodemographic and clinical factors associated with non-hospital deaths in cancer patients. More can be done to enable patients to die in the community and with dignity rather than in a hospital.
CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably distributed towards urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access.
OBJECTIVES: A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services.
METHODS: The CNA utilized a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion manuscript, entitled "A Methodological Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources."
RESULTS: Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility, high importance recommendations included expanding PPC education for both providers and patients, and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services.
CONCLUSIONS: In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.
BACKGROUND: Valuable information for planning future end-of-life care (EOLC) services and care facilities can be gained by studying trends in place of death (POD). Scarce data exist on the POD in small developing countries. This study aims to examine shifts in the POD of all persons dying between 1999 and 2010 in Trinidad and Tobago, to draw conclusions about changes in the distribution of POD over time and the possible implications for EOLC practice and policy.
METHODS: A population-level analysis of routinely collected death certificate data of the most recent available fully coded years at the time of the study-1999 to 2010. Observed proportions for the POD of all deaths were standardised according to the age, sex and cause of death distribution in 1999. Trends for a subgroup of persons who died from causes indicative of a palliative care (PC) need were also examined.
RESULTS: The proportion of deaths in government hospitals increased from 48.9% to 55.4% and decreased from 38.7% to 29.7% at private homes. There was little variation between observed and standardised rates. The decrease in home deaths was stronger when the PC subcategory was considered, most notably from cancer.
CONCLUSION: Internationally, the proportion of deaths at institutions is increasing. A national strategy on palliative and EOLC is needed to facilitate the increasing number of people who seek EOLC at government hospitals in Trinidad and Tobago, including an investigation into the reasons for the trend. Alternatives to accommodate out-of-hospital deaths can be considered.
BACKGROUND: Olanzapine is an atypical antipsychotic that has affinity for many central nervous system receptors. Its efficacy is supported by several studies in the prevention and treatment of chemotherapy-induced nausea and vomiting. No recommendations exist on the antiemetic use of olanzapine in the palliative care setting. The aim of this work is to complete the initial work of Fonte et al. published in 2015, to determine whether the literature supports the use of olanzapine as an antiemetic in palliative situations and, in practice, to propose a therapeutic schema adapted to the palliative setting.
METHODS: Systematic review of the literature according to the PRISMA criteria. We searched the PubMed, Cochrane, RefDoc, EMBase databases and the gray literature databases. The bibliographic search was conducted between November 2016 and August 2017.
RESULTS: Thirteen articles were included: 2 case studies, 3 case series, 3 retrospective studies, 2 prospective studies, 2 literature reviews. All studies concluded on the efficacy of olanzapine as an antiemetic in the palliative care setting. No serious adverse effects were reported. Based on the data from the literature review, we propose a therapeutic scheme adapted to the palliative care context.
CONCLUSION: Action of olanzapine on many receptors and its tolerance profile make it an interesting antiemetic treatment in palliative medicine. But to date, studies are scarce and have a low statistical power. Further investigation is therefore needed to determine the benefit of this treatment in palliative care patients, compared to usual treatments.
The COVID-19 pandemic and its sequelae have created scenarios of scarce medical resources, leading to the prospect that healthcare systems have faced or will face difficult decisions about triage, allocation and reallocation. These decisions should be guided by ethical principles and values, should not be made before crisis standards have been declared by authorities, and, in most cases, will not be made by bedside clinicians. Do not attempt resuscitation (DNAR) and withholding and withdrawing decisions should be made according to standard determination of medical appropriateness and futility, but there are unique considerations during a pandemic. Transparent and clear communication is crucial, coupled with dedication to provide the best possible care to patients, including palliative care. As medical knowledge about COVID-19 grows, more will be known about prognostic factors that can guide these difficult decisions.
Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence, and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organisational and systemic approach which includes access to informal and professional support.
The COVID-19 pandemic requires healthcare teams to rethink how they can continue to provide high quality care for all patients, whether they are suffering from a COVID-19 infection or other diseases with clinical uncertainty. Although the number of cases of COVID-19 in Jordan remains relatively low compared to many other countries, our team introduced significant changes to team operations early, with the aim of protecting patients, families and healthcare staff from COVID-19 infections, while preparing to respond to the needs of patients suffering from severe COVID-19 infections. This paper describes the changes made to our ‘Do not resuscitate' (DNR) policy for the duration of the pandemic.
The daughter of a man who successfully fought to establish that patients have a right to be consulted on cardiopulmonary resuscitation (CPR) has launched a High Court challenge against Matt Hancock, the health and social care secretary for England.
Kate Masters has written a letter before action to Hancock after news reports suggested that blanket bans on CPR were being imposed during the covid-19 pandemic.
In the letter, she called on Hancock to give an emergency direction to all healthcare professionals providing that “do not attempt cardiopulmonary resuscitation” (DNACPR) orders must not be imposed unless the patient or family have been consulted and certain information provided.
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COVID-19 continues to impact older adults disproportionately, from severe illness and hospitalization to increased mortality risk. Concurrently, concerns about potential shortages of healthcare professionals and health supplies to address these needs have focused attention on how resources are ultimately allocated and used. Some strategies misguidedly use age as an arbitrary criterion, which inappropriately disfavors older adults. This statement represents the official policy position of the American Geriatrics Society (AGS). It is intended to inform stakeholders including hospitals, health systems, and policymakers about ethical considerations to consider when developing strategies for allocating scarce resources during an emergency involving older adults. Members of the AGS Ethics Committee collaborated with interprofessional experts in ethics, law, nursing, and medicine (including geriatrics, palliative care, emergency medicine, and pulmonology/critical care) to conduct a structured literature review and examine relevant reports. The resulting recommendations defend a particular view of distributive justice that maximizes relevant clinical factors and de-emphasizes or eliminates factors placing arbitrary, disproportionate weight on advanced age. The AGS positions include: (1) avoiding age per se as a means for excluding anyone from care; (2) assessing comorbidities and considering the disparate impact of social determinants of health; (3) encouraging decision makers to focus primarily on potential short-term (not long-term) outcomes; (4) avoiding ancillary criteria such as "life-years saved" and "long-term predicted life expectancy" that might disadvantage older people; (5) forming and staffing triage committees tasked with allocating scarce resources; (6) developing institutional resource allocation strategies that are transparent and applied uniformly; and (7) facilitating appropriate advance care planning. The statement includes recommendations that should be immediately implemented to address resource allocation strategies during COVID-19, aligning with AGS positions. The statement also includes recommendations for post-pandemic review. Such review would support revised strategies to ensure that governments and institutions have equitable emergency resource allocation strategies, avoid future discriminatory language and practice, and have appropriate guidance to develop national frameworks for emergent resource allocation decisions.
The ongoing coronavirus disease 2019 (COVID-19) pandemic has affected millions of people in over 180 territories, causing a significant impact on healthcare systems globally. Older adults, as well as people living with cancer, appear to be particularly vulnerable to COVID-19 related morbidity and mortality, which means that older adults with cancer are an especially high-risk population. This has led to significant changes in the way geriatric oncologists provide care to older patients, including the implementation of novel methods for clinical visits, interruptions or delays in procedures, and modification of therapeutic strategies, both in the curative and palliative settings. In this manuscript, we provide a global overview of the perspectives of geriatric oncology providers from countries across Europe, America, and Asia, regarding the adaptive strategies utilized to continue providing high quality care for older patients with cancer during the COVID-19 pandemic. Through these perspectives, we attempt to show that, although each country and setting has specific issues, we all face similar challenges when providing care for our older patients with cancer during these difficult times.
Symptom management and end-of-life care are core skills for all physicians, although in ordinary times many anesthesiologists have fewer occasions to use these skills. The current coronavirus disease (COVID-19) pandemic has caused significant mortality over a short time and has necessitated an increase in provision of both critical care and palliative care. For anesthesiologists deployed to units caring for patients with COVID-19, this narrative review provides guidance on conducting goals of care discussions, withdrawing life-sustaining measures, and managing distressing symptoms.
In view of the exceptional public health situation caused by the COVID-19 pandemic, a consensus work has been promoted from the ethics group of the Spanish Society of Intensive, Critical Medicine and Coronary Units (SEMICYUC), with the objective of finding some answers from ethics to the crossroads between the increase of people with intensive care needs and the effective availability of means. In a very short period, the medical practice framework has been changed to a 'catastrophe medicine' scenario, with the consequent change in the decision-making parameters. In this context, the allocation of resources or the prioritization of treatment become crucial elements, and it is important to have an ethical reference framework to be able to make the necessary clinical decisions. For this, a process of narrative review of the evidence has been carried out, followed by a unsystematic consensus of experts, which has resulted in both the publication of a position paper and recommendations from SEMICYUC itself, and the consensus between 18 scientific societies and 5 institutes/chairs of bioethics and palliative care of a framework document of reference for general ethical recommendations in this context of crisis.
Early on, geriatricians in Israel viewed with increasing alarm the spread of COVID-19. It was clear that this viral disease exhibited a clear predilection for and danger to older persons. Informal contacts began with senior officials from the country's Ministry of Health, the Israel Medical Association and the country's largest Health Fund; this in order to plan an approach to the possible coming storm. A group was formed, comprising three senior geriatricians, a former dean, palliative care specialist and a lawyer/ethicist. The members made every effort to ensure that its recommendations would be practical while at the same time taking into account the tenets of medical ethics. The committee's main task was to think through a workable approach were ICU/ventilator resources be far outstripped by those requiring such care. Recommendations included the approach to older persons both in the community and long term care institutions, a triage instrument and palliative care. Patient autonomy was emphasized with a strong recommendation for people of all ages to update their advance directives or if they did not have any, to quickly draw them up. Considering the value of distributive justice, with respect to triage, a "soft utilitarian" approach was advocated with the main criteria being function and co-morbidity. While chronological age was rejected as a sole criterion, in the case of an overwhelming crisis, "biological age" would enter into the triage considerations; but only in the case of distinguishing between people with equal non-age related deficits. The guideline emphasized that no matter what, in the spirit of beneficence, anyone who fell ill must receive active palliative care throughout the course of a COVD-19 infection but especially at the end of life. Furthermore, in the spirit of non-maleficence, the very frail, old-old and severely demented would be actively protected from dying on ventilation.