Objective: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had ...difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child." Method: A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted. Results: The "voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions. Parents who actively searched to understand their child's inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss. Conclusions: Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents', ability to cope.
Palliative care is intended for any patient with a life-threatening illness, ideally combined with curative care, regardless of age and prognosis. This care does not depend on the prognosis and ...clinical conditions; it is possible to be provided by the same health team. A desire often expressed by patients in palliative care is to remain physically independent until the end of their lives. Performing daily life tasks and maintaining mobility are areas subject to intervention that result in significant gains in quality of life.
To evaluate the functionality of hospitalized cancer patients under palliative care.
This is a prospective, quantitative, and descriptive study. The functionality of patients hospitalized in the palliative care clinics of Hospital Ophir Loyola, a reference in oncology in Pará, was evaluated. Patients of both genders, aged over 18 years, were included in the study. The sample was defined by convenience, according to the patient's admission to the oncological palliative care clinics of the HOL after a referral from the surgical clinics, who did not have the capacity for curative treatment under conditions of relapses, metastases, and/or advanced stages of the disease. Those who were unconscious or in disorientation that prevented them from answering alone or with the help of the evaluator and those who died during the hospitalization period were excluded. The research was carried out from July to November 2021. The Palliative Performance Scale (PPS) and Visual Analog Pain Scale (EVA) were applied, characterizing the initial assessment T1. Patients received support from the multidisciplinary team. When starting the hospital discharge and return home programming phase, the final assessment (second stage - T2) and reapplication of the scales were performed.
seven volunteers were included in the research, with a prevalence of males (71.4%), adults aged 30 to 59 years (85.7%), married (71.4%), with low education (85.7% with incomplete 1st grade) and primary location of cancer in the digestive tract (42.8%). The volunteers showed an important improvement in palliative performance within the PPS scale, evolving with a median of 50 at T1 to 70 at T2 (p-0.0019), in pain control measured through the VAS scale from 10 to 0 (p-0.0090).
With this study, it was possible to trace the clinical profile of cancer patients in Palliative Care and attest that a clinic specialized in palliative care manages to control symptoms, reflected in the improvement of pain, palliative performance, demonstrating that specialized palliative care clinics present efficiency in this management.
Background
Efforts to improve the quality of end‐of‐life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high‐intensity ...EOL (HI‐EOL) care. The objective was to assess the rates of HI‐EOL care in this population and to determine patient‐ and hospital‐related predictors of HI‐EOL from the French national hospital database.
Methods
This was a population‐based, retrospective study of a cohort of patients aged 0 to 25 years at the time of death who died at hospital as a result of cancer in France between 2014 and 2016. The primary outcome was HI‐EOL care, defined as the occurrence of ≥1 chemotherapy session <14 days from death, receiving care in an intensive care unit ≥1 time, >1 emergency room admission, and >1 hospitalization in an acute care unit in the last 30 days of life.
Results
The study included 1899 individuals from 345 hospitals; 61.4% experienced HI‐EOL care. HI‐EOL was increased with social disadvantage (adjusted odds ratio AOR, 1.30; 95% confidence interval CI, 1.03‐1.65; P = .028), hematological malignancies (AOR, 2.09; 95% CI, 1.57‐2.77; P < .001), complex chronic conditions (AOR, 1.60; 95% CI, 1.23‐2.09; P = .001) and care delivered in a specialty center (AOR, 1.70; 95% CI, 1.22‐2.36; P = .001). HI‐EOL was reduced in cases of palliative care (AOR, 0.31; 95% CI, 0.24‐0.41; P < .001).
Conclusion
A majority of children, adolescents, and young adults experience HI‐EOL care. Several features (eg, social disadvantage, cancer diagnosis, complex chronic conditions, and specialty center care) were associated with HI‐EOL care. These findings should now be discussed with patients, families, and professionals to define the optimal EOL.
A nationwide population‐based retrospective cohort study of 1899 patients from 345 hospitals reveals that 61.4% of patients received high‐intensity end‐of‐life (HI‐EOL) care. After adjustment, it is shown that HI‐EOL care decreased in cases of palliative care and increased in cases of social disadvantage, hematological malignancies, complex chronic conditions, and specialty center care.
Community-based palliative care (CBPC) serves seriously ill individuals by integrating care for symptom and stress relief with local health care systems. This review provides the first systematic ...review of the literature to date on the effectiveness of CBPC programs and includes their measures of success, challenges faced, and characteristics of the populations served. A systematic review on CBPC program effectiveness was conducted across four electronic databases for academic articles published through August 2021. PRISMA reporting guidelines were followed throughout this review, study quality was assessed using the Mixed Methods Appraisal Tool, and results were summarized in a narrative synthesis. The 61 included articles were separated into quantitative and qualitative studies, with eight having mixed methods and belonging to both groups. Overall, the quantitative articles indicate that CBPC programs increase the likelihood that seriously ill patients in their community have their place of death as home, fewer hospitalizations, fewer emergency department visits, decreased hospital length of stays, improved quality of life, and lower health care costs. There was, however, also evidence showing certain programs were unsuccessful in improving the stated outcomes. The qualitative studies reported positive findings and highlighted areas for future program improvement, like training staff and volunteers in communication and other skills. There was a lack of quantitative and qualitative studies investigating CBPC programs in low-income and lower-middle-income countries. In addition, there is a paucity of research examining CBPC program impact on vulnerable and key populations across the globe. Although findings generally support the notion that CBPC programs are a cost-effective way to improve end-of-life quality, further research is needed examining the characteristics of the more successful programs. Findings also suggest the need for collaboration between researchers, health systems, and governments to design and implement effective CBPC programs and to share best practices across communities worldwide.
•Community-based palliative care increases the likelihood of dying at home.•Most studies find community-based palliative care positively impacts costs.•Subgroups with a certain disease or other characteristics sometimes do not benefit.•More research is necessary across different countries and populations.
Background: Palliative care encompasses supportive health care for patients at any stage of illness aimed at relieving symptoms, controlling pain, managing stress, offering respite for caregivers, ...and optimizing the quality of life. Objective: To explore strategies for increasing access to palliative care among individuals living in remote/rural communities, a rapid review was conducted on studies that explored the use of telehealth applications with this population. Methods: From December 2019 to February 2020, the PRISMA methodology was used to gather peer-reviewed studies published in the English language. MedLine, Google Scholar, and EBSCO were searched; no date limitations were set. Given the diversity of study methodologies and outcomes, the findings were synthesized narratively. The Cochrane Collaboration’s tool for assessing the risk of bias was also employed. Lastly, the studies were mapped to clinical guidelines for the various aspects of quality palliative care. Results: The 18 studies found, published between 2004 and 2019, were conducted in seven countries and on five continents. Aims included evaluating feasibility, efficacy, and user satisfaction. Insights draw from a combined pool of 3,313 patients and 250 providers. Most studies involved oncology patients and employed videoconferencing or a web platform/online software with videoconferencing. Three themes emerged: delivery of care, symptom management and quality of life, and patient/caregiver/provider satisfaction levels. Telehealth proved effective for patient and medication monitoring, provider and specialist appointments, and palliative care consultations. Operational benefits included clinician time saved, shorter appointment wait times, and reduced no show rates; implementation challenges also emerged. Statistical improvements in quality of life and symptom management were reported. Nearly two-thirds of the studies reported positive experiences among patients, caregivers, and providers; about half included an interprofessional team. The studies primarily focused on the structure/process and physical aspects of quality palliative care, there was a paucity of insights on the spiritual, cultural, end of life, and ethical/legal aspects of care. Two-thirds (12/18) of the studies employed a descriptive design. Risk for selection, performance, detection, and reporting biases emerged for all the studies; for example, only four of the studies included control groups and less than 20% (3/18) reported on attrition of study participants. Additional limitations include the rapid review methodology which relied heavily on the lead author’s decisions and the restriction of studies published only in the English language. Conclusion: More rigorous research is required to confirm the viability of clinical care delivery and establish best practices for quality, virtual palliative care to remote/rural areas.
Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life‐threatening illness. Palliative care is consistently associated with improvements in ...advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well‐suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease‐directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease.
In support of a proposed model that provides palliative care in parallel with disease‐directed therapy in a transplant program to improve symptom burden, quality of life, and healthcare utilization, this review summarizes the existing research supporting palliative intervention in cancer, advanced organ failure, and transplant populations.
The Public Health Strategy for Palliative Care Stjernswärd, Jan, MD, PhD, FRCP (Edin); Foley, Kathleen M., MD; Ferris, Frank D., MD
Journal of pain and symptom management,
05/2007, Letnik:
33, Številka:
5
Journal Article
Recenzirano
Odprti dostop
Abstract The quality of life of at least 100 million people would have improved—if today's knowledge of palliative care was accessible to everyone. A Public Health Strategy (PHS) offers the best ...approach for translating new knowledge and skills into evidence-based, cost-effective interventions that can reach everyone in the population. For PHSs to be effective, they must be incorporated by governments into all levels of their health care systems and owned by the community. This strategy will be most effective if it involves the society through collective and social action. The World Health Organization (WHO) pioneered a PHS for integrating palliative care into a country's health care system. It included advice and guidelines to governments on priorities and how to implement both national palliative care programs and national cancer control programs where palliative care will be one of the four key pillars of comprehensive cancer control. The WHO PHS addresses 1) appropriate policies; 2) adequate drug availability; 3) education of policy makers, health care workers, and the public; and 4) implementation of palliative care services at all levels throughout the society. This approach has demonstrated that it provides an effective strategy for integrating/establishing palliative care into a country.
Background:
Studies report cost-savings from hospital-based palliative care consultation teams compared to usual care only, but drivers of observed differences are unclear.
Aim:
To analyse ...cost-differences associated with palliative care consultation teams using two research questions: (Q1) What is the association between early palliative care consultation team intervention, and intensity of services and length of stay, compared to usual care only? (Q2) What is the association between early palliative care consultation team intervention and day-to-day hospital costs, compared to a later intervention?
Design:
Prospective multi-site cohort study (2007–2011). Patients who received a consultation were placed in the intervention group, those who did not in the comparison group. Intervention group was stratified by timing, and groups were matched using propensity scores.
Setting/participants:
Adults admitted to three US hospitals with advanced cancer. Principle analytic sample contains 863 patients (nUC = 637; nPC EARLY = 177; nPC LATE = 49) discharged alive.
Results:
Cost-savings from early palliative care accrue due to both reduced length of stay and reduced intensity of treatment, with an estimated 63% of savings associated with shorter length of stay. A reduction in day-to-day costs is observable in the days immediately following initial consult but does not persist indefinitely. A comparison of early and late palliative care consultation team cost-effects shows negligible difference once the intervention is administered.
Conclusion:
Reduced length of stay is the biggest driver of cost-saving from early consultation for patients with advanced cancer. Patient- and family-centred discussions on goals of care and transition planning initiated by palliative care consultation teams may be at least as important in driving cost-savings as the reduction of unnecessary tests and pharmaceuticals identified by previous studies.
A significant proportion of patients with incurable cancer receive systemic anticancer therapy (SACT) within their last 30 days of life (DOL). The treatment has questionable benefit, nevertheless is ...considered a quality indicator of end-of-life (EOL) care. This retrospective cohort study aims to investigate the rates and potential predictors of SACT and factors associated with SACT within the last 30 DOL. The study also evaluates the scope of Eastern Cooperative Oncology Group (ECOG) performance status and the modified Glasgow prognostic score (mGPS) as decision-making tools for oncologists.
This review of medical records included 383 patients with non-curable cancer who died between July 2018 and December 2019. Descriptive statistics with Chi-squared tests and regression analysis were used to identify factors associated with SACT within the last 30 DOL.
Fifty-seven (15%) patients received SACT within the last 30 DOL. SACT within 30 last DOL was associated with shorter time from diagnosis until death (median 234 days vs. 482, p = 0.008) and ECOG score < 3 30 days prior to death (p = 0.001). Patients receiving SACT during the last 30 DOL were more likely to be hospitalised and die in hospital. ECOG and mGPS score were stated at start last line of treatment only in 139 (51%) and 135 (49%) respectively.
Those with short time since diagnosis tended to receive SACT more frequently the last 30 DOL. The use of mGPS as a decision-making tool is modest, and there is lack in documentation of performance status.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Collaborative Practice in Palliative Care explores how different
professions work collaboratively across professional, institutional, social, and
cultural boundaries to enhance palliative care.
...Analysing palliative care as an interaction between different professionals, clients,
and carers, and the social context or community within which the interaction takes
place, it is grounded in up-to-date evidence, includes global aspects of palliative care
and cultural diversity as themes running throughout the book, and is replete with
examples of good and innovative practice. Drawing on experiences from within traditional
specialist palliative care settings like hospices and community palliative care
services, as well as more generalist contexts of the general hospital and primary care,
this practical text highlights the social or public health model of palliative care.
Designed to support active learning, it includes features such as case studies,
summaries, and pointers to other learning resources.
This text is an important reference for all professionals engaged in palliative care,
particularly those studying for post-qualification programmes in the area.
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