Place of death is at times suggested as an outcome for palliative care services. This study aimed to describe longitudinal preferences for place of care and place of death over time for patients and ...their caregivers. Longitudinal paired data of patient/caregiver dyads from a prospective unblinded cluster randomised control trial were used. Patients and caregivers were separately asked by the palliative care nurse their preference at that time for place of care and place of death. Longitudinal changes over time for both questions were mapped; patterns of agreement (patient and caregiver; and preference for place of death when last asked and actual placed of death) were analysed with kappa statistics. Seventy-one patient/caregiver dyads were analysed. In longitudinal preferences, preferences for both the place of care (asked a mean of >6 times) and place of death (asked a mean of >4 times) changed for patients (28% and 30% respectively) and caregivers (31% and 30%, respectively). In agreement between patients and caregivers, agreement between preference of place of care and preferred place of death when asked contemporaneously for patients and caregivers was low 56% (κ 0.33) and 36% (κ 0.35) respectively. In preference versus actual place of death, preferences were met for 37.5% of participants for home death; 62.5% for hospital; 76.9% for hospice and 63.6% for aged care facility. This study suggests that there are two conversations: preference for current place of care and preference for care at the time of death. Place of care is not a euphemism for place of death; and further research is needed to delineate these. Patient and caregiver preferences may not change simultaneously. Implications of any mismatch between actual events and preferences need to be explored.
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Experten für die „most vulnerable humans Redelsteiner, Christoph
Procare: Das Forbildungsmagazin Fur Pflegeberufe,
12/2019, Volume:
24, Issue:
10
Journal Article
Peer reviewed
Jane Addams gründete 1889 das Hull House in Chicago als Begegnungsort für Menschen, die in ungesunden Wohnverhältnissen lebten, kein Trinkwasser hatten oder schlechter Luft, mangelnder Ernährung, ...Lärm ausgesetzt waren, unter Alkohol- und Drogenkonsum litten und kaum Zugang zu Bildung hatten. Sozialarbeiter verfügen über ein breites Querschnittswissen aus Bereichen wie Gesundheit, Medizin, Recht, Kommunikation, Netzwerkarbeit, Kooperation sowie auch Ressourcenkenntnisse über Hilfeeinrichtungen aller Art. Experten für „most vulnerable humans“ Sozialarbeiter sind Experten für die „most vulnerable humans“, also für jene Menschen, die in ihrem lebensweltlichen Kontext am meisten sozial, psychologisch oder physisch verletztlich bzw. gefährdet sind. Kategorien der Sozialen Arbeit im Gesundheitswesen: ▪ Diagnosebezogene Soziale Arbeit: Unterstützung von Menschen mit chronischen Erkrankungen oder nach körperlichen Verletzungen wie Amputations-verletzungen, ▪ Krebs, Diabetes, Entwicklungsschwierigkeiten, HIV/Aids, Selbsthilfegruppen,... ▪ Soziale Arbeit im Bereich Mental Health: Hilfe für Klienten mit ▪ Demenz, Alkohol-/Drogensucht, Suizidgefahr, Schizophrenie, Paranoia, ... ▪ Soziale Arbeit für spezielle Populationen: Schwangere, Familien, hochbetagte Menschen, Menschen in wirtschaftlicher und sozialer Armut, Gefangene, ▪ Immigranten/Menschen auf der Flucht, Palliative Care, Entlassungsmanagement, pflegende Angehörige,.. ▪ Soziale Arbeit im Bereich Diversität: Natives, Minoritäten, LGBTQI (Lesbian, Gay, Bisexual, Transgender, Transsexual, Queer und Intersex Life),... ▪ Community Work / Sozialraumorientierte Soziale Arbeit: Grätzelsozialarbeit, Sozialarbeit im Gemeinwesen z. B. durch Stärkung der Bürgerbeteiligung und Eigeninitiative der Bewohner Soziale Arbeit und Prävention Aus Sicht der Prävention ist Soziale Arbeit je nach Bereich unterschiedlich stark in allen Kategorien der Prävention tätig.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OBVAL, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission. 1 The types of procedures, patients, and the intent of the procedures has not been well ...defined. Understanding these details may help pediatric surgeons better determine the clinical settings in which certain procedures will not enhance palliation or survival. Methods: A retrospective single institution chart review was performed for patients age 14 days to 18 years with chronic conditions who died while inpatient from 2013–2017. Data was gathered on demographics, primary diagnosis, intubation status, palliative care involvement, duration of hospital stay, length of palliative care involvement, and total number of procedures. Negative binomial regression was used to assess association with number of procedures. Results: 132 children met inclusion criteria. Most children were White and less than one year old. The most common type of diagnosis was cardiac in nature. Children underwent an average of three procedures. 75% were intubated and 77.5% had palliative care involved. Patients who were less than one year old at death were more likely to have been intubated, had longer terminal hospital stays, and had more procedures. Those who were intubated underwent more procedures and had longer hospital stays. Those with longer palliative care involvement had fewer procedures. Conclusions: Children undergo a significant number of surgical procedures during their terminal hospitalization. This may be influenced by age, intubation status, and length of stay. Ongoing study may help refine which procedures may have limited impact on survival in the chronically ill pediatric population.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK, VSZLJ
According to Cancer Research UK, there are currently more than 200 hospices offering free care to people with cancer and other illnesses across the UK. ...inadequate government funding in local ...constituencies has forced providers of hospice care to rely increasingly on private fundraising and community donations, resulting in a so-called postcode lottery of palliative-care services. ” “While the majority of palliative and end-of-life care is provided via general practitioners, hospitals, and community health services, we recognise the incredibly valuable role the charity sector plays in providing hospice care and supporting loved ones.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
In larger parts of the Middle East palliative care is still misunderstood among health professionals, cancer patients and the public at large. One reason to that is because the term does not ...obviously communicate the intent of this clinical discipline, which is lending better quality of life while combating cancer. Further, culture, tradition and religion have contributed to this misgiving and confusion especially at the terminal stage of the disease.
The Middle East Cancer Consortium jointly with the American Society of Clinical Oncology, the American Oncology Nursing Society, the San Diego Hospice Center for Palliative Medicine and the Children's Hospital & Clinics of Minnesota initiated a series of training courses and workshops in the Middle East to provide updated training to physicians, nurses, social workers and psychologists from throughout the region with basic concepts of palliative care and pain managements in adults and children cancers.
During the past 6 years hundreds of professionals took part in these educational and training activities, thereby creating the core of trained caregivers who start to make the change in their individual countries.
The outcome of consecutive training activities can overcome geopolitical instabilities, and yield a genuine change in approach of both regulators, medical administrators, medical staff and the public; as to the important contribution of palliative care services to the welfare of the patient and his/her family.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Little is known about patterns of end-of-life care for patients with advanced kidney disease not treated with maintenance dialysis.
Case series.
A sample of 14,071 patients with sustained estimated ...glomerular filtration rates < 15mL/min/1.73m2 treated in the US Veterans Affairs health care system who died during 2000 to 2011. Before death, 12,756 of these patients had been treated with dialysis, 503 had been discussing and/or preparing for dialysis therapy, and for 812, there had been a decision not to pursue dialysis therapy.
Hospitalization and receipt of an intensive procedure during the final month of life, in-hospital death, and palliative care consultation and hospice enrollment before death.
Compared with decedents treated with dialysis, those for whom a decision not to pursue dialysis therapy had been made were less often hospitalized (57.3% vs 76.8%; OR, 0.40 95% CI, 0.34-0.46), less often the recipient of an intensive procedure (3.5% vs 24.6%; OR, 0.15 95% CI, 0.10-0.22), more often the recipient of a palliative care consultation (52.6% vs 21.6%; OR, 4.19 95% CI, 3.58-4.90), more often used hospice services (38.7% vs 18.2%; OR, 3.32 95% CI, 2.83-3.89), and died less frequently in a hospital (41.4% vs 57.3%; OR, 0.78 95% CI, 0.74-0.82). Hospitalization (55.5%; OR, 0.39 95% CI, 0.32-0.46), receipt of an intensive procedure (13.7%; OR, 0.60 95% CI, 0.46-0.77), and in-hospital death (39.0%; OR, 0.47 95% CI, 0.39-0.56) were also less common among decedents who had been discussing and/or preparing for dialysis therapy, but their use of palliative care and hospice services was similar.
Findings may not be generalizable to groups not well represented in the Veterans Affairs health care system.
Among decedents, patients not treated with dialysis before death received less intensive patterns of end-of-life care than those treated with dialysis. Decedents for whom there had been a decision not to pursue dialysis therapy before death were more likely to receive palliative care and hospice.
Children with medical complexity (CMC) are often cared for by both complex care and palliative care pediatric teams. No prior research has investigated the relationship between these two disciplines.
...The purpose of this article is to investigate challenges that complex care programs face in caring for children with medical complexity (CMC), as well as to explore whether identified challenges could be met through collaboration with pediatric palliative care or additional training for complex care teams.
Medical providers who self-identified as providing clinical care to children with medical complexity were asked to complete an online anonymous survey. Subjects were recruited through a Complex Care listerv. Data were analyzed using descriptive statistics.
85 subjects completed the survey, of whom 87.1% (n=74) were physicians, and 12.0% (n=11) were nurse practitioners. Subjects reported several challenges in caring for CMC, including symptom management, establishing goals of care, advance care planning, and coordination of care. A majority of subjects reported benefitting from palliative care consultative assistance in each subject area. Most subjects described their relationship with palliative care as a close partnership with frequent overlap.
The evolving field of pediatric complex care is associated with an array of challenges in caring for CMC. Many of these challenges include competency areas where palliative care providers receive concerted training. Our research suggests greater palliative care involvement in the CMC population can benefit complex care teams and patients, given the expertise palliative providers can bring to the population and the discipline of complex care.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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.
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CEKLJ, FFLJ, NUK, ODKLJ, PEFLJ, UPUK
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.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
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