Positive aspects and challenges associated with caring for a dying relative at home

Research has consistently shown that family caregivers have a variety of unmet needs, despite comprehensive professional support for caregivers being a central aim of palliative care. This sub-study of a larger randomized controlled trial sought feedback from 47 primary family caregivers of advanced cancer patients who had recently commenced home palliative care. During semi-structured interviews in their homes, family caregivers were asked to comment on the key challenges associated with their role and whether they could identify challenges. These were associated with their own ill health, family circumstances, insufficient skills to manage patient symptoms, limited time for themselves and inadequate support from health professionals. Despite these challenges, 60% of family caregivers were readily able to identify positive aspects of the role. Previous research has tended to focus on the negative impact of caregiving. The extent to which the positive aspects buffer the negative aspects of the role warrants further exploration, as does the long-term impact of the caregiver role on those who are unable to recognize positive elements.

Búsqueda sistemática de guías de práctica clínica en cuidados paliativos pediátricos

Actualmente se estima que más de 160.000 niños en todo el mundo son diagnosticados de cáncer cada año y esta cifra podría ser considerablemente superior debido que los datos en su mayoría son imprecisos (1), hay un gran número de niños que junto con sus familias deben hacer frente a las implicaciones del diagnóstico de cáncer o enfermedad terminal, del tratamiento y el pronóstico. En Colombia se viene practicando en los servicios de pediatría, sin embargo no se realiza bajo un protocolo establecido El objetivo de este trabajo fue realizar una búsqueda sistemática de Guías de Práctica Clínica en Cuidados Paliativos Pediátricos basadas en la evidencia en el mundo y evaluarlas mediante preguntas clínicas preestablecidas, y bajo la metodología GLIA indicada por el ministerio de protección social, teniendo en cuenta la realidad colombiana y los principios de accesibilidad, calidad y eficiencia consagrados en el Sistema General de Seguridad Social de Salud de Colombia, con el fin de identificar la mejor Guía de Práctica Clínica (GPC) para la población de la Fundación Cardioinfantil de Bogotá – Colombia. Como resultado de la búsqueda se obtuvieron 32 GPC en Cuidados Paliativos de los cuales 8 guías se relacionaban con la población objeto y solo 5 de las guías respondían a las preguntas clínicas. El informe se elaboró según la metodología PRISMA con el fin constituir una base de datos para posteriores estudios, realización de guías o la adaptación de guías basadas en la evidencia.

O oncologista clínico diante da morte: implicações para a produção do cuidado

It is undeniable that all the extraordinary technological advances in contemporary society have increased the severe patients expectation and quality of life, especially cancer patients. On the other hand, it is easily verifiable by many researches that it was not possible to advance in the same proportion in caring for the human experience of death. Much is said about the anguish of a man facing death, of cancer patients in terminal stage, about their families, and very little about the feelings, anxieties and ways of coping with the medical professional who deals with this situation, specifically the clinical oncologist. Little is known about the experience of the doctor who has learned to take death as an enemy to be defeated, and increasingly is compelled to live at length with his advertisement. However, we started to watch in recent years a growing interest of researchers in this issue. This study seeks to add to this interest in order to understand the experience of clinical oncologists that accompany dying patients, the meanings they attach to death, ways of coping and the implications for providing care. This is a qualitative study in which was used as a tool for data collection an in-depth interview with the projective using script and scenes. Gadameriana Hermeneutics was used for analysis and interpretation of narratives. The subjects were 10 clinical oncologists who work at two institutions from cancer treatments in the state of Rio Grande do Norte, chosen from a variation in the time working in the specialty (minimum of one year, even old ones). However, you can bring some initial results for the dialogue. It was found that the death is still a topic that causes many difficulties in the daily lives of these professionals, the choice for oncology involves dealing with death without preparation in medical education; being close to the patient in the final moment, supporting the family, coping with own pain of loss and the inability to heal. These are central elements of the narratives. We also have investment in medical training and continuing education in setting up a demand that permeates the discourse of participants. Being able to listen to the subjective world of clinical oncologists will support the work not only for them as other professionals who deal with patients with advanced cancer, providing evidence to understand to what extent the meanings attributed to its know-how before patients on the verge of death interfere with the production of care and allow identify coping strategies in everyday life of these professionals that hinder or facilitate coping with death, promote or preclude the care with others and with themselves. It is hoped that research can contribute to the field of knowledge about the know-how in clinical oncology and their terminal-care-death oncologist-patient relationships, bringing runways capable of promoting a better quality of care in the production of all involved in this process: professionals, patients and families

Endstation Notfallstation: Perzeption und Rezeption des Begriffs «palliativer Patient» sowie Ansätze zur Verbesserung der interdisziplinären Zusammenarbeit – ein Survey unter notfallmedizinischem Personal auf einer Schweizer Notfallstation

Hintergrund: Wegen sich verändernder Strukturen im Spitalbereich sowie im Bereich der Hausarztabdeckung als auch infolge zunehmenden Drucks auf das Gesundheitssystem kommen mehr Patienten auf die Notfallstationen, die aufgrund ihrer Grunderkrankung und des fortgeschrittenen Krankheitsstadiums von einem palliativen Behandlungskonzept profitieren. Eine wesentliche Herausforderung ist hierbei bereits die Definition von «Palliative Care» (PC), sowie die Klärung, was genau die palliative Versorgung beinhaltet. Häufig vermischt wird der Terminus «Palliative Care» mit «End of life care». Die vorliegende Studie ist eine Standortbestimmung im Universitären Notfallzentrum des Inselspitals Bern (UNZ), das jährlich rund 32 400 Patienten versorgt. Ziel ist es, mehr über den Wissensstand und die persönliche Einstellung der Mitarbeiter zu palliativen Fragestellungen und speziell zum Begriff «Palliative Care» zu erhalten. Methodik: Die Mitarbeiter des Universitären Notfallzentrums des Inselspitals Bern (UNZ) wurden mittels einer Online-Umfrage durch eine spitalexterne Fachinstitution interviewt. Diese Befragung basiert auf einem Instrument [1], das in einer vergleichbaren Studie auf einer Notfallstation in den USA entwickelt und validiert wurde. Resultate: Von 154 Mitarbeitenden (Pflege und Ärzte) füllten 60 Mitarbeitende die Befragung vollständig aus, entsprechend einer Antwortrate von 39%. Die Definition von Palliative Care (von n=60) war sehr heterogen und konnte in sechs Themenbereiche eingeteilt werden. Bei den Fragen nach spezifischen Leistungsangeboten äusserten die Mitarbeitenden den Wunsch nach einem erleichterten Zugang zu bestehenden Patientendaten, nach einem 24-Stunden-Palliative-Care-Konsiliardienst und nach mehr Besprechungszeit für Fragestellungen der PC im klinischen Alltag. Schlussfolgerungen: Die heterogene Begriffsdefinition von «Palliative Care» bestätigt sich. Es besteht kein klares Vorgehen, und zudem lässt sich ein Zeitmangel für ausführliche Patientengespräche in palliativen Situationen im UNZ feststellen. Der Patientenwunsch oder Patientenverfügungen mit DNR/DNI-Prozedere stehen nicht im Widerspruch zu den persönlichen Wertvorstellungen der meisten Mitarbeitenden. Die 24-Stunden-Verfügbarkeit eines spezialisierten PC-Teams, das Erarbeiten von Guidelines und vermehrtes Training für PC würde von den UNZ-Mitarbeitenden begrüsst.

Management of intestinal obstruction in advanced malignancy

Peer reviewed

A Preliminary look at hospice costs : three programs : Hillhaven Hospice, Tucson, Arizona, Kaiser-Permanente Hospice, Los Angeles (Norwalk), California, Riverside Hospice, Boonton, New Jersey.

"Administrative use only."

Health facilities directory.

Caption title.

Health information resources.

Contains annotated bibliographies and directories of health care organizations.

Adapting to life-threatening illness /

"Praeger special studies. Praeger scientific."

Wegbegleitung, Trost und Hoffnung. Interdisziplinäre Beiträge zum Umgang mit Sterben, Tod und Trauer

Sterben und Tod bedeuten meist das Hindurchgehen durch eine schwere Zeit sowohl für den Betroffenen selbst als auch für dessen Familienangehörige und Freunde. Umso wichtiger ist es, diesen Weg nicht alleine gehen zu müssen und dadurch Trost zu finden, dass in der Begleitung eine lebensstärkende Hoffnung zum Ausdruck kommt. Der vorliegende Band zum Thema Sterben, Tod und Trauer versammelt Beiträge aus unterschiedlichen fachlichen und beruflichen Perspektiven. Dabei wird die Soziale Arbeit als Bindeglied zwischen den unterschiedlichen Disziplinen herausgearbeitet. Das Buch macht deutlich, das Sterben und Trauern nicht nur mit großen Belastungen verbunden sind, sondern auch Chancen zu Integrität, Erkenntnis und persönlichem Wachstum eröffnen. Eine ganzheitliche, an den Bedürfnissen der Betroffenen orientierte Wegbegleitung von Haupt- und Ehrenamtlichen kann hierbei eine wichtige Hilfe darstellen. (DIPF/Orig.)

Care to terminal patients. Perception of nurses from the intensive care unit of a hospital

Objective. To identify the perception of nurses with regard to the process of providing care to patients in the context of hospice care. Method. Qualitative study using the methodological framework Collective Subject Discourse. A total of 18 nursing professionals of the adult intensive care unit of a public hospital in São Paulo, Brazil were interviewed between June and August 2012. Results. The process of providing care to terminal patients is permeated by negative, conflictive and mixed feelings. As regards communication, while the participants acknowledge its importance as a therapeutic resource, they also admit a lack of professional qualification. Conclusion. The interviewees have difficulties to deal with care provided to terminal patients. The qualification of these professionals needs to be improved, starting in the undergraduate program.

General practitioners’ experiences of the psychological aspects in the care of a dying patient

Objective: General practitioners (GPs) play an integral role in addressing the psychological needs of palliative care patients and their families. This qualitative study investigated psychosocial issues faced by GPs in the management of patients receiving palliative care and investigated the themes relevant to the psychosocial care of dying patients. Method: Fifteen general practitioners whose patient had been recently referred to the Mt. Olivet Palliative Home Care Services in Brisbane participated in an individual case review discussions guided by key questions within a semistructured format. These interviews focused on the psychosocial aspects of care and management of the referred patient, including aspects of the doctor/patient relationship, experience of delivering diagnosis and prognosis, addressing the psychological concerns of the patients' family, and the doctors' personal experiences, reactions, and responses. Qualitative analysis was conducted on the transcripts of these interviews. Results: The significant themes that emerged related to perceived barriers to exploration of emotional concerns, including spiritual issues, and the discussion of prognosis and dying, the perception of patients' responses/coping styles, and the GP's personal experience of the care (usually expressed in terms of identification with patient). Significance of results: The findings indicate the significant challenges facing clinicians in discussions with patients and families about death, to exploring the patient's emotional responses to terminal illness and spiritual concerns for the patient and family. These qualitative date indicate important tasks in the training and clinical support for doctors providing palliative care.

Factors associated with the wish to hasten death : a study of patients with terminal illness

Background. There is considerable debate regarding the clinical issues surrounding the wish to hasten death (WTHD) in the terminally ill. The clinical factors contributing to the WTHD need further investigation among the terminally ill in order to enhance understanding of the clinical assessment and treatment needs that underlie this problem. A more detailed understanding may assist with the development of appropriate therapeutic interventions. Method. A sample of terminally ill cancer patients (N=256) recruited from an in-patient hospice unit, home palliative care service and a general hospital palliative care consulting service from Brisbane Australia between 1998–2001 completed a questionnaire assessing psychological (depression and anxiety), social (family relationship, social support, level of burden on others) and the impact of physical symptoms. The association between these factors and the WTHD was investigated. Results. A high WTHD was reported by 14% of patients. A discriminant function analysis revealed that the following variables were associated with a high WTHD (P<0·001): higher levels of depressive symptoms, being admitted to an in-patient hospice setting, a greater perception of being a burden on others, lower family cohesion, lower levels of social support, higher levels of anxiety and greater impact of physical symptoms. Conclusions. Psychological and social factors are related to a WTHD among terminally ill cancer patients. Greater attention needs to be paid to the assessment of psychological and social issues in order to provide appropriate therapeutic interventions for terminally ill patients.