Palliativ vård i hemmet - Anhörigas upplevelser av att vårda en närstående med cancer : En Litteraturöversikt

Syfte: Syftet med litteraturöversikten var att beskriva anhörigas upplevelser av att vårda sin närstående i den palliativa vården i hemmet. Metod: Studien genomfördes som en litteraturöversikt. Insamlingen av vetenskapliga artiklar utfördes på databaserna CINAHL, PubMed, Vård I Norden och manuella sökningar utfördes i elektroniska tidskrifter. I resultatet användes sammanlagt 15 kvalitativa artiklar som svarade mot litteraturöversiktens syfte och frågeställning. Bedömningsmall med kvalitativ inriktning användes för att granska artiklarnas kvalité. Artiklar med medel till hög kvalité inkluderades i studiens resultat. Resultat: Resultatet byggde på fem huvudteman utifrån anhörigas upplevelser av palliativ vård, (1) anhörigas beslut att vårda en närstående i hemmet, beskriver anhörigas negativa syn på sjukhusmiljön och närståendes önskan om att avsluta sitt liv i hemmet. (2) positiva och negativa faktorer med vård i hemmet, beskriver trygghet i palliativa teamets tillgänglighet, negativ faktor var bland annat trötthet, isolering och brist på stöd. (3) ansvar för vården, att vara oförberedd på rollen som anhörigvårdare och 24 timmars ansvar för sin närstående. (4) relationen mellan anhörig och närstående, stöd i att kommunicera med sin närstående i existentiella frågor. (5) stöd från kvalificerad vårdpersonal, beskriver bristande information från kvalificerad vårdpersonal om sjukdomsförlopp och vårdarrollen. Psykiskt- socialt- och existentiellt stöd var bristfälligt och som anhöriga uttryckte behov av. Konklusion: De främsta faktorerna till valet att bli anhörigvårdare grundade sig i viljan att uppfylla närståendes önskan att få spendera sista tiden i hemmet och att sjukhusmiljön sågs som kall och opersonlig. Anhöriga önskade socialt- psykiskt- och existentiellt stöd.

Anhörigas erfarenheter av palliativ vård i hemmet – en litteraturöversikt

Bakgrund: Med palliativ vård avses den vård som patienten får i livets slutskede, där syftet är att lindra lidande och främja livskvalitet. Den palliativa vården i hemmet har under senare år ökat, dels på grund av att tillgången av kvalificerad vård genom hemsjukvård har utvecklats. Sjuksköterskans roll inom den palliativa vården är att tillgodose patientens men även anhörigas behov. Syfte: Syftet var att beskriva anhörigas erfarenheter av palliativ vård då en patient vårdas i hemmet, anhörigas behov av stöd samt hur situationen påverkar vardagen. Metod: En litteraturöversikt med kvalitativ ansats. Resultatet är baserat på 13 vetenskapliga artiklar som identifierats via databaserna Cinahl, PubMed och Web of Science. Resultat: Resultatet visar att beslutet om den palliativa vården ska ske i hemmet fattas av patienten men är beroende av vilken relation patient och anhörig har till varandra. Att vara tillgänglig 24 timmar om dygnet runt kan vara påfrestande för anhöriga som upplever både fysiska- och psykiska besvär av situationen. Det ansågs viktigt att bibehålla vardagliga rutiner trots att döden är närvarande. Anhöriga behöver stöd från vårdpersonal, familj och vänner för att orka med situationen. Slutsats: Anhörigas behov är individuella. Vårdpersonal behöver mer kunskap om anhörigas behov inom den palliativa vården för att ge ett bättre bemötande till anhöriga när den palliativa vården bedrivs i hemmet.

Palliative care at home: general practitioners working with palliative care teams

Home care is the preferred option for most people with a terminal illness. Providing home care relies on good community-based services, and a general practice workforce competent in palliative care practice and willing to accommodate patients' needs. Structured palliative care training of general practitioners is needed at undergraduate and postgraduate level, with attention to barriers to teamwork and communication. Good palliative care-can be delivered to patients at home by GPs (supported by specialist palliative care teams) and community nurses, with access to an inpatient facility when required. To optimise patient care, careful planning and good communication between all members of the healthcare team is crucial.

How well do general practitioners deliver palliative care? A systematic review

General practitioners (GPs) deliver the majority of palliative care to patients in the last year of life. This article seeks to examine the nature of GP care, perceptions of the GPs themselves and others of that care, the adequacy of palliative care training, issues relating to accessibility of GPs to palliative care patients, and strategies that may be of use in encouraging more effective delivery of palliative care by GPs. Medline and PubMed databases from 1966 to 2000 were searched, and 135 references identified. Sixty-six of these described studies relevant to GP palliative care. GPs value this part of their work. Most of the time, patients appreciate the contribution the GP makes to palliative care particularly if the GP is accessible, takes time to listen, allows patient and carer to ventilate their feelings, and is seen to be making efforts made regarding symptom relief. However, reports from bereaved relatives suggest that palliative care is performed less well in the community than in other settings. GPs express discomfort about their competence to perform palliative care adequately. They tend to miss symptoms which are not treatable by them, or which are less common. However, with appropriate specialist support and facilities, GPs have been shown to deliver sound and effective care. GP comfort working with specialist teams increases with exposure to this form of patient management, as does the understanding of the potential other team members have in contributing to the care of the patient. Formal arrangements engaging GPs to work with specialist teams have been shown to improve functional outcomes, patient satisfaction, improve effective use of resources and improve effective physician behaviour in other areas of medicine. Efforts by specialist services to develop formal involvement of GPs in the care of individual patients, may be an effective method of improving GP palliative care skills and appreciation of the roles specialist services can play.

General Palliative Care Guidance for Control of Pain in Patients with Cancer (PDF 56 KB)

This document is intended to be a practical clinical guideline for the control of pain in patients with cancer. Its target group is hospital staff, primary care team members and nursing home staff. It attempts to apply the clinical principles outlined in the document 'Control of Pain in Patients with Cancer' published by "Scottish Intercollegiate Guidelines Network" (SIGN). This document has been adapted with the permission of SIGN. Rigour of Development A full evidence based reference list is available with the SIGN document. This can be accessed at www.sign.ac.uk. Contents not based on the SIGN document are referenced separately. This document has been developed as one part of the recommendations identified in the Regional Review of Palliative Care Services, 'Partnerships in Caring'. The development of these Pain Guidelines was led by the Northern Ireland Group of the National Council for Hospice and Specialist Palliative Care, whose membership is detailed in Appendix 4. They will be reviewed and updated in two years. A wide consultation process with potential users was undertaken. åÊ åÊ

The response of a Swiss university hospital's palliative care consult team to assisted suicide within the institution.

In January 2006 the Centre Hospitalier Universitaire Vaudois (CHUV), a large university hospital in Lausanne, Switzerland, became the first hospital in Switzerland to allow assisted suicide (AS) in exceptional cases within its walls. However, euthanasia is illegal. This decision has posed several ethical and practical dilemmas for the hospital's palliative care consult service. To address these, the team embarked on a formal process of open dialogue amongst its members with the goal of identifying a collective response and position. This process involved meetings every 4 to 6 weeks over the course of 10 months. An iterative process unfolded. One of the principal dilemmas relates to finding a balance between the team's position against AS and the patient's autonomy and the institution's directive. Although all team members expressed opposition to AS, there were mixed opinions as to whether or not the team members should be present during the act if requested so by patients. Some thought this could be misinterpreted as complicity in the act and could send out mixed messages to the public and other health professionals about palliative care. Others felt that the team's commitment to nonabandonment obliged them to be present even if they did not provide the drug or give any advice or assistance. The implications of nonabandonment are explored, as are several other questions such as whether or not the teams are obliged to provide detailed information on AS when requested by patients.

Effectiveness of a specialized outpatient palliative care service as experienced by patients and caregivers.

Abstract Objectives: In Germany since 2007 patients with advanced life-limiting diseases are eligible for Specialized Outpatient Palliative Care (SOPC). To provide this service, SOPC teams have been established as a new facility in the health care system. The objective of this study was to evaluate the effectiveness of one of the first SOPC teams based at the Munich University Hospital. Methods: All patients treated by the SOPC team and their primary caregivers were eligible for this prospective nonrandomized study. The main topics of the surveys before and after involvement of the SOPC team were: for patients, the assessment of symptom burden (Minimal Documentation System for Palliative Medicine, MIDOS), satisfaction with quality of palliative care (Palliative Outcome Scale, POS), and quality of life (McGill Quality of Life Questionnaire, MQOL); for caregivers, burden of care (Häusliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and quality of life (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Results: Of 100 patients treated between April and November 2011, 60 were included in the study (median age 67.5 years, 55% male, 87% oncological diseases). In 23 of 60 patients, only caregivers could be interviewed. The median interval between the first and second interview was 2.5 weeks. Quality of life increased significantly in patients (p<0.05) and caregivers (p<0.001), as did the patients' perception of quality of palliative care (POS, p<0.001), while the caregivers' psychological distress and burden of care significantly decreased (HADS, p<0.001; HPS, p<0.001). Conclusions: The involvement of an SOPC team leads to a significant improvement in the quality of life of patients and caregivers and can lower the burden of home care for the caregivers of severely ill patients.

Botucatu, Brazil: A Regional Community Palliative Care Model

The Pain Management and Palliative Care Service in the Department of Anesthesia at Botucatu Medical School, UNESP is a pioneer in Brazil. Based on an interdisciplinary team that provides specialized inpatient, ambulatory outpatient, and home care to patients in Botucatu and the surrounding region, the service is also able to provide extensive educational opportunities in pain management and palliative care for medical students, anesthesia residents, practicing anesthetists, and nurses. © 2007 U.S. Cancer Pain Relief Committee.

Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

A Palliative Prognostic Score for Terminally Ill Children and Adolescents With Cancer

Background. The loss of a child is considered the hardest moment in a parent`s life. Studies addressing length of survival under pediatric palliative care are rare. The aim of this study was to improve a survival prediction model for children in palliative care, as accurate information positively impacts parent and child preparation for palliative care. Procedure. Sixty-five children referred to a pediatric palliative care team were followed from August 2003 until December 2006. Variables investigated (also included in previous studies) were: diagnosis, home care provider, presence of anemia, and performance status score given by the home care provider. Clinical variables such as symptom number were also used to test the score`s ability to pre-validated using the above variables. The number of symptoms at transition to palliative care does not improve the score`s predictive ability. The sum of the single scores gives an overall score for each patient, dividing the population into three groups by probability of 60-day survival: Group A 80.0%, Group B 38.0%, and Group C 28.5% (P < 0.001). Conclusion. A pediatric palliative care score based on easily accessible variables is statistically significant in multivariate analysis. Factors that increase accuracy of life expectancy prediction enable adequate information to be given to patients and families, contributing to therapeutic decision-making issues. Pediatr Blood Cancer. 2010;55:1167-1171. (C) 2010 Wiley-Liss, Inc.

Psychosocial care for the caregivers of primary malignant brain tumor patients.

Despite clinical experience that suggests a high burden of care among relatives of individuals with a primary malignant brain tumor (PMBT), little is known about their actual needs. In this study, the caregivers' personal experiences, quality of life, burden of care, and psychological well-being were examined. Fifty-nine percent did not receive any financial aid for home care, 33% had increased risk for psychosomatic problems, 45% had anxiety, and 33% increased depression levels. The caregiver's quality of life was most strongly affected by the burden of care (p < .001) and the patient's mental state (p < .03). To improve the situation, empathetic professionals and an early implementation of palliative care and social work are required.

Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians.

Objectives Medical futility at the end of life is a growing challenge to medicine. The goals of the authors were to elucidate how clinicians define futility, when they perceive life-sustaining treatment (LST) to be futile, how they communicate this situation and why LST is sometimes continued despite being recognised as futile. Methods The authors reviewed ethics case consultation protocols and conducted semi-structured interviews with 18 physicians and 11 nurses from adult intensive and palliative care units at a tertiary hospital in Germany. The transcripts were subjected to qualitative content analysis. Results Futility was identified in the majority of case consultations. Interviewees associated futility with the failure to achieve goals of care that offer a benefit to the patient's quality of life and are proportionate to the risks, harms and costs. Prototypic examples mentioned are situations of irreversible dependence on LST, advanced metastatic malignancies and extensive brain injury. Participants agreed that futility should be assessed by physicians after consultation with the care team. Intensivists favoured an indirect and stepwise disclosure of the prognosis. Palliative care clinicians focused on a candid and empathetic information strategy. The reasons for continuing futile LST are primarily emotional, such as guilt, grief, fear of legal consequences and concerns about the family's reaction. Other obstacles are organisational routines, insufficient legal and palliative knowledge and treatment requests by patients or families. Conclusion Managing futility could be improved by communication training, knowledge transfer, organisational improvements and emotional and ethical support systems. The authors propose an algorithm for end-of-life decision making focusing on goals of treatment.

Why cancer patients choose in-patient complementary therapy in palliative care: a qualitative study at Arokhayasala Hospice in Thailand

Cancer patients often choose complementary and alternative medicine (CAM) in palliative care, often in addition to conventional treatment and without medical advice or approval. Herbal medicines (HM) are the most commonly used type of CAM, but rarely available on an in-patient basis for palliative care. The motivations which lead very ill patients to travel far to receive such therapies are not clear. A qualitative study was therefore carried out to investigate influences on choosing to attend a CAM herbal hospice, to identify cancer patients’ main concerns about end-of-life care. Semi-structured interviews with 32 patients were conducted and analysed using thematic analysis. Patients were recruited from Arokhayasala, a Buddhist cancer hospice in Thailand which provides CAM, in the form of HM, a restricted diet, Thai yoga, deep-breathing exercises, meditation, chanting, Dhamma, laughter and music therapy, free-of-charge. The main factors influencing decision-making were a positive attitude towards HMs and previous use of them, dissatisfaction with conventional treatment, the home environment and their relationships with hospital doctors. Patients’ own perceptions and experiences were more important in making the decision to use CAM, and especially HM, in palliative cancer care than referral by healthcare professionals or scientific evidence of efficacy. Patients were prepared to travel far and live away from home to receive such care, especially as it was cost-free. In view of patients’ previously stated satisfaction with the regime at the Arokhayasala, these findings may be relevant to the provision of in-patient cancer palliative care to other patients.

THE KNOWLEDGE ABOUT COMMUNICATION STRATEGIES WHEN TAKING CARE OF THE EMOTIONAL DIMENSION IN PALLIATIVE CARE

The aim of this qualitative study was to investigate existing knowledge and the use of communication strategies in emotional care for patients receiving palliative care in Brazil. It was performed from August, 2008, to July, 2009, with 303 health professionals who worked or had frequent contact with patients receiving palliative care, using a questionnaire. Data was submitted to descriptive and analytical statistical treatment. The professionals reported not knowing about communication strategies, showing a significant difference (p-value 0.0011) in comparing subjects with and without previous training in palliative care, showing that those who had received proper training know/use more communication strategies when providing care for their patients on an emotional level. The strategies most often cited were: careful listening, verbal reaffirmation of care, using open questions, and affective touch. We conclude that there is little knowledge and poor use of communication strategies among health professionals in towards the emotional care of patients receiving palliative care.