Showing papers in "Palliative Medicine in 2010"

The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research.

Abstract: Spirituality and spiritual care are gaining increasing attention but their potential contribution to palliative care remains unclear. The aim of this study was to synthesize qualitative literature on spirituality and spiritual care at the end of life using a systematic (‘meta-study’) review. Eleven patient articles and eight with healthcare providers were included, incorporating data from 178 patients and 116 healthcare providers, mainly from elderly White and Judaeo-Christian origin patients with cancer. Spirituality principally focused on relationships, rather than just meaning making, and was given as a relationship. Spirituality was a broader term that may or may not encompass religion. A ‘spirit to spirit’ framework for spiritual care-giving respects individual personhood. This was achieved in the way physical care was given, by focusing on presence, journeying together, listening, connecting, creating openings, and engaging in reciprocal sharing. Affirmative relationships supported patients, enabling them to respond to their spiritual needs. The engagement of family caregivers in spiritual care appears underutilized. Relationships formed an integral part of spirituality as they were a spiritual need, caused spiritual distress when broken and were the way spiritual care was given. Barriers to spiritual care include lack of time, personal, cultural or institutional factors, and professional educational needs. By addressing these, we may make an important contribution to the improvement of patient care towards the end of life.

Part 2: Home based family caregiving at the end of life: a comprehensive review of published qualitative research (1998 - 2008)

Abstract: The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998—2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of ‘family caregiving’, ‘end of life’, and ‘needs’ are ...

Preliminary report of the integration of a palliative care team into an intensive care unit.

Abstract: Nearly half of Americans who die in hospitals spend time in the intensive care unit (ICU) in the last 3 days of life. Minority patients who die in the ICU are less likely to formalize advance directives and surviving family members report lower satisfaction with the provision of information and sensitivity to their cultural traditions at the end-of-life. This is a descriptive report of a convenience sample of 157 consecutive patients served by a palliative care team which was integrated into the operations of an ICU at Montefiore Medical Center in the Bronx, New York, from August 2005 until August 2007. The team included an advance practice nurse (APN) and social worker. A separate case-control study was conducted comparing the length of hospital stay for persons who died in the ICU during the final 6 months of the project, prior to and post-palliative care consultation for 22 patients at the hospital campus where the project team was located versus 24 patients at the other campus. Pharmaco-economic data were evaluated for 22 persons who died with and 43 who died without a palliative care consultation at the intervention campus ICU to evaluate whether the project intervention was associated with an increase in the use of pain medications or alterations in the use of potentially non-beneficial life-prolonging treatments in persons dying in the ICU. Data was abstracted from the medical record with a standardized chart abstraction instrument by an unblinded research assistant. Interviews were conducted with a sample of family members and ICU nurses rating the quality of end-of-life care in the ICU with the Quality of Dying and Death in the ICU instrument (ICUQODD), and a family focus group was also conducted. Forty percent of patients were Caucasian, 35% were African American or Afro-Caribbean, 22% Hispanic and 3% were Asian or other. Exploration of the patients' and families' needs identified significant spiritual needs in 62.4% of cases. Education on the death process was provided to 85% of families by the project team. Twenty-nine percent of patients were disconnected from mechanical ventilators following consultation with the Palliative Care Service (PCS), 15.9% of patients discontinued the use of inotropic support, 15.3% stopped artificial nutrition, 6.4% stopped dialysis and 2.5% discontinued artificial hydration. Recommendations on pain management were made for 51% of the project's patients and symptom management for 52% of patients. The project was associated with an increase in the rate of the formalization of advance directives. Thirty-three percent of the patients who received PCS consultations had 'do not resuscitate' orders in place prior to consultation and 83.4% had 'do not resuscitate' orders after the intervention. The project team referred 80 (51%) of the project patients to hospice and 55 (35%) patients were enrolled on hospice, primarily at the medical center. The mean time from admission to palliative care consultation at the project site was 2.8 days versus 15.5 days at the other campus (p = 0.0184). Median survival times from admission to the medical center were not significantly different when stratified by palliative care consultation status: 12 days for the control group (95% CI 8-18) and 13.5 days for the intervention group (95% CI 8-20). Median charges for the use of opioid medications were higher (p = 0.01) for the intervention group but lower for use of laboratory (p = 0.004) and radiology tests (p = 0.027). We conclude that the integration of palliative care experts into the operation of critical care units is of benefit to patients, families and critical care clinicians. Preliminary evidence suggest that such models may be associated with improved quality of life, higher rates of formalization of advance directives and utilization of hospices, as well as lower use of certain non-beneficial life-prolonging treatments for critically ill patients who are at the end of life.

Review: Improving end-of-life care: a critical review of the Gold Standards Framework in primary care

Abstract: The Gold Standards Framework aims to optimize primary palliative care for patients nearing the end of their lives. This paper critically reviews the impact of the Gold Standards Framework since its introduction in 2001 and indicates direction for further research and development. Literature was accessed using specific databases and by contacting subject area specialists. The resultant literature was appraised using an established framework to evaluate healthcare interventions. Fifteen documents were reviewed. The quality of evidence is constrained by methodological limitations, but consistently demonstrates that the Gold Standards Framework improves general practice processes, co-working and the quality of palliative care. However, implementation of the Gold Standards Framework is variable and the direct impact on patients and carers is not known. We conclude that the Gold Standards Framework has considerable potential to improve end-of-life care, but further work is needed to support uptake and consistency of implementation. Additional evidence about patient and carer outcomes will add to existing insights.

Review: the quality of dying and death: a systematic review of measures.

Abstract: To determine whether modern medicine is facilitating 'good' deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950-2008), Healthstar (1966-2008), and CINAHL (1982-2008) were searched using keyword terms 'quality of dying/death' and 'good/bad death'. Papers that described a quality of dying and death measure or that aimed to measure the quality of dying and death were selected for review. The evaluation criteria included a description of the measure development (validated or ad hoc), the provision of a definition of quality of dying and death, an empirical basis for the measure, the incorporation of multiple domains and the subjective nature of the quality of dying and death construct, and responsiveness to change. Eighteen measures met the selection criteria. Six were published with some description of the development process and 12 were developed ad hoc. Less than half were based on an explicit definition of quality of dying and death and even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The specified duration of the dying and death phase ranged from the last months to hours of life. Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand the factors influencing the ratings of the quality of dying and death.

Evaluation of quality-of-life measures for use in palliative care: A systematic review

Abstract: Purpose: In this literature review we evaluated the feasibility and clinimetric quality of quality-of-life (QoL) measurement instruments suitable for use in palliative care. Methods: We conducted a systematic literature review to identify instruments measuring (at least one domain of) QoL. We selected articles that present data on patients receiving palliative care and at least one measurement property. A checklist was used to describe the characteristics of the instruments, and a widely accepted rating list was used to evaluate the clinimetric aspects. Results: 29 instruments were identified and evaluated, most of which were targeted at palliative patients in general. None of the instruments demonstrated satisfactory results for all measurement properties. Fourteen instruments received positive ratings for construct validity. Thirteen instruments were tested for reliability, but only two were tested adequately and had positive results (ICC>0.70). Responsiveness was not tested adequately for any of the instruments. Very few of the studies provided information on the interpretation of the scores. Overall, the MQOL, followed by the QUAL-E and the QODD, received the best ratings for their measurement properties. Conclusions: Many measurement instruments were identified, but most had not yet been adequately evaluated. The evaluation of existing instruments with good content validity should have priority over the development of new instruments.

Symptom clusters: myth or reality?

Abstract: Clinical experience suggests that many symptoms occur together. In this paper, we examine the rationale and evidence base for symptom clusters in different medical fields, particularly the cluster phenomenon in cancer. Cancer symptom clusters are a reality. Various symptoms that cluster clinically have also been verified statistically. Specific clusters such as nausea-vomiting, anxiety-depression, and cough-dyspnea are evident on both clinical observation and in research investigation. Fatigue-pain and fatigue-insomnia-pain have also been demonstrated statistically as clusters. Another proposed cluster 'depression-fatigue-pain' seems relevant to clinical practice. Other clusters may serve only as theoretical models that illustrate possible common biological etiologies in cancer; they need to be validated in future research. Analysis of the literature is complicated by considerable inconsistencies across studies. Discrepancies between clinically defined and statistically obtained clusters raise important questions. We must consider the analytical techniques used, and how methodology might influence cluster occurrence and composition. Further research is warranted to establish universally accepted statistical methods and assessment tools for symptom cluster research.

A systematic review of instruments related to family caregivers of palliative care patients.

Abstract: Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.

The integrated implementation of two end-of-life care tools in nursing care homes in the UK: an in-depth evaluation

Abstract: In economically developed countries there is a rapidly increasing number of older people living and dying in care homes. The relative isolation of nursing care homes from the development of palliative care, the poor retention and recruitment of staff, and the lack of medical cover, hinder the provision of quality end-of-life care. End-of-life care strategies internationally highlight the benefit of using tools to help improve end-of-life care in care homes. All seven private nursing care homes within one district in Scotland undertook to implement, as a package, two end-of-life care tools, namely, the Gold Standards Framework for Care Homes (GSFCH) and an adapted Liverpool Care Pathway for Care Homes (LCP). A model of high facilitation, visiting the homes every 10-14 days with significant in-house staff training, was used to implement the 18-month programme. The notes of 228 residents who had died prior to and during the project were examined, alongside a staff audit looking at the effect that the project had on practice. A nurse researcher undertook qualitative interviews of bereaved relatives, pre-/post-implementation. This paper reports the results of an in-depth evaluation of professional practices and residents outcomes. There was a highly statistically significant increase in use of Do Not Attempt Resuscitation (DNAR) documentation, advance care planning and use of the LCP. An apparent reduction in unnecessary hospital admissions and a reduction in hospital deaths from 15% deaths pre-study to 8% deaths post-study were also found. Further work is needed to assess the optimum input required for successful implementation.

Single Question in Delirium (SQiD): testing its efficacy against psychiatrist interview, the Confusion Assessment Method and the Memorial Delirium Assessment Scale:

Abstract: In this study we address the research question; How sensitive is a single question in delirium case finding? Of 33 ‘target’ admissions, consent was obtained from 21 patients. The single question: ‘...

Caring for someone with high-grade glioma: a time of rapid change for caregivers.

Abstract: Patients diagnosed with high-grade gliomas have a poor prognosis and limited life expectancy, and often experience rapid decline in function. Caring for a patient with high-grade glioma is particularly stressful because caregivers are faced not only with cancer-related caregiving issues, but also issues relating to caring for someone with cognitive impairment. This study aimed to articulate the experiences of family caregivers of people diagnosed with high-grade glioma and to describe their information and support needs. A grounded theory method was adopted. Twenty-one family caregivers of people with high-grade glioma were interviewed using a semi-structured interview guide. A constant comparison method of data analysis was employed. A central theme, A Time of Rapid Change and two sub-themes, Renegotiating Relationships and Learning to be a Caregiver, emerged to describe the experiences of participants. Caregiving was characterised by numerous role and life changes from the moment of diagnosis. Caregivers in this study reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma.

An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease

Abstract: Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

Symptom severity and distress in advanced cancer

Abstract: We determined the relationship between symptom severity and distress for multiple cancer symptoms, and examined patient demographic influences on severity and distress in advanced cancer. A Cochran-Armitage trend test determined whether symptom distress increased with severity. Chi-square, Fisher's exact test and logistic regression analysis examined moderate/severe ('clinically important') and distressful symptoms by age ( 65), gender, primary site group, and ECOG performance status. Forty-six symptoms were analyzed in 181 individuals. More than 50% of individuals with clinically important symptoms rated them as distressful. The median percentage of individuals with mild but still distressful symptoms was 25%, with a range of 0% (bad dreams) to 73% (sore mouth). In both univariate and multivariate analysis, younger (

End-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families

Abstract: The aims of this qualitative study were to identify patients' and family members' experiences of acute stroke and their preferences for end-of-life care. Twenty-eight purposely sampled patients with an acute stroke who had high (n = 13) and low (n = 15) disability were selected from 191 sequential cases admitted to two general hospitals in north-east England. In addition, 25 family members of other stroke patients were recruited. Views about current stroke services and preferences for end-of-life care were elicited in semi-structured interviews. Communication between patients and family members and healthcare professionals was consistently highlighted as central to a positive experience of stroke care. Honesty and clarity of information was required, even where prognoses were bleak or uncertain. Patients and family members appeared to attach as much importance to the style of communication as to the substance of the transfer of information. Where decisions had been made to shift the focus of care from active to more passive support, families, and where possible patients, still wished to be included in ongoing dialogue with professionals. Where patients were thought to be dying, family members were keen to ensure that the death was peaceful and dignified. Families reported few opportunities for engagement in any form of choice over place or style of end-of-life care. No family member reported being offered the possibility of the patient dying at home. Uncertainty about prognosis is inevitable in clinical practice, and this can be difficult for patients and families. Our findings demonstrate the importance of improving communication between patient, family and health professionals for seriously ill patients with stroke in UK hospitals.

Creating social work competencies for practice in hospice palliative care

Abstract: Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care. Despite the prominent and longstanding position of social work in this area, the role and functions of social workers had not been clearly defined. A Canadian task group of social work practitioners and educators utilized a modified Delphi process to consult front line clinicians nationally, and thereby achieved consensus regarding the identification and description of eleven core competencies in Hospice Palliative Care. These competencies are relevant for social workers at different experience levels across care settings. They can be used to inform social work practice, as well as professional development and educational curricula in this area.

Transitions between care settings at the end of life in The Netherlands: results from a nationwide study

Abstract: Multiple transitions between care settings in the last phase of life could jeopardize continuity of care and overall end-of-life patient care. Using a mortality follow-back study, we examined the nature and prevalence of transitions between Dutch care settings in the last 3 months of life, and identified potential characteristics associated with them. During the 2-year study period, 690 registered patients died 'totally expectedly and non-suddenly'. These made 709 transitions in the last 3 months, which involved a hospital two times out of three, and covered 43 distinct care trajectories. The most frequent trajectory was home-to-hospital (48%). Forty-six percent experienced one or more transitions in their last month of life. Male gender, multi-morbidities, and absence of GP awareness of a patient's wish for place of death were associated with having a transition in the last 30 days of life; age of or = 7 days. Although the majority of the 'totally expected and non-sudden' deaths occurred at home, transitions to hospitals were relatively frequent. To minimize abrupt or frequent transitions just before death, timely recognition of the palliative phase of dying is important.

‘The worst thing about hospice is that they talk about death’: contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers

Abstract: Hospice care is promoted as a model for improving end of life care and decreasing burden on caregivers. However, hospice use is low in Latinos and little is known about how Latinos make hospice decisions and experience hospice once enrolled. We used qualitative methods to conduct in-depth interviews and focus groups with 15 Latino bereaved hospice family caregivers and 15 White Non-Latino bereaved hospice family caregivers to describe hospice experiences and evaluate whether cultural factors affected the experience. We identified differences in decision-making and caregiving experience that were influenced by culture. For example, cultural values of denial, secrecy about prognosis and a collective, family-centered system influenced hospice decisions and experience in Latinos but not Non-Latinos. This study identifies a significant dilemma; that is, how to discuss hospice with a patient and family who prefer not to discuss a terminal prognosis. Future research is needed to extend these preliminary results; such results may be useful for designing interventions to improve end of life care and caregiving in Latinos.

Cost variations in ambulatory and home-based palliative care

Abstract: Restructuring health care in Canada has emphasized the provision of ambulatory and home-based palliative care. Acquiring economic evidence is critical given this trend and its tremendous demands on family caregivers. The purposes of this study were: 1) to comprehensively assess the societal costs of home-based palliative care; and 2) to examine the socio-demographic and clinical factors that account for variations in costs over the course of the palliative trajectory. One hundred and thirty-six family caregivers were interviewed every two weeks from time of palliative referral until death. Information regarding appointments, travel and out-of-pocket expenses, time devoted to caregiving, as well as demographic and clinical characteristics were measured. The mean monthly cost of care per patient was $24,549 (2008 CDN$). Family caregivers' time costs comprised most costs (70%). Multivariable linear regression indicated that costs were greater for patients who: had lower physical functioning (p < 0.001); lived with someone (p = 0.007); and when the patients approached death (p = 0.021). Information highlighting the variation in costs across individuals may aid policy makers and mangers in deciding how to allocate resources. Greater clarity regarding costs over the course of the palliative trajectory may improve access to care.

Reliability testing of the FAMCARE-2 scale: measuring family carer satisfaction with palliative care.

Abstract: Measuring carers' perceived satisfaction with services is crucial if services are going to continually improve their responsiveness to the needs of those they serve. The aim of this study was to assess the reliability of the next generation FAMCARE tool, which was adapted to reflect inpatient and team-based care using palliative care services who are participating in the Australian Palliative Care Outcomes Collaboration. FAMCARE-2 was distributed to a consecutive cohort of carers whilst in the caregiving role nationally. Analyses of internal consistency, generated structure and relationships of satisfaction with service provision by three demographic variables were undertaken. A total of 497 carers were recruited from 29 palliative care services across Australia, a mix of inpatient and community services. The scale achieved a high level of internal consistency (Cronbach's alpha coefficient of 0.93) and item-to-total correlation coefficient of 0.49-0.72. Factor analysis of FAMCARE-2 revealed a 4-factor structure (management of physical symptoms and comfort, provision of information, family support and patient psychological care). Results of the survey indicated satisfaction with service provision across the FAMCARE-2 subscales. Older, female carers without a culturally and linguistically diverse background were more satisfied with service provision. We conclude that FAMCARE-2 is a psychometrically sound instrument useful for measuring family carer satisfaction with service provision in a variety of palliative care settings.

Bereavement needs assessment in specialist palliative care: A review of the literature

Abstract: Bereavement needs assessment for specialist palliative care services has been highlighted as important by NICE guidance on palliative care for adults with cancer. Identifying and implementing appropriate bereavement measurement tools has remained a challenge. This paper identifies and reviews bereavement measurement tools to determine their suitability for use within bereavement services and hospice settings. Cochrane, MEDLINE, PsycINFO and CINAHL, electronic databases were searched, yielding 486 papers. From fifty-nine full text papers appraised, 10 measurement tools were analysed in detail. Some tools had been tested on specific populations which limited transferability to specialist palliative care settings; some lacked adequate theoretical links and were not effective in discriminating between normal and complicated grief reactions; and some lacked clear evidence of validity or reliability. Based on these criteria, conclusions are drawn about the suitability of particular tools for UK bereavement services and hospice settings where intervention is delivered by both trained professionals and volunteers.

The development and validation of a novel questionnaire to measure patient and family satisfaction with end-of-life care: the Canadian Health Care Evaluation Project (CANHELP) Questionnaire

Abstract: The purpose of this study was to further validate a novel instrument to measure satisfaction with end-of-life care, called the Canadian Health Care Evaluation Project (CANHELP) questionnaire. Data were collected by a cross-sectional survey of patients who had advanced, life-limiting illnesses and their family caregivers, and who completed CANHELP, a global rating of satisfaction, and a quality of life questionnaire. We conducted factor analysis, assessed internal consistency using Cronbach's alpha, and evaluated construct validity by describing the correlation amongst CANHELP, global rating of satisfaction and the quality of life questionnaire scores. There were 361 patient and 193 family questionnaires available for analysis. In the factor analysis, we identified six easily interpretable factors which explained 55.4% and 60.2% of the variance for the patient and caregiver questionnaire, respectively. For the patient version, the subscales derived from these factors were Relationship with Doctors, Illness Management, Communication, Decision-Making, Role of the Family, and Your Well-being. For the family questionnaire, the factors were Relationship with Doctors, Characteristics of Doctors and Nurses, Illness Management, Communication and Decision-Making, Your Involvement, and Your Well-being. Each subscale for each questionnaire had acceptable to excellent internal consistency (Cronbach's alpha ranged from 0.69-0.94). We observed good correlations between the CANHELP overall satisfaction score and global rating of satisfaction (correlation coefficient 0.49 and 0.63 for patient and family, respectively) which was greater than the correlations between CANHELP and the quality of life instruments. We conclude that the CANHELP Questionnaire is a valid and internally consistent instrument to measure satisfaction with end-of-life care.

Learning from dying patients during their final days: life reflections gleaned from dignity therapy

Abstract: Dignity therapy is a novel therapeutic approach designed to decrease suffering, enhance quality of life and bolster a sense of dignity for patients approaching death. The benefits of dignity therapy were previously documented in a sample of 100 terminally ill patients. One of the products of dignity therapy is a transcript of the edited therapy session(s). In this qualitative study, 50 of the 100 (17 from Winnipeg, Manitoba, Canada, and 33 from Perth, Australia) dignity therapy transcripts were randomly drawn, and independently coded and analysed by three investigators using a grounded theory approach. The transcripts revealed that dignity therapy serves to provide a safe, therapeutic environment for patients to review the most meaningful aspects of their lives in such a manner that their core values become apparent. The most common values expressed by the patients included ‘Family’, ‘Pleasure’, ‘Caring’, ‘A Sense of Accomplishment’, ‘True Friendship’, and ‘Rich Experience’. Exemplars of each of these values illustrate the pervasive, defining role of values in our lives. The findings are discussed in terms of values theory, the role of dignity therapy, and consideration of values clarification in clinicians’ efforts to enhance the dignity of terminally ill patients.

At-home palliative sedation for end-of-life cancer patients.

Abstract: Using a decision-making and treatment checklist developed to facilitate the at-home palliative sedation process, we assessed the incidence and efficacy of palliative sedation for end-of-life cancer patients with intractable symptoms who died at home We retrospectively reviewed the medical records of 370 patients who were followed by a palliative home care team Twenty-nine of 245 patients (12%) who died at home had received palliative sedation The mean age of the patients who received palliative sedation was 58 +/- 17 years, and the mean age of the patients who did not receive palliative sedation was 69 +/- 15 years (p = 0002) No other differences were detected between patients who did or did not receive palliative sedation The most common indications for palliative sedation were delirium (62%) and dyspnea (14%) Twenty-seven patients (93%) received midazolam for palliative sedation (final mean dose of 74 mg), and two (7%) received levomepromazine (final mean dose of 125 mg) The mean time between palliative sedation initiation and time of death was 26 days In 13 of the cases (45%), the palliative sedation decision was made with the patient and his or her family members, and in another 13 patients (45%), the palliative sedation decision was made only with the patient's family members We concluded that palliative sedation may be used safely and efficaciously to treat dying cancer patients with refractory symptoms at home

Recognizing that it is part and parcel of what they do: teaching palliative care to medical students in the UK.

Abstract: In their first year of work, newly qualified doctors will care for patients who have palliative care needs or who are dying, and they will need the skills to do this throughout their medical career. The General Medical Council in the United Kingdom has given clear recommendations that all medical students should receive core teaching on relieving pain and distress together with caring for the terminally ill. However, medical schools provide variable amounts of this teaching; some are able to deliver comprehensive programmes whilst others deliver very little. This paper presents the results of a mixed methods study which explored the structure and content of palliative care teaching in different UK medical schools, and revealed what coordinators are trying to achieve with this teaching. Nationally, coordinators are aiming to help medical students overcome the same fears held by the lay public about death, dying and hospices, to convey that the palliative care approach is applicable to many patients and is part of every doctors' role, whatever their specialty. Although facts and knowledge were thought to be important, coordinators were more concerned with attitudes and helping individuals with the transition from medical student to foundation doctor, providing an awareness of palliative medicine as a specialty and how to access it for their future patients.

Disease trajectories and ACT/RCPCH categories in paediatric palliative care.

Abstract: The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to encompass all Association for Children’s Palliative Care (ACT)/Royal College of Paediatrics and Child Health (RCPCH) categories, using a schedule developed from focus groups of professionals. Thirty out of 76 families agreed to participate. Four of these were unsuitable. In nine out of 26 families, their child had died. In eight out of the 26, two individuals were interviewed. Twenty-four mothers, nine fathers, one sibling and two foster-carers were interviewed in total. The interview schedule was developed from data from four themed focus groups, comprising 25 professionals from 14 backgrounds. Thirty-four milestones in five phases were identified: Diagnosis, Loss of normality, Adjusting to new normality, Palliative phase and Death. Many milestones were common to all categories, suggesting that the ACT/RCPCH system encompasses related conditions. Others occurred in only some, suggesting trajectories in the categories are distinct. Significant themes emerging from qualitative data were: becoming expert in their child, concerns about service provision, information needs and relationships with health professionals. By presenting qualitative descriptive data regarding the lived experience of families of children with LLCs, this study provides preliminary evidence that the ACT/RCPCH categories are suitable tools for research and service development.

Sublingual administration of fentanyl to cancer patients is an effective treatment for breakthrough pain: results from a randomized phase II study.

Abstract: In this study we evaluated the efficacy and tolerability of sublingual fentanyl (SLF) for breakthrough pain (BTP) in adult opioid-tolerant cancer patients. Patients received one dose of placebo, SLF 100, 200 and 400 microg in random order at four pain episodes. The primary efficacy endpoint was pain intensity difference (PID) from baseline. Twenty-seven patients received study medication. Overall PID increased significantly with SLF 400 microg versus placebo (8.57 mm, p 20 mm) was identified by 95% of patients. Reduced use of rescue medication (p < 0.001, SLF 400 microg) and improved global assessment of treatment (p = 0.0146, SLF 400 microg) confirmed these differences as clinically important. Nausea and dizziness were the most common treatment-related adverse effects. SLF appears to be a fast, effective and well-tolerated treatment for BTP.

Individual breathlessness trajectories do not match summary trajectories in advanced cancer and chronic obstructive pulmonary disease: results from a longitudinal study.

Abstract: Breathlessness is a distressing symptom in advanced disease. Little is known about the trajectories of this symptom over time and towards death. This study aimed to describe and compare the summary and individual trajectories of breathlessness and overall symptom burden over time and towards the end of life following patients with advanced cancer or severe chronic obstructive pulmonary disease (COPD) in inpatient and outpatient health care settings in Germany. The modified Borg Scale, Memorial Symptom Assessment Scale Short Form and Palliative Outcome Scale were used as outcome measures. Data were collected at baseline and then monthly over six months or until death. Forty-nine cancer and 60 COPD patients were included. Both groups had similar demographics. Thirty out of the 49 cancer and 6/60 COPD patients died, 7/49 cancer and 20/60 COPD patients dropped out due to physical deterioration or questionnaire fatigue. In cancer patients, breathlessness increased towards death. In COPD patients, breathlessness increased over time. Twenty-one cancer and 43 COPD patients provided data for individual breathlessness trajectories. These revealed wide individual variations with four different patterns: fluctuation, increasing, stable and decreasing breathlessness. Symptom trajectories on the population level reflecting the whole group mask individual variation, which is reflected in distinct symptom trajectories with different patterns.

Barriers to the development of palliative care in Western Europe

Abstract: The Eurobarometer Survey of the EAPC Task Force on the Development of Palliative Care in Europe is part of a programme of work to produce comprehensive information on the provision of palliative care across Europe. Aim: To identify barriers to the development of palliative care in Western Europe. Method: A qualitative survey was undertaken amongst boards of national associations, eliciting opinions on opportunities for, and barriers to, palliative care development. By July 2006, 44/52 (85%) European countries had responded to the survey; we report here on the results from 22/25 (88%) countries in Western Europe. Analysis: Data from the Eurobarometer Survey were analysed thematically by geographical region and by the degree of development of palliative care in each country. Results: From the data contained within the Eurobarometer, we identified six significant barriers to the development of palliative care in Western Europe: (i) lack of palliative care education and training programmes; (ii) lack of awareness and recognition of palliative care; (iii) limited availability of/knowledge about opioid analgesics; (iv) limited funding; (v) lack of coordination amongst services; and (vi) uneven palliative care coverage. Conclusion: Findings from the EAPC Eurobarometer Survey suggest that barriers to the development of palliative care in Western Europe may differ substantially from each other in both their scope and context and that some may be considered to be of greater significance than others. A number of common barriers to the development of the discipline do exist and much work still remains to be done in the identified areas. This paper provides a road map of which barriers need to be addressed.

Gender imbalance in pediatric palliative care research samples.

Abstract: We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative care using MEDLINE, CINAHL, and PsycINFO. Study selection inclusion criteria were: (1) published between 1988 and 2008; (2) in English; (3) conducted in North America; (4) focused on parents of children aged 0—18 years who were expected to die or had died; (5) had ‘parent’ in the title; and (6) focused on parents’ experiences or on parents’ perspectives regarding the child’s illness/death. Keyword searches produced a list of 2103 studies, of which 45 met the criteria for inclusion. The ratio of mothers to fathers participating in the studies was examined. We found that there has been an increase in research on parental perspectives in pediatric palliative care over the last 5 years, but what constitutes ‘parental’ in this literature continues to be primarily ‘ma...

Cultural conceptualizations of hospice palliative care: more similarities than differences.

Abstract: The role of culture is significant in hospice palliative care (HPC). While mainstream HPC has been well described in many Western countries, there is no conceptual clarity regarding the meaning of HPC among minority cultures and ethnicities. In this article we describe and critically appraise the findings of a literature synthesis of 15 qualitative studies regarding the conceptualization of HPC among culturally diverse populations. Three primary themes emerged regarding HPC. They highlight: (i) that HPC should attend to the physical, psychosocial and spiritual aspects of death and dying; (ii) that the ideal HPC provider demonstrates excellent knowledge and expertise about end-of-life care, and is respectful, genuine and compassionate; and (iii) that HPC should include a range of resources that alleviate the potential burdens associated with end-of-life care. The synthesis of this knowledge suggests that expectations regarding the scope of HPC across ethnic and cultural groups have more similarities than d...