Relatively little is known about the type of physical environment which is needed and preferred by patients aged 65 and over, with a prognosis of 1 year or less, who are receiving care in hospitals, care homes and hospices, and their families and staff. A narrative literature review was conducted to identify and analyse evidence on this issue, with twenty-nine papers meeting the inclusion criteria. The patients were found to have a wide range of views on their environment, but there was some variation between the views of patients and those of their families and staff. Four main themes emerged: the physical environment should be ‘homely’; it should support patients’ need for social interaction and privacy; it should support the caring activities of staff, family members and patients; and it should allow opportunities for spiritual expression. It is evident that the physical environment contributes significantly to the quality of life of older people with a life-limiting illness, and there is a need for more research in this area. Regular assessment of patients’ environmental needs should form part of care planning.

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.

The objective of this study was to evaluate the key components of services for people with advanced heart failure from multiple perspectives and recommend how care might be delivered in line with UK policies on long-term conditions, palliative and end-of-life care. Serial interviews were conducted over 2 years with patients, case-linked family carers and professionals (n =162); followed by four focus groups involving patients, carers and key professionals (n =32). There were 36 patients with advanced heart failure, 30 family carers and 62 professionals included in the study from a UK health region with various heart failure care models. Participants confirmed the value of a key health professional coordinating care, holistic assessment and regular monitoring. A lack of time and resources due to competing priorities in primary care, failure to respond to the fluctuations of a heart failure illness trajectory, concerns about the balance between direct care from specialist nurses or a more advisory role and difficulty in judging when to move towards palliative care hindered consistent access to proactive care. A heart failure care framework, with key stages and service responses, was developed. We conclude that patients with long-term conditions needing palliative care should be identified and managed using pragmatic criteria that include a proactive shift in care goals.

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.

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 differences to the goals of mainstream HPC.

Introduction Individuals who are Deaf face challenges both similar and unique from those faced by hearing individuals when a family member is dying. This study was guided by the question, "What are the challenges faced by a Deaf family member when a loved one is dying?"

Methods This qualitative study is guided by critical theory and an interpretive perspective. Robert, a college-educated older adult who has been Deaf from birth was interviewed in American Sign Language using a death history format.

Results There are challenges for Deaf family members that affect communication with both the dying person and health care professionals. Patient-family communication issues included physical challenges and financial challenges. Lack of cultural competence concerning the Deaf community created challenges communicating with professionals. Decision-making was also a challenge.

Conclusions These findings provide a framework for future research concerning the needs of Deaf individuals facing the end of life and provide guidance for clinicians.

Morphine (M) is the opioid analgesic of choice for severe cancer pain. The IV to PO M equipotent switch ratio (CR) is controversial. We designed this prospective observational cohort to confirm the efficacy and safety of M IV to PO CR of 1:3. Consecutive cancer patients admitted to an inpatient palliative medicine unit were screened for inclusion. Pain was managed by palliative medicine specialists. They were blinded to the patient data collected, and the calculated CR. The switch was considered successful if the following criteria were met: (1) Pain adequately controlled: pain rated as none or mild (2) Number of RD less than 4 (for non incident pain) per 24 hours (3) No limiting side effects. We used Day 3 ATC M dose for CR calculations. The major outcome measures were the IV : PO CR ratio, morphine doses (mg/day), pain severity, number of PRN doses, and day 1 and day 3side effects. Descriptive statistics were used to report mean, median, standard deviation and range of different variables. Two hundred and fifty six consecutive admissions were screened, and 106 were eligible for the study. Sixty two underwent a successful M route switch and were included in this analysis. A ratio of 1:3 was safely implemented over a wide M dose range. About 80% were successfully switched with a calculated CR of 1:3. 20% required an oral M dose adjustment after route switch either to better pain control or reduce side effects with a resultant higher (e.g. 1:4) or lower (e.g. 1:2) calculated potency ratios respectively. A potency ratio of 1:3 was safe as evaluated by common M side-effects, the dose also easy to calculate. The 1: 3 M IV to PO relative milligram potency ratio appears correct and practical for most patients over a wide M dose range.

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.

Objective: This study aimed to evaluate prospectively the resource utilization and related costs during the palliative phase of care in five regions across Canada. Subjects: A cohort of 248 patients registered in a palliative care program and their main informal caregivers were consecutively recruited. Research Design: A prospective research design with repeated measures was adopted. Interviews were conducted at two-week intervals until the patient s passing or up to a maximum of 6 months. Measures: The survey questions prompted participants to provide information on the types and number of goods and services they used, and who paid for these goods and services. Results: The largest cost component for study participants was inpatient hospital care stays, followed by home care and informal caregiving time. In regard to cost sharing, the public health care system (PHCS), the family, and not-for-profit organizations (NFPO) sustained respectively 71.3%, 26.6%, and 1.6% of the mean total cost per patient. Conclusion: Such results provide a comprehensive picture of costs related to palliative care in Canada, by specifying the cost sharing between the PHCS, the family, and NFPO.

The objectives of this study were to establish the extent to which UK primary care has adopted recommended practices on supportive and palliative care of adults with cancer, and to relate this to participation in national initiatives. We conducted a cross-sectional postal questionnaire survey of a random sample of UK general practices. In total, 60.0% of practices (2096 of 3495) responded to the survey: 61.5% reported involvement with the Gold Standards Framework (GSF); 24.4% with the Liverpool or other End of Life Care Pathway; 12.3%, with the Preferred Place of Care (PPC) initiative; and 8.4% with Advance Care Planning (ACP). Participation in GSF contributed most to the variance in practice organization scores; and practice organization scores contributed most to the variance in clinical care scores. Participation in ACP or PPC, and higher clinical care scores were associated with an increased likelihood of reported high rates of death at home for cancer patients. Our findings appear to support the role of national initiatives in improving the quality of end-of-life care delivery in general practice. A population-based study would be required to assess the effect of end of life care on clinical outcomes and patient or carer experience.

Parkinson's Disease (PD) is an irreversible degenerative neurological disorder with no known cure. Apomorphine is a potent short-acting D1/D2 dopamine agonist administered sub-cutaneously that is used in the treatment of PD. Optimising PD medication is an important aspect of end of life care. There are no previously reported cases of apomorphine providing symptom relief in terminal care of PD patients. This case highlights its potential benefits for symptom control at the end of life.

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.

Patients with advanced cancer often have complex care needs requiring collaboration between medical oncology and palliative care providers. Little is known about how effective and acceptable such collaboration is to medical oncologists. Attitudes of Australian medical oncologists toward collaboration with specialist palliative care services were investigated using a Web-based survey. Descriptive statistics and attitude indices were calculated and a thematic content analysis performed. One hundred and fifteen respondents (78 medical oncologists, 37 trainees) completed the survey (response rate 30.3%). Positive attitudes toward specialist palliative care involvement were expressed with most respondents preferring concurrent rather than sequential models of care (94.8%, n = 109). Reported barriers to collaboration included reluctance for referral by patients (minor 60.9%, n = 70; major 8.7%, n = 10) or families (minor 67%, n = 77; major 7%, n = 8), a lack of inpatient beds (minor 27%, n = 31; major 34.8%, n = 40) and inadequate resources for specialist palliative care to take some referrals (minor 30.4%, n = 35; major 30.4%, n = 35). There was no difference in attitude indices for those who had completed a palliative care rotation during their training (33%, n = 38) and those who had not. Suggestions for improvement in collaboration focused around four areas – improved resources, improved multidisciplinary links, mutual respect and understanding, and consistency in service provision. This study is the first to specifically investigate the views of Australian medical oncologists toward collaboration with specialist palliative care. While positive attitudes have been expressed, identified barriers to collaboration need attention.

Chronic refractory angina can lead to multiple acute hospital admissions. This can be due to patient and healthcare professional misconceptions regarding the meaning of the chest pain experienced. Symptom control, psychological support and education form an important part of the management of this condition. We describe a case study where intranasal alfentanil provided rapid relief of symptoms preventing repeated hospital admissions.

Prognosis in COPD is poor and many patients perceive shortcomings in the education they receive about aspects of their condition. This study explores the experiences of patients with COPD, particularly fears surrounding death and dying. Semi-structured interviews were conducted with 21 patients with moderate or severe COPD. Findings revealed that patient understanding of COPD was poor, most patients were unaware of the progressive nature of the condition, and few were aware they could die of COPD. Despite this, patients often expressed concerns that their condition might deteriorate. Patients had particular concerns regarding the manner of their death; the overriding fear was dying of breathlessness or suffocation. None of the patients' had discussed these fears with a health care professional. Improved patient education is needed in order to improve patients understanding of their condition and prognosis. Open communication regarding death, as advocated in a palliative care approach, is also appropriate to alleviate patients fears and to allow them to make decisions regarding the management of their care at the end of life.

The objective of this study was to review the literature on depression in palliative cancer care in order to identify which assessment methods and classification systems have been used in studies of depression. Extensive electronic database searches in PubMed, CancerLit, CINAHL, PsychINFO, EMBASE and AgeLine as well as hand search were carried out. In the 202 included papers, 106 different assessment methods were used. Sixty-five of these were only used once. All together, the Hospital Anxiety and Depression Scale (HADS) was the most commonly used assessment method. However, there were regional differences and while the HADS dominated in Europe it was quite seldom used in Canada or in the USA. Few prevalence and intervention studies used assessment methods with an explicit reference to a diagnostic system. There were in total few case definitions of depression. Among these, the classifications were in general based on cut-off scores (77%) and not according to diagnostic systems. The full range of the DSM-IV diagnostic criteria was seldom assessed, i.e. less than one-third of the assessments in the review took into account the duration of symptoms and 18% assessed consequences and impact upon patient functioning. A diversity of assessment methods had been used. Few studies classified depression by referring to a diagnostic system or by using cut-off scores. Evidently, there is a need for a consensus on how to assess and conceptualize depression and related conditions in palliative care.

This prospective study followed 35 patients admitted to hospital with malignant bowel obstruction (MBO) to evaluate quality of life (QOL). Subjects completed the Edmonton Symptom Assessment Scale (ESAS) and Rotterdam Symptom Checklist (RSCL) at recruitment, and at one week, one month and three months.

The highest ranked ESAS scores at recruitment (which was generally 18-36 hours post admission to hospital) included loss of appetite (median=7.5), fatigue (6.5) and overall well-being (6.0). The total ESAS score improved by 7.5, 11.5 and 11.0 points respectively at one week, one month and three months (p<0.05, p<0.01, NS).

RSCL median scores for physical and psychological subscales were high at baseline (36.2, 42.9) and improved significantly at one week and one month (p<0.05). Psychological functioning appeared to be worsening by three months and at no time did activity level improve significantly. The overall QOL score was extremely poor at baseline (6.0 median) improving to 3.3 at one month (median fall=1.0, p<0.05) and 3.4 at three months.

Further work should address the lack of improvement in activity and apparent deterioration in psychological functioning after one month.

The purpose of this study is to analyze French general practitioners’ attitudes toward prescribing opiate painkillers for dying patients and compare them with their attitudes toward making frequent home visits. One hundred and fifteen general practitioners indicated the acceptability of prescribing opiates in 48 scenarios of terminal cancer patients with different levels of age, gender, stated pain, request for painkillers, and signs of depression; 103 of them also indicated the acceptability of making frequent home visits in the same 48 scenarios. The responses were analyzed using analysis of variance and cluster analysis. For prescribing opiates, four clusters of physicians were found: 13 prescribed primarily in response to stated pain; 43 to request for painkillers; 43 to the combination of pain, request, and depression; and 16 in virtually all cases. Using the same clusters to analyze visiting gave results that were very consistent with those for prescribing. We conclude that French general practitioners have differing and consistent styles in prescribing painkillers and making home visits to dying cancer patients.

The objective of this study was to quantify the impact of standardized assessment and management tools on patient symptom scores in cancer-induced anorexia cachexia syndrome (ACS) using a within-group study design. Baseline assessments included the Patient Generated Subjective Global Assessment (PG-SGA) tool and an amended Symptoms and Concerns Checklist (SCC). Symptom management strategies, written for this project, were instigated. Follow-up SCC scores were collected at 2 and 4 weeks. Forty out of 79 patients referred were recruited; 29/79 (36.7%) were too unwell or had died prior to consent. At baseline, the PG-SGA tool revealed 250 active symptoms associated with ACS. Total PG-SGA score was above 9 for all patients. Predominant interventions involved simple dietary advice and prescription of artificial saliva, mouthwash and prokinetic antiemetics. Median total SCC score improved sequentially from 11 at baseline, to 7 and 4 at first and second review, respectively (visit 1 to 2, p = 0.001; visit 1 to 3, p < 0.001; and visit 2 to 3, p = 0.02). We conclude that patients with ACS are recognised late in their disease and have a considerable burden of active symptoms. A structured approach to assessment and management has a significant impact on symptom burden.

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.

Hospice trustees are volunteers who are vital to the governance and management of independent, charitable hospices, yet little is known about their roles and concerns. This paper presents some findings from a qualitative study which explored the views and perspectives of hospice trustees in the UK. Twenty hospice trustees took part in semi-structured telephone interviews, which were analysed using an iterative thematic approach. Nine themes emerged from the analysis, and were grouped into two major categories. One theme, ‘becoming a trustee’, is presented in this paper to illustrate trustees’ concerns about the challenges they face in adapting to change. The pace of change currently facing hospices in the UK is an issue of particular concern to trustees, presenting ongoing challenges for this group of volunteers. The study also raises wider questions about how hospices wish to position themselves in the future.

Development of palliative care educational programmes continues in Japan. An instrument to evaluate a wider range of palliative care knowledge among general physicians and nurses is needed. However, such an instrument does not currently exist. The aim of this study was to develop an assessment to measure the efficacy of palliative care educational programmes. The questionnaire survey was validated with a group of 940 nurses at two facilities. The response rate was 85 % (n = 797). This study used psychometric methods such as item response theory and intraclass correlation coefficients. Ultimately, 20 items in 5 domains including ‘philosophy', ‘pain', ‘dyspnoea', ‘psychiatric problems" and ‘gastrointestinal problems' were selected. For these items, the intraclass correlation was 0.88 overall and 0.61–0.82 in each domain; the Kuder-Richardson formula 20 in internal consistency was 0.81. Validity and reliability of the instrument were established. This tool is designed to evaluate a wider range of palliative care knowledge than currently available assessments and can be used for general physicians and nurses. The evaluation of educational programmes and the clarification of actual knowledge acquired are possible using this instrument.

Cognitive impairment seems to be highly prevalent in patients with advanced cancer. Modafinil, a novel vigilance and wake-promoting agent, may be an alternative treatment. We wanted to investigate this treatment on attentional and psychomotor dysfunction in cancer patients. 28 cancer patients with a tiredness score of 50 mm or more on a scale of 0 to 10 (0 = no tiredness, 10 = worst possible tiredness) and Karnofsky Performance Status 40–70 were included. All medications were kept stable during the trial despite short acting opioids for breakthrough pain. On day 1 the patients were randomly assigned to receive 200 mg Modafinil orally or placebo and on day 4 they crossed-over to the alternative treatment. Finger Tapping Test (FTT), Trail Making Test (TMT) and Edmonton Symptom Assessment System (ESAS) were evaluated before tablet intake and again 4, 5 hours after. FTT for the dominant hand as well as TMT were statistically significantly improved on modafinil (p-values = 0.006 and 0.042, respectively). On ESAS, depression and drowsiness also improved statistically significantly (p-values = <0.001 and 0.038, respectively). Modafinil in a single dose regimen was significantly superior to placebo regarding two cognitive tests of psychomotor speed and attention. Furthermore subjective scores of depression and drowsiness were significantly improved by modafinil.

Enabling patients to be cared for in their preferred location often involves journeys between care settings. The challenge of ensuring journeys are timely and safe emerged as an important issue in an evaluation of palliative care services, which informed a service redesign programme in three areas of the United Kingdom by the Marie Curie Cancer Care ‘Delivering Choice Programme'. This article explores perceptions of service users and key stakeholders of palliative care services about problems encountered in journeys between care settings during end-of-life care. This article draws on data from interviews with stakeholders (n = 44), patients (n = 16), carers (n = 19) and bereaved carers (n = 20); and focus groups (n = 9) with specialist nurses. Data were gathered in three areas of the United Kingdom. Data were analysed using a framework approach. Transport problems between care settings emerged as a key theme. Four particular problems were identified: (1) urgent need for transport due to patients' rapidly changing condition; (2) limited time to organise transfers; (3) the management of specialist equipment and (4) the need to clarify the resuscitation status of patients. Partnership working between Ambulance Services and secondary care is required to develop joint protocols of care to ensure timely and safe transportation between care settings of patients, who are near their end of life. Commissioning of services should be responsive to the complexities of patients' needs and those of their families.