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1.  Evaluation of a hospice rapid response community service: a controlled evaluation 
BMC Palliative Care  2012;11:11.
Background
While most people faced with a terminal illness would prefer to die at home, less than a third in England are enabled to do so with many dying in National Health Service hospitals. Patients are more likely to die at home if their carers receive professional support. Hospice rapid response teams, which provide specialist palliative care at home on a 24/7 on-call basis, are proposed as an effective way to help terminally ill patients die in their preferred place, usually at home. However, the effectiveness of rapid response teams has not been rigorously evaluated in terms of patient, carer and cost outcomes.
Methods/Design
The study is a pragmatic quasi-experimental controlled trial. The primary outcome for the quantitative evaluation for patients is dying in their preferred place of death. Carers’ quality of life will be evaluated using postal questionnaires sent at patient intake to the hospice service and eight months later. Carers’ perceptions of care received and the patient’s death will be assessed in one to one interviews at 6 to 8 months post bereavement. Service utilisation costs including the rapid response intervention will be compared to those of usual care.
Discussion
The study will contribute to the development of the evidence base on outcomes for patients and carers and costs of hospice rapid response teams operating in the community.
Trial registration: Current controlled trials ISRCTN32119670.
doi:10.1186/1472-684X-11-11
PMCID: PMC3441320  PMID: 22846107
Rapid response service; Hospice at home; Pragmatic trial; Preferred place of death; Palliative care
2.  Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study 
BMC Cancer  2010;10:400.
Background
Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.
Methods/Design
Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified.
Discussion
Collecting data on end-of-life care retrospectively from bereaved relatives has ethical, practical and scientific challenges. QUALYCARE has been carefully designed to address these challenges in a robust and ethically sound population-based survey. By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future.
Trial registration
National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.
doi:10.1186/1471-2407-10-400
PMCID: PMC2919503  PMID: 20678203
3.  End-of-life care in a COPD patient awaiting lung transplantation: a case report 
COPD is nowadays the main indication for lung transplantation. In appropriately selected patients with end stage COPD, lung transplantation may improve quality of life and prognosis of survival. However, patients with end stage COPD may die while waiting for lung transplantation. Palliative care is important to address the needs of patients with end stage COPD. This case report shows that in a patient with end stage COPD listed for lung transplantation offering palliative care and curative-restorative care concurrently may be problematic. If the requirements to remain a transplantation candidate need to be met, the possibilities for palliative care may be limited. Discussing the possibilities of palliative care and the patient's treatment preferences is necessary to prevent that end-of-life care needs of COPD patients dying while listed for lung transplantation are not optimally addressed. The patient's end-of-life care preferences may ask for a clear distinction between the period in which palliative and curative-restorative care are offered concurrently and the end-of-life care period. This may be necessary to allow a patient to spend the last stage of life according to his or her wishes, even when this implicates that lung transplantation is not possible anymore and the patient will die because of end stage COPD.
doi:10.1186/1472-684X-9-6
PMCID: PMC2873495  PMID: 20426832
4.  Terminal cancer care and patients' preference for place of death: a prospective study. 
BMJ : British Medical Journal  1990;301(6749):415-417.
OBJECTIVE--To assess the preference of terminally ill patients with cancer for their place of final care. DESIGN--Prospective study of randomly selected patients with cancer from hospital and the community who were expected to die within a year. Patients expected to live less than two months were interviewed at two week intervals; otherwise patients were interviewed monthly. Their main carer was interviewed three months after the patient's death. SETTING--District general hospital, hospices, and patients' homes. MAIN OUTCOME MEASURE--Stated preferred place of final care; actual place of death; reason for final hospital admission for those in hospital; community care provision required for home care. RESULTS--Of 98 patients approached, 84 (86%) agreed to be interviewed, of whom 70 (83%) died during the study and 59 (84%) stated a preferred place of final care: 34 (58%) wished to die at home given existing circumstances, 12 (20%) in hospital, 12 (20%) in a hospice, and one (2%) elsewhere. Their own home was the preferred place of care for 17 (94%) of the patients who died there, whereas of the 32 patients who died in hospital 22 (69%) had stated a preference to die elsewhere. Had circumstances been more favourable 67% (41) of patients would have preferred to die at home, 16% (10) in hospital, and 15% (9) in hospice. CONCLUSION--With a limited increase in community care 50% more patients with cancer could be supported to die at home, as they and their carers would prefer.
PMCID: PMC1663663  PMID: 1967134
5.  GPs' awareness of patients' preference for place of death 
Background
Being able to die in one's place of choice is an indicator of the quality of end-of-life care. GPs may play a key role in exploring and honouring patients' preferences for place of death.
Aim
To examine how often GPs are informed about patients' preferred place of death, by whom and for which patients, and to study the expressed preferred place of death and how often patients die at their preferred place.
Design of study
One-year nationwide mortality retrospective study.
Setting
Sentinel Network of GPs in Belgium, 2006.
Method
GPs' weekly registration of all deaths (patients aged ≥1 year).
Results
A total of 798 non-sudden deaths were reported. GPs were informed of patients' preferred place of death in 46% of cases. GPs obtained this information directly from patients in 63%. GP awareness was positively associated with patients not being hospitalised in the last 3 months of life (odds ratio [OR] = 3.9; 95% confidence interval [CI] = 2.8 to 5.6), involvement of informal caregivers (OR = 3.3; 95% CI = 1.8 to 6.1), use of a multidisciplinary palliative care team (OR = 2.5; 95% CI = 1.8 to 3.5), and with presence of more than seven contacts between GP and patient or family in the last 3 months of life (OR = 3.0; 95% CI = 2.2 to 4.3). In instances where GPs were informed, more than half of patients (58%) preferred to die at home. Overall, 80% of patients died at their preferred place.
Conclusion
GPs are often unaware of their patients' preference for place of death. However, if GPs are informed, patients often die at their preferred location. Several healthcare characteristics might contribute to this and to a higher level of GP awareness.
doi:10.3399/bjgp09X454124
PMCID: PMC2734354  PMID: 19682405
advance care planning; end-of-life care; general practitioner; palliative care; preferred place of death; terminal care
6.  “Please, I want to go home”: ethical issues raised when considering choice of place of care in palliative care 
Postgraduate Medical Journal  2007;83(984):643-648.
Many palliative care patients would prefer to receive care, and to die, at home. Despite this many die in institutions. In response to this, politicians and charities have adopted policies aimed at increasing the opportunities for care and death at home. The need to discuss plans for discharge with most inpatients reinforces expectations of a choice of place of care. However, many palliative patients do not have a choice of care at home. This article will explore the circumstances in which patients are unable to choose home care and consider changes in clinical practice that can help to maximise choice. We shall argue that there is a distinction between the preferences of patients and the choices actually available to them. In attempting to make this distinction we advocate consideration of the balance between the ethical principles relevant to each case.
doi:10.1136/pgmj.2007.058487
PMCID: PMC2600129  PMID: 17916873
discharge planning; palliative care; terminal illness; place of care; choice
7.  Heterogeneity and changes in preferences for dying at home: a systematic review 
BMC Palliative Care  2013;12:7.
Background
Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression.
Methods
We searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966–2011), EMBASE (1980–2011), psycINFO (1967–2011), CINAHL (1982–2011), six palliative care journals (2006–11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed the percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size.
Results
210 studies reported preferences of just over 100,000 people from 33 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death–this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested.
Conclusions
Controlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death.
doi:10.1186/1472-684X-12-7
PMCID: PMC3623898  PMID: 23414145
Patient preference; Hospice care; Palliative care; Hospices; Terminal care; Patient satisfaction
8.  A reassuring presence: An evaluation of Bradford District Hospice at Home service 
Background
Within the United Kingdom, a developing role for primary care services in cancer and palliative care has resulted in an increase in palliative home care teams. The provision of professional care in the home setting seeks to provide necessary services and enhanced choice for patients whose preference is to die at home.
A mismatch between patient preference for home death and the actual number of people who died at home was identified within Bradford, the locality of this study. In response to this mismatch, and reflecting the policy environment of wishing to enhance community service provision, the four Primary Care Trusts (PCTs) in the city sought to offer support to patients who wished to remain in their own homes through the final stages of a terminal illness. To offer this support they set up a dedicated hospice at home team. This would provide services and support for patients in achieving a dignified, symptom free and peaceful death, allowing families to maximise time spent together. The aim of the study was to evaluate the Bradford hospice at home service from the perspective of carers, nurses and General Practitioners.
Methods
Postal questionnaires were sent to carers (n = 289), district nurses (n = 508) and GP's (n = 444) using Bradford's hospice at home service. Resulting quantitative data was analysed using the Statical Package for Social Sciences (SPSS) and qualitative data was analysed using grounded theory techniques.
Results
The data from carers, district nurses and GPs provide general support for the Bradford hospice at home service. Carers valued highly the opportunity to 'fulfil a promise' to the individual who wished to be cared for at home. District nurses and GPs cited the positive impact of access to specialist expertise. This was a 'reassuring presence' for primary healthcare teams and offered 'relief of carer anxiety' by providing prompt, accessible and sensitive care.
Conclusion
Carers and health professionals welcomed the increased possibility of patients being cared for at home. The study identified the need to focus on improving skill levels of staff and on ensuring continuity of care.
doi:10.1186/1472-684X-7-9
PMCID: PMC2533294  PMID: 18673558
9.  Barriers to Excellent End-of-life Care for Patients with Dementia 
Journal of General Internal Medicine  2004;19(10):1057-1063.
While great strides have been made recently in improving end-of-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.
doi:10.1111/j.1525-1497.2004.30329.x
PMCID: PMC1492583  PMID: 15482560
palliative care; end-of-life care; dementia; Alzheimer's disease; hospice
10.  Psychosocial, Cultural, and Spiritual Health Disparities in End of Life and Palliative Care: Where We Are and Where We Need to Go 
Nursing outlook  2012;60(6):370-375.
Background
Although health disparities are well documented, the extent to which they affect end of life care is unknown. Limited research funding leads to sparse and often contradictory palliative care literature, with few studies on causal mechanisms.
Purpose
The purpose of this article is to explore the psychosocial, cultural and spiritual health disparities existing in palliative and end of life care with the goal of identifying future research needs.
Method
To determine knowledge gaps related to health disparities in psychosocial, cultural, and spiritual aspects of end of life care we draw upon recent literature from multiple databases.
Discussion
Although there are few data, we do know minorities make little use of hospice, often because of lack of knowledge about hospice or palliative care, family-centered cultures, and preferences for more aggressive end of life care than hospice allows.
Conclusion
Future research should include a search for theoretical and causal mechanisms; prospective longitudinal investigations; diverse patients, conditions, contexts, and settings; methodological diversity and rigor; and interdisciplinary, culturally sensitive interventions.
doi:10.1016/j.outlook.2012.08.008
PMCID: PMC3496155  PMID: 23141196
11.  Life-Saving Devices Reach the End of Life with Heart Failure 
The new millennium has seen a dramatic increase in use of potentially life-prolonging devices such as implantable cardioverter-defibrillators (ICDs) and ventricular assist devices (VADs) among patients with advanced heart failure. Most patients who receive these devices will have them in place when they die. Clinicians who care for these patients must commit through the entire course of therapy, including the end-of-life. Discussions about device deactivation should be the standard of care and this discussion should take place prior to implantation, during annual heart failure reviews, after major milestones, and when the end-of-life appears to be approaching. Turning off ICDs and turning off VADs in response to patient or proxy requests are legally the same although they may be perceived differently, as disconnection of the VAD is more likely to cause immediate death. This article discusses the evidence around device deactivation at the end-of-life and offers suggestions for improvement.
doi:10.1016/j.pcad.2012.10.007
PMCID: PMC3523274  PMID: 23217431
12.  Place of Death Among Older Americans 
Medical care  2008;46(8):829-838.
Background
The majority of Americans die in institutions although most prefer to die at home. States vary greatly in their proportion of home deaths. Although individuals’ circumstances largely determine where they die, health policies may affect the range of options available to them.
Objective
To examine whether states’ spending on home- and community-based services (HCBS) affects place of death, taking into consideration county health care resources and individuals’ family, sociodemographic, and health factors.
Methods
Using exit interview data from respondents in the Health and Retirement Study born in 1923 or earlier who died between 1993 and 2002 (N = 3362), we conducted discrete-time survival analysis of the risk of end-of-life nursing home relocation to examine whether states’ HCBS spending would delay or prevent end-of-life nursing home admission. Then we ran logistic regression analysis to investigate the HCBS effects on place of death separately for those who relocated to a nursing home and those who remained in the community.
Results
Living in a state with higher HCBS spending was associated with lower risk of end-of-life nursing home relocation, especially among people who had Medicaid. However, state HCBS support was not directly associated with place of death.
Conclusions
States’ generosity for HCBS increases the chance of dying at home via lowering the risk of end-of-life nursing home relocation. State-to-state variation in HCBS spending may partly explain variation in home deaths. Our findings add to the emerging encouraging evidence for continued efforts to enhance support for HCBS.
doi:10.1097/MLR.0b013e3181791a79
PMCID: PMC2708119  PMID: 18665063
long-term care; elderly; state policy; nursing home admission; end-of-life
13.  Communication in End-Stage Cancer: Review of the Literature and Future Research 
Journal of health communication  2009;14(0 1):95-108.
Concerns have been raised about the quality of life and healthcare received by cancer patients at the end-of-life (EOL). Many patients die with pain and other distressing symptoms inadequately controlled, receiving burdensome, aggressive care that worsens quality of life and limits patient exposure to palliative care, such as hospice. Patient-physician communication is likely a very important determinate of EOL care. EOL discussions with physicians are associated with an increased likelihood of: 1. acknowledgement of terminal illness, 2. preferences for comfort care over life-extension, and 3. receipt of less intensive, life-prolonging and more palliative EOL care; while this appears to hold for white patients, it is less clear for black, advanced cancer patients. These results highlight the importance of communication in determining EOL cancer care and suggest that communication disparities may contribute to black-white differences in the EOL care. We review the pertinent literature and discuss areas for future research.
doi:10.1080/10810730902806786
PMCID: PMC3779876  PMID: 19449273
14.  Nationwide monitoring of end-of-life care via the Sentinel Network of General Practitioners in Belgium: the research protocol of the SENTI-MELC study 
Background
End-of-life care has become an issue of great clinical and public health concern. From analyses of official death certificates, we have societal knowledge on how many people die, at what age, where and from what causes. However, we know little about how people are dying. There is a lack of population-based and nationwide data that evaluate and monitor the circumstances of death and the care received in the final months of life. The present study was designed to describe the places of end-of-life care and care transitions, the caregivers involved in patient care and the actual treatments and care provided to dying patients in Belgium. The patient, residence and healthcare characteristics associated with these aspects of end-of-life care provision will also be studied. In this report, the protocol of the study is outlined.
Methods/Design
We designed a nationwide mortality follow-back study with data collection in 2005 and 2006, via the nationwide Belgian Sentinel Network of General Practitioners (GPs) i.e. an existing epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian population. All GPs were asked to report weekly, on a standardized registration form, every patient (>1 year) in their practice who had died, and to identify patients who had died "non-suddenly." The last three months of these patients' lives were surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality.
Discussion
In 2005 and 2006, respectively 1385 and 1305 deaths were identified of which 66% and 63% died non-suddenly. The first results are expected in 2007. Via this study, we will build a descriptive epidemiological database on end-of-life care provision in Belgium, which might serve as baseline measurement to monitor end-of-life care over time. The study will inform medical practice as well as healthcare authorities in setting up an end-of-life care policy. We publish the protocol here to inform others, in particular countries with analogue GP surveillance networks, on the possibilities of performing end-of-life care research. A preliminary analysis of the possible strengths, weaknesses and opportunities of our research is outlined.
doi:10.1186/1472-684X-6-6
PMCID: PMC2222051  PMID: 17922893
15.  Improving end‐of‐life care for patients with chronic heart failure: “Let's hope it'll get better, when I know in my heart of hearts it won't” 
Heart  2007;93(8):963-967.
Background
Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life.
Aims
(1) To formulate guidance and recommendations for improving end‐of‐life care in CHF; (2) to generate data on patients' and carers' preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end‐of‐life issues.
Design
Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III–IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians.
Setting
A tertiary hospital in London, UK.
Results
Patients and families reported a wide range of end‐of‐life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease‐ and specialism‐specific barriers to improving end‐of‐life care were identified.
Conclusions
The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end‐of‐life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.
doi:10.1136/hrt.2006.106518
PMCID: PMC1994396  PMID: 17309905
16.  Development and evaluation of an aged care specific Advance Care Plan 
BMJ Supportive & Palliative Care  2013;3(2):188-195.
Objectives
To report on the quality of advance care planning (ACP) documents in use in residential aged care facilities (RACF) in areas of Victoria Australia prior to a systematic intervention; to report on the development and performance of an aged care specific Advance Care Plan template used during the intervention.
Design
An audit of the quality of pre-existing documentation used to record resident treatment preferences and end-of-life wishes at participating RACFs; development and pilot of an aged care specific Advance Care Plan template; an audit of the completeness and quality of Advance Care Plans completed on the new template during a systematic ACP intervention.
Participants and setting
19 selected RACFs (managed by 12 aged care organisations) in metropolitan and regional areas of Victoria.
Results
Documentation in use at facilities prior to the ACP intervention most commonly recorded preferences regarding hospital transfer, life prolonging treatment and personal/cultural/religious wishes. However, 7 of 12 document sets failed to adequately and clearly specify the resident's preferences as regards life prolonging medical treatment. The newly developed aged care specific Advance Care Plan template was met with approval by participating RACFs. Of 203 Advance Care Plans completed on the template throughout the project period, 49% included the appointment of a Medical Enduring Power of Attorney. Requests concerning medical treatment were specified in almost all completed documents (97%), with 73% nominating the option of refusal of life-prolonging treatment. Over 90% of plans included information concerning residents’ values and beliefs, and future health situations that the resident would find to be unacceptable were specified in 78% of completed plans.
Conclusions
Standardised procedures and documentation are needed to improve the quality of processes, documents and outcomes of ACP in the residential aged care sector.
doi:10.1136/bmjspcare-2012-000392
PMCID: PMC3632978  PMID: 23626906
End-of-life; Terminal Care; Advance Care Planning; Advance Directives; Nursing Homes; Aged Care
17.  Consumer-directed services: lessons and implications for integrated systems of care 
Abstract
Over the past decade, policy makers in developed countries have begun to pay increasing attention to reform of the long-term care system for the frail elderly and younger people with disabilities. A continuum of strategies have generated interest, including integrated systems of care with agency/professionally managed service packages on the one end, and programs offering cash benefits along with the flexibility to decide how to best use these funds to meet individual needs and preferences, on the other. The latter approach, known as “consumer-directed care,” is found in various forms and degrees in Europe and North America. Primarily organised around the provision of home and community care, consumer-directed services are aimed at empowering clients and family carers, giving them major control over the what, who and when of needed care. Consumer-directed care appears to be the antithesis of integrated care. However, it actually holds important lessons and implications for the latter. This policy paper explores the rationale and models of consumer-directed services at home, reviews developments, designs and outcomes of programs in the Austria, Germany, the Netherlands, and the US. It also discusses how this experience could be helpful in shaping better and more responsive integrated models of care for vulnerable long term care populations.
PMCID: PMC1483950  PMID: 16896379
consumer-directed care; home and community services; long term care; integrated care
18.  Palliative care in advanced dementia; A mixed methods approach for the development of a complex intervention 
Background
There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Often carers are expected to make decisions. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement.
Design/Methods
We have used the MRC complex interventions framework, a "bottom-up" methodology, to develop an intervention for patients with advanced dementia and their carers aiming to 1) define end of life care needs for both patients and carers, 2) pilot a palliative care intervention and 3) produce a framework for advance care planning for patients.
The results of qualitative phase 1 work, which involved interviews with carers, hospital and primary care staff from a range of disciplines, have been used to identify key barriers and challenges. For the exploratory trial, 40 patients will be recruited to each of the control and intervention groups. The intervention will be delivered by a nurse specialist. We shall investigate and develop methodology for a phase 3 randomised controlled trial. For example we shall explore the feasibility of randomisation, how best to optimise recruitment, decide on appropriate outcomes and obtain data for power calculations. We will evaluate whether the intervention is pragmatic, feasible and deliverable on acute hospital wards and test model fidelity and its acceptability to carers, patients and staff.
Discussion
Results of qualitative phase 1 work suggested that carers and staff were keen to discuss these issues and guided the development of the intervention and choice of outcomes. This will be vital in moving to a phase III trial that is pragmatic and feasible for these complex patients within the NHS
Trial registration
ISRCTN03330837
doi:10.1186/1472-684X-7-8
PMCID: PMC2475530  PMID: 18620567
19.  Associations with the Japanese Population's Preferences for the Place of End-of-Life Care and Their Need for Receiving Health Care Services 
Journal of Palliative Medicine  2012;15(10):1106-1112.
Abstract
Purpose
The aims of this study were to identify the associations with the Japanese population's preferences for the place of end-of-life care and their need for receiving health care services.
Methods
A secondary analysis of a cross-sectional nationwide survey was conducted for 2000 randomly selected Japanese people aged 40–79 years.
Results
A total of 1042 people (55%) responded. Regarding preferred place of care, we set the place within the choices of “Home” (preferred by 44% of respondents), “Acute Hospital” (15%), “Palliative Care Unit” (19%), “Public Nursing Home” (10%), and “Private Nursing Home” (2%). Multinomial logistic regression analysis revealed that the people who preferred “Acute Hospital” tended to have the following need compared to those who preferred “Home,” “Palliative Care Unit,” or “Nursing Home”: higher need for receiving end-of-life care not from its experienced professionals but from the same staff; higher need for using health care services in highly supported environment such as the need for being near health care staff whenever and for receiving treatment possibly until the end; and higher need for consulting nurses whenever. They had lower need for using home care services and daycare services and also lower need for instructing families about how to use insurance/public health services.
Conclusions
The present findings may help to develop an effective end-of-life care system in Japan considering Japanese people's need for health care services. Also, the results of this study may underscore the importance of education on receiving home care services especially for the people who presently prefer the hospital for end-of-life care.
doi:10.1089/jpm.2012.0034
PMCID: PMC3438814  PMID: 22788951
20.  The uses of provincial administrative health databases for research on palliative care: Insights from British Columbia, Canada 
Background
Research indicating that people increasingly prefer to die at home suggests that palliative care is likely to play a more prominent role in the future of Canada's health care system. Unfortunately, at a time when research evidence should be informing policy and service delivery, little is known about health service utilization by Canadians at the end of life. One existing mechanism that can help address this gap is provincial administrative health data. The purpose of this study was to explore the potential of administrative health data to identify characteristics of palliative care users, patterns of formal service utilization and predictors of palliative care use.
Methods
Bivariate and multivariate analyses were used to examine data from the Capital Health Region, British Columbia Linked Health Databases for the period 1992/93 to 1998/99. The databases examined include continuing care, physician claims, hospital separations, and vital statistics. As the name implies, these databases can be linked at the individual level using unique identifiers so that health services utilization can be tracked across sectors.
Results
General patterns of service use among palliative care patients suggest that general practitioner and medical specialist visits have decreased over time and the utilization of hospital beds has increased. Utilization of community-based services (i.e. home support and home nursing care) shows an overall pattern of decline. However, when compared to non-palliative care patients, palliative care patients spent fewer nights in hospital, used fewer hours of home support, and had a greater number of home nursing care visits.
Conclusions
Administrative health databases can provide valuable information for examining service utilization patterns over time. However, given that decisions surrounding the designation of palliative care include factors beyond the scope of administrative databases (such as quality of life, personal preferences, social support), these databases should only be seen as one source of information to inform service delivery and policy decision making.
doi:10.1186/1472-684X-4-2
PMCID: PMC552316  PMID: 15717923
21.  Planning elderly and palliative care in Montenegro 
Introduction
Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care.
Description
The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience.
Discussion
Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment.
Conclusion
Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management.
PMCID: PMC2691939  PMID: 19513178
planning; elderly; palliative care; economics; Europe
22.  Building on Individual, State, and Federal Initiatives for Advance Care Planning, an Integral Component of Palliative and End-of-Life Cancer Care 
Journal of Oncology Practice  2011;7(6):355-359.
Recent federal and state public policy focuses on advance care planning, suggesting the promise for care delivery improvements and the means for surmounting barriers.
Federal and state provisions for advance care planning—the process by which patients, families, and medical professionals plan for future and, in particular, end-of-life care—continue to receive attention. Such planning remains an integral component of palliative care, complementing the recognition and treatment of pain and other symptoms that patients with advanced malignancies and their families encounter. Historically, advance care planning interventions (particularly those involving advance directives) have been unable to consistently demonstrate positive outcomes for patients with life-threatening illnesses. However, more recent literature, including that on patients with cancer, illustrates that both patients and caregivers report improved quality of life and less distress after discussions with their health care teams about end-of-life care. Herein, we discuss recent federal and state public policy that focuses on advance care planning, suggesting the promise for care delivery improvements and the means by which existing barriers might be surmounted. These care delivery issues apply to several disease states but are particularly pertinent to the adult oncology setting.
doi:10.1200/JOP.2011.000355
PMCID: PMC3219459  PMID: 22379415
23.  Recognising patients who will die in the near future: a nationwide study via the Dutch Sentinel Network of GPs 
The British Journal of General Practice  2011;61(587):e371-e378.
Background
Recognising patients who will die in the near future is important for adequate planning and provision of end-of-life care. GPs can play a key role in this.
Aim
To explore the following questions: How long before death do GPs recognise patients likely to die in the near future? Which patient, illness, and care-related characteristics are related to such recognition? How does recognising death in the near future, before the last week of life, relate to care in during this period?
Design and setting
One-year follow-back study via a surveillance GP network in the Netherlands.
Method
Registration of demographic and care-related characteristics.
Results
Of 252 non-sudden deaths, 70% occurred in the home or care home and 30% in hospital. GP recognition of death in the near future was absent in 30%, and occurred prior to the last month in 15%, within the last month in 19%, and in the last week in 34%. Logistic regression analyses showed cancer and low functional status were positively associated with death in the near future; cancer and discussing palliative care options were positively associated with recognising death in the near future before the last week of life. Recognising death in the near future before patients’ last week of life was associated with fewer hospital deaths, more GP–patient contacts in the last week, more deaths in a preferred place, and more-frequent GP–patient discussions about specific topics in the last 7 days of life.
Conclusion
Recognising death in the near future precedes several aspects of end-of-life care. The proportion in whom death in the near future is never recognised is large, suggesting GPs could be assisted in this process through training and implementation of care protocols that promote timely recognition of the dying phase.
doi:10.3399/bjgp11X578052
PMCID: PMC3103701  PMID: 21801517
death; general practitioner; home care; primary care; recognition of dying phase; terminal care
24.  Care of people dying with malignant and cardiorespiratory disease in general practice 
Background: Provision of palliative care for people dying with malignant disease is a well-characterised aspect of general practice workload. The nature of end-of-life care of people with non-malignant disease is less well described.
Aim: To compare the general practice care provided in the last year of life to people who died with malignant and with cardiorespiratory disease.
Design: Case record review.
Setting: Two Leicestershire general practices: one inner-city, one semi-rural; total practice population 26 000 people.
Method: General practice review of the records of all people registered with the practices who died with malignant or cardiorespiratory disease between 1 August 2000 and 31 July 2002 to determine: cause and place of death, recorded comorbidity, palliative medication prescribed, number of consultations and continuity of care, receipt and duration of palliative care.
Results: When compared with people who died with cardiorespiratory disease, those who died with malignant disease were more likely to have had a terminal phase of their illness identified and to have been prescribed more palliative drugs. Both groups consulted a similar number of times, experienced similar continuity of care, had similar comorbidity, and were equally likely to die at home.
Conclusion: People who died with cardiorespiratory disease were less likely to be in receipt of formally identified terminal care and were likely to have had fewer drugs prescribed for palliation than people with malignant disease, yet they make similar demands of practices. They are likely to have unmet needs with respect to palliation of symptoms.
PMCID: PMC1326108  PMID: 15588535
cancer; cardiovascular disease; general practice; respiratory disease; terminal care
25.  After you: conversations between patients and healthcare professionals in planning for end of life care 
BMC Palliative Care  2012;11:15.
Background
This study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients’ preferences for place of care (and death) were facilitated and documented.
Methods
The study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.
Results
Patients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.
Conclusions
This study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.
doi:10.1186/1472-684X-11-15
PMCID: PMC3517317  PMID: 22985010
Advance care planning; Palliative care services; Preferred place of care; Qualitative research

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