For example, under the auspices of the WHO Cancer and Palliative Care Program of Latin America, physicians, health care workers and government officials met to iden- tify problems and strategies for the delivery of palliative care . This meeting led to the regular exchange of knowledge and ideas. Methods for parenteral hydration were developed. Several countries found methods for the low cost production of opiods. The number of groups in- volved increased to include physicians, psychologists, nurses, pharmacists, volunteers, pastoral care workers, governments officials, hospital administrators, pharma- ceutical companies, and representatives from non-govern- mental organizations — all focusing on cost-effective means of improving the end-of-life for palliative patients. As a result, measurable outcomes have changed dramati- cally in much of Latin America. The number of patients treated by palliative care groups has increased more than 10 times in six years. Opioid use has increased and the cost of drugs has decreased. Faculties of medicine are con- ducting education in palliative care both at the undergrad- uate and postgraduate level. National and provincial governments have developed palliative care policies. Such approaches have been developed elsewhere in the world for cancer patients. Therefore, similar interventions can be developed with a broader mandate for end-of-lifecare. An important consideration in planning for improved end-of-lifecare in the developing world is that more med- ical care does not necessarily lead to better health. The common indicators of medical care — rates of infant mor- tality, lost days due to illness, and life expectancy — are shown to be improved by only 10% . This further demonstrates the need for patient derived indicators for measuring the quality of end-of-lifecare.
Many staff at the hostel where Joanne lives were insistent she had to stop drinking immediately to improve her chances of living longer. But it is important to allow clients to remain in control of the choices they face when dealing with end of life issues, however difficult staff find them. In Joanne’s case this meant accepting the possibility that, for whatever reasons, she may not be able to undertake or complete a detox/rehab programme, knowing that it will shorten her life. It was also important to let her know that staff would back her request for another chance at detox/ rehab and that whatever the outcome they would provide support. This allowed her to retain control of her life but not feel abandoned, regardless of the choices she made.
This study has limitations. First, the population is derived from a single UK city. Though broadly repre- sentative of the UK cancer population in prevalence of cancer type, age, sex and survival, the extent to which the level of palliative care involvement is representa- tive of national and international activity is harder to determine. Second, the data are derived from a live clin- ical system and as such are likely to represent errors or omissions inherent within the system. This was moder- ated by restricting linkage to a single electronic system (SystmOne) which had the best potential for reliable linkage. We were unable to include data on preva- lence and severity of specific symptoms and underlying disease (especially at time of any referral to palliative care) as these are not routinely coded in UK health data. It cannot be assumed therefore that referral to or longer interval between first contact with palliative care and death caused better outcomes. However, for all patients within our study population, the decision as to whether they received palliative care was made on rigorously applied eligibility criteria. 31 This provides
by empowering and respecting patients’ choices. Even if patients’ wishes are different from an individual clinician’s qualityend-of-lifecare it embraces respect and upholds patient autonomy. Being able to separate the patient from the illness was another subtheme based on respondents’ replies regarding the ways to acknowledge the person, not the illness or disease, an enabler of person-centred care. Supporting the patient and the family members is a subtheme that collected the respondent’s descriptions of the various ways support can be offered at the end of life. This included providing symptom control, referral for spiritual or pastoral care, a listening ear and being a mediator when miscommunication happens. Taking time to be with the patient was another subtheme based on the respondents’ replies, where allowing and giving time was mentioned as an area, they could change to deliver qualityend-of-lifecare. Taking time to listen, to leave ‘to-do lists’ and just ‘be’ were mentioned as strengthening along with not offering quick reassurances to end-of-life issues. Allowing time just for silence was also offered as an area to improve appropriate quality of practice.
complex questions, sometimes of an ethical nature, and challenging issues such as advance care planning and preferred place of care/death, organ donation, post-mortems, funeral arrangements, wills, and legal and financial concerns. The need to respond fully to people’s bereavement support needs is also acknowledged as is the need to ensure that the physical environment of hospitals is designed and organised to facilitate sensitive end-of-lifecare, privacy, choice, and dying with dignity. Four words emerged as being significant in the course of developing the Standards: Competence, Compassion, Communication, Co-ordination. In developing the Standards, the Hospice Friendly Hospitals Programme has consulted with the Health Information and Quality Authority (HIQA). HIQA has a number of statutory responsibilities under the Health Act 2007, including the responsibility for setting Standards in health and social services and monitoring healthcare quality. HIQA is currently developing the National Standards for Quality and Safety which will enhance the environment for delivering qualityend-of-lifecare. Implementing these Standards is the first step in a two to three year programme that will culminate in a mandatory licensing system for public and private healthcare providers which has been recommended by the Commission on Patient Safety and Quality Assurance and endorsed by the Government in February 2009.
Increasing evidence highlights that palliative care can improve symptom control and quality of life, increase satisfaction with care, and provide better outcomes for families.(1) In particular, early referral can lead to multiple benefits for patients and their families. These include, but are not limited to, improvement in certain symptoms, improved patient quality of life, reduced aggressive care at the end of life, reduced hospital length of stay and hospitalizations, and improved caregiver burden and better maintenance of caregiver quality of life.(2) For patients with cancer, there is a drive to facilitate earlier referral through integration of palliative care within oncology care.(3) Recent recommendations from the American Society of Clinical Oncology highlight that patients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment.(4) For non-cancer conditions, there is evidence of benefits of earlier referral, supporting various needs across earlier and later phases in the illness trajectory.(5) Understanding approaches to early referral and barriers that limit integration of palliative care is a research priority.(6) A key starting point is to understand current practice. Determining timing of referral to palliative care is a marker of quality and can inform when patients are accessing and potentially benefitting from services.(7) At a population-level there are few data to describe duration of palliative care involvement, how it differs across diagnoses and where increased integration efforts may be required.(8) Internationally there are limited and widely varied reports on duration of palliative care received by patients before death, measured as the time between referral to a service and death. Where available, figures vary greatly within and across countries. Examples of studies reporting median times range from 12 21 days in Korea,(9) US,(10) and UK,(11) to in excess of 60 70 days in Canada.(12) These studies are based on small sample sizes in a limited number of settings. Studies measuring duration of palliative care at a regional level include a citywide report in Leeds, UK,(11) (median of 34 days) and a population-level observational study in Ontario, Canada (35 mean days of palliative care).(8) Within these regions, palliative care is typically supporting patients with advanced disease in the last month of life.
on the quality of documentation. For example, only spe- cific aspects of the documented content of communica- tion were evaluated and the quality of communication could not always be ascertained from the documented data. Also, the binary assessment of some of the quality markers may have been, in some circumstances, insuf- ficient to assess quality of the care process provided but in some cases could be further explored in the qualita- tive analysis. It could be also argued that the findings are limited to the results of a single, tertiary centre; however, the authors believe that the findings may have wider applicability, as the themes identified are com- mon to findings from other studies which have included general ICUs [14, 15]. The small sample size and pos- sible existence of unmeasured confounding factors may have impacted on some of the conclusions drawn. Finally, only a limited assessment of end-of-life symp- toms, and subsequent management, was undertaken; given the retrospective nature of the study. The use of defined assessment or outcome scales may have pro- vided more robust information about the quality symp- tom management.
Eight articles reported narrative summaries of SCR with great richness and depth in dialogue [33–48, 60, 61], and poignant descriptions of each healthcare provider’s unique perspectives and contributions to the IP care plan. SCR are multidisciplinary forums where HCPs come together to discuss and process emotionally and ethically complex care issues . In these rounds, reflection on the emotional as- pect of care strengthens a provider’s ability to deal with similar situations in the future, providing support towards empathic practice . For palliative and end-of-lifecare, SCR provide an ideal milieu for promoting compassion and IP teamwork among attendees. According to Manning and colleagues, SCR are very well received by healthcare professionals . Moore and Phillips report improved at- tendee insights into psychosocial aspects of patient care, teamwork, and less clinical isolation . Issues raised by staff during SCR center around three concerns: (1) staff uneasiness with a patient’s decision for continuing or discontinuing a therapeutic regime, (2) verbalizing the need to say goodbye to a patient at end-of-life, and (3) going through the emotions elicited by the death of a patient with whom a provider identified and bonded . Unex- pected positive outcomes include patient-centered changes in institutional policy or practice, greater use of palliative care teams/enhanced palliative care services, and discus- sion among staff about advanced illness and palliative care issues . Implementing SCR requires human resources, advanced planning, and commitment by institutional administration [59, 61].
A well-drafted advance directive has a prominent role in ACP and can provide an improvement in the quality of life. Although the public need is high, the number of for- mally drafted advance directives remains low. This find- ing is mainly due to the time-consuming process and inherent to the delicate character of end of life conversa- tions. Further research could examine whether the awareness and information process could be a task for other health care workers. Another explanation for the low number of advance directives is the complexity of the actual application. Despite campaigns and local ini- tiatives citizens find the form and procedure hard to understand. Patients and caregivers will certainly benefit from particular consultation rounds about end of lifecare, analogous to the attention and time spent on prevention.
groups). All data collection will be completed by October 2008 and all analysis will be completed by March 2009. In the final year of the study (October 2008–09), we will work collectively to interpret the data from which policy directions arise. Appropriate venues for dissemination will also be identified. We will also work at this time to assess the evaluation process which is, as described in the study details section, an important element of Patton's  utilization-focused evaluation, during the final year. Throughout the three years the watching brief will be updated regularly and will be used to inform the analysis and identification of significant findings. In addition to widely disseminating a full and summary report during the final year, findings will be presented at scholarly and policy conferences and manuscripts will be submitted to peer-reviewed national and international journals. Final research reports and summaries will be made available in both English and French and posted on the NET website http://www.coag.uvic.ca/eolcare/. Further, members of the ETF will assist with disseminating research products, distributing them to their membership and other key stakeholders. The Canadian Hospice Palliative Care Asso- ciation, of which all provincial palliative care associations are members, will play a particularly central role in this regard, advocating for changes to federal government offi- cials in Ottawa. Numerous other organizations have been identified for report dissemination.
A number of initiatives have been developed and eval- uated that have specifically encouraged the discussion and documentation of preferences for care at the end of life. These include the National End of LifeCare Pro- gramme launched in 2004 and the National Institute for Clinical Excellence (NICE) guidance on Improving Sup- portive and Palliative Care for Adults with Cancer  which highlighted that many individuals with cancer had poorly co-ordinated care and little choice about where they die. The guidance specifies the use of tools such as the Gold Standards Framework , Preferred Place of Care Plan  and the Liverpool Care Pathway  as appropriate mechanisms for supporting the pro- vision of qualitycare at the end of life. Identifying that patients were under the care of providers working within these guidelines or on a care pathway that con- sidered these issues was deemed to be beneficial to the quality of care they subsequently received. More recent guidelines from the Department of Health , the Advance Care Planning Guidelines produced in 2009 by the Royal College of Physicians  and the draft gui- dance on Quality Standards in End of LifeCare cur- rently being developed by NIHCE  provide further support for the requirement to discuss and record pre- ferences for care and place of death with patients and their families as they approach the end of their lives. There is some evidence that the use of care planning tools can result in improved documentation and that this can improve the decision making process in end of lifecare. For example, a randomised controlled trial of advance care planning among hospitalized patients aged over 80 found that it improved end of lifecare and patient and family satisfaction and reduced stress, anxi- ety, and depression in surviving relatives , in addition, an audit of the care provided to patients who died in UK hospitals within 96 hours of admission found better end of lifecare (in terms of access to palliative care advice and communication with relatives and between health care teams) to be associated with care planning tools such as the Liverpool Care Pathway .
feedback strategies in the nursing home setting specifi- cally to improve end-of-lifecare in dementia. We as- sume the implementation of audit- and feedback in the nursing home to be a complex process involving mul- tiple processes of care in the nursing home (e.g., carequality coordination, administrative support, manage- ment structures and multi-disciplinary care giving). The assessment of the effects of audit- and feedback on carequality using a RCT combined with the evaluation of organizational and social elements possibly influencing audit and feedback will contribute to its theoretical un- derstanding and practical lessons for future implementa- tion in nursing homes. Further, our study will advance our understanding of how to monitor care outcomes in the realm of end-of-lifecare in dementia. Indeed, the EOLD-instruments showed a positive trend in EOLD- scores over time  and differences in EOLD-scores were found between countries [39,40]. Our data will in- crease the understanding of the differences between nursing homes in quality of care and quality of dying using EOLD-scores, as well as the possibilities of the nursing home care staff to influence them. This know- ledge may provide an evidence base for the development of quality indicators needed to systematically improve end-of-lifecare in dementia. Nevertheless, the design of the study involved a few important choices with regard to the development of the audit- and feedback strategies, the research setting and the data collection.
tools available are not easy to use. To date, there has been a lack of international guidelines on the manage- ment of cancer patients near death, except for the American Society of Clinical Oncology (ASCO) and the European Society of Medical Oncology [2, 3]. Therefore, the decision to stop a specific treatment in favor of the best palliative care is still incredibly hard and the so-called “ therapeutic inertia ” , i.e. the persistence of inappropriate antitumor treatments in non-responding terminal patients, is frequently used. Such overly aggres- sive care not only affects a patient ’ s quality of life (QoL)  but, from a healthcare system point of view, it raises questions about system sustainability given the
Considering that family caregivers, and particularly end- of-life family caregivers, play such a significant role in Canadian society, it is imperative to seek strategies that minimize or alleviate inequitable caregiver burden and the potential negative physical/mental/emotional health, employment, and financial outcomes it bestows, espe- cially upon those who are most vulnerable [6,9]. How- ever, the diversity and differing vulnerabilities that exist within the caregiver population are rarely recognized in existing research and associated health and health- related policy. This signals the need for a re-framing of how we view caregivers and caregiving needs more gene- rally, in order to develop effective policies and programs that recognize difference and account for inequities within this group. In relation to the CCB, what remains unex- plored is how family caregivers’ differing social/physical locations may be informing the underutilization of the program, or may be exposing specific groups to harsher uptake barriers than others. In this article, we pose the question: for whom is this program not work- ing? We address this question through undertaking a di- versity analysis that highlights how particular axes of difference may ultimately inform family caregivers’ use of the CCB. More specifically, our objective is to examine family caregiving at the end-of-life in Canada from the perspective of formal front-line palliative care providers (e.g., community nurses, social workers) in order to gain a better understanding of the axes of difference directly impacting family caregivers’ support opportunities, access, and outcomes. Front-line palliative care providers’ em- ployment allows them on-going access into the lived real- ities of numerous families experiencing death and dying. As such, they hold a broad and valuable experiential
ceiving information and interacting with the team. Some parents preferred only 1 staff spokesperson, whereas others preferred hearing all viewpoints of the health care team. Whether parents prefer to hear everyone’s opin- ion or are distressed by medical uncertainty may de- pend, in part, on their access to multiple providers and the degree of cohesion or dissonance of the information provided. It is likely that parental preferences and expe- riences are also influenced by factors such as one’s ability to endure complexity and tolerate ambiguity during an emotionally trying time. Several parents suggested that regular team meetings might be helpful as a means to discuss and better understand differing opinions. This approach acknowledges the complexity of PICU care, models teamwork and decision-making, and may poten- tially minimize parental stress.
Results: A total of 95 qualitative interviews with 25 patients were conducted and analysed. The following key categories were developed: (1a) dealing with advanced heart failure and ageing, (1b) dealing with end of life; (2a) perceptions regarding care, and (2b) interpersonal relations. Overall, our data show that older patients do not experience HF as a life-limiting disease. Functional restrictions and changed conditions leading to problems in daily life activities were often their prime concerns. The needs and priorities of older HF patients vary depending on their disease status and individual preferences. Pain resulting in reduced quality of life is an example of a major symptom requiring treatment. Many older HF patients lack sufficient knowledge about their condition and its prognosis, particularly concerning emergency situations and end of life issues, and many expressed a wish for open discussions. From the patients ’ perspective, there is a need for improvement in interaction with health care professionals, and limits in treatment and medical care are not openly discussed.
This study investigated the real-time perceptions and ex- periences of interprofessional team members working in an acute medical ward concerning embedding of high quality palliative care. Use of NPT as an analytic frame- work enabled an understanding of how care of the dying practices were or were not becoming normalized within an acute setting, identification of barriers and enablers to provisions of care excellence and recommendations for learning strategies to support EOL care excellence (see implications section and Table 3). However, the study took place in a single acute care setting within a tertiary hospital which limits the broader applicability of its findings. Potential transferability is enhanced by rich descriptions, using purposive sampling and the findings resonance with existing literature from other settings [20, 31]. The study relied on individual accounts of EOL care practices and engagement with CgDp rather than observations. To increase the study’s dependability , data were collected until saturation, no new themes, and data were analysed iteratively by an interprofessional team. Further strategies to enhance study credibility in- cluded seeking feedback from participants on our data analysis. There would have been value in also having the middle range programme theory model confirmed by further professional validation. This was not practical; however, the model has been informed by NPT and gen- erated through extensive, reflexive discussions within the research team. Finally, to quantify outcomes, there may have been value in conducting a chart audit to deter- mine when the CgDp had been used, and with what ef- fects, however, our goal in the present study was to primarily explore the process of implementation.
For the purpose of the present study, the following defi- nitions will be used: (1) quality of life is defined as all measures or proxies of quality of life, care, or dying at the end of life, containing six domains (physical health, psychological health, independence level, social relations, environment, spirituality/religion/personal beliefs ); (2) a health intervention is any “act performed for, with or on behalf of a person or population whose purpose is to assess, improve, maintain, promote or modify health, functioning or health conditions”  which also in- cludes decisions about treatment, place of care, place of death, etc.; (3) seriously ill children are defined as people, who are suffering from a progressive life- threatening disorder, excluding acutely ill children at the end of life, i.e., those whose illness is due to trauma, sui- cide, or other unforeseen complications not related to a syndrome or illness; and (4) end of life is the period pre- ceding the death of the child during the last months, weeks, or days. To maximize the sensitivity of our search, we will not delineate a cut-off point in months or days for the end-of-life period, nor will we define a finite group of disorders for the same reason.
This study also has several limitations. Firstly, the study questionnaires address symptoms and care during the last 48 hours of life, which is more or less the target period of the Care Guide. However, it is unknown how long the geriatric patients will be supported by the Care Guide for the Last Days of Life. Earlier studies have shown that the median duration and average time of use of the LCP in the hospital setting was 16 and 29 hours respectively [35,36]. However, another study found that 44% of hospice patients were supported by the LCP dur- ing two days . We therefore cannot preclude that we may be measuring the quality of care during a period when the Care Guide had not yet been put into effect, which could dilute the apparent effect of the Care