The need for palliative care in sub-Saharan Africa is staggering: this region shoulders over 67% of the global burden of HIV/AIDS and cancer. However, provisions for these essential services remain limited and poorly integrated with national health systems in most nations. Moreover, the evidence base for palliative care in the region remains scarce. This study chronicles the development and evaluation of DataPall, an open-source electronic medical records system that can be used to track patients, manage data, and generate reports for palliative care providers in these settings.
DataPall was developed using design criteria encompassing both functional and technical objectives articulated by hospital leaders and palliative care staff at a leading palliative care center in Malawi. The database can be used with computers that run Windows XP SP 2 or newer, and does not require an internet connection for use. Subsequent to its development and implementation in two hospitals, DataPall was tested among both trained and untrained hospital staff populations on the basis of its usability with comparison to existing paper records systems as well as on the speed at which users could perform basic database functions. Additionally, all participants evaluated this program on a standard system usability scale.
In a study of health professionals in a Malawian hospital, DataPall enabled palliative care providers to find patients’ appointments, on average, in less than half the time required to locate the same record in current paper records. Moreover, participants generated customizable reports documenting patient records and comprehensive reports on providers’ activities with little training necessary. Participants affirmed this ease of use on the system usability scale.
DataPall is a simple, effective electronic medical records system that can assist in developing an evidence base of clinical data for palliative care in low resource settings. The system is available at no cost, is specifically designed to chronicle care in the region, and is catered to meet the technical needs and user specifications of such facilities.
Palliative care; Electronic medical records system; Evidence-based medicine; Africa; Database
Many people live and die in pain in Africa. We set out to describe patient, family and local community perspectives on the impact of three community based palliative care interventions in sub-Saharan Africa.
Three palliative care programmes in Uganda, Kenya and Malawi were studied using rapid evaluation field techniques in each country, triangulating data from three sources: interviews with key informants, observations of clinical encounters and the local health and social care context, and routine data from local reports and statistics.
We interviewed 33 patients with advanced illness, 27 family carers, 36 staff, 25 volunteers, and 29 community leaders and observed clinical care of 12 patients. In each site, oral morphine was being used effectively. Patients valued being treated with dignity and respect. Being supported at home reduced physical, emotional and financial burden of travel to, and care at health facilities. Practical support and instruction in feeding and bathing patients facilitated good deaths at home.
In each country mobile phones enabled rapid access to clinical and social support networks. Staff and volunteers generally reported that caring for the dying in the face of poverty was stressful, but also rewarding, with resilience fostered by having effective analgesia, and community support networks.
Programmes were reported to be successful because they integrated symptom control with practical and emotional care, education, and spiritual care. Holistic palliative care can be delivered effectively in the face of poverty, but a public health approach is needed to ensure equitable provision.
Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients’ spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations.
The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items’ content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity.
(1) Peace was interpreted according to the themes ‘perception of self and world’, ‘relationship to others’, ‘spiritual beliefs’ and ‘health and healthcare’. Life worthwhile was interpreted in relation to ‘perception of self and world’, ‘relationship to others’ and ‘identity’. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p < 0.001). Correlations with Spirit 8 items were weak to moderate.
Findings demonstrate the utility of POS items peace and life worthwhile as distinct but related measures of spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population.
Outcome measurement; Spiritual well-being; Content validity; Construct validity; Sub-Saharan Africa; Palliative care
Specialist palliative care is being increasingly recognised and developed to improve end-of-life care in many developed countries. However, only a small proportion of the total number of patients with incurable, progressive diseases actually has direct contact with specialist palliative care practitioners. Using the German situation as an example, the main purpose of this paper is to argue that the emphasis on specialist palliative care services without a similar encouragement of primary palliative care will deliver a constrained service.
For the vast majority of people with incurable, progressive diseases, good palliative care delivered by General Practitioners and community nurses, with access to specialist support when needed, is the optimal response. In Germany, specialist palliative care in the community was established in the 2007 health care reforms. However actual and potential delivery of palliative care by general practitioners and community based nurses has been sorely neglected. The time-consuming care of palliative patients and their families is currently far from accurately reflected in German, indeed most European primary care payment systems. However, it is not just a question of adequate financial compensation but also of the recognition of the fundamental value of this intense form of holistic family medicine.
It is imperative palliative care carried out by community nurses and general practitioners is better recognised by health professionals, health insurers, government and the scientific community as a central part of the delivery of health care for people in the last phase of life. Health systems should be arranged so that this critical role of general practice and primary care is intentionally fostered. Palliative care carried out by generalists needs an identity at an academic and practical level, developing in concert with specialist palliative care.
Much progress has been made in the provision of palliative care across sub-Saharan Africa, however much still remains to be done, particularly in the area of children’s palliative care (CPC). The Beacon Centres programme was set up in 2009, aimed at improving access to CPC in South Africa, Uganda and Tanzania through more and better-trained health professionals and CPC clinical services of a high standard. Having identified sites in each country to develop into CPC Beacon Centres, Navigators were identified who would be the ‘champions’ for CPC in those sites and lead a programme of training, mentorship and support. Five navigators (2 in Uganda and Tanzania and 1 in South Africa) were trained between September and December 2009. Following this they undertook CPC needs assessments at the 3 centres and set up and delivered a six-month CPC training programme, providing mentorship and support to students to enable them to integrate CPC into their workplaces. To date, 188 participants have commenced the six-month course, with 80 having completed it. CPC has been integrated into the activities of the centres and a CPC virtual resource centre set up in South Africa. The achievements from the Beacon project have been great and the work of the navigators immense, but as in all projects it has not been without its challenges. Lessons learnt include issues around: the focus of the project; the length and nature of the training; assessment; accreditation; the choice of navigators; mentoring; administrative support; co-ordination; the choice of project sites; and the integration of CPC into services. The need for CPC is not going to go away and it is therefore important that models of scaling-up are found that are not only practical, feasible, affordable and sustainable, but that focus on the outcome of improved CPC for all those who need it. It is hoped that the lessons shared from the Beacon Project will help in developing and implementing such models.
Palliative care; Children; Africa; Service delivery; Education; Mentors
The dissemination of palliative care for patients presenting complex chronic diseases at various stages has become an important matter of public health. A death census in Swiss long-term care facilities (LTC) was set up with the aim of monitoring the frequency of selected indicators of palliative care.
The survey covered 150 LTC facilities (105 nursing homes and 45 home health services), each of which was asked to complete a questionnaire for every non-accidental death over a period of six months. The frequency of 4 selected indicators of palliative care (resort to a specialized palliative care service, the administration of opiates, use of any pain measurement scale or other symptom measurement scale) was monitored in respect of the stages of care and analysed based on gender, age, medical condition and place of residence.
Overall, 1200 deaths were reported, 29.1% of which were related to cancer. The frequencies of each indicator varied according to the type of LTC, mostly regarding the administration of opiate. It appeared that the access to palliative care remained associated with cancer, terminal care and partly with age, whereas gender and the presence of mental disorders had no effect on the indicators. In addition, the use of drugs was much more frequent than the other indicators.
The profile of patients with access to palliative care must become more diversified. Among other recommendations, equal access to opiates in nursing homes and in home health services, palliative care at an earlier stage and the systematic use of symptom management scales when resorting to opiates have to become of prime concern.
The number of palliative care patients who live at home and have non-curable life-threatening diseases is increasing. This is largely a result of modern palliative care techniques (e.g. specialised out-of-hospital palliative medical care services), changes in healthcare policy and the availability of home care services. Accordingly, pre-hospital emergency physicians today are more likely to be involved in out-of-hospital emergency treatment of palliative care patients with advanced disease.
In a prospective multi-centre study, we analysed all palliative emergency care calls during a 24-month period across four emergency services in Germany. Participating pre-hospital emergency physicians were rated according to their expertise in emergency and palliative care as follows—group 1: pre-hospital emergency physicians with high experience in emergency and palliative medical care, group 2: pre-hospital emergency physicians with high experience in emergency medical care but less experience in palliative medical care and group 3: pre-hospital emergency physicians with low experience in palliative and emergency medical care.
During the period of interest, the centres received 361 emergency calls requiring a response to palliative care patients (2.8% of all 12,996 emergency calls). Ten percent of all patients were treated by group 1; 42% were treated by group 2 and 47% were treated by group 3. There was a statistically significant difference in the treatment of palliative care patients (e.g. transfer to hospital, symptom control, end-of-life decision) as a result of the level of expertise of the investigated pre-hospital emergency physicians (p< 0.01).
In Germany, out-of-hospital emergency medical treatment of palliative care patients depends on the expertise in palliative medical care of the pre-hospital emergency physicians who respond to the call. In our investigation, best out-of-hospital palliative medical care was given by pre-hospital emergency physicians who had significant expertise in palliative and emergency medical care. Our results suggest that it may be necessary to take the core principles of palliative care into consideration when conducting out-of-hospital emergency medical treatment of palliative care patients.
Emergency medicine; Palliative medicine; Palliative medical care; Pre-hospital emergency physician; Palliative care team; End-of-life decision
To maintain patients’ quality of life is one of the major goals in palliative home care provided by general practitioners (GPs). GPs need adequate training to care for palliative patients. The paper seeks to evaluate whether a specific training in Germany (PAMINO) has any improving impact on the care of palliative patients and their health-related quality of life.
From September 2007 until June 2009, GPs and their palliative care patients with cancer participated in a study to evaluate palliative courses for GPs offered by a regional palliative care initiative (PAMINO). For a period of six months at most or until death, patients were asked monthly to judge their quality of life on the Quality of Life Questionnaire Core 15 Palliative (QLQ-C15-PAL) of the European Organization for Research and Treatment of Cancer (EORTC) and on the Palliative Care Outcome Scale (POS). The ‘Overall quality of life’ scale of the QLQ-C15-PAL takes values between 0 and 100 with higher values indicating a higher quality of life. The POS sum scale takes values between 0 and 40 with higher values indicating worse care outcomes. Patients cared for by PAMINO-trained GPs and patients cared for by other GPs (control group) are compared using t-tests for differences in group means.
One hundred patients participated in the study; 96 patients filled out the questionnaires at least once. On the QLQ-C15-PAL, mean quality of life of the patient groups of PAMINO-trained and other GPs were 37.7 (SD = 25.5) and 39.4 (SD = 26.3) (p = .76), respectively. On the POS, respective mean values of 13.6 (SD = 5.8) and 12.0 (SD = 6.5) (p = .26) were given. Patients cared for by a PAMINO-trained GP did not report better quality of life and care outcomes than patients cared for by other general practitioners.
Patients cared for by PAMINO-trained and other GPs in our study did not report differences in quality of life. Quality of life and care outcomes of all patients were better than of palliative patients in institutional or specialized care, emphasizing the ability of GPs to provide adequate care for these vulnerable patients. However, conclusions need to be drawn cautiously since the study had a small sample size.
Current Controlled Trials ISRCTN78021852
Many HIV/AIDS patients experience pain often due to advanced HIV/AIDS infection and side effects of treatment. In sub-Saharan Africa, pain management for people with HIV/AIDS is suboptimal. With survival extended as a direct consequence of improved access to antiretroviral therapy, the prevalence of HIV/AIDS related pain is increasing. As most care is provided at home, the management of pain requires patient and family involvement. Pain education is an important aspect in the management of pain in HIV/AIDS patients. Studies of the effectiveness of pain education interventions for people with HIV/AIDS have been conducted almost exclusively in western countries.
A randomised controlled trial is being conducted at the HIV and palliative care clinics of two public hospitals in Malawi. To be eligible, patient participants must have a diagnosis of HIV/AIDS (stage III or IV). Carer participants must be the individual most involved in the patient’s unpaid care. Eligible participants are randomised to either: (1) a 30-minute face-to-face educational intervention covering pain assessment and management, augmented by a leaflet and follow-up telephone call at two weeks; or (2) usual care. Those allocated to the usual care group receive the educational intervention after follow-up assessments have been conducted (wait-list control group). The primary outcome is pain severity measured by the Brief Pain Inventory. Secondary outcomes are pain interference, patient knowledge of pain management, patient quality of life, carer knowledge of pain management, caregiver motivation and carer quality of life. Follow-up assessments are conducted eight weeks after randomisation by palliative care nurses blind to allocation.
This randomised controlled trial conducted in sub-Saharan Africa among people living with HIV/AIDS and their carers will assess whether a pain education intervention is effective in reducing pain and improving pain management, quality of life and carer motivation.
Current Controlled Trials ISRCTN72861423.
HIV/AIDS; Trial; Pain; Carers; Educational intervention; Palliative care
Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made.
To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care.
A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement.
The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project.
The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO)' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated.
The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS), pain (VAS), and burden for family caregivers (BSFC). The inclusion of physicians and patients in the study starts in March 2007.
Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered.
Trial registration: The study was registered at ‘current controlled trials (CCT)’, registration number: ISRCTN78021852.
Background. Studies indicate problems between different professional groups working with palliative care and the organisation of palliative home care at nursing homes. The purpose of this study is to examine international experiences and cooperative development initiatives regarding the organisation of community palliative care services. Method. The study has been carried out as a literature study based on bibliographic searches in international databases with selected key words. Results and Conclusion. The study of the literature identified 19 studies described in 20 articles that relate to development efforts and interventions regarding the organisation of palliative care in communities. Nearly, all of the studies were based on health care professionals' assessments of users (the relatives). However, it is unknown whether or how patients and relatives experience a positive effect of the interventions. The literature study shows that it is a great methodological challenge to complete and evaluate studies concerning organisation and cooperation using methods that make the results useful for others.
The palliative services and programs have been developed with different intensity and modalities in all countries. Several studies have reported that a geographic variation in the availability and provision of palliative care services between and within countries exists, and that a number of vulnerable groups are excluded from these services. This survey estimates the distribution of places of care for Italian cancer patients during the last three months of their lives, the proportion receiving palliative care support at home and in hospital, and the factors associated with the referral to palliative care services.
This is a mortality follow-back survey of 2,000 cancer deaths identified with a 2-stage probability sample, representative of the whole country. Information on patients' experience was gathered from the non-professional caregiver through an interview, using an adapted version of the VOICES questionnaire. A section of the interview concerned the places of care and the palliative care services provided to patients. Multivariate logistic regression analyses were conducted to identify the determinants of palliative care service use.
Valid interviews were obtained for 67% of the identified caregivers (n = 1,271). Most Italian cancer patients were cared for at home (91%) or in hospital (63%), but with substantial differences within the country. Only 14% of Italian cancer patients cared for at home against 20% of those admitted to hospital, received palliative care support. The principal determinants identified for receiving these service were: an extended interval between diagnosis and death (P = 0.01) and the caregiver's high educational level (P = 0.01) for patients at home; the low patient's age (P < 0.01) and the caregiver's high educational level (P = 0.01) for patients in hospital.
In Italy palliative care services are not equally available across the country. Moreover, access to the palliative care services is strongly associated with socio demographic characteristics of the patients and their caregivers. Italian Policy-makers need to equalise palliative care provision and access across the country to meet the needs of all cancer patients.
Objective To explore how transitions to a palliative care approach are perceived to be managed in acute hospital settings in England.
Design Qualitative study.
Setting Secondary or primary care settings in two contrasting areas of England.
Participants 58 health professionals involved in the provision of palliative care in secondary or primary care.
Results Participants identified that a structured transition to a palliative care approach of the type advocated in UK policy guidance is seldom evident in acute hospital settings. In particular they reported that prognosis is not routinely discussed with inpatients. Achieving consensus among the clinical team about transition to palliative care was seen as fundamental to the transition being effected; however, this was thought to be insufficiently achieved in practice. Secondary care professionals reported that discussions about adopting a palliative care approach to patient management were not often held with patients; primary care professionals confirmed that patients were often discharged from hospital with “false hope” of cure because this information had not been conveyed. Key barriers to ensuring a smooth transition to palliative care included the difficulty of “standing back” in an acute hospital situation, professional hierarchies that limited the ability of junior medical and nursing staff to input into decisions on care, and poor communication.
Conclusion Significant barriers to implementing a policy of structured transitions to palliative care in acute hospitals were identified by health professionals in both primary and secondary care. These need to be addressed if current UK policy on management of palliative care in acute hospitals is to be established.
Hospital-based palliative care is becoming increasingly prevalent. There is growing evidence that it is having a positive impact on patients and their loved ones. In 2008, national data indicated that 58.5% of hospitals with 50 or more beds had a palliative care program. Data from a 2008 survey of California acute care hospitals showed that although 33% of sites had inpatient consultation services, one in five had been operational for only one year. As nascent palliative care programs grow, new issues arise and needs and plans change. Just as palliative care programs benefit from marketing and education plans, they also benefit from a plan to leverage external resources. Largely a missed opportunity, external resources such as organizations, networks, and experts can help palliative care service (PCS) leaders and team members gain information on everything from best practices to funding opportunities, while serving as sources for personal and professional support. The growing number of active PCSs and the increasing availability of support and expertise ensure that new programs no longer have to face challenges alone. Further, the steady increase in the number of new programs has created opportunities for those who are more experienced to serve as mentors for peers who are navigating the challenges of growing and sustaining a clinical service. The authors encourage both mentors and mentees to seek support from or provide support to others in the field. Leveraging the collective expertise and experiences in our field can ensure that palliative care continues to thrive and grow.
Although many patients with cancer would prefer to die at home, most die in hospital. We carried out a study to describe the yearly trends in the place of death between 1992 and 1997 and to determine predictors of out-of-hospital death for adults with cancer in Nova Scotia.
In this population-based study, we linked administrative health data from 2 databases — the Nova Scotia Cancer Centre Oncology Patient Information System and the Queen Elizabeth II Health Sciences Centre Palliative Care Program — for all adults in Nova Scotia who died of cancer from 1992 to 1997. We also used grouped neighbourhood income information from the 1996 Canadian census. Death out of hospital was defined as death in any location other than an acute care hospital facility. We used logistic regression analysis to identify the odds of dying out of hospital over time and to identify factors predictive of out-of-hospital death.
A total of 14 037 adults died of cancer during the study period. The data for 101 people were excluded because of missing information regarding place of death. Of the remaining 13 936 people, 10 266 (73.7%) died in hospital and 3670 (26.3%) died out of hospital. Over the study period the proportion of people who died out of hospital rose by 52%, from 19.8% (433/2182) in 1992 to 30.2% (713/2359) in 1997. Predictors associated with out-of-hospital death included year of death (for 1997 v. 1992, adjusted odds ratio [OR] 1.8, 95% confidence interval [CI] 1.5–2.0), female sex (adjusted OR 1.2, 95% CI 1.1–1.3), age (for ≥ 85 v. 18–44 years, adjusted OR 2.2, 95% CI 1.7–2.8), length of survival (for 61–120 v. ≤60 days, adjusted OR 2.2, 95% CI 1.8–2.6; for 121–180 v. ≤60 days, adjusted OR 2.5, 95% CI 2.2–2.8), having received palliative radiation (adjusted OR 0.8, 95% CI 0.7–0.9) and region of death (Cape Breton v. Halifax, adjusted OR 0.5, 95% CI 0.5–0.6). Among Halifax residents, registration in the Palliative Care Program was also a significant predictor of out-of-hospital death (adjusted OR 1.4, 95% CI 1.2–1.7). Tumour group, neighbourhood income and residence (urban v. rural) were not predictive of out-of-hospital death in multivariate analysis.
Over time, more patients with cancer, especially women, elderly people and people with longer survival after diagnosis, died outside of hospital in Nova Scotia.
To identify doctors' perceptions of the need for palliative care for heart failure and barriers to change.
Qualitative study with focus groups.
North west England.
General practitioners and consultants in cardiology, geriatrics, palliative care, and general medicine.
Doctors supported the development of palliative care for patients with heart failure with the general practitioner as a central figure. They were reluctant to endorse expansion of specialist palliative care services. Barriers to developing approaches to palliative care in heart failure related to three main areas: the organisation of health care, the unpredictable course of heart failure, and the doctors' understanding of roles. The health system was thought to work against provision of holistic care, exacerbated by issues of professional rivalry and control. The priorities identified for the future were developing the role of the nurse, better community support for primary care, and enhanced communication between all the health professionals involved in the care of patients with heart failure.
Greater consideration should be given to the care of patients dying with heart failure, clarifying the roles of doctors and nurses in different specialties, and reshaping the services provided for them. Many of the organisational and professional issues are not peculiar to patients dying with heart failure, and addressing such concerns as the lack of coordination and continuity in medical care would benefit all patients.
What is already known on this topicPatients with heart failure have unmet needs for health care at the end of lifeSpecialist palliative care services see few patients with heart failureThe national service framework for coronary heart disease endorses the provision of palliative care for heart failureLittle evidence exists on how this care should be provided, and doctors' views are not knownWhat this study addsBarriers to adopting a palliative care approach in heart failure care relate to the current organisation of health services, the difficulties of prognostication, and doctors' understanding of roles and responsibilitiesDoctors believe that the general practitioner should be the central figure in palliative care for heart failure, supported by specialistsDoctors' future priorities are developing the role of nurses, increasing essential community services, such as district nursing, and improving communication with colleagues
Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care.
In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information.
Palliative Care; Pediatric Critical Care
Clinical depression is highly prevalent yet under-detected and under-treated in palliative care settings and is associated with a number of adverse medical and psychological outcomes for patients and their family members. This article presents a study protocol to evaluate a training intervention for non-physician palliative care staff to improve the recognition of depression and provide support for depressed patients and their family members. Details of the hypotheses and expected outcomes, study design, training program development and evaluation measures are described.
Methods and Design
A randomised controlled trial will be implemented across two palliative care services to evaluate the "Training program for professional carers to recognise and manage depression in palliative care settings". Pre-, post- and three-month follow-up data will be collected to assess: the impact of the training on the knowledge, attitudes, self-efficacy and perceived barriers of palliative care staff when working with depression; referral rates for depression; and changes to staff practices. Quantitative and qualitative methods, in the form of self-report questionnaires and interviews with staff and family members, will be used to evaluate the effectiveness of the intervention.
This study will determine the effectiveness of an intervention that aims to respond to the urgent need for innovative programs to target depression in the palliative care setting. The expected outcome of this study is the validation of an evidence-based training program to improve staff recognition and appropriate referrals for depression, as well as improve psychosocial support for depressed patients and their family members.
Australia and New Zealand Clinical Trials Register (ANZCTR): ACTRN12610000183088
During the last stage of life, palliative care patients often experience episodes of respiratory distress, bleeding, pain or seizures. In such situations, caregivers may call emergency medical services leading to unwanted hospital admissions. The study aims to show the influence of our palliative care team to reducing emergency calls by cancer patients or their relatives during the last six month of life.
Fifty relatives of deceased patients who had been attended by our palliative care team were randomly selected. Data was obtained retrospectively during a structured interview. In addition to demographic data, the number of emergency calls made during the final six months of the patient's life, the reason for the call and the mental compound score (MCS-12) of the caregivers was registered.
Forty-six relatives agreed to the interview. Emergency calls were placed for 18 patients (39%) during the final six months of their lives. There were a total of 23 emergency calls. In 16 cases (70%) the patient was admitted to the hospital. Twenty-one (91%) of the calls were made before patients had been enrolled to receive palliative care from the team, and two (9%) were made afterwards. The mean mental compound score of the caregivers at the time of the interview was 41 (range 28–57). There was a lack of correlation between MCS-12 and number of emergency calls.
Emergency calls were more likely to occur if the patients were not being attended by our palliative care team. Because of the lack of correlation between MCS-12 and the number of emergency calls, the MCS-12 cannot indicate that acutely stressful situations triggered the calls. However, we conclude that special palliative care programs can reduce psychosocial strain in family caregivers. Therefore, the number of emergency calls may be reduced and this fact allows more palliative patients to die at home.
A multidisciplinary outpatient clinic at a tertiary care children’s hospital supported and staffed by a children’s hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format.
The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis.
In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic.
A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.
Ambulatory care facilities; Continuity of patient care; Paediatrics; Palliative care
Hospital palliative care programs provide high-quality, comprehensive care for seriously ill patients and their families.
To examine geographic variation in patient and medical trainee access to hospital palliative care and to examine predictors of these programs.
Primary and secondary analyses of national survey and census data. Hospital data including hospital palliative care programs were obtained from the American Hospital Association (AHA) Annual Survey Database™ for fiscal year 2006 supplemented by mailed surveys. Medical school-affiliated hospitals were obtained from the American Association of Medical Colleges, Web-site review, and telephone survey. Health care utilization data were obtained from the Dartmouth Atlas of Health Care 2008. Multivariate logistic regression was used to identify characteristics significantly associated with the presence of hospital palliative care.
A total of 52.8% of hospitals with 50 or more total facility beds reported hospital palliative care with considerable variation by state; 40.9% (144/352) of public hospitals, 20.3% (84/413) of for-profit hospitals, and 28.8% (160/554) of Medicare sole community providers reported hospital palliative care. A total of 84.5% of medical schools were associated with at least one hospital palliative care program. Factors significantly associated (p < 0.05) with hospital palliative care included geographic location, owning a hospice program, having an American College of Surgery approved cancer program, percent of persons in the county with a university education, and medical school affiliation. For-profit and public hospitals were significantly less likely to have hospital palliative care when compared with nonprofit institutions. States with higher hospital palliative care penetration rates were observed to have fewer Medicare hospital deaths, fewer intensive care unit/cardiac care unit (ICU/CCU) days and admissions during the last 6 months of life, fewer ICU/CCU admission during terminal hospitalizations, and lower overall Medicare spending/enrollee.
This study represents the most recent estimate to date of the prevalence of hospital palliative care in the United States. There is wide geographic variation in access to palliative care services although factors predicting hospital palliative care have not changed since 2005. Overall, medical students have high rates of access to hospital palliative care although complete penetration into academic settings has not occurred. The association between hospital palliative care penetration and lower Medicare costs is intriguing and deserving of further study.
For patients hospitalized with life-threatening illnesses and their families, palliative care consultants can provide critical support by providing information about prognosis, ensuring that symptoms are managed, helping to clarify goals of care, and addressing psychosocial and spiritual concerns. However, once patients leave the hospital, many hospital-based palliative care teams (PCTs) cannot continue to play active roles in patient care. Gaps in discharge planning not only decrease quality of life for patients, but also translate into lack of support for caregivers. The palliative care population would be expected to benefit from a customized approach to hospital discharge. The aim of this study was to identify the range of health care experiences of family caregivers and patients who received palliative care consultations after they left the hospital, and to understand how PCTs might best prepare patients and caregivers for the post-hospital experience.
Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion.
The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia.
The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented.
Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined.
The decentralization of HIV services has been shown to improve equity in access to care for the rural poor of sub-Saharan Africa. This study aims to contribute to our understanding of the impact of decentralization on costs borne by patients. Such information is valuable for economic evaluations of anti-retroviral therapy programmes that take a societal perspective. We compared costs reported by patients who received care in an urban centralized programme to those in the same district who received care through rural decentralized care (DC).
A cross-sectional survey on patient characteristics and costs associated with accessing HIV care was conducted, in May 2010, on 120 patients in centralized care (CC) at a tertiary referral hospital and 120 patients in DC at five rural health centres in Zomba District, Malawi. Differences in costs borne by each group were compared using χ2 and t-tests, and a regression model was developed to adjust for confounders, using bootstrapping to address skewed cost data.
There was no significant difference between the groups with respect to sex and age. However, there were significant differences in socio-economic status, with higher educational attainment (p<0.001), personal income (p=0.007) and household income per person (p=0.005) in CC. Travel times were similar (p=0.65), as was time waiting at the clinic (p=0.63) and total time spent seeking care (p=0.65). There was a significant difference in travel-related expenses (p<0.001) related to the type of travel participants noted that they used. In CC, 60% of participants reported using a mini-bus to reach the clinic; in DC only 4% reported using a mini-bus, and the remainder reported travelling on foot or by bicycle. There were no significant differences between the groups in the amount of lost income reported or other out-of-pocket costs. Approximately 91 Malawi Kwacha (95% confidence intervals: 1–182 MKW) or US$0.59 represents the adjusted difference in total costs per visit between CC and DC.
Even within a system of HIV/AIDS care where patients do not pay to see clinicians or for most medications, they still incur costs. We found that most costs are travel related. This has important implications for poorer patients who live at a distance from health facilities for whom these costs may be significant.
antiretroviral therapy; highly active; costs and cost analysis; Malawi; HIV; acquired immunodeficiency syndrome