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 survey of access to medical services in nursing and residential homes in England.

BACKGROUND: Residential and nursing homes make major demands on NHS services. AIM: To investigate patterns of access to medical services for residents in homes for older people. DESIGN OF STUDY: Telephone survey. SETTING: All nursing and dual registered homes and one in four residential homes located in a stratified random sample of 72 English primary care group/trust (PCG/T) areas. METHOD: A structured questionnaire investigating home characteristics, numbers of general practitioners (GPs) or practices per home, homes' policies for registering new residents with GPs, existence of payments to GPs, GP services provided to homes, and access to specialist medical care. RESULTS: There were wide variations in the numbers of GPs providing services to individual homes; this was not entirely dependent on home size. Eight percent of homes paid local GPs for their services to residents; these were more likely to be nursing homes (33%) than residential homes (odds ratio [OR] = 10.82, [95% CI = 4.48 to 26.13], P<0.001) and larger homes (OR for a ten-bed increase = 1.51 [95% CI = 1.28 to 1.79], P<0.001). Larger homes were more likely to encourage residents to register with a 'home' GP (OR for a ten-bed increase = 1.16 [95% CI = 1.04 to 1.31], P = 0.009). Homes paying local GPs were more likely to receive one or more additional services, over and above GPs' core contractual obligations. Few homes had direct access to specialist clinicians. CONCLUSION: Extensive variations in homes' policies and local GP services raise serious questions about patient choice, levels of GP services and, above all, about equity between residents within homes, between homes and between those in homes and in the community.     

Addressing the problems associated with general practitioners'' workload in nursing and residential homes: findings from a qualitative study.

BACKGROUND: Caring for older people in residential and nursing homes makes major demands on general practitioners (GPs). AIM: To investigate the perceptions and experiences of home managers and GPs of the provision of general medical services for older residents. DESIGN OF STUDY: In-depth qualitative study. SETTING: Forty-two nursing and residential homes in five locations in England, interviewing home managers and eight of their residents' GPs. METHOD: Semi-structured face-to-face and telephone interviews. RESULTS: Most homes endorse principles of continuity of care and patient choice. Although many homes therefore deal with a large number of GPs, with the inherent difficulties of coordinating care and duplication of GP effort, limitations in residents' choice of GP result in the majority of residents in many homes being registered with only one or two practices. Contracts between homes and GPs may provide opportunities for improving medical care but do not guarantee additional services and have implications for patient choice and residents' fees. Visits on request form the bulk of GPs' workload in homes but can be hard to obtain for residents and may not be appropriate. Regular weekly surgeries are preferred by many homes but may have additional workload implications for GPs. CONCLUSION: The assumption that patient choice and continuity in medical care are paramount for older people in nursing and residential homes is questioned. While recognition of the additional workload for GPs working in these settings is necessary, this should be accompanied by additional NHS remuneration. Further research is urgently required to identify which models of GP provision would most benefit both residents and GPs.     

Comparison of end-of-life care for older people living at home and in residential homes: a mortality follow-back study among GPs in the Netherlands

Background

The proportion of older people is increasing, therefore their place of residence and place of care at the end of life are becoming increasingly important.

Aim

To compare aspects of end-of-life care among older people in residential homes and home settings in the Netherlands.

Design and setting

Nationwide representative mortality follow-back study among GPs in the Netherlands.

Method

The study included patients aged ≥65 years who died non-suddenly, whose longest place of residence in their last year of life was at home or in a residential home (n = 498). Differences were analysed using Pearson’s χ² test, Mann-Whitney U tests, and multivariate logistic regression.

Results

Controlling for the differences between the populations in home settings and residential homes, no differences were found in treatment goals, communication about end-of-life care, or use of specialised palliative care between the two settings. However, people living in a residential home were more likely to have received palliative care from a GP than people living at home (OR 2.84, 95% confidence interval [CI] = 1.41 to 5.07). In residential homes, people more often experienced no transfer between care settings (OR 2.76, 95% CI = 1.35 to 5.63) and no hospitalisations (OR 2.2, 95% CI = 1.04 to 4.67) in the last 3 months of life, and died in hospital less often (OR 0.78, 95% CI = 0.63 to 0.97) than those people living at home.

Conclusion

Despite similar treatment goals, care in residential homes seems more successful in avoiding transfers and hospitalisation at the end of life. Especially since older people are encouraged to stay at home longer, measures should be taken to ensure they are not at higher risk of transfers and hospitalisations in this setting.     

Issues in Dutch palliative care: readjusting a distorted image

This issue presents a review of several issues in Dutch palliative care, paying attention to readjusting a distorted image due to the euthanasia practice in the Netherlands. A few articles stress the evolution of palliative care (especially in the UK and the Netherlands), developed palliative care services in the Netherlands, and new developments in the Netherlands concerning the prevention of euthanasia through palliative care. Also the needs concerning palliative care for children as well as for chronic psycho-geriatrics patients are presented. Further attention is paid to the organisation of palliative care, focusing at evaluative research on palliative support teams, caring for caregivers (experiences and evaluation of interventions for palliative care teams), and effects of transmural care on coordination and continuity of care. Finally, some articles focus on ethical considerations in the treatment of pain in hospice movement, ethical evaluation of clinical trials in palliative care, and the role of informed consent in palliative radiotherapy, stressing the participation of patients and proxies in treatment decisions. Conclusions are presented on the consequences for educational and counselling aspects of palliative care.     

The increased needs of patients in nursing homes and patients receiving home health care

To evaluate the effects of Medicare's prospective payment system and Medicaid's preadmission regulations on long-term care, we constructed clinical profiles in 1982 and 1986 of about 500 randomly selected patients from each of three types of facilities: nursing homes with relatively high proportions of Medicare patients (high-Medicare nursing homes; n = 23), traditional nursing homes (n = 19), and home health agencies (n = 18). Data were obtained directly from the care givers on the medical problems, problems requiring skilled nursing, and functional problems of these representative patients from 12 states. For Medicare patients in high-Medicare nursing homes, the prevalence of medical problems and problems requiring skilled nursing increased substantially, whereas the prevalence of functional problems remained relatively unchanged. For example, from 1982 to 1986 there was a marked increase in the frequency of tube feedings (21 to 29 percent), oxygen use (6 to 14 percent), urinary tract infection (7 to 13 percent), and diastolic hypertension (1 to 10 percent), but not difficulty in eating (48 to 51 percent) or speaking (28 to 29 percent). In contrast, in traditional nursing homes there was an increase in the prevalence of functional disability, but virtually no change in that of problems requiring medical and skilled nursing care. In home health care the functional care needs of Medicare patients increased significantly, and there was a slight increase in the prevalence of problems requiring medical and skilled nursing care. We conclude that from 1982 to 1986 the needs of patients in long-term care increased substantially. This trend appears to result from Medicare's prospective payment system, which encourages earlier hospital discharge to long-term care settings, and from Medicaid's policy of de-institutionalization. Meeting this greater need for care will be costly. We require a better system of reimbursing for long-term care and ensuring its quality.     

Experiences, knowledge, and opinions on palliative care among Romanian general practitioners

Aim

To assess experience, knowledge, and opinions of Romanian general practitioners (GPs) on palliative health care in Romania.

Methods

A questionnaire survey was performed among 1283 GPs in five districts of Romania in 2004. The data were collected on the GPs’ self-assessed experience in, knowledge of, and opinion on palliative care, entered into a database, and analyzed. The GPs were also asked to indicate if they needed to improve their knowledge about palliative care.

Results

The response rate was 71%. GPs mostly reported having limited experience in providing palliative care, with 24% reporting to have provided palliative care frequently, and 55% reporting to have it provided sometimes. Significant correlations were found between the GPs’ experience in palliative care provision and their age, sex, and place of work. The majority of Romanian GPs reported that their medical knowledge was inadequate for the provision of care to terminal patients at home. Over 80% of GPs agreed to develop palliative care services and to participate in a training program.

Conclusion

GPs in Romania reported to recognize the need for improvement of palliative care delivery in their country. They expressed the need for better knowledge of palliative care and agreed that multidisciplinary teams to provide palliative care at home would be the best form of delivering this type of health care.Palliative care is a relatively new form of health care provision in Central-Eastern European (CEE) countries unlike in Western Europe, where it has been an established health care specialty for decades (1,2). The most widely used model of palliative care provision in CEE countries is the hospice model. However, the number and availability of hospices and financial means allocated to these institutions have been insufficient, and the population in need of palliative care has been increasing. Palliative care professionals are less focused on the needs of patients and possible development of a new model for palliative care provision than they are on the “vested interests” of the model, ie, preventing the hospices in which they work from being closed down.With aging of the population, the morbidity profile in CEE countries has changed and so have the health care needs. The need for nursing and care, including palliative care, is increasing and largely uneven distribution of medical care facilities between urban and rural areas only aggravates the problem. All these factors bring the palliative care issues to focus (3).Until recently, palliative care in Romania and many CEE countries was primarily associated with terminal care of patients with cancer and the hospice movement (4,5). In the last few years, however, the hospice model as a preferred model of palliative care has been reevaluated and questioned by many (3). Because of the over-institutionalization of health care and the decrease in the number of hospital beds, health care policymakers are increasingly thinking about promoting palliative care at home, which would be supported by a palliative care team (1). Furthermore, people in most CEE countries prefer to die at home, as there is still a strong tradition of family care (6).The expectation of the Romanian primary health care system, which includes general practitioners (GPs) and nurses, to play an important role in palliative care at home is relatively far from realization. Not only that this aspect of health care provision is new and partly unknown to great majority of GPs, but the complementary services and expertise in home care and pain management are not well developed either. This problem is also present in Croatia, Hungary, and Slovakia (1), where various initiatives are being taken to develop palliative care as the need for it increases. As Doyle et al (7) have stated, palliative care at home is dependent on the attitudes and perceptions of family physicians and wider socio-cultural attitudes. Also, the lack of information on the latest techniques and developments in palliative care may prohibit the development of that health care area (8).The first hospices in Romania were established in Oradea and Brasov (9); by 2004, five hospices had been opened. Although a government policy from 1998 tried to strengthen the role of the GP in the health care delivery system (10), no systematic attention had been given to palliative care in general practice or hospitals until 2002 (4). Thereafter, family physicians have increasingly started to provide palliative care, but they have not been reimbursed for the service. Thus, it may be said that the efforts to develop a system of palliative care provision in Romania are still not organized.We asked GPs in five districts in Romania to self-assess their experience in palliative care provision, their knowledge and need for better education in palliative care, and their opinion on the best way to deliver this type of care.     

Impact of Specialist Home-Based Palliative Care Services in a Tertiary Oncology Set Up: A Prospective Non-Randomized Observational Study

Background:

Home-based specialist palliative care services are developed to meet the needs of the patients in advanced stage of cancer at home with physical symptoms and distress. Specialist home care services are intended to improve symptom control and quality of life, enable patients to stay at home, and avoid unnecessary hospital admission.

Materials and Methods:

Total 690 new cases registered under home-based palliative care service in the year 2012 were prospectively studied to assess the impact of specialist home-based services using Edmonton symptom assessment scale (ESAS) and other parameters.

Results:

Out of the 690 registered cases, 506 patients received home-based palliative care. 50.98% patients were cared for at home, 28.85% patients needed hospice referral and 20.15% patients needed brief period of hospitalization. All patients receiving specialist home care had good relief of physical symptoms (P < 0.005). 83.2% patients received out of hours care (OOH) through liaising with local general practitioners; 42.68% received home based bereavement care and 91.66% had good bereavement outcomes.

Conclusion:

Specialist home-based palliative care improved symptom control, health-related communication and psychosocial support. It promoted increased number of home-based death, appropriate and early hospice referral, and averted needless hospitalization. It improved bereavement outcomes, and caregiver satisfaction.     

Balance of care for the dying between hospitals and the community: perceptions of general practitioners, hospital consultants, community nurses and relatives.

A survey was made of the general practitioners, hospital consultants and community nurses who had cared for a random sample of people dying in 1987. Their views and experiences of the balance of care between hospital and the community are reported. All three groups wanted more people to be looked after in their homes rather than in hospital if adequate care could be arranged at home. But they perceived inadequacies in home help and district nursing services and many wanted other community services expanded or introduced. The main shortcomings of the hospital service were seen as inadequate numbers of hospice beds, difficulty obtaining admission for people needing long term care, discharge too early and some over-treatment of people who were dying. There was some evidence from relatives that pain control was better in hospital than at home, and the district nurses also reported that pain was not controlled satisfactorily for patients dying at home as often as it could be. It is concluded that inadequacies in community services may discourage some people from taking on the care of their relatives at home.     

Modelling the landscape of palliative care for people with dementia: a European mixed methods study

Background

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.

Discussion

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.

Summary

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.

     

Minding the gap: access to palliative care and the homeless

Background

With an ever increasing number of individuals living with chronic and terminal illnesses, palliative care as an emerging field is poised for unprecedented expansion. Today’s rising recognition of its key role in patients’ illnesses has led to increased interest in access to palliative care. It is known that homelessness as a social determinant of health has been associated with decreased access to health resources in spite of poorer health outcomes and some would argue, higher need. This article aims to discuss the current state of affairs with regards to accessing palliative care for the homeless in Canada.

Discussion

Recent review of the literature reveals differential access to palliative care services and outcomes with differing socio-economic status (SES). Notably, individuals of lower SES and in particular, those who are homeless have poorer health outcomes in addition to poor access to quality palliative care. Current palliative care services are ill equipped to care for this vulnerable population and most programs are built upon an infrastructure that is prohibitive for the homeless to access its services. A preliminary review of existing Canadian programs in place to address this gap in access identified a paucity of sporadic palliative care programs across the country with a focus on homeless and vulnerably-housed individuals. It is apparent that there is no unified national strategy to address this gap in access.

Summary

The changing landscape of the Canadian population calls for an expansion of palliative care as a field and as many have put it, as a right. The right to access quality palliative and end of life care should not be confined to particular population groups. This article calls for the development of a unified national strategy to address this glaring gap in our healthcare provision and advocates for attention to and adoption of policy and processes that would support the homeless populations’ right to quality palliative care.

     

Study protocol: optimization of complex palliative care at home via telemedicine. A cluster randomized controlled trial

Background

Due to the growing number of elderly with advanced chronic conditions, healthcare services will come under increasing pressure. Teleconsultation is an innovative approach to deliver quality of care for palliative patients at home. Quantitative studies assessing the effect of teleconsultation on clinical outcomes are scarce. The aim of this present study is to investigate the effectiveness of teleconsultation in complex palliative homecare.

Methods/Design

During a 2-year recruitment period, GPs are invited to participate in this cluster randomized controlled trial. When a GP refers an eligible patient for the study, the GP is randomized to the intervention group or the control group. Patients in the intervention group have a weekly teleconsultation with a nurse practitioner and/or a physician of the palliative consultation team. The nurse practitioner, in cooperation with the palliative care specialist of the palliative consultation team, advises the GP on treatment policy of the patient. The primary outcome of patient symptom burden is assessed at baseline and weekly using the Edmonton Symptom Assessment Scale (ESAS) and at baseline and every four weeks using the Hospital Anxiety and Depression Scale (HADS). Secondary outcomes are self-perceived burden from informal care (EDIZ), patient experienced continuity of medical care (NCQ), patient and caregiver satisfaction with the teleconsultation (PSQ), the experienced problems and needs in palliative care (PNPC-sv) and the number of hospital admissions.

Discussion

This is one of the first randomized controlled trials in palliative telecare. Our data will verify whether telemedicine positively affects palliative homecare.

Trial registration

The Netherlands National Trial Register NTR2817     

General practitioners' use and experiences of palliative care services: a survey in south east England

Background  

The role of the General Practitioner (GP) is central to community palliative care. Good liaison between the different professionals involved in a patient's care is extremely important in palliative care patients. In cases where GPs have previously been dissatisfied with palliative services, this may be seen as a barrier to referral when caring for other patients. The aim of this survey is to investigate the use and previous experiences of GPs of two palliative care services, with particular emphasis on barriers to referral and to explore issues surrounding the GP's role in caring for palliative patients.     

Factors associated with home death for individuals who receive home support services: a retrospective cohort study

Objectives  

To determine the factors associated with a home death among older adults who received palliative care nursing home services in the home.     

Reviewer Acknowledgement 2014

The aim of this paper is to encourage critical discussion of an individual's understanding of palliative care and compare this with a health care professional's understanding of palliative care. In doing this, the paper serves to illustrate the importance of words attached to services – so with palliative care – are we providing good care, or scaring the patients? The paper touches on the historical origins of palliative care as an adjunct of oncology, to a specialism in its own right and now as an integral part of all care – in a ‘generalist palliative care nurse’. However, it is unlikely that patients and their families are aware of such developments and will see palliative care services as immediate end of life care. It is argued that whatever your thoughts on the use of the term ‘palliative care’, it is important to understand what has resonance for patients. You may not agree with this paper, and I do not expect all of you to agree, but I hope it has made you think. For those who strongly disagree, take heart from a quote by Frank A. Clark (1860–1936)‘We find comfort among those who agree with us – growth among those who don’t’.     

Primary care group commissioning of services: the differing priorities of general practitioners and district nurses for palliative care services.

BACKGROUND: General practitioners (GPs) have become more responsible for budget allocation over the years. The 1997 White Paper has signalled major changes in GPs' roles in commissioning. In general, palliative care is ranked as a high priority, and such services are therefore likely to be early candidates for commissioning. AIM: To examine the different commissioning priorities within the primary health care team (PHCT) by ascertaining the views of GPs and district nurses (DNs) concerning their priorities for the future planning of local palliative care services and the adequacy of services as currently provided. METHOD: A postal questionnaire survey was sent to 167 GP principals and 96 registered DNs in the Cambridge area to ascertain ratings of service development priority and service adequacy, for which written comments were received. RESULTS: Replies were received from 141 (84.4%) GPs and 86 (90%) DNs. Both professional groups agreed that the most important service developments were urgent hospice admission for symptom control or terminal care, and Marie Curie nurses. GPs gave greater priority than DNs to specialist doctor home visits and Macmillan nurses. DNs gave greater priority than GPs to Marie Curie nurses, hospital-at-home, non-cancer patients' urgent hospice admission, day care, and hospice outpatients. For each of the eight services where significant differences were found in perceptions of service adequacy, DNs rated the service to be less adequate than GPs. CONCLUSION: The 1997 White Paper, The New NHS, has indicated that the various forms of GP purchasing are to be replaced by primary care groups (PCGs), in which both GPs and DNs are to be involved in commissioning decisions. For many palliative care services, DNs' views of service adequacy and priorities for future development differ significantly from their GP colleagues; resolution of these differences will need to be attained within PCGs. Both professional groups give high priority to the further development of quick-response clinical services, especially urgent hospice admission and Marie Curie nurses.     

Payment and Care for Hematopoietic Cell Transplantation Patients: Toward a Specialized Medical Home for Complex Care Patients

Patient-centered medical home models are fundamental to the advanced alternative payment models defined in the Medicare Access and Children's Health Insurance Plan Reauthorization Act (MACRA). The patient-centered medical home is a model of healthcare delivery supported by alternative payment mechanisms and designed to promote coordinated medical care that is simultaneously patient-centric and population-oriented. This transformative care model requires shifting reimbursement to include a per-patient payment intended to cover services not previously reimbursed such as disease management over time. Payment is linked to quality measures, including proportion of care delivered according to predefined pathways and demonstrated impact on outcomes. Some medical homes also include opportunities for shared savings by reducing overall costs of care. Recent proposals have suggested expanding the medical home model to specialized populations with complex needs because primary care teams may not have the facilities or the requisite expertise for their unique needs. An example of a successful care model that may provide valuable lessons for those creating specialty medical home models already exists in many hematopoietic cell transplantation (HCT) centers that deliver multidisciplinary, coordinated, and highly specialized care. The integration of care delivery in HCT centers has been driven by the specialty care their patients require and by the payment methodology preferred by the commercial payers, which has included bundling of both inpatient and outpatient care in the peritransplant interval. Commercial payers identify qualified HCT centers based on accreditation status and comparative performance, enabled in part by center-level comparative performance data available within a national outcomes database mandated by the Stem Cell Therapeutic and Research Act of 2005. Standardization across centers has been facilitated via voluntary accreditation implemented by Foundation for the Accreditation of Cell Therapy. Payers have built on these community-established programs and use public outcomes and program accreditation as standards necessary for inclusion in specialty care networks and contracts. Although HCT centers have not been described as medical homes, most HCT providers have already developed the structures that address critical requirements of MACRA for medical homes.