The model and elements of palliative care for patients with terminal illness: A systematic review

Backgorund: Many models of palliative care have already been implemented, however, a model of health care cannot be directly applied in a country because of the differences in socio-cultural, disease patterns and health systems within the country. This study aimed to conduct a systematic review to analyze models of palliative care and elements of model for palliative care. 
 Methods: A systematic review was conducted. Articles were searched by four electronic databases; PubMed, Web of Science, Ovid and NICE Database. Three reviewers screened the search results and data were classified according to their main objective. Further synthesize was conducted to show element and model of care. 
 Results: The initial search strategy identified 218. Based on Hawker quality assessment scale, only 14 articles met criteria for review and synthesis. Out of 14, 4 articles describe palliative care for chronic disease (heart failure, end stage renal disease) and 10 for cancer. The integrated palliative care model has been the most frequently described. The other models are respite care, care-aide and personal alarm model, family centered advanced care, and end of life care for young adults. This systematic review also identified elements of model for palliative care and categorized as element from patient and family, personnel and health care system.
 Conclusion: A few studies are describing a model of palliative care and elements of model for palliative care in detail. More detailed methodological and population specifications are needed to accurately find the results.

Community-Based Palliative Care: Care Transitions and Beyond (SA532)

Criteria for inclusion in the Programme Grants for Applied Research journal Reports are published in Programme Grants for Applied Research (PGfAR) if (1) they have resulted from work for the PGfAR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors.

Background: A wide range of organisational models of palliative care exist. However, decision makers need more information about which models are likely to be most effective in different settings and for different patient groups. Aim: To identify the existing range of models of palliative care that have been evaluated, what is already known and what further information is essential if the most effective and cost-effective models are to be identified and replicated more widely. Design: A review of systematic and narrative reviews according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. Data sources: MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library, Web of Science and ASSIA were searched for reviews about models of service provision from 2000 to 2014 and supplemented with Google searches of the grey literature. Results: Much of the evidence relates to home-based palliative care, although some models are delivered across care settings. Reviews report several potential advantages and few disadvantages of models of palliative care delivery. However, under-reporting of the components of intervention and comparator models are major barriers to the evaluation and implementation of models of palliative care. Conclusion: Irrespective of setting or patient characteristics, models of palliative care appear to show benefits and some models of palliative care may reduce total healthcare costs. However, much more detailed and systematic reporting of components and agreement about outcome measures is essential in order to understand the key components and successfully replicate effective organisational models.

In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.

Chronic obstructive pulmonary disease (COPD) refers to a group of lung diseases that are distinct in underlying aetiology but share a common disease course of persistent and progressive airflow restriction. People living with COPD, as well as the people who care for them, frequently have severe and unmet physical and psychosocial needs, including breathlessness, fatigue, cough, anxiety and depression. Early proactive palliative care is well placed to address these needs, yet it is frequently under-utilised in this group. This narrative review aimed to identify core components of palliative care and examine how existing models of care are implemented to better understand which models can best serve the needs of people with COPD. Symptom palliation, advance care planning, and support for caregivers emerged as the common components underpinning both generalist and specialist models of palliative care. Models of proactive palliative care were diverse in terms of where and how care was delivered as well as which health professionals were involved. Five key models of palliative care were identified: (1) multi-disciplinary integrated services, (2) nurse-led care, (3) hospice and residential aged care, (4) home-based care, and (5) telemonitoring and telehealth. Each model describes a diverse set of interventions and many of these share common elements, including the normalisation of palliative principles within routine care and the provision of diverse delivery settings to accommodate individual preferences and needs. Successful palliative care models must be practical, accessible and innovative to respond to individuals' complex and evolving needs, foster multi-disciplinary collaboration and input and optimally utilise local healthcare resources.

Paediatric palliative care and the social determinants of health: Mitigating the impact of urban poverty on children with life-limiting illnesses

IntroductionA palliative care approach can improve quality-of-life for people with dementia. It is the preference of many people with dementia to remain living at home until death, with the appropriate care. To develop a successful model for dementia palliative care in the community, it is essential to assimilate the perspectives and experiences of those affected. The guiding research question for this study was: What are people with dementia and family carers’ views on a model for dementia palliative care?.MethodsFocus groups (n = 3) were conducted with bereaved or current family carers (n = 11), and people with dementia (n = 2). Discussions centred around a proposed model of dementia palliative care. These were transcribed and analysed using thematic analysis.ResultsThree main themes were identified: living and dying well with dementia; reducing carer burden to fulfil the wish for home care; and lack of faith in the healthcare system. One statement which summarised the analysis was: “Dementia palliative care is a dream, but not a reality.” This reflected participants’ repeated “wish” for this “ideal” model of care, but simultaneous scepticism regarding its implementation, based on their prior experiences of healthcare services.ConclusionAll participants were welcoming of the proposed model for dementia palliative care and were generally positive about palliative care as a concept relating to dementia. There was consensus that the model would allow people to live and die well with dementia, and reducing the carer burden would fulfil the wish to remain at home. However systemic changes in the healthcare system will be needed to facilitate a truly person-centred, holistic, individualised and flexible model of care.

This study set out to systematically review the research evidence about the impact of alternative models of specialist palliative care on the quality of life of patients. Eighty-six relevant papers were identified and reviewed, including 22 descriptive and 27 comparative studies. We found few comparative trials of reasonable quality. There was some evidence that in-patient palliative care provided better pain control than home care of conventional hospital care, but this research was dated and open to criticism. Research on palliative home care teams and co-ordinating nurses has demonstrated limited impact on quality of life over conventional care for patients dying at home. These negative findings may be due to the limitations of the assessment tools used. There is a need for larger studies to provide clear evidence as to whether specialist palliative care services provide improvements in patients' quality of life. This review does not exclude the possibility that models of care might be justifiable on other grounds such as patient preference or cost-effectiveness.

979 Dr. William Breitbart, chief of the Psychiatry Service at Memorial Sloan-Kettering Cancer Center in New York City, describes his current research on a meaning-centered psychotherapeutic intervention that he has designed in order to help terminally ill patients with cancer sustain hope and meaning as they approach the end of their lives. Drawing inspiration and ideas from the works of psychiatrist and Holocaust survivor Viktor Frankl, Dr. Breitbart and his fellow, Dr. Mindy Greenstein, designed an 8-week, group-focused, manualized course of experiential exercises, which is being compared to an 8-week, manualized cancer support group intervention, to see how well meaning-focused care can address a constellation of constructs that he and his colleagues are calling “despair at the end of life.” The component constructs of despair at the end of life include hopelessness, depression, loss of meaning, suicidal ideation, and desire for hastened death. In the following interview with Innovations Associate Editor Karen S. Heller, Dr. Breitbart describes the conceptual evolution of his thinking about despair at the end of life, and details the research on meaning-centered psychotherapy in which he is now engaged. Although the study is still ongoing, preliminary findings suggest that although both types of group intervention reduce patients’ psychological distress and depression and enhance social support, the meaning-centered intervention is more effective in increasing spiritual well-being and a sense of meaning, and in reducing hopelessness and desire for death.

Holding On… and Letting Go

Clinical trial evidence on the effect of palliative care models in reducing aggressive end-of-life care is inconclusive. We previously reported on an integrated inpatient palliative care and medical oncology co-rounding model that significantly reduced hospital bed-days and postulate additional effect on reducing care aggressiveness. To compare the effect of a co-rounding model vs usual care in reducing receipt of aggressive treatment at end-of-life. Secondary analysis of an open-label stepped-wedge cluster-randomized trial comparing two integrated palliative care models within the inpatient oncology setting. The co-rounding model involved pooling specialist palliative care and oncology into one team with daily review of admission issues, while usual care constituted discretionary specialist palliative care referrals by the oncology team. We compared odds of receiving aggressive care at end-of-life: acute healthcare utilization in last 30days of life, death in hospital, and cancer treatment in last 14days of life between patients in two trial arms. 2145 patients were included in the analysis, and 1803 patients died by 4th April 2021. Median overall survival was 4.90 (4.07 - 5.72) months in co-rounding and 3.75 (3.22 - 4.21) months in usual care, with no difference in survival (P = .12). We found no significant differences between both models with respect to receipt of aggressive care at end-of-life. (Odds Ratio .67 - 1.27; all P > .05). The co-rounding model within an inpatient setting did not reduce aggressiveness of care at end-of-life. This could be due in part to the overall focus on resolving episodic admission issues.

Intensive Care Unit Palliative Care Shortens Hospital Stays

Background: Access to palliative care in the community enables people to live in their preferred place of care, which is often home. Community palliative care services struggle to provide timely 24-h services to patients and family. This has resulted in calls for ‘accessible and flexible’ models of care that are ‘responsive’ to peoples’ changing palliative care needs. Digital health technologies provide opportunities to meet these requirements 24-h a day. Aim: To identify digital health technologies that have been evaluated for supporting timely assessment and management of people living at home with palliative care needs and/or their carer(s), and the evidence-base for each. Design: A systematic review of systematic reviews (‘meta-review’). Systematic reviews evaluating evidence for virtual models of palliative or end-of-life care using one or more digital health technologies were included. Systematic reviews were evaluated using the Risk of Bias Tool for Systematic Reviews. A narrative approach was used to synthesise results. Data sources: Medline, Embase, Web of Science, CINAHL and Cochrane Database of systematic reviews were searched for English-language reviews published between 2015 and 2020. Results: The search yielded 2266 articles, of which 12 systematic reviews met criteria. Sixteen reviews were included in total, after four reviews were found via handsearching. Other than scheduled telehealth, video-conferencing, or after-hours telephone support, little evidence was found for digital health technologies used to deliver virtual models of palliative care. Conclusions: There are opportunities to test new models of virtual care, beyond telehealth and/or video conferencing, such as 24-h command centres, and rapid response teams. Systematic review registration number: Prospero CRD42020200266

BackgroundPeople with dementia receive differential access to palliative care services despite suffering from a significant burden of the disease in the advanced stage. Professional and familial caregivers may not view dementia as a terminal illness and are less likely to engage in end-of-life care discussions. Healthcare providers also face challenges coordinating palliative care in the community for dementia, demonstrating a lack of understanding of the needs of patients living with advanced dementia, and resources available to support them within the community.AimThe aim of this study is to implement a transmural model of care in a tertiary care setting where patients living with advanced dementia (PLAD) at risk of deterioration in one year are identified early to receive tailored palliative care interventions using a predictive algorithm.Methods/DesignThe updated medical research council (MRC) framework for complex interventions is used to guide the development and implementation of the transmural model which incorporates a predictive algorithm in clinical practice, with interventions tailored for at risk PLAD both within, and beyond the tertiary care setting. The PROgnostic Model for Advanced DEmentia (PRO-MADE) developed to predict one-year all-cause mortality in PLAD presenting to an acute care hospital was embedded into the electronic health records of the tertiary care setting as a mathematical equation. Predictive modeling markup language in the digital records platform is used to calculate the risk score for PLAD by inputting the predictors. The clinical team is alerted of at risk PLAD through timed directive prompts, with advice on management given through tailored care bundles. The study will adopt a mixed methods approach in a Type 1 effectiveness-implementation study design to concurrently study the effectiveness of the transmural model in practice, and the barriers and facilitators to its implementation.ConclusionThe implementation of a transmural model of early palliative care for patients with advanced dementia requires the coordination between clinicians in the tertiary care setting and community, together with health information technologists. This study protocol describes its development and implementation, and the study design to evaluate its outcomes.