Palliative Care Pathway Research Articles

Palliative care pathways of older patients

To determine the palliative care pathways of older patients in Sherbrooke, Qc by examining their transfers to other facilities. This analysis was conducted by linking 3 databases: emergency department, hospitalizations and nursing homes. The study period ranged from January 2011 to December 2015. SPSS was used for statistical analysis. The study only included palliative care patients. 25% of patients waited less than 7 days for transfer, and 74% waited less than 3 weeks. 64.9% of patients were transferred to a long-term facility for dependent adults (LTF), 15.2% returned home or were transferred to private accommodation, and 15.9% were transferred to an intermediate care facility. One-half of patients subsequently changed facility, mainly those in homes or intermediate care. Palliative care patient bed occupation rates represented 1% of available bed-days and less than 2% of total beds for 86.4% of days. Only 12% of patients returned to hospital within 90 days after discharge. The number of beds occupied by palliative care patients does not seem to disrupt the hospital capacity. The majority of the palliative care patients were well managed, as reflected by the low readmission rate. Our results indicate good management of transfers and an adequate supply of long-term care facilities and home services.

\u201cNever at ease\u201d \u2013 family carers within integrated palliative care: a multinational, mixed method study

BackgroundFamily carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services.MethodsFamily carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C).Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions.ResultsOn average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures.ConclusionsData suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available.

Palliative Care Early and Systematic (PaCES): A survey of colorectal cancer clinicians of barriers and facilitators to early palliative care integration.

128 Background: Health systems struggle to systematically provide early and integrated palliative care (PC) to cancer patients. In Alberta, Canada, the PaCES (Palliative Care Early and Systematic) project is addressing this need by building an early PC pathway for advanced colorectal cancer (CRC) patients. As part of this work, we aimed to characterize barriers and facilitators to: a) providing primary palliative care to CRC patients; b) referring CRC patients for PC specialist consults; and c) working with specialist PC and home care services. Methods: This observational, knowledge translation questionnaire study collected both quantitative and open-ended responses from physicians, nurses and other allied health care professionals (HCP) working with advanced CRC patients in Alberta, Canada. Survey questions and format were informed by Michie’s Theoretical Domains Framework. The strength of this framework is that, in addition to identifying specific barriers to delivering early PC, it also maps out suggested solutions to addressing these barriers. Results: The survey response rate was 43% (65/150). 89% of the respondents were physicians or nurses with Medical Oncology as the primary discipline. Time and competing priorities were the biggest barriers to HCPs addressing patients PC needs (65%). Next, role confusion when working with PC teams, and lack of clear process for executing new orders when patients are at home, were identified by over 55% of HCPs as a barrier. Other aspects of working with PC teams, including, lack of standardized communication processes and inadequate documentation processes, were barriers as perceived by over 45% of HCPs. Over 90% of HCPs surveyed believe earlier PC is likely to benefit their patients, and would recommend an earlier PC pathway to their patients. Conclusions: In Alberta, the main barriers to early PC integration are no longer attitudinal, with over 90% believing that early PC is beneficial for their patients. Time needed to address PC needs in a busy oncology clinic is a barrier. A pathway to improve clarity around referral processes and role confusion when working with PC teams will be developed to address these barriers.

Perceptions of palliative care: Cancer and non-cancer.

148 Background: Palliative Medicine consultation is greater for cancer than non-cancer patients. Decreased symptom burden, improved survival time and quality of life, and cost savings are associated with palliative care. Most patients do not receive information about palliative care until end of life, resulting in negative outcomes. We examined perceptions and access to Palliative Medicine for persons living with advanced illnesses. The purpose was to inform the design of palliative care pathways for cancer and non-cancer diagnoses. Methods: Using Interpretive Phenomenological Analysis, patients/caregivers with metastatic cancer, chronic kidney disease, chronic obstructive pulmonary disease and advanced heart failure were interviewed. This qualitative research method explores an individual’s lived illness experience. Interviews addressed care processes, teams, understanding of palliative care and goals of care. Six reviewers read, coded, categorized interview transcripts and extracted themes. Results: Fifty interviews were completed, 36/50 with metastatic cancer or COPD. Despite different diagnoses, themes were similar. Caregiver’s responses reflected the patient’s burden and overall experience. Themes were: focused individual care; multiple dimensions of time; 24/7 home care; physical and psychological impacts; and spirituality. Perceptions about Palliative Medicine remain aligned with end of life. Conclusions: Palliative Medicine remains associated with end of life, regardless of the diagnosis. Majority had limited access to palliative care, despite pursuing information on supportive services. They also expressed high expectations of receiving such information from physicians and other providers. Results are similar to national strategies on palliative care. The project’s findings have informed the design of clinical pathways for early integration of Palliative Medicine for patients with cancer and non-cancer diagnoses.

The Role of Emergency Care in Patients with Advanced Dementia

The prevalence of advanced dementia (AD) is expected to increase dramatically over the next few decades. Patients with AD suffer from recurrent episodic illnesses that frequently result in transfers to acute care hospitals. The default pathway followed by the emergency physicians, internists and intensivists who see those patients there is prioritize disease-directed therapies over attention to the larger picture of advanced dementia. While this strategy is desired by many families, some families prefer a different approach. This essay examines the reason why this phenomenon occurs and offers suggestions for improvement. Gaps in information and physician workload are important factors, but we argue that until physicians who see patients in emergency departments learn to pause first and ask “Why are we doing this?" they will revert to their comfort zone of ordering tests and therapies that may be unwanted. A separate emergency palliative care pathway may be one solution. Shifting the focus back to the larger picture of AD and away from the physiologic disturbance of the moment may alter the trajectory of care in ways that truly respect the wishes of some patients and their families.

Stop that Train! I Want to Get Off: Emergency Care for Patients with Advanced Dementia

Stop that Train! I Want to Get Off: Emergency Care for Patients with Advanced Dementia

Catheter hemodynamic assessment of the univentricular circulation.

Children with very complex congenital heart disease not amenable to biventricular repair are increasingly being considered for a palliative univentricular care pathway. This involves a staged surgical approach culminating in the Fontan circulation with passive pulmonary blood flow and added resistances. The catheter based hemodynamic assessment at all three stages of this palliation is described in detail. Frequent pitfalls, inherent limitations and potential errors are discussed and clinical examples are illustrated.

An Analysis of Journey Mapping to Create a Palliative Care Pathway in a Canadian First Nations Community: Implications for Service Integration and Policy Development.

Providing palliative care in Indigenous communities is of growing international interest. This study describes and analyzes a unique journey mapping process undertaken in a First Nations community in rural Canada. The goal of this participatory action research was to improve quality and access to palliative care at home by better integrating First Nations’ health services and urban non-Indigenous health services. Four journey mapping workshops were conducted to create a care pathway which was implemented with 6 clients. Workshop data were analyzed for learnings and promising practices. A follow-up focus group, workshop, and health care provider surveys identified the perceived benefits as improved service integration, improved palliative care, relationship building, communication, and partnerships. It is concluded that journey mapping improves service integration and is a promising practice for other First Nations communities. The implications for creating new policy to support developing culturally appropriate palliative care programs and cross-jurisdictional integration between the federal and provincial health services are discussed. Future research is required using an Indigenous paradigm.

Urgent hospitalization of the cancer patient: problems and opportunity.

Cancer patients are frequently subject to non programmed access to the emergency department or to the oncological services. The main underlying needs are disease-related symptoms, treatment-related toxicity and end-of-life issues. Sudden events frequently change the trajectory of the disease and ask for rapid changes of cancer care. Hospital admission is frequently an unavoidable step in clinical history, especially in the last months of life. While an improvement in symptoms management and a tighter patients' control could prevent from the unexpected worsening of clinical conditions, oncologists and emergency physicians are called to a strict cooperation. Clinical informations availability, prompt symptom control, appropriate hospital admission or referral to a palliative care pathway are the key elements of a progress in the care of patients accessing the emergency departments.

Biases in palliative care access for elderly patients dying in hospital: A prospective study in acute care

Background: Patients in the terminal phase of chronic illnesses are often admitted to acute care wards, with the risk of receiving inappropriate intensive treatments as opposed to necessary palliative care (PC).Objective: To assess patient features and possible service biases in the activation of PC pathways, or lack thereof, for those dying in acute care.Design and setting: This was a prospective observational study of all patients admitted to our acute medical ward from the emergency department during 6 months.Measurements: Need for palliation was evaluated for all patients by a physician and a nurse of the Internal Medicine ward. Those proposed for PC were re-evaluated by a consultant and a nurse of the PC unit. Clinical and epidemiological data were obtained for those selected for PC, and those deceased in the acute ward without having received PC.Results: A total of 781 patients were admitted to the acute care ward and screened during the study period. Of the 56 patients assigned to the PC pathway, those that died in hospital (n = 30) had significantly poorer Karnofsky, Braden, and ECOG scores compared to those alive at discharge (n = 26). Forty-eight more patients died on the ward without having received PC. The prevalence of cardiopulmonary diseases was significantly higher in this group, while more oncologic patients died in the PC cohort.Conclusions: Palliative treatment needs to be augmented and better targeted in acute care settings. Special attention should be given to patients with cardiopulmonary illnesses, a possible bias preventing the activation of this type of care, and those at high risk of developing pressure ulcers. Further education and training in this field are crucial for healthcare professionals working in acute wards.

How Well Do We Understand Health Care Professionals' Perceptions and Needs in the Provision of Palliative Care? A Mixed Methods Study.

Despite palliative care being standard for patients with chronic and/or life-limiting conditions, a perceived lack of clarity regarding the definition and scope of palliative care persists. We aimed to identify health care professionals' (HCPs) perspectives, education, and support needs related to palliative care provision in a large private Australian tertiary hospital. A validated survey was administered and four focus groups were conducted with multidisciplinary HCPs. The survey response rate was 50% (n = 302). Although critical care HCPs scored symptom management and patient/family interaction items more highly compared with other HCPs, mean scores (<4.0) for both groups indicated participants lacked confidence to perform this aspect of care independently. Critical care HCPs were more comfortable caring for dying patients (p < 0.001) and talking to families about death (p < 0.001). Ward HCPs were more supportive of early referral to palliative care (p < 0.001). Cancer diagnoses were overestimated as common causes of death. Education needs focused on ethical issues, end-of-life communication skills, dealing with delirium, and use of the Liverpool Care Pathway. Key themes identified from the four focus groups were (1) delays or nonreferral to palliative care created considerable stress and feelings of inadequacy despite a perceived understanding of the broader definition of palliative care and (2) HCPs commonly focused on end-of-life care. Ambiguity regarding the meaning and delivery of palliative care persists in the acute care setting across disciplines. Results confirmed that innovative approaches to education and upskilling HCPs in palliative care and referral pathways is warranted.

Reducing inequalities in care for patients with non-malignant diseases: Insights from a realist evaluation of an integrated palliative care pathway

Background: The need for palliative care is growing internationally with an increasing prevalence of non-malignant diseases. The integrated care pathway was implemented in primary care by multidisciplinary teams from 2009 in a locality in the North East of England. Fourteen general practitioner practices provided data for the study. Aim: To find whether, how, and under what circumstances palliative care registrations are made for patients with non-malignant diseases in primary care. Design: General practitioner practice data were analysed statistically and qualitative data were collected from health care professionals and members of relevant organisations. Findings: A mixed-effects logistic model indicated a significant difference beyond the 0.1% level (p < 0.001) in registrations between the malignant and non-malignant groups in 2011, with an odds ratio of 0.09 (=exp(−2.4266)), indicating that patients in the non-malignant group are around 11 times (1/0.09) less likely to be registered than patients in the malignant group. However, patients with non-malignant diseases were significantly more likely to be registered in 2012 than in 2011 with an odds ratio of 1.46, significant beyond the 1% level. Qualitative analyses indicate that health care professionals find registering patients with non-malignant diseases stressful, yet feel that their confidence in treating this population is increasing. Conclusion: The integrated care pathway began to enable the reduction in inequalities in care by identifying, registering and managing an increasing number of palliative patients with non-malignant diseases. Consensual and inclusive definitions of palliative care were developed in order to legitimise the registration of such patients.

The rise and fall of the Liverpool care pathway

Introduction: The Liverpool care pathway (LCP) was created to aid in the delivery of high-quality palliative care across myriad healthcare providers. After high-profile criticism of the pathway and a subsequent inquiry its use was suspended in the United Kingdom.Objective: The aim of this article is to systematically summarize the conditions leading to the rise and fall of the pathway. The authors also summarize the latest trials, which may point to a beneficial role of the pathway across diverse international settings.Methods: We comprehensively search PubMed, Embase, and Cochrane databases for articles on the use of the LCP from 1997 to present. Keywords ‘LCP,’ ‘Liverpool care pathway,’ and ‘palliative care pathway’ were used. Reference lists of included articles were also assessed for relevant articles.Results: There are two systematic reviews to date with no papers meeting criteria for inclusion. Several studies reported improvements in nausea and breathlessness when using the LCP. One comparative study found the use of the LCP was associated with a reduction in blood tests and radiological investigations with an increase in symptom assessment and palliative medication.Conclusion: There is evidence supporting the on-going use of the LCP in countries other than the UK. Research is challenging in this population and more, well-constructed studies are needed to explore the use of care pathways at the end of life. Further guidance and documentation on communication with patients and their families at the end of life should be considered a priority for development.

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative CareNovember 13–15, 2014Orlando, Florida

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

Associations between level of services integration and nurses' workplace well-being.

BackgroundTo respond better to population needs, in recent years Quebec has invested in improving the integration of services and care pathways. Nurses are on the front lines of these transformation processes, which require them to adopt new clinical practices. This updating of practices can be a source of both satisfaction and stress. The aim of this study was to gain a better understanding of the relationship between the transformation processes underlying services integration and nurses’ workplace well-being.MethodThis study was based on a descriptive cross-sectional correlational design. The target population included all nurses working in four care pathways in a Quebec healthcare establishment: palliative oncology services, mental health services, autonomy support for the elderly, and chronic obstructive pulmonary disease. In all, 107 nurses took part in the study and completed a questionnaire sent to them. Hierarchical linear regression analyses were used to examine the relationship between level of integration, measured using the Development Model for Integrated Care; nurses’ perceptions of organizational change, measured on four dimensions (challenge, responsibility, threat, control); and nurses’ workplace well-being, measured on three dimensions (negative stress, positive stress, satisfaction), as defined by the Flexihealth model.ResultsNurses in the palliative oncology care pathway, which was at a more advanced level of integration, presented a lower negative stress level and a higher positive stress level than did nurses in other care pathways. Their mean satisfaction score was also higher. More advanced integration was associated with nurses’ feeling less threatened, as well as improved workplace well-being. The perception of threat appeared to be a significant mediating variable in the relationship between level of integration and well-being.ConclusionThe association observed between level of services integration and workplace well-being contributes to a better understanding of nurses’ experiences in such situations. These results provide new perspectives on interventions that could be implemented to remedy the potential negative consequences of these types of transformations.

Patient-centered integrated palliative care pathways in advanced disease: a mixed methods study

Introduction: People with life threatening disease across Europe face challenges in engaging with a wide range of agencies and multiple professionals during the course of their illness, even up to the point of death. It is known that many services attempt – formally or otherwise – to dovetail their efforts with others in the local health economy, but little is known about these initiatives, nor about what works best in terms of service organisation. This is especially the case when considered from the patient and carer standpoint. Against a backdrop of shrinking resources for health and social care in an age of austerity and in the light of an ageing population with increasing need, more needs to be known about how integrating aspects of service delivery will best help people in the last phase of their lives. Study design: The study will use a mix of quantitative and qualitative approaches to investigate integrated palliative care pathways in advanced cancer and chronic disease. Methods: The study will be conducted by an international team in five distinct phases: 1. Systematic review of the literature considering existing evidence for integrated palliative care initiatives in Europe 2. Development of a taxonomy of integrated palliative care initiatives in Europe 3. Data collection exploring the experiences of patients, carers and professional care givers of integrated palliative care initiatives in five European nations using shadowing techniques, qualitative interviewing and quantitative quality of life and symptom burden measures 4. Development of (requirements for) best practices in integrated palliative care in Europe based on the analysis of gathered data 5. Development of an elearning platform around best practice in integrated palliative care aimed at equipping professionals with knowledge to enhance and influence local care provision Dissemination: Study outputs will be disseminated throughout the project using a variety of methods including: scientific publications and presentations; the provision of an interactive website; the development of an elearning platform; engagement with social media and ending with an invitational conference aimed at influencing policy development at senior European political and policy decision making level. Conclusion: Our knowledge about integrated palliative care pathways in advanced disease remains patchy and incomplete. It is clear that many initiatives are underway across Europe. Our study will pull together that knowledge, enhancing it significantly with the views of patients and those at the coalface of service delivery, putting us in a position to make evidence based recommendations for best practice in this field.

Questions and answers on the Belgian model of integral end-of-life care: experiment? Prototype? : "Eu-euthanasia": the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors.

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

USE OF HOSPITAL SERVICES AMONG PALLIATIVE OESOPHAGO-GASTRIC CANCER PATIENTS

IntroductionA high proportion of patients on a palliative care pathway continue to use hospital services or die in hospital, despite calls for increased care in the community. Further research is...

Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences

Approaches to palliative care that were originally developed for people with cancer are now being adopted for people with dementia, as a response to many reports of poor-quality care for people with dementia at the end of life. This study explored perceived barriers to the delivery of high-quality palliative care for people with dementia using semi-structured interviews. Recordings were transcribed verbatim and analysed using thematic analysis with an inductive approach and a coding strategy. To improve the trustworthiness of the analysis, independent reading and coding of the transcripts were undertaken, followed by discussions among the four researchers to reach agreement and consensus of the themes. Two group interviews (n = 7 and n = 6), 16 individual interviews and five interviews of pairs of professionals were conducted in 2011/2012 with participants from backgrounds in palliative care, dementia services, palliative care research and policy making. Four themes were identified as barriers to providing high-quality palliative care for people with dementia: (i) ambivalence towards the systematisation of palliative care; (ii) disconnection between services; (iii) different assumptions about training needs; and (iv) negotiation of risk. Understanding these barriers to providing high-quality palliative care for people with dementia could help in the development of a dementia-specific palliative care pathway.

Uncertainty in end-of-life care

Uncertainty surrounding medical decision-making is particularly important during end-of-life decision-making. Doubts about the patient's best interests and prognostic accuracy may lead to conflict. Many authors have suggested recently that medical attitudes to uncertainty need review. It is inappropriate to avoid discussion of uncertainty during end-of-life care and American literature suggests that patients and families accept uncertainty in end-of-life discussions. Recently, authors have advocated the concept of 'Practical Certainty' accepting that absolute certainty is rarely possible in end-of-life decision-making and openly acknowledging that the physicians are as certain as they can be in the circumstances. Allowing time to provide acceptance of a palliative care pathway and using the collective wisdom of colleagues improves the accuracy of prediction and reduces conflict at the end of life. The implications of this review are that doctors should not avoid discussing uncertainty in end-of-life conversations and the article provides some recommendations for minimizing conflict arising from end-of-life discussion.