Karen Ryan

Delirium detection in clinical practice and research: Critique of current tools and suggestions for future development

Delirium is underrecognized clinically. Many tools have been developed to assist with the diagnosis of delirium, and they vary greatly in purpose, quality, and administration time. It is suggested that future development of delirium assessment instruments be guided by a dichotomization of raters into expert and nonexpert groups. Careful consideration of the needs of the two groups suggests that assessment instruments designed for nonexperts should be entirely objective, whereas those instruments developed for experts should include the full range of constructs associated with the syndrome. This conceptualization is explored in detail, and existing assessment instruments are considered briefly in light of this position.

An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities.

Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. Staff from intellectual disability and palliative care services completed surveys and participated in focus group discussions. Three hundred and eighty-nine questionnaires were distributed and 16 focus groups were held. Fifty-nine per cent of palliative care staff and 67% of intellectual disability services staff had cared for someone with intellectual disability who had died but level of experience was low. Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived ‘differences’ and ‘difficulties’ in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.

The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure.

Patient-centred care (PCC) is recommended in policy documents for chronic heart failure (CHF) service provision, yet it lacks an agreed definition. A systematic review was conducted to identify PCC interventions in CHF and to describe the PCC domains and outcomes. Medline, Embase, CINAHL, PsycINFO, ASSIA, the Cochrane database, clinicaltrials.gov, key journals and citations were searched for original studies on patients with CHF staged II–IV using the New York Heart Association (NYHA) classification. Included interventions actively supported patients to play informed, active roles in decision-making about their goals of care. Search terms included ‘patient-centred care’, ‘quality of life’ and ‘shared decision making’. Of 13,944 screened citations, 15 articles regarding 10 studies were included involving 2540 CHF patients. Three studies were randomised controlled trials, and seven were non-randomised studies. PCC interventions focused on collaborative goal setting between patients and healthcare professionals regarding immediate clinical choices and future care. Core domains included healthcare professional-patient collaboration, identification of patient preferences, patient-identified goals and patient motivation. While the strength of evidence is poor, PCC has been shown to reduce symptom burden, improve health-related quality of life, reduce readmission rates and enhance patient engagement for patients with CHF. There is a small but growing body of evidence, which demonstrates the benefits of a PCC approach to care for CHF patients. Research is needed to identify the key components of effective PCC interventions before being able to deliver on policy recommendations.

Review: Primary thromboprophylaxis in the palliative care setting: a qualitative systematic review

Symptomatic venous thromboembolism (VTE) occurs in 15% of patients with advanced malignancy. Primary thromboprophylaxis using low-molecular-weight heparin (LMWH) is supported by Level 1A evidence but is under-utilized in the palliative setting. A systematic search was performed of Medline, Cochrane Library, EMBASE, AMED, and Web of Science for papers published between 1960 and January 2010 using search terms: ‘palliative’, ‘thromboprophylaxis’, ‘thromboembolism’, ‘heparin’, and ‘advanced cancer’. Forty-two citations were obtained, of which 34 were excluded as they dealt with treatment of VTE, novel anticoagulants, or LMWH as a cancer treatment. Eight original articles were reviewed independently by two authors. Data was extracted according to a predetermined questionnaire. Studies examined practice in specialist palliative care (SPC) units, and attitudes held by a total of 32 physicians and 198 patients. Patients find LMWH acceptable, particularly patients who experienced a sudden decline in performance status. Reluctance to prescribe LMWH is based on physicians’ concerns regarding negative impact on quality of life, and lack of evidence specific to the palliative care setting. In conclusion, LMWH prophylaxis should be implemented in patients with a previously good performance status who have a transiently increased risk of VTE and no contraindications. Further research is required using outcome measures specific to palliative care.

Palliative care for disadvantaged groups: people with intellectual disabilities

Abstract People with intellectual disabilities are among the most socially excluded and vulnerable groups in Ireland today. They are at increased risk of early death and they receive poorer health care than the general population. The World Health Organization has pointed out that inequalities in service provision to this group extend to the delivery of palliative care. The population of people with intellectual disabilities is an ageing one, and its changing demographics challenge services that were originally developed for children and young adults and that focused on enabling their clients to lead full and productive lives. Conditions such as cancer, cardiovascular and respiratory disease are now leading causes of death, and this has important implications for service planning. Although the population is relatively small, its needs demand high priorities in the healthcare services. This is because many people with intellectual disabilities need support throughout their lives and have longer and more intense involvement with services than the vast majority of citizens. People with intellectual disabilities are people first, and should be recognised as individuals, rather than on the basis of definitions. However, there is reason to assess their palliative care needs as a client group. This is because people with intellectual disabilities not only have the universal palliative care needs of the general population, but also have additional and special needs. This paper reviews the palliative care needs of people with intellectual disabilities, dealing with such issues as symptomatology, communication and family dynamics. It draws attention to the gaps that currently exist in end-of-life care services for adults with intellectual disabilities and concludes that a partnership approach between the intellectual disability and palliative care services will be needed in order to provide effective patient-centred and family-oriented care.

Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

Review of cancer pain management in patients receiving maintenance methadone therapy.

Methadone is commonly used in the treatment of heroin addiction. Patients with a history of opioid misuse or on methadone maintenance therapy (MMT) with cancer often have difficult to manage pain. We studied 12 patients referred to the palliative care service with cancer pain who were on MMT. All had difficult to control pain, and a third required 5 or more analgesic agents. Two patients had documented ‘‘drug-seeking’’ behavior. Methadone was used subcutaneously as an analgesic agent in 1 patient. We explore why patients on MMT have difficult to manage pain, the optimal management of their pain, and the increasing role of methadone as an analgesic agent in cancer pain.

Integrating palliative care in public health: The Colombian experience following an International Pain Policy Fellowship

Access to palliative care is insufficient in many countries around the world. In an effort to improve access to palliative care services and treatments, a public health approach as suggested by the World Health Organization was implemented in Colombia to improve opioid availability, increase awareness and competences about palliative care for healthcare workers, and to include palliative care as a component of care in legislation. As a result, opioid availability has improved, a mandatory palliative care course for medical undergraduate students has been implemented and a palliative care law is being discussed in the Senate. This article describes the strategy, main achievements and suggestions for implementing similar initiatives in developing countries.

Funding models in palliative care: Lessons from international experience

Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

Developing a palliative care competence framework for health and social care professionals: the experience in the Republic of Ireland

Purpose Competence-based education in health and social care has been promoted through the Tuning Process in Europe. This papers reports on the process of developing a Palliative Care Competence Framework for health and social care professionals working in the Republic of Ireland. Method A Palliative Care Competence Framework Steering Group, comprising a range of health and social care professionals, was established to oversee and drive the development of the framework, through identification of core competences and related indicators and supporting the work of 10 working groups to develop discipline specific competences. Results The Palliative Care Competence Framework identifies six domains of competence with core indicators which all health and social care professionals should be able to demonstrate on completion of initial academic programme for professional registration or in the context of their current job. Discipline-specific competences supplement the core competences and describe additional skill-specific competences acquired during training in that discipline. Discipline-specific competences are organised in three ascending levels of expertise of palliative care practice. Conclusions The framework describes universal core competences in palliative care while also detailing individual competences for each health and social care discipline. It is envisioned that the framework will inform academic curricula and professional development programmes, and so will enhance the care of people with life-limiting illness, fostering greater interprofessional and interorganisational collaboration in palliative care provision.