Palliative care provision for patients with a haematological malignancy : can we do more?

This editorial depicts the current challenges in palliative care provision for patients with a haematological malignancy and the contribution of cancer nurses. There have been significant advancements in the care of patients with a hematological malignancy over the past three or more decades1. Despite this, there still exists a significant mortality risk in curative treatment and many patients with a hematological malignancy will die from their disease1. A growing body of research indicates patients with a hematological malignancy do not receive best practice palliative and end-of-life care2. Shortfalls in care include poor referral patterns to specialist palliative care services, lack of honest discussions regarding death and dying, inadequate spiritual care for patients and families, patients frequently dying in the acute care setting and high levels of patient and family distress2. There have been a number of efforts in the United Kingdom, United States of America, Sweden, and Australia demonstrating palliative and hematology care can co-exist, exemplified through clinical case studies and innovative models of care2. However, deficits in the provision of palliative care for patients with a hematological malignancy persist as evident in the international literature2. Addressing this issue requires research exploring new aspects of a complex scenario; here we suggest priority areas of research...

The once-and-for-all withdrawal of the Liverpool Care Pathway in the UK : what are the implications for Australia?

This Perspective reflects on the withdrawal of the Liverpool Care Pathway in the UK, and its implications for Australia. Integrated care pathways are documents which outline the essential steps of multidisciplinary care in addressing a specific clinical problem. They can be used to introduce best clinical practice, to ensure that the most appropriate management occurs at the most appropriate time and that it is provided by the most appropriate health professional. By providing clear instructions, decision support and a framework for clinician-patient interactions, care pathways guide the systematic provision of best evidence-based care. The Liverpool Care Pathway (LCP) is an example of an integrated care pathway, designed in the 1990s to guide care for people with cancer who are in their last days of life and are expected to die in hospital. This pathway evolved out of a recognised local need to better support non-specialist palliative care providers’ care for patients dying of cancer within their inpatient units. Historically, despite the large number of people in acute care settings whose treatment intent is palliative, dying patients receiving general hospital acute care tended to lack sufficient attention from senior medical staff and nursing staff. The quality of end-of-life care was considered inadequate, therefore much could be learned from the way patients were cared for by palliative care services. The LCP was a strategy developed to improve end-of-life care in cancer patients and was based on the care received by those dying in the palliative care setting.

Homelessness and leaving care : the experiences of young adults in Queensland and Victoria, and implications for practice

This research first asks ‘What happens when young people leave state care?’ in respect of Victoria and Queensland and second ‘What are the service support implications of this?’ A number of methods were used to explore these questions including semi-structured interviews with 27 young adults aged 19-23 years who had been homeless or at risk of homelessness, and focus groups with young people and service providers. This study provides support for the proposition that young people should be proactively and voluntarily involved in periodic monitoring of their lived experience post care and linkage of this monitoring to the activation of timely support. The great majority of young people involved in this study thought this was not only desirable but important. Whilst some young people will be in close contact with leaving care services many others will not. New research is recommended to develop a mentoring and support activation process using participatory monitoring and action research methods. This type of approach reflects the importance of utilising processes with young people in care and leaving care which acknowledge their personhood and capacity to contribute voluntarily to the processes which seek to support them.

Palliative care phase : inter-rater reliability and acceptability in a national study

Background: The concept of palliative care consisting of five distinct, clinically meaningful, phases (stable, unstable, deteriorating, terminal and bereavement) was developed in Australia about 20 years ago and is used routinely for communicating clinical status, care planning, quality improvement and funding. Aim: To test the reliability and acceptability of revised definitions of Palliative Care Phase. Design: Multi-centre cross-sectional study involving pairs of clinicians independently rating patients according to revised definitions of Palliative Care Phase. Setting/participants: Clinicians from 10 Australian palliative care services, including 9 inpatient units and 1 mixed inpatient/community-based service. Results: A total of 102 nursing and medical clinicians participated, undertaking 595 paired assessments of 410 patients, of which 90.7% occurred within 2 h. Clinicians rated 54.8% of patients in the stable phase, 15.8% in the unstable phase, 20.8% in the deteriorating phase and 8.7% in the terminal phase. Overall agreement between clinicians’ rating of Palliative Care Phase was substantial (kappa = 0.67; 95% confidence interval = 0.61–0.70). A moderate level of inter-rater reliability was apparent across all participating sites. The results indicated that Palliative Care Phase was an acceptable measure, with no significant difficulties assigning patients to a Palliative Care Phase and a good fit between assessment of phase and the definition of that phase. The most difficult phase to distinguish from other phases was the deteriorating phase. Conclusion: Policy makers, funders and clinicians can be confident that Palliative Care Phase is a reliable and acceptable measure that can be used for care planning, quality improvement and funding purposes.

Women with self-reported lower-limb lymphedema after treatment for gynecological cancers: Are they more likely to self-report psychosocial symptoms and less likely to use services?

Background: Due to improved screening and treatment for gynaecological cancers survivorship has increased. Use of supportive care services after treatment is important to improve quality of life. Objective: To assess self-reported lower-limb lymphoedema (LLL), depression, anxiety, quality of life, unmet supportive care needs, and service use among gynaecological cancer survivors. Methods: In 2010 a population-based cross-sectional mail survey was conducted (n=160 gynaecological cancer survivors 5 to 30 month post-diagnosis (53% response rate)). Results: Overall, 30% of women self-reported LLL, 21% and 24% depression or anxiety, respectively. Women with LLL were more likely to also report symptoms of depression or anxiety, and with these symptoms had higher unmet supportive care needs. Services needed but not used by 10-15% of women with LLL, anxiety or depression respectively were lymphoedema specialist, pain specialist and physiotherapist, or psychiatrists, psychologists and pain specialists. Limitations: Small sample size, self-report data, limited generalisation to other countries, underrepresentation of older women (age >70) and women from non-Caucasian backgrounds. Conclusions: Women with LLL or high distress were less likely to use services they needed. Funding: This study was funded by Cancer Australia.

Improving wound management for residents in Residential Aged Care Facilities: National dissemination and implementation of the evidence based Champions for Skin Integrity Program

Overview The incidence of skin tears, pressure injuries and chronic wounds increases with age [1-4] and therefore is a serious issue for staff and residents in Residential Aged Care Facilities (RACFs). A pilot project funded in Round 2 of the Encouraging Best Practice in Residential Aged Care (EBPRAC) program by the then Australian Government Department of Health and Ageing found that a substantial proportion of residents in aged care facilities experienced pressure injuries, skin tears or chronic wounds. It also found the implementation of the evidence based Champions for Skin Integrity (CSI) model of wound care was successful in significantly decreasing the prevalence and severity of wounds in residents, improving staff skills and knowledge of evidence based wound management, increasing staff confidence with wound management, increasing implementation of evidence based wound management and prevention strategies, and increasing staff awareness of their roles in evidence based wound care at all levels [5]. Importantly, during the project, the project team developed a resource kit on evidence based wound management. Two critical recommendations resulting from the project were that: - The CSI model or a similar strategic approach should be implemented in RACFs to facilitate the uptake of evidence based wound management and prevention - The resource kit on evidence based wound management should be made available to all Residential Aged Care Facilities and interested parties A proposal to disseminate or rollout the CSI model of wound care to all RACFs across Australia was submitted to the department in 2012. The department approved funding from the Aged Care Services Improvement Healthy Ageing Grant (ACSIHAG) at the same time as the Round 3 of the Encouraging Better Practice in Aged Care (EBPAC) program. The dissemination involved two crucial elements: 1. The updating, refining and distribution of a Champions for Skin Integrity Resource Kit, more commonly known as a CSI Resource Kit and 2. The presentation of intensive one day Promoting Healthy Skin “Train the Trainer” workshops in all capital cities and major regional towns across Australia Due to demand, the department agreed to fund a second round of workshops focussing on regional centres and the completion date was extended to accommodate the workshops. Later, the department also decided to host a departmental website for a number of clinical domains, including wound management, so that staff from the residential aged care sector had easy access to a central repository of helpful clinical resource material that could be used for improving the health and wellbeing of their older adults, consumers and carers. CSI Resource Kit Upgrade and Distribution: At the start of the project, a full evidence review was carried out on the material produced during the EBPRAC-CSI Stage 1 project and the relevant evidence based changes were made to the documentation. At the same time participants in the EBPRAC-CSI Stage 1 project were interviewed for advice on how to improve the resource material. Following this the documentation, included in the kit, was sent to independent experts for peer review. When this process was finalised, a learning designer and QUT’s Visual Communications Services were engaged to completely refine and update the design of the resources, and combined resource kit with the goal of keeping the overall size of the kit suitable for bookshelf mounting and the cost at reasonable levels. Both goals were achieved in that the kit is about the same size as a 25 mm A4 binder and costs between $19.00 and $28.00 per kit depending on the size of the print run. The dissemination of the updated CSI resource kit was an outstanding success. Demand for the kits was so great that a second print run of 2,000 kits was arranged on top of the initial print run of 4,000 kits. All RACFs across Australia were issued with a kit, some 2,740 in total. Since the initial distribution another 1,100 requests for kits has been fulfilled as well as 1,619 kits being distributed to participants at the Promoting Healthy Skin workshops. As the project was winding up a final request email was sent to all workshop participants asking if they required additional kits or resources to distribute the remaining kits and resources. This has resulted in requests for 200 additional kits and resources. Feedback from the residential aged care sector and other clinical providers who have interest in wound care has been very positive regarding the utility of the kit, (see Appendix 4). Promoting Healthy Skin Workshops The workshops also exceeded the project team’s initial objective. Our goal of providing workshop training for staff from one in four facilities and 450 participants was exceeded, with overwhelming demand for workshop places resulting in the need to provide a second round of workshops across Australia. At the completion of the second round, 37 workshops had been given, with 1286 participants, representing 835 facilities. A number of strategies were used to promote the workshops ranging from invitations included in the kit, to postcard mail-outs, broadcast emailing to all facilities and aged care networks and to articles and paid advertising in aged care journals. The most effective method, by far, was directly phoning the facilities. This enabled the caller to contact the relevant staff member and enlist their support for the workshop. As this is a labour intensive exercise, it was only used where numbers needed bolstering, with one venue rising from 3 registrants before the calls to 53 registrants after. The workshops were aimed at staff who had the interest and the capability of implementing evidence-based wound management within their facility or organisation. This targeting was successful in that a large proportion (68%) of participants were Registered Nurses, Nurse Managers, Educators or Consultants. Twenty percent were Endorsed Enrolled Nurses with the remaining 12% being made up of Personal Care Workers or Allied Health Professionals. To facilitate long term sustainability, the workshop employed train-the-trainer strategies. Feedback from the EBPRAC-CSI Stage 1 interviews was used in the development of workshop content. In addition, feedback from the workshop conducted at the end of the EBPRAC-CSI Stage 1 project suggested that change management and leadership training should be included in the workshops. The program was trialled in the first workshop conducted in Brisbane and then rolled out across Australia. Participants were asked to complete pre and post workshop surveys at the beginning and end of the workshop to determine how knowledge and confidence improved over the day. Results from the pre and post surveys showed significant improvements in the level of confidence in attendees’ ability to implement evidence based wound management. The results also indicated a significant increase in the level of confidence in ability to implement change within their facility or organisation. This is an important indication that the inclusion of change management/leadership training with clinical instruction can increase staff capacity and confidence in translating evidence into practice. To encourage the transfer of the evidence based content of the workshop into practice, participants were asked to prepare an Action Plan to be followed by a simple one page progress report three months after the workshop. These reports ranged from simple (e.g. skin moisturising to prevent skin tears), to complex implementation plans for introducing the CSI model across the whole organisation. Outcomes described in the project reports included decreased prevalence of skin tears, pressure injuries and chronic wounds, along with increased staff and resident knowledge and resident comfort. As stated above, some organisations prepared large, complex plans to roll out the CSI model across their organisation. These plans included a review of the organisation’s wound care system, policies and procedures, the creation of new processes, the education of staff and clients, uploading education and resource material onto internal electronic platforms and setting up formal review and evaluation processes. The CSI Resources have been enthusiastically sought and incorporated into multiple health care settings, including aged care, acute care, Medicare Local intranets (e.g. Map of Medicine e-pathways), primary health care, community and home care organisations, education providers and New Zealand aged and community health providers. Recommendations: Recommendations for RACFs, aged care and health service providers and government  Skin integrity and the evidence-practice gap in this area should be recognised as a major health issue for health service providers for older adults, with wounds experienced by up to 50% of residents in aged care settings (Edwards et al. 2010). Implementation of evidence based wound care through the Champions for Skin Integrity model in this and the pilot project has demonstrated the prevalence of wounds, wound healing times and wound infections can be halved.  A national program and Centre for Evidence Based Wound Management should be established to: - expand the reach of the model to other aged care facilities and health service providers for older adults - sustain the uptake of models such as the Champions for Skin Integrity (CSI) model - ensure current resources, expertise and training are available for consumers and health care professionals to promote skin integrity for all older adults  Evidence based resources for the CSI program and similar projects should be reviewed and updated every 3 – 4 years as per NH&MRC recommendations  Leadership and change management training is fundamental to increasing staff capacity, at all levels, to promote within-organisation dissemination of skills and knowledge gained from projects providing evidence based training Recommendations for future national dissemination projects  A formal program of opportunities for small groups of like projects to share information and resources, coordinate activities and synergise education programs interactively would benefit future national dissemination projects - Future workshop programs could explore an incentive program to optimise attendance and reduce ‘no shows’ - Future projects should build in the capacity and funding for increased follow-up with workshop attendees, to explore the reasons behind those who are unable to translate workshop learnings into the workplace and identify factors to address these barriers.

Health care consumers’ perspectives on pharmacist integration into private general practitioner clinics in Malaysia: A qualitative study

Background Pharmacists are considered medication experts but are underutilized and exist mainly at the periphery of the Malaysian primary health care team. Private general practitioners (GPs) in Malaysia are granted rights under the Poison Act 1952 to prescribe and dispense medications at their primary care clinics. As most consumers obtain their medications from their GPs, community pharmacists’ involvement in ensuring safe use of medicines is limited. The integration of a pharmacist into private GP clinics has the potential to contribute to quality use of medicines. This study aims to explore health care consumers’ views on the integration of pharmacists within private GP clinics in Malaysia. Methods A purposive sample of health care consumers in Selangor and Kuala Lumpur, Malaysia, were invited to participate in focus groups and semi-structured interviews. Sessions were audio recorded and transcribed verbatim and thematically analyzed using NVivo 10. Results A total of 24 health care consumers participated in two focus groups and six semi-structured interviews. Four major themes were identified: 1) pharmacists’ role viewed mainly as supplying medications, 2) readiness to accept pharmacists in private GP clinics, 3) willingness to pay for pharmacy services, and 4) concerns about GPs’ resistance to pharmacist integration. Consumers felt that a pharmacist integrated into a private GP clinic could offer potential benefits such as to provide trustworthy information on the use and potential side effects of medications and screening for medication misadventure. The potential increase in costs passed on to consumers and GPs’ reluctance were perceived as barriers to integration. Conclusion This study provides insights into consumers’ perspectives on the roles of pharmacists within private GP clinics in Malaysia. Consumers generally supported pharmacist integration into private primary health care clinics. However, for pharmacists to expand their capacity in providing integrated and collaborative primary care services to consumers, barriers to pharmacist integration need to be addressed.

The transition to palliative care: A critical exploration in the context of metastatic melanoma

This research explored the transition to palliative care process through critical analysis of the experiences of patients diagnosed with metastatic melanoma, family carers and health professionals. The outcomes depict a complex intersection between acute care services and palliative care where the discipline of palliative care struggled to position itself within a highly specialised health system. The findings indicate uncertainty around scopes of practice with ambiguity and tension around the transition to palliative care. The research thus argues for stronger and more coherent partnerships and a critical and interdisciplinary conversation about the positioning of palliative care in the acute care sector.

What do most Americans think of cost-effectiveness research in health care?

My impression is that explicit data on the cost-effectiveness of different health care services are not valued highly by US policy makers. An example is a recent decision to approve ipilimumab for the treatment of metastatic melanoma. The extra health benefit over standard treatment is 2.1 months in previously untreated patients and the cost is $120,000 for 4 doses. This is poor value for money. Had $120,000 been allocated to an intensive lifestyle modification programme for diabetes risk (Diabet Med. 2004 Nov;21(11):1229-36) then 67 years of life or 800 months could have been returned. A massive increase in health benefits for the same costs.

Process quality indicators targeting cognitive impairment to support quality of care for older people with cognitive impairment in emergency departments

Objectives The objective of this study was to develop process quality indicators (PQIs) to support the improvement of care services for older people with cognitive impairment in emergency departments (ED). Methods A structured research approach was taken for the development of PQIs for the care of older people with cognitive impairment in EDs, including combining available evidence with expert opinion (phase 1), a field study (phase 2), and formal voting (phase 3). A systematic review of the literature identified ED processes targeting the specific care needs of older people with cognitive impairment. Existing relevant PQIs were also included. By integrating the scientific evidence and clinical expertise, new PQIs were drafted and, along with the existing PQIs, extensively discussed by an advisory panel. These indicators were field tested in eight hospitals using a cohort of older persons aged 70 years and older. After analysis of the field study data (indicator prevalence, variability across sites), in a second meeting, the advisory panel further defined the PQIs. The advisory panel formally voted for selection of those PQIs that were most appropriate for care evaluation. Results In addition to seven previously published PQIs relevant to the care of older persons, 15 new indicators were created. These 22 PQIs were then field tested. PQIs designed specifically for the older ED population with cognitive impairment were only scored for patients with identified cognitive impairment. Following formal voting, a total of 11 PQIs were included in the set. These PQIs targeted cognitive screening, delirium screening, delirium risk assessment, evaluation of acute change in mental status, delirium etiology, proxy notification, collateral history, involvement of a nominated support person, pain assessment, postdischarge follow-up, and ED length of stay. Conclusions This article presents a set of PQIs for the evaluation of the care for older people with cognitive impairment in EDs. The variation in indicator triggering across different ED sites suggests that there are opportunities for quality improvement in care for this vulnerable group. Applied PQIs will identify an emergency services' implementation of care strategies for cognitively impaired older ED patients. Awareness of the PQI triggers at an ED level enables implementation of targeted interventions to improve any suboptimal processes of care. Further validation and utility of the indicators in a wider population is now indicated.

Guidelines for syringe driver management in palliative care

These guidelines are intended to provide clinicians and palliative care services with guidelines to inform practice, the development of policy and procedures, and associated training and education programs in relation to portable subcutaneous infusion device (syringe driver) management.

How an urban Aboriginal and Torres Strait Islander primary health care service improved access to mental health care

Aboriginal and Torres Strait Islander people experience higher levels of psychological distress and mental ill health than their non-Indigenous counterparts, but underuse mental health services. Interventions are required to address the structural and functional access barriers that cause this underuse. In 2012, the Southern Queensland Centre of Excellence in Aboriginal and Torres Strait Islander Primary Health Care employed a psychologist and a social worker to integrate mental health care into its primary health care services. This research study examines the impact of this innovation.

Palliative care problem severity score: Reliability and acceptability in a national study

Background The Palliative Care Problem Severity Score is a clinician-rated tool to assess problem severity in four palliative care domains (pain, other symptoms, psychological/spiritual, family/carer problems) using a 4-point categorical scale (absent, mild, moderate, severe). Aim To test the reliability and acceptability of the Palliative Care Problem Severity Score. Design: Multi-centre, cross-sectional study involving pairs of clinicians independently rating problem severity using the tool. Setting/participants Clinicians from 10 Australian palliative care services: 9 inpatient units and 1 mixed inpatient/community-based service. Results A total of 102 clinicians participated, with almost 600 paired assessments completed for each domain, involving 420 patients. A total of 91% of paired assessments were undertaken within 2 h. Strength of agreement for three of the four domains was moderate: pain (Kappa = 0.42, 95% confidence interval = 0.36 to 0.49); psychological/spiritual (Kappa = 0.48, 95% confidence interval = 0.42 to 0.54); family/carer (Kappa = 0.45, 95% confidence interval = 0.40 to 0.52). Strength of agreement for the remaining domain (other symptoms) was fair (Kappa = 0.38, 95% confidence interval = 0.32 to 0.45). Conclusion The Palliative Care Problem Severity Score is an acceptable measure, with moderate reliability across three domains. Variability in inter-rater reliability across sites and participant feedback indicate that ongoing education is required to ensure that clinicians understand the purpose of the tool and each of its domains. Raters familiar with the patient they were assessing found it easier to assign problem severity, but this did not improve inter-rater reliability.

A model of social work classification in health care

The introduction of casemix funding for Australian acute health care services has challenged Social Work to demonstrate clear reporting mechanisms, demonstrate effective practice and to justify interventions provided. The term 'casemix' is used to describe the mix and type of patients treated by a hospital or other health care services. There is wide acknowledgement that the procedure-based system of Diagnosis Related Groupings (DRGs) is grounded in a medical/illness perspective and is unsatisfactory in describing and predicting the activity of Social Work and other allied health professions in health care service delivery. The National Allied Health Casemix Committee was established in 1991 as the peak body to represent allied health professions in matters related to casemix classification. This Committee has pioneered a nationally consistent, patient-centred information system for allied health. This paper describes the classification systems and codes developed for Social Work, which includes a minimum data set, a classification hierarchy, the set of activity (input) codes and 'indicator for intervention' codes. The advantages and limitations of the system are also discussed.

What are we waiting for?

The clinical education of Australia’s aged care nurses can no longer be treated as the Cinderella of nursing’s specialities. It is urgent that ways be agreed and measures taken to bring this branch of the profession, and residential aged care nursing in particular, into mainstream health care services. There should be no need to describe again the evolving shape of Australia’s demographic profile between now and the middle of this century; and no need to prove here that the ageing bulge is already placing a severe strain on staffing in the sector. A substantial percentage of the aged care nursing workforce is nearing retirement and the ratio of departures to recruits seems set to worsen at the same time as demand for high quality nursing care escalates. Important indicators – the number of the most highly dependent residents has doubled in the past seven years; compounding co-morbidities are increasingly common and an estimated 60-80% of residents in residential aged care facilities (RACFs) have a dementing illness – reveal the rapidly rising levels of frailty and dependency in the RACF population.