bluuebunny/crossref_metadata_2025 huggingface dataset:
Evaluation of a hospice specialist palliative care nurse secondment to the acute setting
Authors: Conn Meriel , Kerr Linda , Sherry Kathleen
Published: March 2012

Background

As specialist palliative care services are evolving and reasons for admission to hospice are changing, the Ayrshire Hospice has developed an innovative model of practice within the In-Patient Unit (IPU) senior nursing team. One of the senior Hospice Specialist Palliative Care Nurses (SPCN) in this team identified in her personal development plan that experience in the acute setting working with the Hospital Specialist Palliative Care Team (HSPCT) would be of benefit. In collaboration with the local district general hospital a structured SPCN clinical secondment to the acute setting was developed and evaluated.

Objectives

Develop understanding of the role of the HSPCT and of challenges specific to clinical practice in the acute setting. Develop and demonstrate skill and competency in multidimensional patient assessment. Manage own patient caseload. Develop skill in writing clinical letters. Increase awareness of key priorities of communication between the acute hospital and the community setting.

Method

Two month secondment; clinical experience; working with the HSPCT; new patient and ward reviews; multidisciplinary team meetings; informal ward teaching; integrated liaison with hospice community team and multidimensional assessment of acute transfers to hospice. Electronic and letter communication, attendance at team development and clinical governance meetings.

Conclusion

The acute hospital presents different challenges in day-to-day practice when compared to the specialist palliative care unit. This secondment facilitated and supported the development of autonomous practice and fulfilled the objectives. These are transferrable skills. On returning to the hospice the aim is to maintain and demonstrate this level of clinical assessment while encouraging staff to develop their own assessment skills further and continue to develop a workable SPCN patient caseload in the IPU. This will also support the opportunity to mentor hospital and community staff undertaking the ‘Nurses with a Specialist Interest in Palliative Care’ education programme during their hospice clinical attachment.
‘Thinking differently’ to redesign community specialist palliative care services
Authors: Traue Dee
Published: March 2012

Background

Isabel Hospice provides care for a population of 350,000 across eastern Hertfordshire. To enable the hospice to meet the challenge of an increasing demand for community services at a time of financial constraint, we utilised the NHS Institute for Innovation and Improvement ‘Thinking Differently’ programme. This provides a range of practical approaches and tools which enable fundamental rethinking of pathways of care and service delivery.

Aims

To think creatively about how we give people nearing the end of their life, and their family/carers, the best possible support and care in the place of their choice.

Methods

The ‘Thinking Differently’ three part process was adopted: Stop before you start – an initial focus group for hospice staff to reframe our challenge and consider it from a number of different perspectives. Generating ideas – four focus groups for stakeholders across our catchment area which used divergent thinking techniques to produce a large quantity of innovative ideas. Selecting and testing ideas – a final focus group for senior hospice staff using convergent thinking techniques to identify the ideas most likely to make a difference.

Results

A total of seven focus groups were held, three for hospice staff and four for external stakeholders, including patients, carers and a range of health and social care professionals. From over 30 innovative ideas generated, four projects have been identified for further development: ‘Isabel Urgent Care’ – a rapid response hospice @ home service ‘Hospice Direct’ – an enhanced 24/7 advice line for patients and professionals ‘Living Well With Isabel’ – a Patient and Carer Self-Management Programme ‘The Mobile MDT’ – Multi-professional community clinics.

Conclusion

Using the ‘Thinking Differently’ toolkit enabled the hospice to undertake a robust consultation process with our key stakeholders and identify approaches to transform the services we provide.
‘Five things i would like a community specialist palliative care service to provide’ – a novel approach
Authors: Traue Dee
Published: March 2012

Background

Isabel Hospice provides care for a population of 350,000 across eastern Hertfordshire. Changes in our population and an increasing focus on choice in place of care have resulted in a growing demand for services to support patients to live and die at home. To inform future community service development, the hospice organised a series of focus groups for patients, carers and professionals. However, it was recognised that this method of engagement would only reach a limited number of stakeholders.

Aim

To identify the priorities for community specialist palliative care service development of both stakeholders from local health and social care organisations and hospice staff.

Methods

A postcard was developed asking the respondent to list ‘five things I would like a community specialist palliative care service to provide’. The postcards also captured basic demographic data about the respondent. Over 300 postcards were distributed, with a covering letter, to local stakeholders including primary care teams, acute and mental health trust staff, adult care services and local voluntary sector organisations. Electronic versions of the postcard were distributed to all hospice staff and volunteers.

Results

External respondents – 43 cards were returned, including 17 from district nurses and 14 from GPs. These included a total of 171 suggestions for what respondents would like the hospice to provide. The most popular themes were provision of ‘hands on’ care and access to advice and support 24/7. Internal respondents – 52 cards were returned, 17 from clinical staff and 31 from volunteers. These included a total of 157 suggestions, with the majority focusing on the development of day hospice and outpatient services.

Conclusion

By adopting the novel approach of distributing the ‘five things’ postcard, the hospice was able to gather much wider stakeholder feedback than would have been possible by the use of focus groups alone.
Experiences of end of life care of patient's with motor neuron disease on non invasive ventilation
Authors: Steel Kimberley , Hodgson Aruna , Waterman David , Harrison Sophie , Bentley Andrew
Published: March 2012

Background

In July 2010 NICE developed guidance on the use of non-invasive ventilation (NIV) in patients with Motor Neuron Disease (MND). In the North West of England the University Hospital of South Manchester (UHSM) provides a tertiary Long Term Ventilation Service (LTVS) which establishes NIV for patients in the region. The NICE guidance means increasing numbers of MND patients are being commenced on NIV and subsequently the number of patients reaching the end of their life on NIV is increasing.

Method

As part of the service review UHSM LTVS carried out a postal survey of GP's whose patient's died between July 2010 and December 2010 to evaluate the end of life care of MND patients on NIV.

Results

12 GP's were contacted and 8 returned feedback. •Place of death: 5 at home 2 in hospital 1 in a hospice •There were multiple professionals involved in the patients' deaths; 5/8 of the patients had 3 or more professional disciplines involved. •5/8 patients had an Advance Decision to Refuse Treatment (ADRT); 3/5 related to the patient's ventilation – 2 relating to withdrawal and 1 stating a wish to die on NIV •5/8 patients died on NIV (including 2 with an ADRT for NIV withdrawal) •GP's confidence in dealing with NIV was variable.

Conclusion

There is increasing number of MND patients reaching the end of their lives dependent on NIV. The confidence of GP's is variable and the number of healthcare professionals involved with these patients is substantial. Although the majority of patients had ADRTs, these did not always relate to NIV. Even if it did, NIV was still continued. In light of these findings UHSM LTVS has recognised the need to develop multi-disciplinary ‘end of life care’ guidelines for patients with MND who are using NIV.
A children's hospice funded team to develop transitional pathways between acorns and adult providers
Authors: Reed Christopher , Turner Pat
Published: March 2012

Motivation

Acorns has previously identified through a feasibility study that there is little proactive coordination in respect of planned transition to adult services for our clients. There are circa 110 young adults using Acorns presently facing the prospect of transition to adult care.

Problem statement

At a time when many young people are at their most vulnerable Acorns would provide on-going support that would address the future aspirations of every young person we care for, as well as ensuring that their palliative care needs are met. The Transition Team will enable young people to access services for adults through the familiar organisation of Acorns. There would be no abrupt end of services and young people would be enabled to make choices about their future supported by an organisation they know and trust.

Approach

The 36 month target to complete transition from Acorns to adult services requires 3 P/T workers and F/T manager to work across the Acorns region. Working alongside existing community workers, preparation for adulthood will take place to enable discharge from the children's service and engagement with the adult sector. This involved liaison/partnership with external ‘adult’ agencies offering services to life limited young people. Delivery of this service will follow a care model devised from the ACT Transitional Pathway.

Conclusion

Life Limited Young people need options and choices for future care. There is a need to empower life limited young people and their families to advocate for themselves. Previous project work carried out by Acorns highlights the need for an appropriately (transition) worker. Life limited young adults with profound physical and learning disabilities need comparable services in the adult sector in order to monitor and maintain health. Health needs are not the only component of transition which requires addressing.
Advance care planning for renal patients
Authors: Ackroyd Rajeena
Published: March 2012

Background

There is increasing evidence of the benefits of advance care planning in patients with advanced kidney disease. End of life care in Advanced kidney disease (2009) A framework for implementation has also recommended their use.

Method

Since 2008 in Calderdale a renal palliative care clinic has been established. All conservative care patients (not for dialysis) are seen by a palliative care consultant providing an ideal opportunity for advance care planning. In October 2010, an advance care planning document was introduced within the trust and used within the clinic

Results

From October 2010 to April 2011, 20 Patients were reviewed in the clinic (average age 82 years and average eGFR=13.8 (range 6.3-18.5) During this 6-month period, 5/20 patients had formally completed an advance care plan which had been circulated and 7/20 patients were in the process of completing an advance care plan. One patient had completed an advance decision to refuse treatment. Therefore 65% patients were actively involved in the process and all had involved a family member.

Conclusion

The renal palliative care clinic is ideal for the integration of advance care planning for patients with advanced kidney disease as it allows the opportunity to develop a good relationship with the patient and their family. It supports the need for chronically ill patients to think about the future direction of their medical care, preparing them for death and gain a realistic understanding of the services available. Advance care planning does take time but can empower patients to achieve a sense of control and relieve the burden of decision making from relatives. Further evaluation of outcomes is important.
Improving links between specialist palliative care and the motor neuron disease team
Authors: Smith Jenny , Waldock Joy
Published: March 2012

Background

Motor neuron disease (MND) is a progressive neurodegenerative disease. The incidence of developing MND is approximately 2 per 100,000 people with 7 per 100,000 people living with the disease worldwide. The MND Association of standards of care document recommends that referral is made to the Specialist Palliative Care (SPC) Team for all patients soon after diagnosis and for psychological support at the time of diagnosis. A recent all-party parliamentary group inquiry found that: good specialist palliative care provides value for money by reducing interventions, reducing calls to emergency services and reducing hospital admissions. Unfortunately access to SPC varies greatly across the UK and there are no standardised referral pathways.

Aims

Currently the mid-Yorkshire SPC team see only a few patients with MND each year. This audit was intended to establish the common symptom management problems and determine which patients are referred to SPC, and by which methods. An additional short survey to both the Palliative Care and MND Teams was performed to highlight staff views with regards to access to appropriate expertise and services at the appropriate time.

Results/Conclusion

A small number of patients with MND are referred to the SPC team in mid-Yorkshire and consequently confidence levels among the SPC staff looking after them can be low. Introducing the role of specialist palliative care soon after diagnosis would allow these patients to have choice regarding their care and educate them that palliative care is not just about death and dying but about enhancing quality of life.

Recommendations

More collaborative working between the two teams, review of current referral pathways and SPC attendance at MND clinics to improve communication and also the holistic care for these patients. A formal education programme is also needed with refresher/update sessions for all staff to improve confidence and skill levels.
Developing and implementing a guideline for deactivating implantable cardioverter defibrillators
Authors: Seaman Siwan , Pease Nikki
Published: March 2012

Background

Recommendations from NICE technology appraisals would suggest that the number of patients meeting the criteria for implantable cardioverter defibrillator (ICD) implantation is far greater than the current implantation rate in the UK. With an increasing number of centres implanting ICDs we can expect to see an increasing number of patients with ICDs in the palliative care setting over the next decade. Although for some patients their life-limiting illness will be of a cardiac nature, others will require palliative care for an unrelated pathology for example, advanced cancer. The impetus for this project came after noting an increasing number of patients at our regional cancer centre with ICD devices. A telephone survey of 8 specialist palliative care units (SPCUs) across South Wales was undertaken, where medical directors were asked if either guidelines or a policy for managing patients with ICDs were available to them. The survey identified a complete lack of guidelines for managing patients with ICDs at the end of life. Hence the need for concise and practical guidelines for the management of ICDs in palliative care inpatient settings was identified.

Aims and Methods

To develop a guideline that would simplify the science of ICDs to non-cardiologists, provide information to help a palliative physician discuss available options with patients and their families and deliver practical advice on ICD deactivation both in an emergency setting and after death. Cardiologists from the two device implanting centres in South Wales were consulted and provided input throughout the guideline development process. The medical illustration department were approached to provide images to demonstrate emergency deactivation.

Conclusion

Following development and national ratification of the guideline it has been introduced together with an education tool to the medical directors of SPCUs across Wales for implementation.
Madrid ELA and Palliative Care Regional Protocol
Authors: Merino Teresa Garcïa-Baquero , Salas Teresa , Diego Ruiz-Lpez , Belen Esteban Jesus Martinez Cruz Mï
Published: March 2012

Background

MND sufferers benefit from specialist PC input at various points during its trajectory with varying degrees of involvement the authors wanted to optimise and homogenise technical and human resources to integrate them in a single model to offer the right continuing care to this group of patients and their families. Referral criteria were mere recommendations developed by the different MND Units' Coordinators, not formalised;. independent criteria could be enough to support referral.

Aim

To create a common protocol of care for all MND Units and PC teams. To encourage the early detection of palliative care needs for this patient's group. To know the best point at which to include these patients in regional PC program.

Methods

Several meetings were held incorporating members from HC Teams, Hospital Teams, public and private inpatient units, Primary Care, Neurologists, monographic MND units and PAL24. Together they have designed and started to implement: Organisative Model. Assistential Model. Pathway definition 24 h specialist access and care Taylor made electronic systems.

Results

Trigger or inflexion points to inform the decision making process as to when to refer to PC have been established and incorporated in the Madrid Adult Referral Form. An urgent need to create inpatient facilities -with technical, material and human resources-to cater for the needs of this group of patient was identified: Regular inpatient care and respite care.

Conclusion

1. Madrid has achieved its first ever MND PC joint project 2. Close collaboration and coordination between all professional groups involved ensued and helped agree the following:

▶

Referral criteria.

▶

MND training for PC professionals.

▶

Need for PC professionals to gain experience in MND Units.

▶

To offer workshops run by MND experts to PC professionals.
What's my role?
Authors: McNamara Katrina
Published: March 2012

Background

In 2010, the Department of Health in England made £30m funds available to develop children's palliative care services. ACT, the UK Children's Palliative Care organisation received funding to develop a practice resource for GPs.

Aims

The presentation will provide an introduction to the Handbook in Children's Palliative Care for GPs. The resource aims to support GPs in their key role in supporting children and young people with palliative care needs and their families, in understanding the complex needs that they will have, and having an overview of the network of service providers involved and engaged with the wider primary healthcare team. It will also cover the range of ‘What’s my role?' resources which were developed in the wake of the Handbook and provide an introduction to the 30 m stars website which offers access to a range of resources to support services and practitioners in their work with children, young people and their families.

Conclusion

A range of resources are available to support primary care practitioners and others as they consider their role in supporting children and young people with life-limiting/life-threatening conditions and their families.
Engaged clinical ethics in palliative care: generating consensus and minimising conflict in decision-MAKING
Authors: Gannon Craig , Hunt Geoffrey , Gallagher Ann
Published: March 2012

Background

Social, legal and healthcare changes have created an increasing need for more explicit ethical review within end-of-life care. Multi-professional Clinical Ethics Committees (CECs) now support decision-making in an increasing number of hospitals and hospices. A number of ethical frameworks have been suggested to structure or guide their deliberation. However, the rather abstract nature of the existing ethical frameworks does not allow easy integration into everyday clinical practice.

Aims

To develop a fit for purpose deliberative framework derived from long-term discussion at one UK hospice.

Design

Using qualitative content analysis, a thematic structure that could serve as a deliberative framework was drawn from the analysis of the anonymised records of CEC discussions at a hospice.

Data sources

Analysis of approved written summaries of discussion from quarterly hospice CEC meetings over four years (2007–2011). The core membership of CEC included external support from two Professors/one Reader and internal multi-professional representation; medicine; nursing; education; chaplaincy; physiotherapy; speech and language therapy; and social work.

Results

Five themes were identified and related in a structure: timeliness of decision-making; holistic care; contextual openness; values diversity; and consensual understanding.

Conclusions

An alternative ethics framework was generated from the realities of everyday practice. Analysis of the discussion summaries from a hospice CEC identified five themes; these appeared to be at the root of most of the problems, dissatisfaction and failures within the scenarios discussed. The thematic structure derived from this analysis of the CEC summaries can serve as an ‘engaged clinical ethics framework’ for deliberation on cases and situations. Moreover, as part of organisational learning, promotion of the emerging virtues generated by the identified themes should improve consensual decision-making and minimise conflict, to thereby enhance the quality and dignity of care.
A specialist led community based subcutaneous diuretic service for end stage heart failure
Authors: Hookey Claire , Satchithananda Duwarakan , Ingram Angela , Crawford-Thomas Sarah , Barker Philomena
Published: March 2012

Introduction

Multiple hospital admissions are a common feature of advanced heart failure(HF), accounting for significant healthcare expenditure. Admissions are often precipitated by increasing breathlessness, and inpatient intravenous diuretics are administered. Collaboration between specialist palliative care(SPC) and HF services locally resulted in a specialist led service able to provide, monitor and titrate subcutaneous(sc) diuretics in the community.

Aims

To determine patient and carer views • To identify potential demand for the service. To calculate cost savings.

Methods

1. A focus group of HF patients and their carers. 2. All patients in the supportive and palliative phase of HF under a single cardiologist (DS) were identified. 3. A cost analysis was performed based on the knowledge that any patient given sc diuretics would previously have been admitted.

Results

The focus group uniformly welcomed the service. • In 1 year, 56 patients were identified who may be suitable for the service in the future (only 17 required SPC review). • 13 patients (mean age 76.9, NYHA IV) received s/c diuretics, 6 at home and 7 in the hospice. Total number of episodes of treatment was 27. Of the 6 patients who have died, 5 died in the hospice and 1 at home. • The total predicted cost using the tariff for heart failure with complications and comorbidities was £112203. The total cost of community services (including input by all nurses, GPs and SPC services including hospice admissions) was £70916. This is a cost saving of £41287 for all 13 pts.

Conclusion

A specialist led community based subcutaneous diuretic services is welcomed by patients with end stage heart failure and has the potential to deliver significant cost savings.
Being there – for children and families
Authors: Maynard Linda , Leeson Janet
Published: March 2012

Services across the UK are challenged to provide 24/7 care to support babies, children and young people with life-threatening conditions and their families living with their condition 24 h a day, 7 days a week. This poster outlines an evaluation of an innovative approach to 24/7 specialist symptom management support throughout Norfolk, Suffolk, Cambridgeshire and North Essex. A model was developed incorporating evidence and standards from Better Care: Better Lives (DH, 2008) and ACT Care Pathway Standards (ACT, 2007). Principal objectives were to: • develop a 24/7 symptom management Team • offer open access to families and professionals • grow a medical network • collaborate with others to develop common approaches, shared pathways and management plans.

Findings

Following recruitment, a live service was offered from October 2010, using five children's clinical nurse specialists and an outsourced call handling service. Sixty calls were received out of office hours during the first 6 months and 79 children entered the caseload • Using DH £30 million funding, a series of workshops were held which enabled a successful business case for the commissioning of a managed medical network from April 2012 • The team has catalysed a number of developments, including common protocols for syringe driver use, universal end of life plans and shared symptom management plans. Benefits for families: • Prompt access to remote advice and hands on nursing care • Care in their preferred location • Team approach gave families confidence that out of hours contact was with individuals who knew their situation • Surprises included team members becoming key workers and catalysis of proper symptom management plans for children.

Challenges

• Understanding this innovative role and service by other professionals • Some current providers perceived the Team as a threat • Large geographical area covered.
Development and implementation of psychological care in a children's hospice
Authors: Wray Jo , Lindsay Bruce , Crozier Kenda , Andrews Lauren , Leeson Janet
Published: March 2012

Background

The Department of Health recently offered funding to support children's palliative care projects, one of which addressed the provision of psychology services within specific children's hospices. The aims of the project were to review best practice in the current provision of psychological support for children with palliative care needs and their families, identify methods of assessing need and evaluating outcomes, and determine how psychological services might link with and enhance the model of supportive care already provided by the hospices.

Methods

A mixed methods approach was adopted, involving focus groups with family members and hospice staff, individual face-to-face or telephone interviews with family members, hospice staff and external staff and a web-based survey for parents. Topics covered included the assessment of psychological need and how need is met, the provision of specialist services and any gaps in provision, and the use of assessment and outcome measures. Interviews were recorded and transcribed verbatim and analysed using thematic coding.

Results

Ninety-five hospice staff, 28 external staff and 74 family members participated. All staff currently provide psychological support at level 1 (NICE 2004), some provide support at levels 2–3 but there is no provision at level 4. However, there is an untapped and unrecognised resource of existing staff skills within the hospices. Validated tools are not used for assessment or evaluation and some concerns were raised about the mechanisms for families and staff to provide open and honest feedback. Particular areas of need for specialist intervention included the management of challenging behaviour and supervision for staff managing complex situations.

Conclusion

Provision of specialist psychology services would be of benefit to the hospices, their patients and families, and external staff. Such a role needs to be embedded in a systemic model of working and have strong links with other professional groups.
Guidelines for withdrawal of ventricular assist devices
Authors: Clark Stephen , Wrightson Neil , Louw Stephen , Regnard Claud
Published: March 2012

Background

Advanced heart failure is one of the most common causes of admission to hospital. Patients may be treated with cardiac transplantation but, due to an unprecedented shortage of donor organs, some now receive ventricular assist devices (VADs) – mechanical pumps implanted alongside the heart to augment cardiac output. Patients may be implanted as rescue therapy, for long term heart failure management or as a bridge to transplantation. Some patients now reach end of life with a VAD in situ, either due to device related complications (stroke, infection) or through the development of terminal intercurrent disease such as cancer.

Aims

To develop guidelines for the withdrawal of VAD therapy at end of life. Issues: Scenarios will be presented to illustrate a guidelines algorithm we have developed for management of these cases, for example a patient after massive stroke with a device in situ, and a patient in a hospice setting with terminal cancer. Decision frameworks for withdrawal will be described, underpinned by the Mental Capacity Act 2005. Due to the patient's underlying cardiac output, death will not necessarily immediately follow switching off the device and this should be anticipated and the expectation managed. All devices have in built alarms to warn of device malfunction but these will cause much disruption at end of life. Device specific management with the help of relevant specialists is crucial to avoid distress. Use of best interests meetings, independent mental capacity advocates and advance care planning are encouraged within our framework.

Conclusion

With increasing numbers of devices implanted in the UK, the issue of end of life care in VAD patients will challenge palliative care teams. Expectations must be managed and knowledge of device alarm systems is crucial to avoid distress at end of life. Advance care plans, advocacy and multidisciplinary working are strongly recommended.
Place of death, end-of-life transitions and cognition: a population cohort aged 85 and older
Authors: Perrels Anouk , Fleming Jane , Zhao Jun , Farquhar Morag , Barclay Stephen
Published: March 2012

Background

Despite fast-growing ‘older old’ populations, place of care trajectories for very old people approaching death with or without dementia are poorly understood. This study compares place of death and end-of-life transitions in place of residence experienced by ‘older old’ people of different cognitive status and, if ascertainable, dementia status.

Methods

Descriptive analysis of prospectively collected data linked with mortality records of n=283 participants in the UK population-based Cambridge City over-75s Cohort (CC75C) with cognitive assessments <1year before they died aged ≥85 (n=104 of known dementia status).

Results

69% were community-dwelling (home/sheltered housing) <1year before death, as were 40% of those with severe cognitive impairment or dementia. By the time of death only a small minority had changed address, according to their ‘usual address’ on death registration. However, for 55% this ‘usual address’ was not the place of death: in the period leading up to death over half moved their place of residence or care and died away from their ‘usual address’ (72% from community addresses, 20% from institutions). This discrepancy was greatest for those with intact cognition. Hospital was the most common place of death for all but the most cognitively impaired, whereas for individuals with severe cognitive impairment or dementia it was a care-home.

Conclusion

These results provide important information for planning end-of-life services. The majority of very old community-dwelling individuals, especially those with severe cognitive impairment, died away from home, perhaps suggesting insufficient support in the period prior to death. Findings also suggest long-term care but not sheltered settings may avoid acute hospital admissions. Further research is needed on the effect of care transitions on people with cognitive impairment and dementia. Complex care needs of ‘older old’ people approaching death may involve a change in locus of care: more individualised end-of-life care approaches are needed in all settings.
‘There is always something else we can do’: staff perspectives on sedation in end of life care
Authors: Seymour Jane , Browne Jayne
Published: March 2012

Background

Few studies take a qualitative perspective on decision-making surrounding sedation practice in end of life care for cancer patients. The UNBIASED study (UK Netherlands Belgium International Sedation Study) comprises three linked studies in the UK, Belgium and the Netherlands. This paper reports preliminary UK findings.

Aim

To examine what specialist palliative care doctors and nurses understand by sedation in end of life care for patients with cancer, and their experiences with the practice.

Methods

Profession specific focus groups with doctors and nurses working in specialist palliative care settings (two hospices; one hospital support team). Data were analysed with the aid of NVivo, taking a constant comparison approach.

Findings

43 staff (25 nurses and 18 doctors; range of palliative care experience from 8 months to 29 years) took part in six focus groups. Sedation was seen as an aspect of clinical treatment required for many patients, often for the relief of anxiety or to aid ‘time out’ from distress. Continuous sedation (as opposed to ‘as required’) was reported as a treatment for terminal agitation, to keep patients safe and comfortable. Using continuous deep sedation for refractory symptoms with the explicit intent of reducing consciousness prior to death was an occasional experience. Some found decision-making difficult when patients expressly requested sedation or where suffering was primarily existential. Offering the option of sedation to patients was seen as an important means of acknowledging their suffering. Where patients lacked capacity, staff sought to make decisions by team consultation and in the light of family concerns. Barriers to sedation practice included negative attitudes of other staff and patients families and a desire not to be thought to be hastening death.

Conclusion

These findings inform patient centred case studies in the next phase of this study in hospice, hospital and community sites.
Development of guidelines for the management of diabetes in palliative patients
Authors: Bentley Jane , MacLeod Jean , Peacock Deborah
Published: March 2012

Background

Diabetes is becoming increasingly common. New onset diabetes can occur due to steroid therapy or malignancy. The management of diabetes in palliative and end of life care tends to be very variable and idiosyncratic.

Aims

To develop guidelines to provide a practical, coordinated approach to managing diabetes in palliative patients across primary and secondary care.

Methods

A literature search was conducted to determine the guidelines available for the management of diabetes in palliative patients. A team of doctors including a diabetes and palliative medicine consultant, GP and hospice practitioner held a series of meetings to discuss and produce comprehensive guidance for the management of diabetes from the diagnosis of a palliative illness up to and including the last days of life. Draft guidelines were shared with other diabetes consultants and nurses for comment. Feedback was sought from ward, district, hospice and Macmillan nurses.

Results

The guidelines explain the change in emphasis of diabetes care in palliative patients, focusing on quality of life rather than the prevention of long term complications. They advise on drug management, but also stress the importance of psychological and family support. Guidance is given on the management of steroid induced diabetes and a flowchart for dying patients was designed to be used alongside the end of life care pathway.

Conclusion

The evidence base for comprehensive guideline development is poor so a pragmatic interspeciality collaborative approach working between primary and secondary care was taken to develop guidelines aimed at improving integrated patient care. They are adopted locally and by neighbouring Trusts. The guidelines have been presented throughout the Northern Region and it is hoped that a national approach will be developed in part based on our experience. Research is needed to assess the effect of the guidance on patient care.
Complementary therapies for people with motor neurone disease: extending a cancer care service
Authors: Hughes Philippa , Seymour Lynn , Hollinger Hannah , Evans Jane , McDermott Christopher , Shaw Pamela
Published: March 2012

Background

Cavendish Cancer Care (CCC) is a charitable organisation in Sheffield providing assessment, counselling and complementary therapies for people with cancer and their families. Motor Neurone Disease (MND), is characterised by progressive deterioration: muscle wasting, speech, swallowing, and breathing difficulties. A year-long pilot study for patients and carers, funded by South Yorkshire MND Association was set up using the CCC model of care, in conjunction with the MND Team at the Royal Hallamshire Hospital. We report here on patient experiences, using our standard evaluation procedures.

Aim

To assess the value and outcomes of a supportive care service for people diagnosed with MND.

Method

Data was collected over 1 year. Clients were seen at home or at the Centre, and completed the Measure Yourself Concerns and Wellbeing (MYCAW) scale, in which clients score their nominated main concerns on a 7-point scale at assessment, repeated at post-therapy review, and give comments on the service received.

Results

Twenty-seven people, with ages ranging from 50 to 83, of whom 14 were men, used the service during the year. Fifteen were seen in their own homes, and twelve at the Centre. Physical symptoms were prominent among the concerns, along with emotional issues, the need for relaxation, for information, and for general wellbeing. Twenty-four patients received therapy: massage/aromatherapy massage, shiatsu and reflexology were chosen most often. Follow-up scores were available for 16 patients, with improvements in first nominated concerns for eleven, static scores for three and deterioration for two. Comments from those reporting no improvement suggest that there were benefits, but not specific to the concern, or transient.

Conclusion

Compared to our usual cancer populations, patients with MND showed a higher proportion of symptom-based concerns. Improvement was reported by a smaller majority with MND compared to cancer patients. General benefits of the therapies were highlighted.
Adult specialist palliative care services and the provision of care for young adults with complex disabilities: what are the issues? findings of a national survey
Authors: Lidstone Victoria , Meagher Sarah , Baba Megumi
Published: March 2012

Introduction

Over the last decade the number of children with life-limiting conditions surviving into adulthood has increased dramatically and is likely to continue to increase. Engaging the Adult Specialist Palliative Care (SPC) services in the care of these young adults (YA) is essential. The YA concerned commonly have complex needs, rare conditions and a mixture of cognitive and physical disabilities. For many adult SPC teams this is new territory, and there are many potential barriers to care. Provision of SPC services for these YA needs to be appropriate, available and equitable- and in practice this is often a challenge. With this in mind, we endeavoured to identify and explore the barriers to care.

Methodology

We conducted a telephone survey using a semistructured questionnaire. All adult SPC in-patient units in Wales were invited to participate. The Clinical Lead was interviewed and we explored their experiences, views and concerns regarding proving a service to these YA.

Results

13/14 units participated. Five of the units had had experience in caring for YA with complex needs but none had looked after more than 2. There was enthusiasm for providing service to YA but this was tempered by some important concerns. Including Education/training of staff, adequate staffing levels and funding. There were several practical issues including management of non-invasive ventilation and ventricular-peritoneal shunts that reduced general confidence. Interestingly, there was a shift in attitudes over the course of the interview, resulting in 12 of the units feeling confident to admit the hypothetical patients (with Cerebral Palsy and Duchenne Muscular Dystrophy).

Conclusion

The attitudes among the adult SPC units towards the care of YA with complex needs are generally positive. There are, however, specific issues and concerns that need to be addressed in order to safely progress in developing an appropriate service for this patient group.
Survey of advice given to cancer patients by health professionals regarding fitness to drive
Authors: Kennedy Benedick
Published: March 2012

Background

The DVLA states that it is the patient's responsibility to inform them of conditions that may hinder their driving ability. The GMC outlines the duty of the doctor to ensure that the patient first understands their responsibility and second informs the DVLA of details pertinent to their condition.

Objectives

To explore the extent that patients are being advised of their responsibilities when diagnosed or while being treated for conditions that might hinder safe driving.

Design

A postal survey distributed to a cohort of 96 consecutive discharges from Haematology/Oncology ward within an acute NHS trust, regardless of their specific diagnosis.

Results

Survey return rate of 25%. Of these only 17% indicated that they had been given any advice about driving. Only two individuals (8%) had been specifically advised to inform the DVLA. The majority of the responders decided whether to drive based upon symptoms and general wellbeing which varied from day to day. Interpretation of the survey did not allow for a correlation between driving, symptoms and medication. Despite specifically asking for a list of their medication no respondents supplied one, perhaps due to the questionnaire's design being too onerous for the cohort.

Conclusion

This cohort often takes medication that can have an effect on their ability to drive safely. The proportion of patients given advice regarding their driving safety, or advised of their responsibility to contact the DVLA, was found to be low. Consequently, the authors have developed an information leaflet for patients who have been diagnosed or are receiving treatments that might influence their ability to drive safely. This is targeted at patients commenced on strong opiates or other centrally acting sedative medication within both the inpatient and outpatient settings. We anticipate a future survey examining physician understanding of their responsibilities regarding the driving advice given to patients.
Provision of palliative care services to patients with terminal respiratory disease in the community
Authors: Abdelraham Wedad , Eccles Alison , Elder Jennifer
Published: March 2012

Introduction

The aim of palliative care is to achieve best quality of life possible for terminally ill patients, through holistic assessment and appropriate, timely management of problems where progressive advanced disease is unresponsive to curative treatment. Terminally ill patients form a significant proportion of the acute medical take. Could this warrant extension of palliative care services in the community? Is poor discussion of patients' wishes regarding treatment and end of life care leading to unnecessary hospital admissions?

Aims and Objectives

The aim was to identify the nature and extent of palliative care services available to patients with terminal respiratory disease, both in the community and hospital setting. We also determined if patients' preferences regarding long-term care had been addressed.

Methodology

This was a retrospective study within the Ulster Hospital. Data was collected for deceased patients on the respiratory ward between January and April 2011. These patients were diagnosed with a progressive, incurable disease with a life expectancy <1 year. We identified: inpatient specialist palliative involvement, respiratory team palliative care, preceding community respiratory or palliative team input, preadmission discussions regarding severity of disease and point of care.

Results

Eleven patients with terminal respiratory disease died on the ward. 54.6% received community palliative team review preadmission. 100% received palliative care measures by respiratory staff on admission. 45.4% received specialist palliative care team input. The remaining 55% would have benefited, especially if they had been referred preadmission in the community. Only 30.7% had pre-admission discussion regarding point of care.

Conclusion

Improving management of terminally ill respiratory patients will require a structured multi-disciplinary approach focusing on long-term review and addressing needs within the community by respiratory and palliative care teams and GP. Early discussion regarding disease prognosis and point of care is paramount in upholding patient autonomy and reducing strain on hospital resources.
Innovation in expanding access to children's palliative care in developing countries
Authors: Marston Joan , Downing Julia , Boucher Suzanne
Published: March 2012

Background

A worldwide mapping of palliative care services for children identified only 16% of countries have established paediatric palliative care (PPC) services. Most of these countries are in the developing world. In sub Saharan Africa, where the need is great due to HIV, Tuberculosis and Malaria, only South Africa and Malawi had any PPC services Two projects were initiated to expand access to palliative care services for children, based on education and advocacy, reaching five countries and impacting on development in two others.

Method

A Textbook for Africa was written by PPC practitioners experienced in working with children in developing countries including a UK GP who had worked in Uganda. Using lessons learned in South Africa a Toolkit for development of PPC programmes was compiled. A Multi-professional curriculum was developed and piloted in Tanzania, Uganda and South Africa. This curriculum has also been presented in Malawi, India, Kenya and Zambia. Existing model programmes were identified and strengthened, for clinical placement of students. Further sites have been identified and strengthened for placements. An e-learning module on pain assessment and management, has been developed for further expanding education of professionals. A Virtual PPC training centre, the Baobab website was established. Communication has been initiated with university departments for integration of PPC in undergraduate training.

Results

240 professionals have received PPC training in five countries New programmes have been initiated PPC has been initiated in hospitals Training has expanded to three further countries.

Conclusion

Expansion of PPC services can be achieved through education, advocacy and collaboration even in developing countries