bluuebunny/crossref_metadata_2025 huggingface dataset:
Hospital based palliative care in subSaharan Africa; a 6 month review from Malawi
Authors: Tapsfield Julia , Bates Maya Jane
Published: March 2012

Background

The WHO recognises the importance of palliative care in an African setting. Despite this services are often patchy and inconsistent, and many operate at health centre and/or community level. Few reports from hospital based palliative care services in subSaharan Africa exist in the current literature. As part of its activities Tiyanjane Clinic has been providing hospital based palliative care to patients at Queen Elizabeth Central Hospital, a large government tertiary referral institution, in the Southern region of Malawi since 2003, caring for patients with HIV, cancer and other non-malignant palliative diagnoses.

Methods

A retrospective review of case notes for all in-patients seen by Tiyanjane Clinic over a 6 month period (April–September 2009) was undertaken.

Results

A total of 177 patients were seen, for whom 137 case notes were available (77%). 58% of patients were male, 42% female. The average age of patients was 39.1 years (range 15–92 years). 54% of patients were HIV positive, with 34% on ARV drugs at the time of care. 42% of patients had HIV related diagnoses, including AIDS defining malignancies, 48% had (non-AIDS related) cancers and 9% had other palliative diagnoses. The mean age of patients with HIV related diagnoses was 34 years, for cancer patients it was 48 years. Pain was the most commonly reported symptom (74%), with 56% of patients requiring oral morphine. The mean daily dose of morphine was 30 mg/day (range 9–100 mg). 65% of patients were discharged home, 26% of patients died during admission.

Conclusion

The palliative care population in this setting is relatively young, especially among patients with HIV related diagnoses. HIV and cancer are the main diagnostic groups. Pain is the most commonly reported symptom. Knowledge and experience of prescribing oral morphine is needed in order to provide appropriate assistance to patients.
The use of a modified ‘surprise’ question to identify and recruit dying patients into a research project in an acute hospital setting
Authors: Gibbins Jane , Bloor Sophia , Reid Colette , Burcombe Melanie , McCoubrie Rachel , Forbes Karen
Published: March 2012

Aims

To determine the feasibility of recruiting patients into a study to examine their care as they died in an acute hospital trust.

Methods

The authors performed a prospective mixed-methods observational study of the care given to patients who were dying in hospital. All patients on five study wards were screened on admission using the question, ‘Is this patient so unwell you feel they could die on this admission?’ If the answer was ‘yes’ the patient (and/or family) was approached to give prior consent to being included in the study ‘should they become more unwell’. We calculated the sensitivity and specificity of the screening question and the proportion of patients providing consent.

Results

Over 2 years, 6703 patients were screened; staff answered ‘yes’ to the screening question for 327 patients (5%). The screening question had a sensitivity of 57% and a specificity of 98%. Prior consent (23) or relative assent (94) was obtained for 117 (36%) of these patients. 70 died within the study. Only 25 (7%) patients were considered too distressed to approach and only 17 (5%) declined to participate. Other reasons for non-participation included patient improvement (53), death very soon after screening (45) and logistical reasons for example, patient moved to a non-study ward.

Conclusion

To our knowledge prior consent for research during the dying process has not been used before within an acute trust. While a large number of patients were screened, our screening question was helpful in identifying patients who could die during an admission. It was possible to gain consent from about a third of these patients, or assent from their relatives, for inclusion in a study to examine their end-of-life care.
Supporting staff wellbeing within the MND team
Authors: Powell Barbara
Published: March 2012

Background

Caring for patients with MND is an emotional intense area of care. Little attention has been paid to the needs of staff for support and other ways to avoid stress and burnout. Phase 1: Assessing the need A questionnaire was sent to all members of the care team, including the core MDT, who support patients and carers in the outpatient clinic, in the community, in hospice IPU and day unit. (46 responses) The questionnaire sought comment on the difficulties of caring for people with MND, the perceived need for support of some sort and the response to suggested types of support. Phase 2: Acting on the findings. Two actions are underway: First an education and staff development task group has been brought together to develop and appropriate action plan. Secondly we have now had three out of four TIME OUT sessions for the core MDT. Each 3 h session has had two parts: a reflection of patients who have died and a focus on personal wellbeing. An after death analysis tool has evolved to provide key information to assist reflection on the care we have provided. Four different approaches were chosen to focus on personal wellbeing, each having different facilitators; • Mindfulness • Laughing Yoga • Expressive Art • Soul Space Phase 3: Conclusion: Feedback has been encouraged after each session. Overall evaluation of the usefulness and benefits of the TIME OUT program will take place after session four (November 2011).
Stress and burnout – a novel approach to an age old problem
Authors: Salt Susan , Watt Carolyn , Matty Rosalind
Published: March 2012

Background

In a fast changing and unpredictable speciality stress related issues are increasingly common resulting in higher sickness levels and poor performance. There are many courses available for managing stress but none aimed at palliative care. Recognising that attending courses is often problematic we devised a day around exploring the issue to see this may help individuals be more aware of stress and how to manage it for themselves and in their teams.

Method

A study day was devised for professionals to look at the underlying mechanisms of stress from psychological factors to the impact of organisational structures and team dynamics. It explores what may tip stress into burnout. There was guidance on ways individuals could identify their stress and manage it more effectively. The facilitators came from a variety of backgrounds including from the civil service. The day consisted of lectures, workshops, sharing of own experiences and discussion. This culminated in all the delegates engaging in a creative task of building a space in a box to hold what was most precious to them. (An outline of the day will be shown on the poster).

Results

18 delegates attended the day and there were 8 contributors who also joined in the sessions they were not leading. The evaluation of the day was overwhelmingly positive. People appreciated being able to share their stress as well as identifying possible precipitating factors. A number commented on being with people from other organisations and learning from each other.

Conclusion

All the delegates would recommend the day to their colleagues, all felt that they have been given ways to identify and manage stress. What impact this had in the long term is unknown. However, the day is easily reproducible and a cost effective way to at least raise awareness of the issue.
Experience of designing a new drug chart for hospice inpatient unit
Authors: Cordle Janet , Aslett Michelle , Buttery Sue , Mobey Sue
Published: March 2012

Medication for hospice inpatients is prescribed by doctors, dispensed by pharmacists and administered by nurses. A clearly designed drug chart is central to this process. Changing the drug chart needs careful management, to avoid staff discontent and procedural errors. Improvements were required to the design of the drug chart at the Marie Curie Hospice, Solihull, which was identified as being difficult to work with. The aim was to design a new drug chart, which was clear and user-friendly for the clinical team, and which would reduce error. A drug chart working group was established in September 2009, consisting of a pharmacist, two nurses and a doctor. Issues for improvement were identified by means of a staff questionnaire. It was suggested that the spaces for writing controlled drug prescriptions were too scattered, the syringe-driver section was unclear, printed ‘as required’ prescriptions were illogically arranged, and there were too many separate sheets of paper for fluid and warfarin prescriptions. Allergy warnings did not stand out, and insufficient space meant that patients frequently needed two charts. The best features were taken from a number of hospice drug charts, and combined to reflect these issues. Several prototypes were evaluated, and the final version was tested over a 3 month period. In September 2011, the new drug chart was launched. The process of implementation of the newly designed drug chart has led to a user-friendly clinical tool. Three months into its establishment on the inpatient unit, feedback has been constructive and positive. On-going audit of the implementation of the newly designed drug chart will be carried out.
Improving nursing handover in a specialist palliative care unit
Authors: Smith Louise , Gale Sue , Glynn Jayne , Tank Shila , Newberry Leanne , Graham Mel
Published: March 2012

Background

Nursing handover plays a pivotal role in the continuity of patient care. Having recognised limitations in their own handovers, nurses in a 16-bed inpatient unit embarked on a multi-phased project aimed at redressing problems.

Aims

To identify Healthcare Professionals' (HCPs) opinions about their handovers, gain a better understanding of the impeding factors and identify opportunities for improvement.

Methods

Quantitative and qualitative data were collected via observation, survey and audit. A survey was undertaken in Phase 1 to identify HCPs' beliefs, preferences and ideas on how their handover could be improved. Phase 2 comprised an audit and assessment of handover structure and content. Based on emergent themes contemporaneous changes to practice were made.

Findings

Phase 1 shows that 91% of respondents said handover should not exceed 30 min, 70% wanted clarity on what information should be included/excluded, 74% wanted a dedicated ‘question time’ to avoid verbal interruptions. Respondents also wanted to introduce deterrents to reduce staff lateness, physical interruptions and utilise a preprinted pro-forma. Guidelines were developed and audited. By the end of Phase 2 the duration of handover had halved to 20 min. Staff lateness and interruptions had significantly reduced. Use of the pro-forma became standard practice as it facilitated the delivery and recording of pertinent patient information and reduced note-taking. The naming of drugs (+/- dose) ceased as inaccuracies were common. However, key patient information was frequently omitted and factual errors occurred for varying reasons including; inaccurate source documents, illegible writing, and poor communication.

Conclusion

A high level of adherence to the guidelines was achieved, duration halved and handover was more succinct, structured and patient focused. The main emergent theme related to the quality of the information given and this is subject to further enquiry.
Evaluation of the specialist palliative care team ‘a colleagues perspective’
Authors: Steele Emma
Published: March 2012

Background

Following the move of two hospitals into one large new hospital Queen Elizabeth Hospital, Birmingham the author was interested to reflect on the service Specialist Palliative Care Team provided for patients, carers and staff throughout the acute setting.

Aims

The author proposed to collect views from referring staff to evaluate the work of the Specialist Palliative Care Team, to ascertain how accessible and effective the team are and main reasons for referral. The author also aimed to determine if the team is visible within clinical areas and look for areas of improvement and guidance for future working.

Method

The author devised a set of questions designed to explore the opinions that health professional colleagues working within the Trust had about the Specialist Palliative Care Team. The author handed out five questionnaires to thirty clinical areas and asked any clinical staff to complete.

Results

The analysis of the survey suggests that the Specialist Palliative Care Team does provide a good service and supports staff and patients. The team members generally respond to a referral within an appropriate timescale and recognise the referring health professionals skills. 89% of respondents felt that the team could provide more education and many suggested that the service could be extended to 7 days a week. 18 members of staff felt the teams communication skills were ‘satisfactory’ and 7% answered ‘poor’.

Conclusion

A number of themes arose for the Specialist Palliative Care Team to consider and discuss including provision of education, communication skills, extending the service and raising the teams profile.
Development of a screening and referral process for occupational therapy (OT) intervention with chemotherapy day unit patients
Authors: Thompson Carole
Published: March 2012

Background

Many patients referred to OT in the final stage of the cancer pathway report long standing functional difficulties which could have been addressed earlier in the treatment pathway. Rehabilitation is well established in conditions such as cardiac and stroke diseases and needs to be for cancer. (National Cancer Action Team 2009). Timely referral to OT can allow more time to plan appropriate support. (National End of Life Care Programme 2011) This project is devised to try and reach these patients in a timely way.

Aims

To develop a screening and referral process for OT intervention with patients referred for chemotherapy.

Methods

A screening tool was provided by the OT to the chemotherapy nurses. The nurses completed the tool with each new patient from 1 January 2011 and forwarded the completed proforma to the OT. All proformas recorded ‘yes’ or ‘no’ to the suggestion of OT referral. Proformas marked ‘yes’ were allocated within the OT team for assessment. Proformas marked ‘no’ were recorded.

Results

Results were analysed after the first 50 patients had been screened. 23 were referred for assessment by OT. 27 were not referred. Five of the patients not referred by the chemotherapy nurses were referred to the palliative care OT team by other agencies further down the cancer pathway.

Conclusion

56% of patients referred for treatment in chemotherapy day unit benefited from intervention by OT. The screening tool used by the chemotherapy nurses was not sensitive enough to identify all patients in need of OT.
Reliability and validity of a thai version of the edmonton symptom assessment system (ESAS – Thai)
Authors: Chinda Montharat , Jaturapatporn Darin , Kirshen Albert J , Udomsubpayakul Umaporn
Published: March 2012

Background

The Edmonton Symptom Assessment Scale (ESAS), created by the Edmonton Group in 1991, is an instrument assessing symptom control commonly used in palliative care. It asks patients to rate nine items on an eleven-point numeric rating scales.

Objective

The aim of this study was to translate the ESAS to Thai and validate its final version with transcultural adaptation for Thai palliative care patients. The original ESAS was translated into Thai with the Edmonton group`s permission. The translation process followed the cross-cultural adaptation of self-report measures` standard guidelines, including forward translation, synthesis of the translation, back translation, cross-cultural adaptation and pre-testing.

Methods

This cross-sectional study was first undertaken with 44 end-stage cancer patients in the inpatient setting, which led to the final version. The reliability and validity of the final version, with a sample of 37 end-stage cancer patients, was then examined in the out-patient department at Ramathibodi hospital. The face validity was evaluated through patient interviews, using guide questions. The internal-consistency reliability was calculated by using SPSS program.

Results

91.8% of patients declared that the ESAS-Thai questionnaire was generally clear. It yielded a Cronbach's α of 0.7458 in the inpatient setting. After modifying the words ‘appetite’ and ‘well-being,’ 37 cancer patients, who were cared for by the Departments of Medicine, Surgery, Gynaecology and Otolaryngology, self-administered the questionnaire in the out-patient department. The mean age was 52.2 (10.8) with a 0.8904 Cronbach's α in the validation sample.

Conclusion

After the translation and cross-cultural adaptation, the Thai version of the ESAS achieved good levels of face validity and internal-consistency reliability. It is now available as a patient-administered instrument to evaluate symptoms among palliative care patients in Thailand.
Community day care at hospice Africa Uganda
Authors: Irumba Lisa Christine , Evelyn Octivia
Published: March 2012

Introduction

Palliative care is an approach that improves quality of life of patients and their families facing problems associated with life threatening illness, through prevention and relief of suffering by means of early identification and careful assessment and treatment of pain and other problems (WHO Geneva 2004) In Uganda, at Hospice Africa Uganda for years there has been a site day care but with time there was an overwhelming number of patients turn up on that day which is a Tuesday. After realising that there many patients from the same catchment area, a community day care was started in 2007 to provide palliative care to the patients and their families in a place that is closer to their community. Community volunteers helped identify the place. These have been trained in managing the terminally ill with Cancer and or HIV/AIDS in the community.

Problem Statement

There was lack of transport by the patients, communities lacked trained health workers especially in palliative care, patients had no main physical carers especially during the day so they are normally left alone at home, sad and quiet.

Conclusion

The day care has been a success as the patients turn up is good, and now there is more awareness in the community about palliative care. The patients are able to express themselves and share experiences which helps them gain more knowledge, as well as fight stigma among themselves.
Acute oncology and palliative care: two sides of the same coin?
Authors: O'Doherty Catherine , Quinn Sharon , Gibson Jackie
Published: March 2012

The aim of the acute oncology service is to provide a systematic approach to dealing with cancer related emergencies in order to optimise the care of patients presenting to hospital potentially suffering from the acute complications of cancer treatment or from emergencies caused by the disease process itself. While for cancer centres this service is perhaps most logically placed within the oncology department, alignment of the service in trusts without oncology services is possibly less clear. The vast majority of these organisations have, however, a specialist palliative care team who have clinical contact with most patients admitted with complications of cancer or its treatment and who are already familiar with managing many of the clinical conditions that fall within the remit of acute oncology. The aim of this pilot project was to establish an acute oncology service model within a teaching district general hospital which has on-site palliative care and haematology services but is not a cancer centre. The service commenced in autumn 2011 and comprised several elements: (1) the acute oncology team chaired by the consultant in palliative medicine as trust acute oncology lead (2) the acute oncology assessment service staffed by palliative care clinical nurse specialists with medical support from oncologists based at the local cancer centre (3) fast track referrals for patients needing rapid access into clinics for diagnostic or review purposes facilitated by the acute oncology administrative support, an extended role for the hospital palliative care team administrative support (4) audit, to quantitatively and qualitatively assess the service (5) education, to train acute medical and nursing staff in the use of the acute oncology service. In conclusion, an acute oncology service can be placed successfully within a specialist palliative care team with cancer expertise in trusts that do not have oncology services which are based on-site.
Impact of availability of community-based services at the end of life on preferred place of care
Authors: Wenham Sarah , Naylor Caroline , Huttley Julie
Published: March 2012

Background

It is well known that approximately 70% people in the UK have expressed a wish to die at home. Currently only about 20% do so, often due to inadequate provision of care at home. There is a strong strategic drive to develop community-based services to narrow this discrepancy between preference and reality. Understanding the personal experience of patients and carers is essential to ensure provision of patient-centred services that meet their needs at the end of life.

Aim

To determine how the views of patients and carers regarding preferred place of care (PPC) for end of life care differs depending on the level of health and social support available to them at home.

Method

A short six question survey was distributed to all patients and carers accessing an integrated Specialist Palliative Care service in the North West of England during 1 week. The patient's Specialist Palliative Care key worker followed up any issues that arose from completing the survey.

Results

The results will present and discuss the views of service users with regards to: • the PPC of patients and carers given their current level of support at home • patients and carers wishes for community-based services in an ideal world • how the PPC of patients and carers wishes would change if this ideal support were available • patients and carers top three priorities for care in the last weeks and days of life.

Conclusion

This survey has identified how patients and carers wishes and preferences for end of life care change depending on the level of support they receive at home. Strategies will be discussed as to how these views could have been incorporated into the redesign of generalist and specialist palliative care services locally.
Face value? Can a face-to-face specialist palliative care team at weekends add value to a tertiary centre?
Authors: Noble Agnes , Coackley Alison , Griffiths Ann , Howarth Susan
Published: March 2012

Background

Current NICE Guidelines recommend that acute hospitals should provide access to face to face specialist palliative care assessments, 9 am–5 pm, 7 days per week. Continuity of specialist palliative care input is also highlighted in the End of Life Care Strategy. Tertiary cancer centres are often considered to have higher levels of palliative care skills among medical and nursing staff. The impact/need of a 7 day week specialist palliative care service is unclear. Clatterbridge Centre for Oncology, a tertiary cancer centre, has provided a 7-day service by Clinical Nurses Specialists (CNS) since April 2011.

Aim

To evaluate the impact of 7 day face-to-face access to specialist palliative care, and to explore how the service is valued and used by oncology staff.

Method

A questionnaire was sent to 120 medical and nursing staff.

Results

The response rate was 48%.Two-thirds of staff had used the service, with 95% finding it very helpful. Pain management was the most common reason for requesting advice (35 occasions). Further common reasons for referral included opioid toxicity, agitation and care of dying patients. Other reasons included chest secretions, vomiting, psychological/spiritual care, and family/carer support. The service was used 1–5 times by 80% of staff, and 6–10 times by 11% of staff. However, 6% of staff used the service on more than 10 occasions. All staff found the CNSs to be accessible (very=88%, quite=12%). The service was considered to be very important or important by 96% of staff. Qualitative information demonstrated that the service was seen as crucial, excellent and was highly valued.

Conclusion

This survey demonstrated the need for the service in a regional oncology centre and that it was valued by both medical and nursing staff. The survey also provided information for areas requiring further educational input.
Primary care experience of community specialist palliative care
Authors: Ackroyd Rajeena , Duffy James , Sheils Rachel
Published: March 2012

Background

Community specialist palliative care is an important part of a specialist palliative care service, but it is useful to evaluate what primary care professionals think of the current service

Method

In October 2010, a questionnaire was sent out to all General practitioners and community nurses in Calderdale with support from the primary care trust.

Results

252 questionnaires were sent out and 128 replies were received with a response rate of 51%. This included 60 General Practitioners and 68 nurses. 76% GPs and 58 % of nurses said they did refer to the specialist palliative care team. With regard to the overall usefulness of specialist palliative care team involvement on a scale of 1–5(1=poor–5=excellent) the average score was 4.22 83% felt they would refer to the palliative care team on need rather than diagnosis. Only 3% felt that the specialist palliative care team had sometimes been involved inappropriately. With regard to education from the team 56% preferred in house education at their practice rather than evening sessions or study days, with symptom control, non-malignant palliative care and advance care planning being the favoured topics.

Conclusion

The aim of the community specialist palliative care team is to deliver a good quality service for the benefit of the patient. Since for the majority of patients their preferred of place of care and death is home it is important that the team work closely with primary care. Overall the response was very positive and provided useful information on the educational needs for community teams. In light of the changes in primary care and the introduction of GP commissioning in the UK this information supports and provides evidence to commissioners and stakeholders of the importance of specialist palliative care in the community.
A collaborative survey to measure the clinical effectiveness of sixteen specialist palliative care teams
Authors: Rock Charlotte , Penny Kirk , Elizabeth Rees
Published: March 2012

Aim

To survey activities undertaken by specialist palliative care teams within the acute hospital setting and community examining referral response times, complexity of caseload and impact/effectiveness of the SPCTs involvement with patients and carers.

Method

Over a 2 month period practice across sixteen specialist palliative care teams within the Yorkshire sub regional area was surveyed. A data collection tool was modified from one originally developed In Bradford based on STAS and PaCA. Each team collected consecutive data for thirty patients who had had more than one face to face assessment or until the agreed audit time period had elapsed, whichever was the sooner. Data was collated and analysed using Microsoft Access and SNAP by a central team.

Results

Data was collected for 584 patients (315 community teams, 200 hospital teams and 69 dual role teams). Overall 85% of patients had a cancer diagnosis although there were wide variations in numbers of non-malignant referrals by teams. SPCTs demonstrated good response times to referrals despite there being variation in response time standards between locality and setting. Patients presented with multiple needs (average 3 to 4 problems per patient) and 74% had at least one problem scored as moderate to severe. 76% of all moderate to severe physical problem scores and 81% of all moderate to severe psycho-social problem scores were reduced after SPCT intervention (both patient and family).

Conclusion

We have demonstrated the possibility of undertaking a regional survey through collaborative working. The survey has demonstrated the complexity and severity of problems seen in patients presenting to SPCTs and in light of these findings, evidence of need to provide 7 day face to face access to SPC should be reviewed. Common standards for initial response time contact, face to face assessment and discharge should also be agreed across the sub regional teams.
Macmillan development project at the James Cook university hospital
Authors: Walker Jane , Hunter Noeleen , Harris Andrea , Nicholson Alexander
Published: March 2012

Background

National initiatives increase demand for health professionals with palliative care skills to improve patient experience, enhance patient quality outcomes and increase job satisfaction for staff working with complex clinical cases. Failure to recruit into a vacancy within the Trust's Specialist Palliative Care Team (SPCT) highlighted weaknesses in succession planning and poor development of skills within nursing establishment.

Aims

To increase palliative and end of life care expertise in the nursing establishment. To improve education of peers To support the support governance agenda of palliative and end of life care including To support implementation of local and national guidelines.

Method

Funding from Macmillan Cancer Support enabled recruitment for 2 years at a Band 6 level providing six possible 4-month secondments (‘support sister’) within the SPCT. Carefully structured training programmes were devised based on secondees' existing skills and linked to the KSF. Learning objectives included • Increased knowledge of pain and symptom guidelines • Improved understanding of referral to SPCT • Improved liaison with community services • Increased confidence in use of end of life care pathway and negotiating preferred place of care.

Outcomes

Three nurses have completed secondments and all reported improved knowledge and skills. Two are now working in the SPCT, one as Macmillan Discharge Sister and one as Palliative Care Support Sister covering a colleague's reduced hours.

Conclusion

The programme is on-going. While the first participants' reports of increased knowledge and confidence are encouraging, we plan assessment of impact back in the usual clinical team in the second phase of secondments. The project has supported recruitment to vacancies in the SPCT. The next phase will offer two 6-month opportunities since feedback indicates 4 months was slightly too short to consolidate all new learning.
Breaking bad news to people with learning disabilities
Authors: Tuffrey-Wijne Irene
Published: March 2012

Introduction

Current models for breaking bad news are inadequate in meeting the needs of people with learning disabilities (LD). People with LD are often not told of a life-limiting diagnosis. The task of breaking bad news is often left to carers who are poorly prepared and supported to cope with this.

Aims

To explore how people with LD understand and communicate about illness. To explore the experiences and preferences of people with LD, families and professionals around breaking bad news. To identify the factors that affect breaking bad news to people with LD.

Methods

109 participants took part in nine one-to-one interviews and 13 focus groups (including three on-line groups) across England. Participants included people with LD (21), family carers (28), LD professionals (26), general health professionals (33) including cancer and palliative care nurse specialists and physicians (GPs and palliative care consultants).

Results

People with LD have wide-ranging views about whether and how they want to be told bad news. Both LD and healthcare professionals lack confidence in communicating bad news to people with LD. Many family carers want to protect people with LD from bad news. Bad news should be given in chunks, depending on the person's abilities and needs. All those around the person with LD can and should contribute to this. Most people with LD make sense of bad news within their social context, rather than in a doctor's office.

Discussion

Rather than ‘breaking bad news’, the key is to help someone understand and cope with a changing situation. This is a gradual process. A new model for breaking bad news to people with LD has been produced and will be presented as a poster.
Predicting prognosis: experience of a tertiary referral cancer centre end-of-life care service
Authors: Boyle Leanne , Smith Clare , Stevens Anna-Marie , Riley Julia
Published: March 2012

Background

The UK End-of-Life Care Strategy advocates providing choice for terminally ill patients. People want to die at home however 58% of people die in hospital. The Royal Marsden Hospital introduced the Hospital2Home (H2H) Service to bridge the gap for patients who are no longer receiving anticancer treatment by conducting a community based case conference. The aim to facilitate patient choice by encouraging participation in advanced planning. One barrier to planning at the end-of-life is the difficulty in predicting prognosis.

Aim

This audit examines the accuracy of the clinically predicted prognosis in patients referred to the H2H service.

Method

This was a retrospective audit analysing data collected in the routine clinical service. Patients referred to the service are assigned a predicted GSF prognostic indicator (A=Years, B=Months, C=Weeks or D=Days). This was compared to survival.

Results

308 patients have had a H2H case conference, 270 have now died. The median overall survival is 29 days (min 1, max 653). The accuracy of predicting prognosis per group is: • Group D (Days): 8 patients were given a prognosis of days. 6/8 (75%) died within days. • Group C (Weeks): 132 patients were given a prognosis of weeks. 60/132 (45.5%) died in weeks, 42/132 (31.8%) in months and 30/132 (22.7%) in days. • Group B (Months):122 patients were given a prognosis of months. 79/122 (64.8%) died in months, 11/122 (9.0%) in days, 30/122 (24.6%) in weeks and 2/122 (1.6%) survived over 1 year. • 8 patient's data missing. Overall clinicians were accurate in 53.7% of cases, over optimistic in 26.3% and under estimate prognosis in 17%.

Conclusion

Prognostication is difficult. It is understandable that professionals have concerns about predicting prognosis. If anything we overestimate. Therefore if patients are to be told prognosis then the uncertainties around this prediction should be clearly explained.
Role of community volunteer worker in a resource limited setting
Authors: Nazziwa Octivia
Published: March 2012

Introduction

Community Volunteer workers are important and unique means of reaching vulnerable population and giving basic palliative care at the grassroots community level. While others create awareness about palliative care and HIV/AIDS, mobilisation of community among others.

Project Description

Community volunteers were identified and empowered through training and support care in Hospice Africa Uganda, The project started in 2002 and continued up to date, in the three Hospice Model sites, the main aim is to identify patients with pain and symptoms, and other or bedridden due to advanced disease and referred for palliative care and also they provide care.

Conclusion

Training and development programs are the best means of fulfilment to suitable, affordable and accessible palliative care services in the subSaharan Africa countries.
Hospital specialist palliative care units – an innovative model delivering cost-effective choice?
Authors: Paes Paul , Grogan Eleanor , O'Neill Cate , Peel Tim
Published: March 2012

Background

The End of Life Strategy makes clear the importance of patient choice. The subsequent drive towards community end of life care masks the reality that even in the best performing areas, over 40% of people will continue to die in hospital. Patient's preferences change as death approaches, with the popularity of hospices significantly increasing. This paper describes one approach by a NHS trust seeking to improve the delivery of palliative and end of life care. The trust made a strategic decision, alongside community initiatives, to invest in a 19 bedded hospital palliative care unit.

Aim

To examine the effectiveness of a hospital palliative care unit.

Methods

The effectiveness of the unit was measured in terms of patient statistics, complexity and quality of care.

Results

The average length of stay was 13 days, proportion of patients who died 62% and occupancy running over 80%. Patient experience data demonstrates high levels of satisfaction, especially in the domains of pain control, respect and dignity, doctors and nurses. Patients were found to have a poorer performance status and require non-oral drugs than a nearby hospice. Staff satisfaction was high. Overall trust performance in Liverpool Care Pathway measures also improved over this time.

Conclusion

The unit successfully improved the general dissatisfaction with hospital palliative and end of life care. Positive patient/family feedback and high usage demonstrated that this model could achieve 3 goals: -a better level of palliative care for patients than can be delivered in non-palliative care environments -a cost-effective model: the costs were the same as other medical wards -patient choice. The number of patients who died in a palliative care setting raised the proportion of patients dying in a specialist palliative care environment to the highest in the country. A second unit will open shortly.
Current end of life care practices in an acute hospital trust – important lessons
Authors: Frame Karen , Ring Fiona , Howard Diana , Urch Catherine
Published: March 2012

Background

Advanced care planning (ACP), communication surrounding dying, use of end of life (EOL) care pathways and achievement of preferred place of care (PPC) and death (PPD) are key components of quality EOL care. A baseline audit of current practice across 3 London acute hospital sites was carried out in 2010.

Methods

Retrospective case note audit of 163 consecutive adult patient deaths (excluding dead on arrival). Data extracted and analysed using Microsoft excel.

Results

Mean age 73.8 years (22–99), mean admission 19.2 days (0 – 120). Commonest reason for admission was sepsis 45 (28%), however 79 (48%) of patients had more than one significant underlying medical condition 34 (21%) had >2. 53 (33%) had underlying malignancy. 143 (88%) had DNAR orders, 1 patient had an advanced decision to refuse treatment. Ceiling of intervention documented in 94 (58%). 72 (45%) had no documentation of communication with carers, of these 51 (70%) had DNAR orders. 39 (24%) deaths were on the LCP, mean length of time on LCP 48 h (0–11 days). PPC recorded in 25, 22 as part of LCP documentation. When on the LCP, PPC hospital 13 (52%), home 7 (28%), PPD Hospital 11 (44%) Home 3 (12%).

Discussion

Despite limitations of retrospective case note studies this audit is important. Doctors are recognising dying in most patients; signing DNAR and documenting ceiling of intervention. There is evidence of room for improvement in relation to ACP and communication documentation. PPC and PPD was recorded in 15% patients, most on the LCP, representing the dying phase of illness. The PPC data documented differs considerably from national figures PPC hospital 12% home 58%. This may reflect sample size but could represent a change of preference in PPC or PPD in very ill patients or reflect conversations being left too late in patients already on the LCP. It is an important finding needing replication and further investigation.
Sexuality at end of life: the silent bedfellow
Authors: Taylor Bridget
Published: March 2012

Background

Sexuality is a holistic concept that includes physical, psychological and social aspects of people's well-being. As the aim of palliative care includes supporting patients to live as actively as possible until death, as well as supporting those that are significant to them, it would seem reasonable to expect that sexuality would be included. However, what is not clear is whether sexuality continues to be important for people in the UK who are dying.

Aim

To understand the experiences of patients and partners of patients living with a life-limiting illness in relation to sexuality and intimacy.

Method

This qualitative study used a Heideggerian hermeneutic methodology. One-to-one interviews were conducted with 27 patients and 14 partners of patients who had either motor neurone disease or terminal cancer. Each person was interviewed twice and couples were interviewed separately. Audio-recorded data were analysed using Diekelmann and Ironside's seven-stage process to uncover shared meanings. This iterative process is fundamental to Heidegger's hermeneutic circle of interpretation.

Findings

This paper presents one of the themes, ‘the silent bedfellow’. Participants described times ‘when words fail’ and they experienced ‘disconnecting’ within their coupled relationship. In contrast, ‘when words speak’ brought about ‘connecting’, even though this was not always in ways that had been expected. It was rare for people to be given opportunities to discuss their fears or concerns about sexuality with palliative care professionals. Participants gave practical suggestions for ways that professionals can broach this aspect of people's relationships.

Conclusions

Palliative care professionals who support holistic care and promote quality of life have a role in providing opportunities for discussing these issues with patients and their partners.
Evaluation of community palliative clinical nurse led clinic
Authors: Cobb Ann-Marie , Peplow Karen , Shevlin Breeda , Waterman David
Published: March 2012

Background

The Department of Health End of Life Care Strategy (2008) recommends the delivery of high quality and accessible specialist palliative care. The Quality, Innovation, Prevention and Productivity (QIPP) programme highlights that patients should have access to services that our personalised, compassionate, effective and efficient. These drivers have led to a service improvement in our locality (pop. 300,000) with the development of a bi-monthly afternoon community clinical nurse specialist led palliative clinic. Aims: The aim of this study was to evaluate patient experiences / satisfaction when attending the clinic. There was also a review of the clinic impact on overall savings in travel time and mileage.

Method

Over a 2 month period, all patients attending the clinic were offered an opportunity to evaluate the clinic using a structured electronic questionnaire. The questionnaire focused on contentment with the quality, timeliness and location of the services received. Nine months of data was also collated regarding mileage costs and travel time savings.

Results

All nine individual clinic attendees, over the evaluation period, completed the questionnaire. All described that they were listened to; given the time they required and received clear communication. Eight felt the clinic was the appropriate location for their assessment. The service perspective is that the clinic also provides an ideal setting for patients to receive an appropriate introduction to the service. Over eighteen clinic sessions, 28 clinical assessments occurred, which provided more capacity than would have been possible in their home environment. The clinic has saved 18 h of travel time alongside a travel cost reduction of two hundred and ninety miles.

Conclusion

This pilot service improvement fulfilled the patient's needs, whist working within current resources of our service. A more in-depth research study is planned to explore this area further.
A survey of patients with palliative needs on an acute medical admissions unit
Authors: Quibell Rachel , Armstrong Leonie , Jaafar Ahmed , Muir Michelle , Price Ashley , Woolley Sara
Published: March 2012

Aims

To identify any current issues for patients with palliative needs being admitted to an acute medical admissions unit To inform and prioritise the work of the Specialist Palliative Care Team (SPCT) for emergency medical admissions. To map the pathway for patients with palliative and end of life care needs. This work was prompted by a Marie Curie Delivering Choice Programme report1.

Methods

Two week Pilot Survey followed by a 6 month CNS led Project with data collection. Pilot Survey Patients, with palliative care needs, irrespective of diagnosis were identified by consulting nursing and medical staff and all medical notes each day. Data collected via notes analysis- Demographics GP Reason for admission and any known patient history DNAR Status Discharge Packages of Nursing and Social Care at home Medication Specialist palliative care involvement

Results

From Pilot Survey Themes: Palliative Care Needs in unit. 24 patients identified in 2 weeks 25% were actually referred to SPCT. 3/24 patients commenced on Liverpool Care Pathway for the Dying and died on unit. Out of Hours Need: 62.5% admitted OOH Referral Source: 29% care homes, 50% A&E Documentation and Information: 71% had DNAR documentation in notes 4% were documented as on GP Palliative Care Register 6 month Project data will be available for poster, and this will contain additional information on palliative care needs and symptoms.

Conclusion

There are significant palliative care needs on an acute medical admissions unit. This survey will inform the direction and design of palliative care provision on a busy acute medical admissions unit. It also gives invaluable information regarding the patient pathway prior to admission and after discharge from medical admissions to a base ward.
Audit on NHS fast tract applications: prognostic prediction & preferred place of care/death
Authors: Thirukkumaran Thiru , Subramaniam Siva , de Nogla Sinead , Cawley Declan , Fisher Simon
Published: March 2012

Background

‘NHS fast tract’ enables urgent care allocation to a patient whose primary health need is classified as ‘rapidly deteriorating condition with an increasing level of dependency and approaching end of life care’. The guidance states clearly that life expectancy does not form a part of the eligibility criteria under fast tract route. This approach aims to ensure that the individual in question with get the care they require and this be their preferred place of care and be in place within 48 h.

Aim

To explore the possibility that the fast track process can act as a useful aide memoire when professionals are trying to predict prognosis in individuals with progressive, life limiting conditions.

Methodology

A retrospective case note review as well as fast track documentation within a hospice setting over 3 months.

Results

Fourty-two patients identified who applied for the ‘NHS fast tract’ process with 41 applications approved. In 39/42 (93%) applications a decision was reached within 48 h with the remaining applications getting a decision in 72 h. In terms of accuracy of prediction: 36/42 (86%) died with 12 weeks of approval.28/42 (67%) achieved their preferred place of care (PPoC) and death (PPoD) with 6/42 (14%) not able to have the conversation regarding PPoC/D.

Conclusion

The possibility that the Fast Track process may help clinicians in trying to build an approach in aiding prognostication and facilitating individuals to be cared for and die in their preferred setting is promising. The use of an existing process that can timely facilitate end of life care in individuals with the helpfulness of timelines can only help manage resources that are currently so limited. We aim to use this approach with additional data methods to try and gain further knowledge in best planning end of life care.