bluuebunny/crossref_metadata_2025 huggingface dataset:
MEDICAL HANDOVER IN NORTHAMPTONSHIRE HOSPICES: ROOM FOR IMPROVEMENT?
Authors: George Mariam , Brookfield Sam , Shah Sanjay
Published: February 2014

Background

A rigorous medical handover system in a hospice is essential to ensure patient safety as well as quality and continuity of care especially in the face of changing work patterns of hospice doctors. A General Medical Council survey (2011) highlighted a lack of formal handover arrangements among palliative medicine trainees.

Aim

To review current medical handover system of weekend handover stickers (HSts) and to identify examples of good hospice medical handover practice.

Method

Weekend medical HSts were audited at two Northamptonshire hospices, which share an on-call rota. Feedback from doctors exploring usefulness of HSts was obtained. To identify other hospice medical handover models, literature review, palliative care forums and informal discussions with hospice doctors at regional meetings were used.

Results

Ninety-eight weekend HSts were audited. Background medical details and weekend management plan were recorded in 98% and 93%, respectively. Although HSts were useful, documented information was variable and did not always contain necessary details to inform complex decisions involving life-prolonging and life-sustaining treatments in addition to the psychological, emotional and spiritual factors influencing clinical manifestations of the dying. Occasionally HSts were complimented with poorly documented verbal handovers. The audit highlighted the need for descriptive information to address the question “what to do in the event of deterioration”. Though a few electronic handover systems in other hospices were identified, the common underlying theme was the need for a standardized medical handover system.

Conclusion

Handover does happen among hospice doctors, albeit in a different format to that of acute medical specialties. Though our weekend handover stickers are used regularly, effective ways to capture information to inform complex decisions need to be identified. The new electronic health record systems being rolled out in Northamptonshire will need to incorporate the facility to extract such information.
HANDOVER OF PALLIATIVE PATIENTS TO OUT OF HOURS CARE
Authors: Murray-Brown Fay
Published: February 2014

Background

Cancer patients spend 90% of the last year of their life at home. At least two thirds of the working week is out of hours. The Gold Standards Framework aims to optimise care for patients nearing the end of their life in the community, with consistent care coordinated effectively across all settings and delivered by practitioners who are aware of the person's medical condition, care plan and preferences.

Aims

This audit aimed to establish, in August 2013, how many of the patients known to the Specialist Palliative Care Team (SPCT) at St Luke's Hospice, Plymouth, were also known to Devon's GP Out of Hours (OOH) coordinator, DDocs, in the form of Special Notes. The standard was set at 85%.

Results

461 patients were known to the SPCT, but 79 were excluded as were not end of life. Of 382 patients remaining, 90% had cancer and 10% had MND or chronic diseases. 290 patients (76%) had Special Notes. Smaller numbers had further information highlighted, including Diagnosis (72%), Resuscitation Status (54%) and Advance Care Plans (9%). 235 patients (62%) had contacted DDocs in the last 6 months, almost all for a palliative problem.

Conclusions

The audit standard of 85% was not met, however, this is an improvement from 2011, when 63% had Special Notes, and is better than other counties, i.e. Dorset, where only 22% of patients were flagged in 2011. A Dorset GP survey revealed that the majority of GPs thought they had flagged patients to OOH, yet only 22% had. A survey of Devon GPs is underway to establish attitudes to handover of patients to OOH, and identify why Devon is better, though not meeting the standard. One hypothesis is that GP cooperatives are run differently across counties, with Devon GP practices taking a more active role in OOH care.
RELEVANT, RESPONSIVE AND REALLY USEFUL
Authors: Howarth Susan , Coackley Alison , Griffiths Ann , Noble Agnes , Hampton-Mathews Julian , Foulkes Margaret , Lee Heather
Published: February 2014

Introduction

Nurse-led clinics are recognised as an important part of health care provision as service demand across the UK continues to escalate. The End of life Care Strategy recommended that all palliative care patients should have access to rapid specialist advice and clinical assessment.

Cancer centres cover wide geographical areas. Patients attending for treatment are often unable to access their local palliative care services. This can lead to inadequate assessment/management of physical, psycho-social and spiritual problems.

Aims

1. To ensure that patients attending for cancer treatment have access to appropriate, timely specialist palliative care

2. To improve liaison with other healthcare professionals and provide support/information.

3. To ensure seamless co-ordinated care by excellent communication with local palliative care teams.

Method

A twice weekly nurse-led palliative care clinic was set up in a cancer centre with clear referral criteria. Joint reviews with nursing/ medical colleagues were encouraged. There was input available from a Consultant in Palliative Medicine. Clinic letters were produced and faxed at the end of each review. Evaluation forms were sent to all healthcare professionals.

Results

Clinics run for two hours. 180 patients have been reviewed over 18 months. An increasing number of joint reviews have been undertaken. Flexibility is key as 50% of referrals are seen as emergencies. 93 % were for pain/ symptom control. 70 % for psychological support 30% were for spiritual support. 50% of referrals came from medics, with 50% from clinical nurse specialists. The majority of patients were managed as out-patients. 25% required admission to the Unit. A full breakdown of clinic activity and outcomes will be available in the final report.

Conclusion

Nurse-led clinics are an excellent way of delivering care to patients attending a tertiary cancer centre. Improved joint working and creation of educational opportunities are also significant benefits of the service.
ONE STEP AT A TIME, THEN GO FOR IT! IMPLEMENTING A 16-WEEK WELL-BEING PROGRAMME IN A HOSPICE DAY THERAPY UNIT
Authors: Capewell Claire , Green Debra , Salt Susan
Published: February 2014

Background

In common with many other hospices, our Day Therapy Unit has been changing from a service used largely by a ‘long-term’ cohort of patients who may have attended for months or years. Over an initial period of around 2 years, work was done to facilitate the discharge of stable patients and to gradually change the ethos of the Day Therapy Unit in moving towards a 16- week, goal focussed attendance.

Aims

Building on these changes our aim was to design a 16-week rolling programme, which would help patients to meet their goals and to provide strategies for maintaining well-being.

Results

We searched the notes of current patients to gain understanding of the most common reasons for attending Day Therapy Unit. The prominent themes were: to counter social isolation, provide emotional/psychological support and to improve mobility and pain.

A programme was devised covering 8 sessions over 16 weeks. Topics were chosen based on the domains in the ‘Holistic common assessment’ document. The domains are: physical well-being, social and occupational well-being, psychological well-being with spiritual well-being and life goals. Titles of our sessions include ‘Bucket list and beyond’, ‘Controlling your pain’, ‘Resilience’ and ‘There is life after Day Therapy Unit’. Sessions will promote group discussion and individual reflection. Patients will be provided with written material to accompany the sessions. Delivery of the programme is truly multi-disciplinary: facilitators are nurses, doctor, physiotherapist, clinical psychologist, social worker, chaplain and counsellor. We continue to offer physiotherapy, complementary therapies and art therapy alongside this new programme.

Our hope is that this programme will enable us to promote a culture of enablement amongst our current patients and to reach larger numbers of patients. Once the programme is established, we intend to investigate whether there is a demonstrable improvement in markers such as Quality of Life.
A SPECIALIST PALLIATIVE CARE SERVICE FOR PARKINSON'S DISEASE: REVIEW OF END OF LIFE OUTCOMES
Authors: Adams Debi , Richfield Edward , Johnson Miriam , Jones Edward , Campbell Colin
Published: February 2014

Background

National guidance supports the need for specialist palliative care (SPC) in Parkinson's disease (PD). Access to SPC remains poor and evidence to support palliative care strategies in PD is scarce.

Innovation

The Scarborough PD SPC service is a collaboration between St Catherine's Hospice and the movement disorder clinic at Scarborough General Hospital. We report on SPC service utilisation and outcomes.

Evaluation

The case-notes of 47 PD patients consecutively referred to SPC (Nov 2010 to May 2013) were retrospectively reviewed (34 male; mean age 77 yrs; range 53 to 99). Hospice services/interventions received included: palliative neurology CNS support (100%); future care planning (60%); day hospice attendance (26%); hospice admission for respite care (21%), symptom management (21%) and care of dying (14%). 23 patients died. Average time to death from referral was 194 days (range 2–753 days) and from diagnosis was 10 years (range 2–25 years). Place of death was known for 22/23 patients: acute hospital bed (13%); hospice (26%); home (13%); care home (34%) and community palliative care bed (8%). Dying was anticipated in 91% of patients (21/23), all of whom had a DNACPR order and an advance care plan or best interest decision. Administration of anti-Parkinson's medication in the dying phase was problematic and rigidity a common symptom, although rarely with signs of distress. Average time from identification of dying to death was 8.3 days (range 2–23 days) compared with 29 hours across all diseases (MCPCI 2012).

Conclusions

People with PD and palliative care needs can benefit from referral to SPC. Rates of death in hospital were reduced and deaths at home/hospice increased compared with UK data (Snell K 2009). The dying phase, although prolonged, can be managed well and choice and comfort at the very end of life are achievable.
DEVELOPMENT OF A HOSPICE REFERRAL PATHWAY FOR PATIENTS WITH ADVANCED INTERSTITIAL LUNG DISEASE
Authors: Powell Barbara , Agrawal Sanjay
Published: February 2014

Background

Recognising the inequalities between the care offered to patients with malignant and non-malignant disease, we looked to improve the care given to patients with advanced respiratory diseases. In order to pilot the service we initially focused on patients with advanced interstitial lung disease (ILD).

Aim

To develop collaborative working practices between the hospice team and the local respiratory physicians to produce a seamless pathway for ILD patients as their condition advances. Such a pathway could be modified to improve the care of patients with other advanced non-malignant respiratory diseases.

Method

An initial audit of patients with advanced ILD admitted to the acute hospital, encompassing the SPICT criteria, allowed us to identify a cohort of patients who had sub-optimal symptom control and might ideally have been cared for in the non-hospital setting. We then developed a pathway in collaboration with the lead ILD physician aimed at earlier identification of such patients via the hospital MDT or clinic setting, to encourage timely referral to the specialist palliative care team.

Results

Identified patients were assessed for non-pharmacological and pharmacological interventions to improve breathlessness mastery and alleviation of other symptoms via the multi-professional team. On-going support and advanced care planning /the development of an emergency health care plan were also encouraged where appropriate. Of the 29 patients referred 6 have subsequently died, 5 in the hospice, one supported at home. 4 further patients have had an in-patient stay for symptom control, 8 have an ACP/EHCP in place. Of those referred, three patients have required hospital admission but none have subsequently died in the acute hospital.

Conclusion

With appropriate collaboration it is possible to develop services to produce a major improvement in the care for patients with advanced non-malignant respiratory disease.
WORKING COLLABORATIVELY TO IMPROVE ACCESS TO SPECIALIST PALLIATIVE CARE FOR PEOPLE WITH END STAGE LUNG DISEASE: AN EXPLORATORY PILOT STUDY
Authors: Thompson Alice , Green Rosalind
Published: February 2014

Background

The need to improve access to specialist palliative care services for people with end stage non-malignant lung disease is well evidenced. The unpredictable disease trajectory however challenges the traditional model of end of life care. The desire to improve access to services for this population locally inspired an exploratory pilot study integrating both specialist palliative care and respiratory medicine.

An existing respiratory out-patient review clinic has been adapted to focus on advance care planning, symptom management and assessment of needs on a monthly basis. Patients with advanced lung disease are invited to the clinic in particular those returning following an episode of non-invasive ventilation for type 2 respiratory failure. The clinic is provided jointly by a Consultant in Respiratory Medicine and a Clinical Nurse Specialist in palliative care.

Aims

To introduce the concept of and facilitate discussions around advance care planning for patients and carers.

To take a pro-active approach to support with emotional and physical needs.

To provide patients with the opportunity to access a member of the specialist palliative care team and referral to appropriate services as needed.

To improve communication with the primary care team.

To explore the needs of patients and the interventions required to support them adequately.

To evaluate whether the model of care is effective for patients and professionals.

Conclusion

Initial feedback is highlighting the benefits of the service to patients, carers and professionals. Both qualitative and quantitative data is being collected throughout the 9 month pilot study. This valuable information will help to inform decisions around the feasibility and effectiveness of the clinic for the future.
ANTICIPATORY PRESCRIBING: COMPARISON OF THE NUMBER OF DISCHARGE PRESCRIPTIONS WITH THE NUMBER OF FAST-TRACK DISCHARGES
Authors: Khoo Grace , Dickman Andrew , Morris Tracey , Montgomery Emma , Whitfield Andrea
Published: February 2014

Background

In September 2012, an anticipatory prescribing policy, the ‘Just in Case Four Core Drugs’ (JiC4CD) was introduced across the healthcare economy after a multidisciplinary group of clinical experts reviewed current practices. The JiC4CD policy seeks to deliver optimal care to patients with palliative illness in the community by:

supporting patient choice if they wish to remain at home

avoiding distress caused by poor access to medicines, by anticipating need

avoiding the distress caused to patients, carers and healthcare staff due to not having the correct medicine readily available and any attendant delays in achieving symptom control

reducing inappropriate admissions

Anticipatory drugs are dispensed for patients thought to be in the last four weeks of life who are being discharged from hospital using the fast-track discharge process. The availability of JiC4CD in the home support proactive symptom control by promoting anticipatory prescribing.

Aims

To identify the number of patients who received JiC4CD upon discharge from Blackpool Victoria Hospital and compare with the number of fast-track discharges.

Method

Electronic discharge prescriptions over a 12-month period were analysed JiC4CD and the figures were compared with the number of fast-track discharges.

Results

A total of 211 discharges for JiC4CD were dispensed by the hospital pharmacy over the 12 month period. There were 227 fast-track discharges during the same period.

Conclusion

The study showed that 93% of fast-track discharges received JiC4CD. Ideally, all patients discharged utilising the fast-track discharge policy should receive JiC4CD. One reason for the discrepancy is the potential for rapid discharges to occur after the hospital pharmacy has closed. This study has ensured a review of hospital practices and procedures.
THE CLINICAL AND STRATEGIC IMPACT OF GENERIC DOCUMENTATION FOR ANTICIPATORY PRESCRIBING AT THE END OF LIFE
Authors: Smith Kathryn , Dickman Andrew , Drinkwater Lisa , Janet Purdie , Atcheson Lynn
Published: February 2014

Background

The End of Life (EoL) Care Strategy (2008) recommends that consistent ‘co-ordination of care’ and ‘delivery of high quality services in all locations’ is essential across a healthcare economy. Due to historical development and redesign of community services within a large healthcare economy in the North West of England, there were three different community policies for anticipatory medication at the EoL and five different prescription and authorisation forms. Collaborative working is essential to develop consistent, high standard EoL care while minimising potential risk in all care settings.

Aim

To assess the clinical impact of generic documentation for ‘Just in Case 4 Core Drugs’ (JiC4CD) anticipatory prescribing at the EoL across a healthcare economy.

Method

A multidisciplinary group of clinical experts from all the key stakeholder organisations reviewed the existing processes and documentation, and an ideal clinical pathway was agreed. A Task and Finish group designed and implemented new documentation in line with this pathway, including:

prescribing guidance

single prescription and authorisation booklet

JiC4CD pack (issued from community, hospital and hospice pharmacies)

audit form

Results

The clinical impact of the JiC4CD booklet and pack was demonstrated with regard to:

EoL symptom control

prescribing and administration clinical incidents

crisis domiciliary visits and unplanned hospital admissions

place of death

carer satisfaction

healthcare professional satisfaction

Facilitating factors and barriers to implementation are discussed.

Conclusion

Single generic documentation for JiC4CD anticipatory medications across a healthcare economy not only has a positive impact on individual patients, but the process also demonstrated benefits of cross-organisational partnership collaboration to achieve ‘high quality care for all adults at the EoL’.
DYING IN HOSPITAL-IS THERE AN UNMET PALLIATIVE CARE NEED FOR PATIENTS WHO DIE WITHIN 48 HOURS OF ADMISSION?
Authors: Bruckner-Holt Caroline , Baker Alice , Aladin Hafiz , Boulstridge Lisa
Published: February 2014

Background

The majority of people in the UK die in hospital and many more die in hospital than are seen by the inpatient specialist palliative care team (SPCT).

Aims

To assess the population of patients who die in hospital and to establish if there are specialist palliative care needs in patients not referred to SPCT.

Methods

We conducted a retrospective case note evaluation and collection of death certificate data of all 109 patients that died at Good Hope Hospital Birmingham in September 2012. We assigned Gold Standards Framework (GSF) prognostic indicator guidance to assess possible palliative care need. We assessed the time of admission to death.

Results

38/109 patients died within 48 hours of their admission and causes of death were from a range of conditions. Patients died in the emergency department or assessment units and had no SPCT involvement – 8 of these patients were known to a community SPCT, but only 1 patient was seen prior to death by the hospital SPCT. 14/38 scored 0 on GSF prognostic indicator guidance criteria (no indication of palliative care need), 15/38 scored 1, 6/38 scored 2, and 3/38 scored 3, suggesting they would benefit from a palliative care approach.

Conclusion

Assessment of palliative care need using the GSF guidance can identify many patients who might benefit from SPCT involvement as they die in hospital. Many patients die within 48 hours of arriving in hospital and emergency, acute medical/surgical physicians do not identify these patients as requiring SPCT involvement. Greater education in assessment of palliative care need for these clinicians may increase referral to SPCT and improve end of life care for this patient population. SPCT will need to alter working practices, including out of hours working, if we are to have a role in the care of this group of patients as they die.
PATIENTS WHO DIE IN HOSPITAL—IS THERE AN UNMET PALLIATIVE CARE NEED?
Authors: Bruckner-Holt Caroline , Baker Alice , Aladin Hafiz , Boulstridge Lisa
Published: February 2014

Background

The majority of people in the UK die in hospital and many more die in hospital than are seen by the inpatient specialist palliative care team (SPCT).

Aims

To assess the population of patients who die in hospital and to establish if there is an unmet specialist palliative care need in patients not referred to the SPCT.

Methods

We conducted a retrospective case note evaluation and collection of death certificate data of all 109 patients that died at Good Hope Hospital Birmingham in September 2012. We assigned Gold Standards Framework (GSF) prognostic indicator criteria to assess possible palliative care need. We assessed differences between the population of patients referred to the SPCT and those that were not.

Results

19/109 patients were seen by SPCT and 19/109 were known to community SPCT. 48/109 patients died <72 hours following admission. 29/109 patients scored 0 on the GSF criteria, with 47/109, 26/109 and 7/109 scoring 1, 2 and 3 respectively. Patients referred to the SPCT scored more highly on GSF criteria than those not referred 1.6+/−0.2 versus 1.0 +/−0.1,p=0.004. The time from admission to death was longer in those referred to SPCT 16 days +/−5.6 versus 8 days +/−1.4 in the group not referred,p=0.04.

Conclusions

According to assessment of GSF prognostic indicator criteria, nearly ¾ patients dying within the hospital meet criteria for palliative care need. Those patients that are referred to SPCT score higher so perhaps constitute a group with more comorbidity and thus identification of need is easier. Time to death in the SPCT group was also longer, suggesting those that do not die ‘quickly’ are identified more readily as having palliative care needs. Increased awareness and education around the importance of assessment of palliative care need amongst clinicians may increase referral to SPCT.
MEASUREMENT FOR IMPROVEMENT: END OF LIFE CARE IN ACUTE HOSPITALS
Authors: Kite Suzanne , Hayes Anita , Pring Andrew , Rees Elizabeth , Verne Julia , Shouls Susanna
Published: February 2014

Background

‘Measurement for improvement (MfI)’ is a structured methodology to develop and use metrics to support effective change management.1 2It differs from measurement for accountability and approaches used in clinical research3for example in its use of statistical process control or run charts.4There is a need to be able to measure the quality of end of life care (eolc) in acute hospitals.5 6There are a number of existing metrics in eolc.7 8 9Selecting the best measures to support transformation is a challenge. The Leeds Teaching Hospitals NHS Trust (LTHT) joined the Transforming End of Life Care in Acute Hospitals Programme launched in September 201110which recommended MfI methodologies.

Aims

To develop an effective and appropriate set of measures that meet the interests of different groups (patients, families, providers and commissioners) applying the measurement for improvement methodology (meeting aims; real time measurement and reporting, and combining outcome, process and balancing measures).

Results

The application of ‘Measurement for improvement’ methodology to the eolc initiatives of the LTHT, and other acute hospitals in the Transform Programme as appropriate, will be presented. The benefits and limitations of existing metrics in the acute hospital setting will be analysed.

Conclusion

Measurement for improvement methodology is a practical methodology with scientific rigour if applied appropriately. Real time measurement supports change in practice. An approach to metrics in this setting will be recommended, for the evaluation of service improvement programmes and to monitor the quality of clinical care. There are known challenges for measurement of eolc in acute hospitals such as the dynamic nature of the patient population, and the crisis nature of hospital admission.
UNCOVERING SHADOWY SECRETS: HOW ULTRASOUND CHANGES HOSPICE CARE
Authors: Jones Tim , Groves Karen
Published: February 2014

Background

Ultrasound identification of abnormal fluid collections is frequently required for patients with advanced disease who have little reserve to spend on investigational procedures. Current patient pathways via hospital radiology departments are exhausting and introduce delays into management which they can ill afford.

Aim

To see whether point of care ultrasound for answering specific clinical questions would improve patient experience whilst reducing delays in appropriate treatment.

Method

Initial level one point of care training of two members of medical staff alongside acquisition of a suitable ultrasound machine from generous local donations was undertaken in 2010.

Results

A detailed retrospective review of 3 years use will be available for the final presentation but the first 30 months use shows that 104 patients underwent 168 point of care scans which were used to locate abnormal intra abdominal, pleural fluid and bladder collections and resulted in 85 subsequent procedures and prevented further investigation or blind procedures in the rest. Other identified abnormalities are detailed in the presentation.

Conclusion

Ultrasound helped to answer a specific clinical question on each occasion of use and allowed for a swiftly crafted, tailored, individual management plan avoiding protracted investigative procedures. Patients reported experiences were positive and staff feel patients receive a more effective and efficient service. This has led to all substantive medical team being trained to level one and consideration of further service development leading to point of care ultrasound in the community.
MIRRORING FAMILY IDENTITY THROUGH DOCUMENTARY FILMMAKING: INNOVATIVE WAYS OF WORKING WITH FAMILIES IN A HOSPICE SETTING
Authors: Haraldsdottir Erna , Hardie Amy , Kendall Marilyn
Published: February 2014

Background

A film artist was resident in a Scottish hospice for a year working with staff, patients and families using and teaching filming and editing skills to produce documentary films.

Method

Qualitative interviews explored patients and family members experience of making a documentary film about aspects of their family lives. 15 interviews were completed, and transcribed verbatim. Thematic analysis was used to analyse data, providing order to the data set and allowing for key themes to emerge and be identified.

Results

12 families made films in collaboration with documentary film artist. These films had various purposes, which were decided in collaboration. Some had the purpose of being ‘legacies’ others were ‘portraits’ allowing the patient to see and take stock of own life story; others were simply ‘play spaces’, where patients could express the parts of themselves that may get submerged in the problem-solving ethos of a clinical setting. Each film mirrored strongly the families' identity.

Patients reported they enjoyed specifically seeing the closeness between the family members and the positive functioning of the family reflected in the film. The legacy aspect of the film is in particular important to patients with young children.

Documentary film goes further than the traditional ‘memory box’ as it captures the day to day life of the family together reflecting the interaction and relationship the patient has with his/her family as well as mirroring the family identity.

Conclusion

Working with a film artist in a hospice has equipped hospice staff with new technical knowledge and a ground-breaking documentary intervention to use with families where one family member is facing the end of life.

Funding

Creative Scotland.
LIVING IN THE SHADOW OF CANCER: THE EXPERIENCE OF FIRST DEGREE RELATIVES OF PATIENTS WITH ADVANCED COLORECTAL CANCER
Authors: Baker Nicola , Dawson Angus , Redwood Sabi , Armour Kathy , Meystre Chantal
Published: February 2014

Background

It is widely accepted that a diagnosis of cancer affects the entire family. However, research has centred on primary caregivers, and little is known about the impact on the wider family. The literature has concentrated on female relatives of breast cancer patients. Studies involving relatives of colorectal cancer patients have focused on their attitudes to screening, or behavioural interventions, and have not attempted to identify their experiences, beliefs or needs.

Aims

To gain an in depth understanding of the experiences, beliefs and needs of first-degree relatives of patients diagnosed with advanced colorectal cancer.

Methods

Semi-structured interviews were conducted with adult children or siblings of patients with advanced colorectal cancer, referred to a palliative care service. Interviews explored their experience of a cancer diagnosis in the family and their beliefs about cancer. Data was transcribed verbatim and analysed qualitatively using a constant comparison method.

Results

5 categories emerged from the data;

▸

1) Emotional burden - The impact of witnessing a loved one with progressive disease was enormous. Relatives described the “shadow” cancer cast over the whole family, and feelings of fear on multiple levels. Emotional challenges were even greater when needing to support several generations within the family.

▸

2) Practical burden, which was high even if they did not have a caring role, or live locally.

▸

3) Changing family roles accompanying the anticipated death of their relative.

▸

4) Feeling “out of the loop” and a need for more information.

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5) Awareness of own risk – Some relatives described an increased sense of their personal risk of cancer, which exacerbated their fears and represented a significant barrier to open communication in the family.

Conclusion

This study highlights the profound impact of advanced colorectal cancer on the wider family, and suggests a role for palliative care in identifying and supporting their unmet needs.
UNDERSTANDING THE BARRIERS TO IDENTIFYING CARERS OF PEOPLE WITH SUPPORTIVE AND PALLIATIVE CARE NEEDS IN PRIMARY CARE
Authors: Carduff Emma , Finucance Anne , Kendall Marilyn , Jarvis Alison , Harrison Nadine , Greenacre Jane , Murray Scott
Published: February 2014

Background

Caring for someone at the end of life can be physically and emotionally demanding. At the same time carers are coming to terms with the imminent loss of the patient. Carers are often ambivalent about their own needs and are reluctant to self-identify as a caregiver in need of support.

Aims

This study set out to explore the barriers to, and strategies for, identifying carers of people at the end of life in primary care, and to understand why carers do not self-identify.

Methods

This study triangulates three sources of data – a review of the care giving literature, a synthesis of data from previous carer research, and focus groups with current and bereaved carers and health professionals.

Results

Barriers were identified in three core categories. 1) Transition into the caring role was seen as a gradual process and carers did not necessarily identify with being a ‘carer’, meaning support was often initiated in response to a crisis with the patient or the carer. 2) As the patient's illness deteriorated, caring was all-encompassing meaning that carers were managing competing demands and prioritised the needs of the patient, often at the expense of their own. 3) The role of the GP in supporting carers was as ambiguous. GPs were perceived to lack knowledge about available services and their reactive, rather than proactive approach, meant carers were less likely to see their needs as legitimate and ask for help.

Conclusions

Encouragingly, health professionals in this study acknowledged the importance of identifying and supporting carers. Strategies to identify and support carers should be commenced early in the illness trajectory to prevent crises and need to be sensitive to the complexities of the primary care context. Primary care teams also need to work together to ensure that carers' needs are legitimised so that they are empowered to self-identify.
ANTICIPATORY CARE PLANNING: UNDERSTANDING THE IMPACT THAT TALKING ABOUT PLANNING FOR FUTURE CARE HAS ON RELATIVES/FRIENDS OF CARE HOME RESIDENTS
Authors: McGlinchey Tamsin , Saltmarsh Philip , Bancroft Rebecca , Mason Stephen , Corcoran Gerard , Ellershaw John
Published: February 2014

Background

Advance Care Planning (ACP) has become increasingly important in terms of its perceived role in improving care planning for people nearing End of Life (EOL). ACP can enable people to die in their place of choice, coordinate care, reduce unnecessary hospital admissions and burdensome interventions. Research is needed to inform our understanding of how ACP works in practice. Accordingly, a two phased study is currently engaged in the Care Home setting, which seeks to:

Develop a consensual process for ACP

Assess the impact that ACP discussions have on all participants; residents, relatives/friends and healthcare professionals.

Findings from phase 1 of the study indicated that existing definitions of ACP are complex, and understanding was varied. A recommendation for this study was that the term Anticipatory Care Planning (AnCP) would be used to describe the planning process. Phase 2 of this project is now underway.

Aim(s)

To examine the lived experience of relative/friends, who have been engaged in conversations about AnCP, for residents living in care homes.

Method(s)

Interpretive phenomenology underpin the research methods employed; In-depth semi-structured interviews with residents (where possible) and relatives/friends of care home residents, are being undertaken using a longitudinal case study design:

Initial interview after first AnCP discussion

Follow up interview(s) at 3 monthly intervals throughout the study period

Post bereavement interview with relative/friends and healthcare professionals.

Results

Qualitative data derived from the interviews will be discussed under the following emerging themes:

Timing and content of discussions

Emotional impact of engaging in discussions

Confidence in care delivery in care home setting

Conclusion(s)

Conclusions will inform the ongoing debate and understanding around the broader concept of Advance Care Planning, and also the impact that these types of discussions may have on residents and their relatives/friends.
PRINCIPLES OF SPIRITUAL CARE IN END-OF-LIFE CARE IN INDIA: A HISTORICAL-CULTURAL INVESTIGATION
Authors: Inbadas Hamilton , Seymour Jane , Narayanasamy Aru
Published: February 2014

Background

Understanding the principles of spiritual care in end-of-life care pertaining to the Indian context is crucial for the development of an appropriate approach to spiritual care for Indian palliative care. The rich and diverse spiritual and cultural traditions around the care of the dying in the country provide useful resources for such a perception.

Aims

This study seeks to examine the features of the care of the dying that were prevalent in the past in South India in order to understand the values and principles of spiritual care in the care of the dying in India.

Methods

Taking a historical-cultural perspective, in-depth oral history interviews were conducted with thirty older adults belonging to different religions and none. Participants were recruited using purposive and snowballing sampling technique from Kanyakumari district, South India.

Results

Several religious and cultural care practices that were customary in the care of the dying and beliefs about good death that prevailed over a couple of decades 40 years ago emerged from the data. ‘Union with the divine’, ‘being at peace’ and ‘preserving dignity’ were the three core principles that were found to be at the heart of these practices and beliefs. All these practices and beliefs were found to have meanings and values attached to them that relate to these core principles.

Conclusions

Care practices around the care of the dying and beliefs about good death are clearly characterised by spiritual beliefs. Perspectives on the present Indian scenario suggest that the above said principles play a vital role in shaping the current understanding of death and ideas of good death. Considerable contextual changes in the Indian society have caused the breakdown of traditional patterns of intergenerational dissemination of these practices and their meanings making these core principles hard to achieve.
THE PERSPECTIVES OF BEREAVED RELATIVES AND CLINCIANS ABOUT SEDATION IN END OF LIFE CARE: INSIGHTS FROM QUALITATIVE CASE STUDIES
Authors: Seymour Jane , Brown Jayne
Published: February 2014

Background

There are few studies which compare the experiences of clinical staff and bereaved relatives about sedation use in end of life care.

Aim

To report aspects of the UNBIASED study (UK, Netherlands and Belgium International Sedation Study), comparing how UK clinicians and bereaved relatives recall the use of sedation in end of life care.

Methods

Qualitative case study design using face to face interviews. Setting: Hospitals, the domestic home, and hospices. Participants: doctors, nurses and bereaved relatives involved in care of cancer patients who received continuous sedation until death. Senior clinical staff identified eligible decedents and then nominated the physicians and nurses most involved in their care; they then used their discretion to invite bereaved relatives to take part, at least three months after the death.

Findings

22 case studies were completed in the UK arm of the project. Seven cases were complete, in that they had perspectives from at least one nurse (n=10), one doctor (n=9) and one relative (n=7). This presentation focuses on these 7 cases. Relatives recalled that gaining control of some patients' symptoms was difficult to achieve and they regretted the time taken to gain this. Clinicians reported that the movement towards continuous sedation unfolded over time with no particular ‘moment’ of decision making. Careful use of medications to control difficult symptoms without making the patient completely unconsciousness was seen as the ideal by both relatives and clinicians. Some relatives and clinicians were concerned about hastening death; some relatives regretted that this was not possible in UK practice. Relatives expressed a range of understandings about how sedative medications worked. Understanding patients' wishes was important for both relatives and clinicians.

Conclusion

Detailed case studies can illuminate difficult areas of practice and provide pointers for practice development. Implications for communication and decision-making practice will be explored.
PALLIATIVE AND END OF LIFE CARE IN PRISONS IN ENGLAND AND WALES – APPROACHES TAKEN TO IMPROVE INEQUALITIES
Authors: Fletcher Andrew , Payne Sheila , Waterman David , Turner Mary
Published: February 2014

Background

The End of Life Care Strategy (2008) states that healthcare providers, prisons and coronial services should develop strategies that enhance delivery of palliative and end of life care. The prison environment and rules potentially creates inequalities in care. A paucity of research means that although palliative care is recognised as desirable, there is a lack of evidence about the nature of what is required and its feasibility in a prison context.

Aims and Methods

The aim of the study was to quantify palliative and end of life care need in adult prisons in England and Wales and identify services delivered and strategies to enhance care. A self-reported questionnaire was developed and consent for participation sought from 124 prisons.

Results

Data obtained from 39 prisons (31.5% response rate) indicate that between 2010-2012, 113 prisoners died from natural causes; retrospective review concluded that 68 required palliative care input. Forty-five were considered for release to receive care in an alternative location; 20 of them were released. Factors preventing release included on-going risk, failure to identify patients in a timely manner or obtain the required medical report, and prisoners' wishes to remain in prison. Two-thirds of prisons had a palliative care policy; 28% had implemented the Gold Standards Framework and 36% Advance Care Planning. Ninety percent of prisons had access to palliative care nurse specialists and 77% palliative medicine consultants. Three broad approaches were identified; the individual prison approach, the cluster approach and the regional approach.

Conclusions

There is evidence of support from specialist palliative care services, implementation of palliative care principles and access to education for prison staff. The study has highlighted the challenges in developing palliative care services across the entire prisons service and the unique approaches adopted. Further research is underway to develop a model of integrated palliative and end of life care for dying prisoners.
CARING FOR FRAIL OR SERIOUSLY ILL OLDER PEOPLE DYING ON ACUTE HOSPITAL WARDS
Authors: Pollock Kristian , Caswell Glenys , Harwood Rowan , Porock Davina
Published: February 2014

Background

Hospital is considered an undesirable place to die. Concerns have been expressed about the quality of end of life care in this institutional setting, especially for patients dying with dementia.

Aims

To explore end of life care for frail older people with and without dementia on acute hospital wards and whether there were differences between these two groups of patients.

Methods

Qualitative UK study based on 245 hours of observation, interviews with 38 ward staff and 13 bereaved relatives and review of 42 patient medical records.

Results

The study findings highlight thedifficultyof recognising dying in frail older patients experiencing protracted decline prior to death. No differences were identified in the care and family experience of patients dying with or without dementia. It is difficult to apply the model of palliative care to older patients dying in acute hospital settings. Uncertainty of prognosis makes clinical decision making difficult, and exacerbates problems of communication with patients and families. Staff contact with dying patients and their relatives tended to be brief and task oriented. Across the wards, the variability in the families' experience of care was striking. Some families reported feeling unsupported throughout the vigil they kept for their dying relative. For others, however, hospital was, or came to be, thepreferredor most appropriate place, and could even provide apositiveexperience of death and dying.

Conclusion

Although hospital is widely regarded as the least preferred place of death, it will continue to be where most people die. It is important that the hospital is adequately resourced to provide sensitive, compassionate care to dying patients and their families. This will require substantial changes in the physical environment, organisation and delivery of care, and in staff understanding of their role in supporting and communicating with patients and their family carers.
PATTERNS OF DIAGNOSES AMONGST CHILDREN AND YOUNG ADULTS WITH LIFE-LIMITING CONDITIONS; IMPLICATIONS FOR SERVICE PROVISION
Authors: Fraser Lorna , Lidstone Victoria , Miller Michael , Aldridge Jan , Norman Paul , McKinney Patricia , Parslow Roger
Published: February 2014

Background

The numbers of children and young people with Life-Limiting Conditions (LLC) are rising due in part to increased survival. Therefore the teenagers and young adults with LLC require transition to appropriate adult services but the models of care for these services need to be aware of the diagnostic and demographic makeup of this population.

Aims

This study aimed to describe the patterns of diagnoses by age group in children and young adults with Life-Limiting Conditions.

Methods

Individuals (0–40 years) with LLCs were identified within an English Hospital Episode Statistics dataset by applying a customized coding framework of the ICD-10 disease codes. Prevalence per 10 000 population was calculated by five year age groups for each diagnostic group, stratified by gender.

Results

There is a U shaped prevalence with the highest overall prevalence in the under one age group (127 per 10000), decreasing until age 21–25 years (21 per 10000) before rising steeply to reach 55 per 10000 in the 36–40 year age group. Prevalence is higher in males than females until the age group 21–25 years where females predominate and the gap widens to 61.8 per 10000 female (95% CI 59.5–60.7) and 51.1 per 10000 male (95% CI 49.0–50.1) by age 36–40 years. Congenital Anomalies are the highest prevalence in children until age 16–20 years when oncology diagnoses become the most prevalent, rising steeply in early adulthood to 25 per 10000 by age 36–40 years. The second most prevalent diagnoses after age 25 years are neurology diagnoses in females and genitourinary diagnoses in males.

Conclusions

Patients with oncology diagnoses usually have different needs from a palliative care service than patients with slowly degenerative diseases. The diagnostic and demographic breakdown of the population of teenagers and young adults with LLCs is important when planning future service provision.
VIEWS OF HOSPICE STAFF, PATIENTS AND THEIR SIGNIFICANT OTHERS ON VIDEO-RECORDING CONSULTATIONS FOR USE IN RESEARCH AND TEACHING
Authors: Parry Ruth , Faull Christina , Feathers Luke
Published: February 2014

Research using video-recordings of actual consultations is increasingly providing better understandings of healthcare communication, and grounding new and effective interventions. Video-recordings provide details inaccessible through interviews and ethnographic observations. Initial work in a Health Association funded study involved consulting stakeholders and collating existing guidance to inform reasonable and ethical procedures for video-research in a hospice.

Aims

To gather hospice patients', their significant others' and staffs' perspectives on acceptable and feasible approaches to collecting video-recordings of hospice consultations for research and teaching about expert communication skills. To collaboratively produce a protocol for making and using recordings.

Methods

Patients and family members (n=14), experienced doctors and nurses (n=9), and educators (n=5) from a large hospice participated in audio-recorded qualitative interviews or focus groups, discussing: procedures for recruitment, consent processes, potential effects of video-recording on consultations, and use of video-clips within face-to-face teaching. Transcripts were thematically analysed, and findings triangulated with existing video-research guidance. A draft protocol for video-research in palliative care was refined through two rounds of consultation with a subsample of interviewees/focus group members.

Results

Views about the pros and cons of the research varied. Staff were more likely to emphasise restricting research to protect vulnerable people. Patients and family members tended to: emphasise the usefulness and need for the research; say patients and their significant others should be offered opportunities to participate; and note participation could be a positive element within the difficult experience of life coming to its end. Patients expressed very definite views about whether they personally would or would not be willing to be video-recorded. Across participants there were diverse views on whether recording would affect consultation behaviours.

Conclusions

Besides underpinning the design of our study, findings add to the knowledge available to underpin sensitive and appropriate design of palliative care research and ethical oversight thereof.