bluuebunny/crossref_metadata_2025 huggingface dataset:
When words are not enough – the use of commissioned art
Authors: Salt Susan
Published: March 2012

In 2010 to celebrate 25 years of hospice care in Blackpool Trinity Hospice commissioned artist Penny Warden to paint a sequence of paintings around the theme of dance to hang in the Hospice Chapel. The commission specified that the paintings must reflect the mission statement of the hospice – ‘enabling compassionate care on the journey to the end of life’ and represent the essence of hospice care in terms of helping individuals find a new way to be with whatever they were facing. Seven canvases were painted entitled, lost, body, mind, spirit, dance of life, found and hope. These paintings have been used extensively in both formal counselling sessions as well as informally by many visitors to the hospice. The images have been made into postcards that people can take home with them if they have been helped by one or all of the images. From January 2011 to June 2011 all visitors who made use of the chapel were invited through a poster near the paintings to record their response, both positive and negative, to the paintings by making a comment on them in a folder put out for that purpose. No attempt was made to encourage people to write in the folder. Over that 6 month period, 172 patients were admitted into the 28 bedded adult in-patient unit. A total of 59 individuals made an entry. Fifty-seven of the entries made positive comments such as uplifting, and inspirational, made me think, reflected how I was feeling. Two of the entries disliked the paintings one commented that they were inappropriate for a chapel and one the lighting was too bright. Informal feedback suggests that using artwork that has been specifically commissioned to reflect key elements of hospice care are appreciated by a significant minority of visitors to one hospice
Living and dying well with advanced kidney disease: the future is tomorrow…?
Authors: Highet Gill , Crawford Debbie , Drummond Iain , Murray Scott , Boyd Kirsty
Published: March 2012

Background

Patient identification and care planning are central to UK end-of-life policies. For patients on renal replacement therapy, dialysis withdrawal is the main cause of death. Most die in hospital after multiple admissions.

Aims

An indepth, case study of a 24-bedded general renal ward explored the admission, assessment and discharge planning processes of patients identified after an unplanned admission as having unmet palliative care needs and a limited prognosis.

Methods

The multi-disciplinary renal team worked with the researcher for two months to generate data from multiple perspectives. Patients were screened with a checklist of indicators for advanced disease. 58 (44%) were identified and followed for 3 months. A purposive sample of five patient – carer – GP triads were interviewed at home, soon after discharge. Patients completed a patient outcome score and staff a semistructured questionnaire. The researcher used the Workplace Culture Critical Analysis Tool for ward observations.

Findings

Advanced kidney disease is punctuated by unplanned hospital admissions due to complications of treatment or co-morbidities. Death often followed an acute deterioration that triggered dialysis withdrawal. Patients demonstrated fluctuating ambivalence about their illness and the future, using avoidance and disavowal to maintain hope. Professionals strived to balance patient wishes with ethical decisions about treatment. ‘Palliative care’ had negative connotations and advance ‘planning for dying’ was not a helpful construct.

Conclusions

Patients receiving renal replacement therapy focus on short-term goals as they try to ‘live well’ with complex illnesses and treatment. Clinical indicators can be used to identify advanced kidney disease, but prognosis and likely mode of death are uncertain. Anticipatory care planning needs to engage patients and carers in ‘planning for uncertainty’ and could consider levels of intervention for the next acute episode. Making a planned transition to end-of-life care before the patient is dying can be complex and challenging.
Palliative care consultations in a tertiary hospital Emergency Department
Authors: Cassel J Brian , Luckholm Laurie , Coyne Patrick , Korshin Timur
Published: March 2012

Background

In the USA, our Palliative Care (PC) program is unique in its early intervention in the Emergency Department (ED).

Aims

Our goals for this study were to (1) describe PC involvement in the ED at our hospital; (2) describe the typical reasons for PC involvement; and (3) describe what happened to patients following initial consultation.

Methods

We analysed the ‘tracking sheets’ documenting PC consultations from the years 2006–2011 that occurred in the ED. For the years 2008–2011 we matched the consult data to hospital billing and administrative databases for the ED visit and/or eventual hospitalisation.

Results

Since 2006, 429 patients received a palliative care consultation during an ED visit. This increased from 36 in 2006 to more than 90 in each of the past two years. Reasons for consultation included pain (52%), other symptoms (54%), and goals of care (54%); 17% were solely for pain, 11% were solely for other symptoms and 21% were solely for goals of care. Hospital data were available for 252 cases seen since July 2008. Six died in the ED, 31 were released from the ED, twelve were held in the hospital as ‘observation’ cases and 203 (81%) were admitted. Fifty-one (25%) of those hospitalisations ended in death and another 25% ended in discharge to hospice. 162 (80%) were admitted to the PC Unit, for an average of 3.9 days, almost all directly from the ED. Only seven were admitted into intensive care units (ICUs), for an average of 3 days; only one died in the intensive care unit (ICU).

Conclusions

Compared to inpatient consultations for our PC program, consultations in the ED have a higher frequency of goals of care reasons, and lower for pain-only or symptoms-only. For those hospitalised following consultation, length of stay and ICU utilisation are quite low by US standards.
Non-professional carers' views on the care of the dying in an acute trust; the impact of a simple end of life tool
Authors: Bloor Sophia , Reid Colette , Burcombe Melanie , Gibbins Jane , McCoubrie Rachel , Forbes Karen
Published: March 2012

Aims

The Department of Health's End of Life strategy promotes integrated care pathways for the dying as a means of improving end-of-life (EOL) care. The authors designed a pilot study to determine whether a simple EOL care tool could improve the dying experience in an acute hospital setting as perceived by carers.

Methods

40 patients received usual EOL care and 30 patients had their EOL care directed by the EOL care tool. Bereaved carers were contacted a month after the patient's death and asked to complete the validated VOICES questionnaire.

Results

20/40 questionnaires were returned by carers whose relatives received usual care and 18/30 by carers whose relative received care directed by the tool. Although numbers are small and therefore changes are not statistically significant, improvements were seen in the responses regarding medical and nursing care (43.8% of relatives rated nursing care as excellent in the usual care group compared to 83% in the EOL tool group). Benefits were seen in pain management (56.3% of carers perceived their relative had pain when receiving usual care vs 28% in the EOL tool group). Improvements were also seen in communication with more relatives feeling they were kept informed about the patient's condition in the EOL group than in the usual care group. (64% vs 38%). More carers were present when their relative died following introduction of the tool (43.8% in the usual care group vs 67% in the EOL tool group).

Conclusion

Non-professional carers reported improvements in some aspects of end-of-life care following the introduction of a simple EOL care tool. This needs further testing in an adequately powered trial.
Family care giving at end of life among older South Asians living in East London: a qualitative inquiry
Authors: Venkatasalu Munikumar Ramasamy , Arthur Antony , Seymour Jane
Published: March 2012

Background

With the increasing reliance on family care giving at the end of life, we need to know more about views, experiences and understandings among different cultural and ethnic groups that make up the UK population.

Aim

This paper examines the perspectives of older South Asians living in East London on family care giving at the end of life.

Methods

Five focus groups and 29 indepth, semistructured interviews were conducted with 55 older adults aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited from 11 local community organisations. Constructive grounded theory was used to analyse the data.

Findings

Perspectives on family care giving at end of life among older South Asians living in East London are complex and seem to relate to inherited socio-cultural values. Value was placed on ‘honour’ within the family and upon the extended family and social network. Honour within the family was related to experiences of providing end of life care within marriage and the expectations of ‘filial responsibility’ in the provision of care. The extended family and the wider community were considered key in supporting the dying person and his or her immediate family.

Conclusion

This study sheds light on family care practices and understandings of ‘family’ within South Asian minority groups that may help service providers and practitioners who have responsibility for health and social care in the community. Future research is needed to observe family care giving in ‘action’ among these ethnic minorities.
Can palliative care services reduce futile treatment? A systematic review
Authors: Harris Iain , Murray Scott
Published: March 2012

Background

Palliative care interventions have the potential to reduce costs to the health service by reducing intensity of treatments intended to have curative effect while concentrating on quality of life and, in due course, quality of death. A patient receiving treatment inspired by curative intent during the end stage of their life is potentially exposed to medical futility.

Aim

To conduct a systematic review of evidence for palliative interventions' ability to reduce cost without impacting on quality of care.

Method

Electronic search of MEDLINE, EMBASE, AMED and CINHAL databases; augmented by hand searching techniques. We selected only randomised controlled trials, cohort studies and case controlled studies where palliative care was the intervention or observation, with cost and either patient satisfaction with care or quality of life as an outcome measure.

Results

Of 1964 sources identified, 13 met the inclusion criteria by measuring both cost and at least one quality outcome. Evidence supported existing research that palliative care interventions generally reduce health service costs: only one study reported costs increasing during a palliative intervention. Evidence regarding quality of life outcomes was not conclusive, not least because small sample sizes hampered statistical assessments of data within trials. All sources had at least one methodological limitation identified within: these included failure to report measures taken with regard to blinding, no explanation of randomisation process, insufficient detail for some outcome measures and incomplete accounting for losses to follow-up.

Conclusions

Evidence that palliative interventions cut costs by minimising futile medical acts, while not reducing quality of life is negligible. Further research, possibly using observational methods in view of some limitations inherent in trials, should be conducted.
An evaluation of attitudes of hospice staff to organ and tissue donation
Authors: Wale Jane , Faull Christina
Published: March 2012

Background

Evidence suggests that organ and tissue donation is viewed positively by the donors' family including a small amount of evidence related to palliative care. The subject of organ and tissue donation is not routinely discussed with patients referred to Leicestershire and Rutland Organisation for the Relief of Suffering (LOROS) and very few patients donate.

Aims

To investigate the attitudes of hospice staff to donation and to look at the perceived challenges of discussing such issues with terminally ill patients and their families.

Methods

A questionnaire based on the questionnaire developed by Vrtis (1993) was mailed to all hospice staff. Staff were then invited to participate in focus groups so their views on discussing organ and tissue donation could be explored in greater depth.

Results

76/94 questionnaires were completed. 43/76 people wanted to donate their own organs when they died, 11/76 did not. 46/76 had discussed these wishes with their family. 39/76 members of staff had discussed donation with patients in the hospice and most of them felt comfortable doing so. Most staff (49/76) only discussed the subject if it was raised by the patient, 20/76 never discussed it, one discussed this matter routinely. The majority of staff thought that the topic was best discussed when the patient was well. Most staff felt that discussing tissue donation in the hospice would cause patients and families to be uncomfortable, and that families were more likely to feel horrified than pleased if the subject was brought up.

Conclusions

The study shows that staff are hesitant about discussing tissue and organ donation with patients; reasons include a fear of increasing distress, a perception that the discussions should take place when the patient is well and it being a subject that staff ‘do not even think about’ unless the patient instigates the discussion.
A comparison of cognitive function and activity levels in disease-free breast cancer patients
Authors: Minton Ollie , Stone Patrick
Published: March 2012

Background

Chronic fatigue is a feature in a subset of women successfully treated for breast cancer. The clinical features of this group are not well characterised. This study examines differences in objective cognitive function, activity levels and sleep in disease-free women who do and do not meet the criteria for CRFS.

Methods

Women between 3 months and 2 years after completion of any primary therapy were recruited from a nurse-led follow up clinic at a cancer centre. On the basis of a diagnostic semistructured interview they were classified as being cases of CRFS or non-fatigued controls. Participants underwent objective cognitive testing using a computerised battery and were asked to wear an activity monitor for a 1 week period. They also completed quality of life and fatigue questionnaires.

Results

114 women were recruited (69 controls and 45 cases of CRFS). There were significant differences between groups on fatigue, mood, sleep and quality of life scores. There were also significant differences in objective cognitive testing (tests of sustained attention, reaction time and verbal memory). There was an overall difference in daytime activity from actigraphy recordings. There were no differences on objective measures of sleep or in routine laboratory measures.

Conclusions

Our study suggests that disease-free women with CRFS after successful treatment for breast cancer have a significantly lower subjective quality of life and mood. In addition, objective cognitive impairment in certain domains may play an important part in the subjective manifestation of these symptoms. There is also objective evidence on actigraphy of differing levels of activity. The subjective sleep disturbance and higher prevalence of insomnia do not correlate with objective measures.
How to approach advance care planning in severe COPD: a qualitative study of patients' views
Authors: MacPherson Anna , Walshe Catherine , O'Donnell Valerie , Vyas Aashish
Published: March 2012

Background

Advance care planning is recommended for patients with chronic obstructive pulmonary disease (COPD), aiming to reduce unwanted interventions, improve communication and influence place of death. Currently this is rarely done. Healthcare professionals' perspectives on the reasons for this have been sought, but there is little information about patients' views.

Aims

To explore the views of patients with severe COPD on advance care planning and how they feel it could be best integrated into their care.

Method

A qualitative interview strategy was adopted, drawing from grounded theory. Patients with severe COPD (gold standards framework criteria) were recruited from primary and secondary care until saturation was reached (n=10, 9M, 1F). Interviews using a broad topic guide were conducted in participants' homes, audio recorded and transcribed verbatim. Analysis was inductive, generating themes using techniques of constant comparison.

Results

Participants wanted to discuss their future preferences and concerns with healthcare professionals, but did not feel comfortable making binding advance decisions and wanted to revisit these discussions regularly. Participants were not distressed by these discussions. Some participants felt more comfortable discussing future preferences with healthcare professionals they knew, others were comfortable with any healthcare professional involved in their care. Participants identified wanting more information about their diagnosis including prognosis early in their illness, but thought advance care planning would be more appropriate later. They expected their healthcare practitioner to initiate advance care planning discussions.

Conclusions

Advance care planning discussions could have a useful role in the care of patients with severe COPD, and fit with what patients expect from their healthcare team. Distress could be minimised by sensitive exploration, ideally within an established healthcare relationship. Regular discussion of disease status and likely progression, identified as being wanted from an early stage, could establish a good background to later discussion of advance care planning.
The relative importance of support domains in explaining adverse effects from family care giving
Authors: Grande Gunn , Ewing Gail , Sawatzky Rick
Published: March 2012

Background

Family carers play a central role in supporting patients at home towards the end of life. However, they often suffer considerable adverse effects from care giving. To improve care provision for carers the authors need to understand the predominant domains of support associated with adverse effects from care giving, where lack of support may have the greatest negative impact.

Aims

To investigate the relative importance of different support domains in explaining adverse effects from care giving.

Methods

Six hospice home care services in the UK identified and sent a postal survey to the main carer of all patients active on their caseload. N=225 carers participated (25% response rate). Survey measures included carer Preparedness (Archboldet al), Global Health (EORC QLQ-C30), Strain and Distress (FACQ-PC). Lack of support was measured through 14 core support domains of the Carer Support Needs Assessment Tool (CSNAT). Linear regression analysis was conducted to examine the associations between the support domains and carers' perceived preparedness, global health, strain and distress. The Pratt Index was used to evaluate relative importance.

Results

Lack of daytime and night-time respite and not knowing what to expect in the future, were the most important CSNAT domains in explaining adverse effects from care giving. Overall lack of support explained the greatest variance in Strain (47%) and Global Health (35%), followed by Distress (29%) and Preparedness (27%). Further details of the relative importance of each support domain on each type of adverse effect will be presented.

Conclusions

While the authors know general support for carers is likely to be beneficial, our analysis demonstrates the importance of understanding the relative importance of different domains of support in preventing adverse effects, in particular respite and reducing uncertainty about what to expect in the future.
Are health and social care professionals prepared for palliative care in parkinson's disease?
Authors: Kernohan W George , Waldron Mary , Foster Sue , Hasson Felicity , Cochrane Barbara
Published: March 2012

Background

Although palliative care has been advocated in the care of patients with chronic diseases such as parkinson's disease (PD) they do not always receive it in a timely fashion.

Aim

The authors sought to identify the health and social care professionals; self-assessed levels of training and confidence to deal with palliative care in PD.

Methods

Within an exploratory research design, 32 health and social care professionals completed a survey on their levels of training and confidence in providing palliative care to people with PD. Descriptive statistical analysis was used to explore the data.

Results

Nine doctors, nine nurses, seven Allied Health Professionals (AHPs) and seven social workers completed questionnaires. Half of the participants (n=16) had cared for over 30 patients with advanced PD. Over half (n=17, 53%), had received some training in both parkinson's disease and palliative care, while 13, (40%) had training in one or the other. Over half (n=17, n=53%) of participants were confident or very confident in managing or providing palliative care to patients with advanced PD. Four (13%) participants had low or no confidence in providing such care: three of this group were social care professionals. Those who had had training in PD (n=27 84%) tended to rate themselves as being more confident. Similarly, those who had training in palliative care (n=21, 66%) rated themselves as confident or very confident in providing palliative care to patients with PD and caregivers.

Conclusions

Most respondents showed an acceptable level of readiness to manage and deliver palliative care in PD. Attendance at training sessions in PD and in palliative care leads to greater confidence in dealing with this condition.
Hospice staff perceptions of caring for patients with a non-malignant illness in the UK
Authors: Balasubramanian Sundaravadivel , Read Sue
Published: March 2012

Introduction

Palliative care nurses who have been traditionally caring for patients with cancer (CP) have started to care for non-cancer patients (NCP) as specialist hospice environments are broadening their patient criteria to accept a range of non-malignant conditions outside of cancer within the UK.

Aim

The overarching aim of this qualitative research study is to explore the perceptions of registered nurses working in a hospice in Staffordshire, caring for NCPs. Specifically this involved: exploring how confident nurses feel while caring for NCPs; identifying and describing the similarities and differences when caring for this population and those with cancer; highlighting the educational needs related to understanding the natural history of symptoms and problems in non-cancer patients; and recognising nursing perceptions on what supports/disables confidence in caring for patients with a non-malignant disease.

Method

Focus groups were conducted in this qualitative research study (n=8; n=8). The discussions were digitally recorded, transcribed verbatim and analysed using content/thematic analysis.

Results

Five key themes evolved from the research, namely: the importance of preparation; the differences and similarities between treating NCPs and CPs; the importance of collaborative working was crucial; staff and patient perspectives; and the associated challenges in terms of time, skills needed and interestingly, what the future holds for NCPs within the hospice context.

Conclusions

Focus groups were used successfully to explore perceptions of registered nurses around caring for NCP within one hospice environment within the UK. While there were many challenges and tensions identified, these were well balanced with the tensions of positive and constructive comments around the integration of patients with non-malignant diseases within a traditionally cancer driven organisation. Such a change in direction will impact upon how staff manage this within existing palliative and end of life care provision.
Differences in perceptions of palliative care needs for children with neurological conditions
Authors: Yeo Tong Hong , Brooks Lynda
Published: March 2012

Objectives

To explore paediatric subspecialities' roles and their perceptions of the need for palliative care among children with long term neurological conditions (LTNC) compared with paediatric palliative care specialists. To examine the ease of access to healthcare services among children with LTNC.

Design

Electronic questionnaire survey of members of BPNA, BPPM, BACD, and BACCH. 24 questions evaluated different aspects of practices and attitudes of palliative care among children with LTNC by linear analog scale and multiple choice responses.

Results

Total of 130 respondents from different specialities completed the questionnaire: 38 (29%) paediatric neurology, 18 (14%) general paediatrics, 26 (20%) community paediatrics, 24 (18%) paediatric neuro-disability, 18 (14%) paediatric palliative care and 6 (5%) other specialities. Majority respondents, 111 (85.4%) often look after and provide end of life care to children with LTNC and 118(91%) believe palliative care would be appropriate. Most non-palliative care respondents would refer children with life-shortening (104/112, 92.9%), progressive (110/112, 98.2%) or stable (90/112, 80.4%) neurological conditions to palliative care. However, most non-palliative care respondents (74/112, 66%, p=0.013) would not refer children with life-threatening conditions to palliative care. There is notable overlap in the palliative care related activities of each subspecialty. Both palliative care and non-palliative care respondents recognised core elements of palliative care specialists to include symptom management, psychosocial and spiritual support, and management of death and bereavement support. Many respondents reported difficult or no access to specialist palliative care (62/130, 47.7%) and specific services such as clinical psychologists (84/130, 64.6%) and social services (42/130, 32.3%).

Conclusions

This survey highlighted the appropriateness of palliative care among children with LTNC, and revealed a gap between established palliative care guidelines and perceptions of many paediatricians. Paediatricians should recognise that every life-shortening or life-threatened child should have access to palliative care and support. To avoid duplicating care provision and competing for limited resources, there is a need for close co-ordination of services.
The experiences and expectations of south asian mothers with a life-limited child
Authors: Brown Erica
Published: March 2012

It is estimated that South Asian communities make up approximately 6% of the population of the UK (2011) and the numbers are increasing. There is sometimes an assumption that the needs of families from Black and minority ethnic groups are met by resources within their own communities (Brown, Gatrad and Sheikh, 2008) but, although they do not often come forward for help, their needs may not be met as they struggle with little support. Therefore, the need to provide accessible and appropriate palliative care to minority ethnic groups is seen as a significant service development priority. During the last decade, a number of studies have brought to light the needs of life-limited children and their families (Brown, 2008). However, while there is a growing amount of research to ascertain the psychosocial needs of families with a life-limited child, scant attention has been paid to cultural care (Brown, (2008), Irish, Linguist and Nelson (1999). Recent research in partnership with Acorns Children's Hospices set out to determine the experiences and expectations of South Asian mothers around the time their child or young person was diagnosed as having a life-limiting illness. The findings of the research suggests that the diagnosis of a life-limiting illness may well be a watershed between two different lifestyles – the prediagnostic life and postdiagnostic life when parents feel that the future is unknown and everything is at the mercy of their child's illness. The situation often renders mothers in an extreme state of anxiety. Supported by narrative from interviews, the presentation outlines: South Asian mothers personal experience including the impact of their child's diagnosis. Mothers' perspectives on family and community support. Mothers' perceptions of professional attitudes (including hospital consultants) Mothers' experience of the support provided by three children's hospices.
Factors affecting quality of life of patients with advanced cancer of oesophagus with feeding gastro
Authors: Muganga Jessica , Kolya Frida , Basemera Jacquilline , Leng Mhoira , Namukwaya Elizabeth
Published: March 2012

Management of patients with inoperable oesophageal cancer is challenging. The challenges to quality of life among patients with advanced cancer of oesophagus require a detailed investigation. Experience has shown that patients with advanced cancer of the oesophagus, who have a gastrostomy tube, have many concerns including; physical, social, psychological and spiritual. Very little is known about the quality of life of patients with advanced cancer of oesophagus with a feeding gastrostomy in Mulago hospital. This study will attempt to investigate and document the factors affecting quality of life of patients with advanced cancer of oesophagus with a feeding gastrostomy tube in mulago hospital.

Methods

Cross-sectional descriptive, qualitative study in Mulago hospital on patients with advanced cancer of the oesophagus, who are 18 years and above and have a feeding gastrostomy. Patients will be recruited until there is thematic saturation. Patients who are too unwell (unconscious) to participate will be excluded. The study will be compiled by end of June 2012 and will be ready for presentation in August.

Results

The authors hope to identify physical, psychological, social and spiritual factors affecting quality of life of patients with advanced cancer of the oesophagus with feeding gastrostomy. Factors affecting the quality of life of patients with advanced cancer of oesophagus with a feeding gastrostomy in Mulago Hospital, will be established, and results will be used in future; In planning for management of Cancer of Oesophagus patients To improve health service delivery in cancer of oesophagus patients To increase public awareness The results will also be used for further studies.
‘Palliative care equals end-of-life care’: barriers to referral in a paediatric tertiary care centre
Authors: Twamley Katherine , Kelly Paula , Craig Finella , Hollowell Delia Rizpah , Mendoza Patricia , Bluebond-Langner Myra
Published: March 2012

Background

Referral rates to children's palliative care services are consistently low and occur late in the illness trajectory. Previous studies cite healthcare professionals' (HCP) attitudes and knowledge as barriers to referral. The majority of these studies were conducted in the US, where differences in palliative care services limit the applicability of findings to the UK. This paper presents the first ever survey of UK paediatric HCPs' knowledge and attitudes towards paediatric palliative care.

Aim

To describe attitudes towards palliative care and knowledge of services among HCPs working in a paediatric tertiary care hospital in the UK, and to consider their role in referrals.

Methods

A survey of closed and opened-ended questions was sent to 923 HCPs in a large paediatric tertiary care hospital. Descriptive statistical analyses were conducted with SPSS, and thematic analysis of open-ended responses with NVIVO software.

Results

132 HCPs responded (14% response rate) including 60 nurses, 42 physicians and 30 other HCPs. HCPs were most likely to choose ‘diagnosis’ as the appropriate time to refer a patient to palliative care (48%); only 4% selected the end of life period. 63% disagreed with the statement ‘Palliative care is primarily about providing care at the end of life.’ Yet the most frequently reported reason for previous palliative care referrals was to ‘discuss with parents the option of the child dying at home or in a hospice’ (49%); 50 % of those completing the open text response box indicated that they associated palliative care with end-of-life care and dying.

Conclusions

Our data suggest that given the HCPs' awareness of the principles of palliative care and knowledge of services, more attention needs to be given to HCPs' underlying association of palliative care with end-of-life. Other factors may also play a role in referral and require further research and consideration.
‘It's not just about death’: changing attitudes and knowledge of palliative care in neonatal units
Authors: Kelly Paula , Twamley Katherine , Moss Rebecca , Mancini Alexandra , Bluebond-Langner Myra , Koh Michelle
Published: March 2012

Background

In an effort to facilitate improved and earlier access to palliative care (PC) for babies and their families, a 4 h educational workshop on the principles, practice and resources in PC was offered in 21 neonatal units across London. Each workshop was tailored to ensure locally relevant information. This paper assesses the impact of these workshops.

Aim

To evaluate the impact of a short 4 h workshop on the attitudes towards PC and knowledge of services among neonatal clinical staff.

Methods

Before and after each workshop, attendees completed a survey of open and closed questions to assess changes in attitudes and knowledge. Descriptive statistical analyses were conducted with SPSS, and thematic analysis of open-ended responses with NVIVO software.

Results

331 healthcare professionals attended the sessions, and 264 (80%) completed questionnaires. The majority of attendees were experienced neonatal nurses working in NICU, with limited experience making referrals to PC services. Statistical tests showed significant (p<0.05) shifts in attitudes and knowledge. After the session, 80% of respondents felt confident referring to palliative care services, compared with 46% before. An additional 20% of respondents selected ‘diagnosis’ as the appropriate time to refer to PC. Analysis of open text responses revealed a shift in attitude after the sessions from a focus on dying/end of life, towards integrating PC as part of a holistic treatment plan. Over 79% of respondents reported that the workshop met their learning needs with regard to PC services and referral procedures.

Conclusions

A short locally delivered workshop can change attitudes and increase knowledge in neonatal staff. Further work is being conducted to assess the impact of such changes on clinical practice, including referral to community and specialist PC services.
Living and dying with cancer in Thailand
Authors: Nilmanat Kittikorn , Chailungka Pachariya , Phungrassami Temsak , Promnoi Chantra , Tulathamkit Kandawasri , Phattaranavig Sasiwimon
Published: March 2012

Background

Cancer is a leading cause of death in Thailand. Thai cancer patients often seek medical treatment while in advanced stages of the disease. Despite a recent increase in this attention given to improve end of life care in Thailand, little research has been undertaken to describe the experiences of those who live at the end of life.

Aims

The aim of this longitudinal ethnographic case study was to explore the experiences of living toward end of life in patients with advanced cancer.

Methods

Series interviews and participant observation were conducted on 15 patients with terminal advanced cancer and 20 family caregivers. The inductive qualitative analysis was applied.

Results

The stories of these informants with advanced and terminal cancer reflected the experiences of living with suffering and moving beyond suffering. Sufferings experienced by informants included suffering related to the ill body and suffering related to care. Adopting religious doctrine, being hopeful, and being surrounded by love and care from family helps the informants move beyond and transcend the sufferings.

Conclusion

The result of this study will be useful for healthcare providers to develop end of life care program in order to improve quality of life of the terminal cancer patients and to promote peaceful death at home.
Prognostic indicator tools in COPD: a systematic review
Authors: Firth Adam , Frank Tim , Sanders Caroline
Published: March 2012

Background

Patients with severe chronic obstructive pulmonary disease have a burden of symptoms at least equivalent to that of patients with terminal cancer yet palliative care provision is less well established. A significant obstacle to providing palliative care for patients with COPD is the challenge associated with identifying those at risk of death when the condition is associated with such an unpredictable illness trajectory. Prognostic indicator tools may help overcome this but no systematic review has considered the utility of COPD specific prognostic indicator tools in primary care settings.

Aim

To explore whether multidimensional prognostic indicator tools in COPD can predict 12-month mortality in patients being managed in primary care.

Methods

This systematic review employs the discipline of narrative synthesis following the approach recommended by the Centre for Reviews and Dissemination (CRD). An extensive search incorporating relevant conference proceedings was conducted, followed by data extraction through tabulation, quality assessment by two researchers and synthesis of available data.

Results

22 individual tools were identified from 37 relevant papers. Four tools: the ADO index, HADO score, DOSE index and TARDIS were developed with a specific focus on primary care. Only the BODE index had been validated in sufficient cohorts for its efficacy to be confidently established; however the BODE index, with its 6-min walking test, lacks utility in primary care settings. No studies have assessed the prognostic approach currently recommended in UK clinical practice.

Conclusions

No current multidimensional prognostic indicator tools are sufficiently validated to be recommended for widespread use in UK primary care to identify patients at risk of death in the next 12-months. The research conducted to date suggests that there is scope to further validate some of the proposed tools and more work is required to understand the accuracy and applicability of prognostic indicator tools for use in COPD.
Male carers' perceptions of support for adults with multiple sclerosis: national survey findings
Authors: Sibley Andrew , Payne Sheila , Addington-Hall Julia
Published: March 2012

Background

Multiple Sclerosis (MS) is more prevalent in women than men. Men are particularly likely to take on the role of carers in MS but this has been rarely researched. The EAPC Carer White Paper notes the paucity of research into carer subgroups' support needs.

Aim

To investigate the perception of support for adults with MS and of men caring for adults severely affected by MS.

Method

Questionnaire survey design. Questionnaire developed from initial qualitative interviews. Widely disseminated via UK MS Society.

Findings

231 men took part (85% online, 15% by post). Most cared for an adult with Secondary Progressive (44.2%) or Primary Progressive MS (37%). Men lived in 45 UK counties, mean age was 60 years, and half reported spending at least 50 h a week caring (52%). A third (34%) had not tried to access advice/information about support/services. Of those that had, most found it ‘very’ (15%) or ‘fairly easy to find’ (54%). Men aged under 55 years reported most difficulty in accessing information (p=0.006). Twenty-five per cent of men had received no support/services in the last year. Of the remainder, 67% reported the support/services had ‘made things easier’. Most men reported the amount of support received ‘was about right’ (68%), and rated professional care staff as ‘completely’ (16%), ‘very’ (37%) or ‘fairly reliable’ (32%). Most men were ‘extremely (8%), ‘very (29%) or ‘fairly satisfied’ (30%) with support from social services. Those still working reported significantly more dissatisfaction than retired men (p=0.05).

Conclusions

Men were largely positive, but not effusive, about services/support available to them and the person in their care. Younger men repeatedly differed in their perceptions, suggesting that they either have higher expectations, greater need or both. Health professionals need to consider the specific needs of men carers.
Effect of opioids on the phagocytosis of neutrophils and monocytes: a systematic in vitro analysis
Authors: Boland Jason , Foulds Gemma , Ahmedzai Sam , Pockley Graham
Published: March 2012

Background

Bacterial infection is a common complication in patients with advanced disease, including cancer. Ingestion (phagocytosis) and subsequent killing of bacteria by neutrophils and monocytes are critical in the control of infection. Using a range of different methodologies, previous invitro and in vivo studies have generally reported that some commonly prescribed opioids are immunosuppressive (ie, morphine), whereas others have been shown to be immunoneutral (ie, fentanyl), and even immunostimulatory (ie, tramadol). However, direct, comparative, systematic studies aimed at analysing their relative impact remain lacking.

Aims

To systematically assess the in vitro effects of clinically-relevant concentrations of commonly used opioids on the phagocytosis ofE coliby peripheral blood neutrophils and monocytes.

Methods

Peripheral blood was collected from healthy volunteers and incubated with clinically-relevant concentrations of morphine, fentanyl, tramadol, buprenorphine, oxycodone, diamorphine, methadone or codeine for 60 min. Samples were then incubated with FITC-conjugated E.coli for 10 min at 37°C, at which time the proportion of neutrophils and monocytes that had phagocytosed E.coli, and the intensity of the phagocytic response was determined using whole blood flow cytometry (PHAGOTEST, Orpegen Pharma GmbH, Germany). Control samples were incubated at 4°C.

Results

Although morphine, fentanyl, tramadol and buprenorphine inhibited the phagocytic responses of neutrophils and monocytes by up to 75% in some individuals, due to inter-individual variability this did not reach statistical significance. Codeine, oxycodone, diamorphine and methadone had no detectable effect on neutrophil or monocyte phagocytosis.

Conclusion

Although the true impact of opioid treatment on the susceptibility of patients to bacterial infection in vivo has yet to be defined, these systematically observed in vitro findings indicate that opioid choice might impact on the clinical status of some patients who are at an increased risk of bacterial infection. Future work needs to elucidate the population prevalence to the susceptibility from these potentially immunosuppressive opioids.
Involvement, attitudes and training needs in palliative care of doctors in Camau, Vietnam
Authors: To Nghi M , Noble Bill
Published: March 2012

Background

The Camau Province of Vietnam has a population of over 1.2 million and the number of cancer patients needing palliative care is estimated approximately 1500. In 2010, an educational project in palliative care aiming to raise the standards of generalist palliative care for cancer patients in the community was funded by the Camau Cancer Control Committee. Therefore, as a first step, the authors undertook a survey of practitioners to evaluate key aspects of current palliative care provision in the province.

Aim

To evaluate the involvement, attitudes and training needs of doctors whose work relates to palliative care for advanced cancer patients.

Method

A survey of 131 doctors who attended the first workshop of the project was undertaken in Camau City in July, 2010.

Results

A response rate of 71% was obtained. Palliative care provision to cancer patients was involved over 80% of rural family doctors. Pain, anorexia and fatigue were three most frequent symptoms. Over half of doctors believed that local services and home are likely appropriate place for patients with advanced cancer being cared for. The confidence levels in dyspnoea and pain management were 8% and 53%, respectively. Moreover, only one-tenth of doctors had experienced training in palliative care in 2 years recently.

Conclusions

Palliative care for cancer patients formed a small but significant part of rural family doctors' caseload. The majority of respondents indicate their willingness to engage further with palliative care at their workplace. However, there are still barriers that prevent them from providing sound palliative care to cancer patients who need it. Lack of training in the field is more likely the most challenging issue.
Patients dying in the community – what role for primary care?
Authors: Gregan Paul , Lynch Marie , Loughrey Emer , O'Toole Eve
Published: March 2012

Background

In Ireland there are no formal frameworks to support primary care teams to identify and respond to the palliative care needs of their patients.

Aims

As part of the Primary Palliative Care programme, the Irish Hospice Foundation, Irish College of General Practitioners and Health Service Executive surveyed GPs, Community Nursing (CN) and Allied Health Professionals (AHPs) to establish initiatives that would support the care for patients facing death in the community.

Methods

Formal views were gathered from staff through consultation meetings (5) and subsequent distribution of questionnaires (685). Palliative care themes addressed included education, medication, patient pathways, communication and non-cancer. 105 staff participated in the consultation meetings and the questionnaires had a 27% (n=127) response rate.

Results

The initiatives identified that directly benefit patient care included: introducing an electronic hand-over form between GP and out-of-hours services (78%); guidance in management of palliative medications (48%) and introducing a system for primary care teams to identify patients with palliative care needs (38%). From an education perspective, training in symptom control (66%) and palliative care for non-malignant disease (40%) were highly rated by all professions. The service enhancements identified, that have resource implications include: timely access to equipment (87%); greater access to OOH community nursing (73%); improved access to psychological support for patients/families (71%) and access to advice and information from specialist palliative care outside traditional hours (69%).

Conclusions

Community healthcare professionals recognise the role they play in responding to patient's palliative care needs. The challenges and education deficits identified were broadly in keeping with data available from other countries. Enhancing co-ordinated and communication of care as well as the role for palliative care for patients with non-malignant disease require attention. More resources are required to ensure fully responsive and holistic primary care service for patients dying in the community.