An evaluation of continuous subcutaneous infusions across seven NHS acute hospitals: is there potential for 48-hour infusions?

BACKGROUND: Continuous subcutaneous infusions (CSCIs) are commonly used in the United Kingdom as a way of administering medication to patients requiring symptom control when the oral route is compromised. These infusions are typically administered over 24 h due to currently available safety data. The ability to deliver prescribed medication by CSCI over 48 h may have numerous benefits in both patient care and health service resource utilisation. This service evaluation aims to identify the frequency at which CSCI prescriptions are altered at NHS Acute Hospitals. METHODS: Pharmacists or members of palliative care teams at seven acute NHS hospitals recorded anonymised prescription data relating to the drug combination(s), doses, diluent and compatibility of CSCIs containing two or more drugs on a daily basis for a minimum of 2 days, to a maximum of 7 days. RESULTS: A total of 1301 prescriptions from 288 patients were recorded across the seven sites, yielding 584 discrete drug combinations. Of the 584 combinations, 91% (n = 533) included an opioid. The 10 most-common CSCI drug combinations represented 37% of the combinations recorded. Median duration of an unchanged CSCI prescription across all sites was 2 days. CONCLUSION: Data suggests medication delivered by CSCI over 48 h may be a viable option. Before a clinical feasibility study can be undertaken, a pharmacoeconomic assessment and robust chemical and microbiological stability data will be required, as will the assessment of the perceptions from clinical staff, patients and their families on the acceptability of such a change in practice.

PA3†Using the lived experience of volunteers to enhance the care of dying patients and their families.

BACKGROUND: In the UK, the majority of people die in hospital.(1) Community presence is considered to be a significant component to achieving a "good death",(2,3) however many patients die with no/few visitors, spending their last weeks of life isolated or alone. AIM: To establish a Volunteer Service and offer: A presence to dying patients. A connexion to the community outside the Hospital. Support to families, unable to visit or emotionally exhausted from their bedside vigil. METHODS: The Service was piloted on 6 wards (October 2012-March 2013) within a large NHS Trust, in the North of England. This was followed by a comprehensive evaluation, according to MRC guidance. RESULTS: Analysis of the service evaluation indicated that the service was extremely beneficial, meeting its aims in providing an emotional support and spiritual presence to dying patients, and their families. CONCLUSION: The Service provides a model of best practice that could be replicated in other Trusts and within other care settings. There are plans to further develop and expand service provision across the Trust. REFERENCES: National End of Life Care Intelligence Network. What we know now. 2013. http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now_2013 Department of Health. End of Life Care Strategy. 2008. https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adults-at-the-end-of-their-life Kellehear A. The end of death in late modernity, an emerging public health challenge. Crit Public Health 2007;17(1):71-79.

Does the 'Liverpool Care Pathway' facilitate an improvement in quality of care for dying cancer patients?

BACKGROUND: The Liverpool Care Pathway for the Dying Patient (LCP) aims to transfer hospice principles of care for dying patients to other health-care sectors. This post-bereavement survey explored the LCP's effectiveness in improving quality of care for cancer patients. METHODS: Postal self-completion questionnaires were sent to 778 next-of-kin to consecutive deceased patients who had died an 'expected' cancer death in a hospice and acute tertiary hospital. RESULTS: Following exclusions (n=53), 255 of the 725 next-of-kin agreed to participate (35.2% response rate). Overall hospice participants reported the best quality of care, and hospital participants, for whom care was not supported by the LCP, reported the worst quality of care. Multivariate analysis showed the hospice was an independent predictor for patients being treated with dignity (OR 8.46) and receiving adequate family support (OR 7.18) (P<0.0001). Care supported by the LCP and the hospital specialist palliative care team were both associated with good family support, but neither was an independent predictor. CONCLUSIONS: From the bereaved relatives' perspective, within the hospital, the LCP is effective in improving specific aspects of care, such as symptom control for dying patients. Further improvement is required, however, to attain the hospice standard of care.

Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects.

BACKGROUND: The benefits and burdens of artificial nutrition (AN) and artificial hydration (AH) in end-of-life care are unclear. We carried out a literature review on the use of AN and AH in the last days of life of cancer patients. MATERIALS AND METHODS: We systematically searched for papers in PubMed, CINAHL, PsycInfo and EMBASE. All English papers published between January 1998 and July 2009 that contained data on frequencies or effects of AN or AH in cancer patients in the last days of life were included. RESULTS: Reported percentages of patients receiving AN or AH in the last week of life varied from 3% to 53% and from 12% to 88%, respectively. Five studies reported on the effects of AH: two found positive effects (less chronic nausea, less physical dehydration signs), two found negative effects (more ascites, more intestinal drainage) and four found also no effects on terminal delirium, thirst, chronic nausea and fluid overload. No study reported on the sole effect of AN. CONCLUSIONS: Providing AN or AH to cancer patients who are in the last week of life is a frequent practice. The effects on comfort, symptoms and length of survival seem limited. Further research will contribute to better understanding of this important topic in end-of-life care.

How is agitation and restlessness managed in the last 24 h of life in patients whose care is supported by the Liverpool care pathway for the dying patient?

BACKGROUND: Guidance regarding the patient centred management of agitation and restlessness reinforces the importance of considering underlying causes, non-pharmacological approaches to treatment and judicious use of medications titrated to patient need. In contrast, recent reports in the literature suggest that the practice of continuous deep sedation until death is prevalent in the UK. AIM: To use data from the National Care of the Dying Audit-Hospitals (NCDAH) to explore the administration of medication for management of agitation and restlessness in the last 24 h of life. METHODS: Hospitals submitted data from up to 30 consecutive adult patients whose care in the final hours/days of life was supported by the Liverpool Care Pathway for the Dying Patient (LCP). Data on the total dose received in the last 24 h of life PRN and the last dose prescribed for administration via continuous subcutaneous infusion (CSCI) for agitation and restlessness were submitted. RESULTS: 155 hospitals provided data from 3893 patients. Median total doses in the last 24 h for midazolam, haloperidol and levomepromazine, respectively, were: PRN only, 2.5, 1.5 and 6.25 mg; CSCI only, 10, 3 and 6.25 mg; PRN+CSCI, 15, 3 and 12.5 mg. CONCLUSION: Only 51% of patients received medication to alleviate agitation and restlessness in the last 24 h of life. Median doses were low in comparison to doses recommended for continuous deep sedation, suggesting that there is no 'blanket' policy for continuous deep sedation at the end of life for patients whose care is supported by the LCP.

Recomendaciones de la Asociación Europea de Cuidados Paliativos (EAPC) para el Desarrollo de la Especialidad en Medicina Paliativa. Informe del Grupo de Trabajo de la EAPC para la Formación Médica / No disponible

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Symptom management for the adult patient dying with advanced chronic kidney disease: a review of the literature and development of evidence-based guidelines by a United Kingdom Expert Consensus Group.

Improvement in end-of-life-care is required for patients dying with chronic kidney disease (CKD). The UK government now recommends that tools such as the Liverpool Care Pathway for the Dying Patient (LCP) be used to enhance the care of those patients dying with CKD. The LCP was originally developed for patients dying with terminal cancer, however has been shown to be transferable to patients dying with heart failure or stroke. On this background, in 2005 a UK National Renal LCP Steering Group was formed. The aim was to determine whether or not the generic LCP was transferable to patients dying with CKD. An Expert Consensus sub-group was established to produce evidence-based prescribing guidelines to allow safe and effective symptom control for patients dying with renal failure. These guidelines were finalised by the Expert Consensus group in August 2007 and endorsed by the Department of Health in March 2008. A literature search on symptom control and end-of-life care in renal failure was performed. A summary of the evidence was presented at a National Steering Group meeting. Opinions were given and provisional guidelines discussed. A first draft was produced and individually reviewed by all members of the Expert Group. Following review, amendments were made and a second draft written. This was presented to the entire National Steering Group and again individual comments were taken into consideration. A third and fourth draft were written and individually reviewed, before the guidelines were finalised by the Expert Consensus group. Patients dying with advanced CKD suffer symptoms similar to patients dying of cancer. The Renal LCP prescribing guidelines aim to control the same symptoms as the generic LCP: pain, dyspnoea, terminal restlessness and agitation, nausea and respiratory tract secretions. The evidence for the production of the guidelines is discussed and how a consensus was reached. A summary of the guidelines is given and the complete guidelines document is available via the Marie Curie Palliative Care Institute, Liverpool website.

Reflecting the scope and work of palliative care teams today: an action research project to modernise a national minimum data set.

The Minimum Data Set (MDS) for UK specialist palliative care services was developed in 1995 to provide annual data on palliative care services. Data collected is used for local and national purposes including service management, monitoring and audit, the commissioning of services and the development of national policy. The emergence of Payment by Results and HealthCare Resource Groups, which will have an impact on the funding processes, together with identified limitations of the current MDS resulted in a project to revise the MDS. An action research approach was used for the project and had distinctive phases including modifying the MDS, a pilot phase and an expert panel consultation. Modifications to all the sections of the MDS and changes to terminology were made. The action research approach enabled revisions made based upon a national consensus and met the changing provision of specialist palliative care services for the UK.

The management of constipation in palliative care: clinical practice recommendations.

Constipation is one of the most common problems in patients receiving palliative care and can cause extreme suffering and discomfort. The aims of this study are to raise awareness of constipation in palliative care, provide clear, practical guidance on management and encourage further research in the area. A pan-European working group of physicians and nurses with significant experience in the management of constipation in palliative care met to evaluate the published evidence and produce these clinical practice recommendations. Four potentially relevant publications were identified, highlighting a lack of clear, practical guidance on the assessment, diagnosis and management of constipation in palliative care patients. Given the limited data available, our recommendations are based on expert clinical opinion, relevant research findings from other settings and best practice from the countries represented. Palliative care patients are at a high risk of constipation, and while general principles of prevention should be followed, pharmacological treatment is often necessary. The combination of a softener and stimulant laxative is generally recommended, and the choice of laxatives should be made on an individual basis. The current evidence base is poor and further research is required on many aspects of the assessment, diagnosis and management of constipation in palliative care.

Preparing for palliative medicine; evaluation of an education programme for fourth year medical undergraduates.

Prompted by directives from the GMC, 'care of the dying' is identified as 'core curricula' for undergraduate medical education. However, there are many technical and interpersonal challenges faced in learning the practice of palliative medicine. Accordingly, the design and delivery of education programmes need to be both carefully considered and evaluated. Using Bandura's Social Cognitive Theory as a driver, appropriate methodology for evaluating a novel education programme in palliative medicine was drafted. A pre- and post-survey of an education programme and palliative care placement for fourth year medical undergraduate students from Liverpool University (n = 216) was completed using a composite questionnaire containing; i) Self-efficacy in Palliative Care Scale (SEPC) and ii) Thanatophobia Scale. Both scales have shown reliability and validity within the sample population. Additionally, a randomly selected Focus Group was conducted to provide qualitative information on the students' experience. A total of 139 pre- and post-questionnaires (64%) were completed. Analysis identified significant improvements in perceived efficacy (SEPC Communication t = -16.41, P < 0.001; SEPC Patient Management t = -22.31, P < 0.001; SEPC Multidisciplinary Teamwork t = -15.56, P < 0.001). Significant improvements in thanatophobia were also recorded (z = -7.51, P < 0.001) although some interesting anomalies were noted. This study demonstrates that considered and appropriately structured clinical education has been shown to significantly improve students' belief in their ability to practice palliative medicine and to improve their attitude towards care. In accordance with the study's theoretical driver, it is reasonable to propose that the engaged active learning will have a positive effect on the future care of dying patients.

Assessment and management of fatigue in patients with advanced cancer: developing guidelines.

Cancer-related fatigue is one of the most important untreated symptoms of cancer, with a prevalence between 60 and 100%, but there has been a reluctance to prioritize fatigue and develop effective management strategies. The development of standards and guidelines will encourage a more systematic approach and help to stimulate further research. The Mersey Palliative Care Audit Group has developed guidelines for the assessment and management of fatigue. These guidelines were produced following a regional survey, which looked at both the educational needs of nurses, and the impact of fatigue on patients with advanced cancer.

A case of difficult pain in a patient with chronic renal failure and calciphylaxis.

A difficult pain occurred in a man with chronic renal failure as a result of the underlying condition of calciphylaxis. In this condition, calcification of small and medium-sized arteries occurs, which may result in ischemia and gangrene. In general, the prognosis is poor, with mortality rates ranging from 23-63%. Pain associated with this condition has been previously reported. In this report, the pain occurred in the lower limbs and penis, and was associated with local necrosis. The pain was observed to be significantly worse on dialysis. A multiprofessional approach to care ultimately resulted in good symptom control.

Care of the dying: setting standards for symptom control in the last 48 hours of life.

The hospice model of care of the dying patient is regarded as a model of excellence; however, outcomes of this care have been poorly demonstrated. Integrated Care Pathways (ICPs) provide a method of recording and measuring outcomes of care. The ICP document replaces all previous documentation and is a multiprofessional record of patient care. The aim of this study was to implement an ICP in an inpatient hospice setting in order to set standards of care for symptom control in the dying phase of a patient's life. ICPs were analyzed from 168 inpatients who died over a one-year period. Symptoms of pain, agitation, and respiratory tract secretions (RTS) were monitored every four hours by nursing staff as either present or absent. For each symptom, 80% of patients had one episode or complete control of the symptom, 10% had two episodes, and 10% had three episodes or more recorded. As death neared, there was a statistically significant increase in the number of patients whose pain was controlled. The ICP has provided a means to measure symptom control in the dying patient and set standards of care, which is integrated into clinical practice.

A survey of nursing and medical staff views on the use of cardiopulmonary resuscitation in the hospice.

Research evidence suggests that cardiopulmonary resuscitation (CPR) would be indicated in very few hospice patients. However, with the increasing access and expansion of specialist palliative care services the question of CPR is becoming more important. In order to develop a policy in our unit we felt it was important to assess the understanding, attitudes and experience of the health care professionals involved. A semi-structured questionnaire regarding CPR issues, including case scenarios, was distributed to doctors and registered nurses in a palliative care unit. Thirty-seven (80%) of the questionnaires were returned. Ten per cent of respondents identified patients for whom they felt CPR would have been indicated in the event of an unexpected cardiac arrest. Thirty-two per cent could foresee the number of patients in this category increasing in the future. The majority of respondents indicated that CPR should be discussed in certain cases, however 86% had never done so. The success rate of CPR was frequently overestimated. Some respondents felt vulnerable as there was no existing written policy. Factors thought important in making decisions regarding CPR orders included: prognosis; patient's wishes; quality of life; and legal issues. CPR in palliative care units raises many practical and ethical concerns. Our survey shows that staff are aware of the small, but increasing, need for its consideration in certain cases. There was a wide range of views regarding the role of CPR with an overestimation of the chances of success and concerns regarding discussion of the issue with patients. When introducing a CPR policy in a palliative care unit, adequate education and a framework for decision making is required.

The use of multidisciplinary consensus groups in the planning phase of an integrated problem-based curriculum.

In response to the General Medical Council's initiative to reform UK medical undergraduate education only a minority of medical schools have developed entirely novel curricula. Although the experiences gained by these schools in curriculum design and planning have not been recorded in the literature they are likely to be of interest to other medical schools still contemplating course revision. The medical school at the University of Liverpool recently launched an integrated problem-based course differing radically from its predecessor. The General Medical Council considered integration of contributing disciplines one of the most important aims of reform, yet courses that integrate independent component disciplines may be perceived by staff as threatening due to the loss of structure and disciplinary autonomy. Strategies for early course development must take account of these concerns as well as dealing with the identification of course content. A multidisciplinary consensus group process, designed to combat some of these problems, was employed to identify the learning objectives and core content for the new course. The purpose of this paper is to describe, first, the processes employed to identify the core palliative care component for a new PBL curriculum and secondly, how these objectives were integrated horizontally and vertically throughout all course elements.

Caring for patients with HIV disease: the experience of a generic hospice.

This study describes the experience of a generic hospice admitting people with advanced HIV disease over a 4-year period. Data were collected retrospectively for all patients with HIV disease admitted. The aim of the study was to review the number of referrals, the reason for referral, subsequent symptom control and multidisciplinary team involvement together with the outcome for these patients. Twenty-six patients were admitted for the first time. Two patients were female, 24 were male; median age was 36 years (range 25-58 years). Hospitals referred more patients than general practitioners (18 (70%) and 5 (20%) respectively), but most were from non-HIV specialist areas within hospitals (11 (42%)). The commonest reason for referral was locality, particularly in terms of ease of access. The most prevalent symptoms on admission were weakness, immobility and weight loss (77%, 73% and 62% respectively). These were not improved during admission. There was significant improvement in the control of other symptoms including pain, gastrointestinal disturbance, confusion and dyspnoea. Use of the full multidisciplinary team was high. Median length of stay was 19 days (range 1-77 days). Seventeen patients (65%) died on their first admission. This study confirms the high prevalence of symptomatology among patients with HIV disease. Many generic hospices can offer skilled multidisciplinary symptom control and psychosocial care, complementing other HIV specialist services. It is important that patients with HIV disease and specialist health care professionals working in the HIV field are made aware of what generic hospices are able to offer so that patients can make informed choices about their care.