Palliative care is an approach that improves the quality of life

1.1 Definition of Palliative care

According to the WHO, Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychological and spiritual.
Palliative care provides relief from pain and other distressing symptoms, affirms life and regards dying as a normal process, and intends neither to hasten nor to prolong death.2 Palliative care integrates the psychological and spiritual aspects of patients care, and offers a support system to help patients live as actively as possible until death. It also offers a support system to help the family cope during the patient’s illness and in their own bereavements. In many countries, the terms hospice and palliative care are used interchangeably to refer to the support provided to people with little or no prospect of cure.3
In the United States, a distinction is made between general palliative care and hospice care, which delivers palliative care to those at the end of life; the two aspects of care share a similar philosophy but differ in their payment systems and location of services. Whereas in the United Kingdom, this distinction is not operative; in addition to specialized hospices, non hospice-based palliative care teams provide care to those with life-limiting illness at any stage of the disease.
According to the Scottish Partnership for palliative care, palliative care is the term used to describe the care that is given when cure is not possible. The word comes from the Latin “palliatus”(covered or hidden with a cloak) and is used to mean “relieving without curing”.4 Although palliative care is historically associated with later stages of cancer, it is now established that palliative care should be a routine part of care for those living with and dying from a wide variety of non-malignant conditions, such as dementia, heart failure, Huntington’s disease, motor neurone disease, multiple sclerosis, muscular dystrophy, Parkinson’s disease, renal failure and respiratory failure among others.
General palliative care is an integral part of the routine care delivered by all health and social care professionals to those living with a progressive and incurable disease, whether at home, in a care home, or in hospital.4 Specialist palliative care is based on the same principles of palliative care, but can help people with more complex palliative care needs. Specialist palliative care is provided by specially trained multi-professional specialist palliative care teams and can be accessed in any care setting.
1.2 Public health context of palliative care
Public health approaches to palliative care have a valuable contribution to make in understanding and developing community capacity related to , dying, loss and care acknowledging that carers of the dying and bereaved are an important group who have their own significant needs in end -of-life care.5 Primary care has a vital role in delivering palliative care. 6,7 In most developed countries more people die in hospital than at home 8,although substantially more people would prefer to die at home.9 Primary care professionals play a central role in optimising available care, but they often lack the processes and resources to do this effectively.6,10 The Gold Standards Framework (GSF) for community palliative care 11 is a primary care led programme in the United Kingdom that is attracting international interest.7 The framework enables general practitioners and community nurses to optimise practice by providing guidance through workshops and locally based facilitation on how to implement processes needed for good primary palliative care. It is supported by a plethora of practical tools, guidance documents, and examples of good practice.12 It is regarded by many as “the bedrock of generalist palliative care”. GSF is recommended as best practice by the Department of health End of life care strategy, NICE, Royal College of General Practitioners, Royal College of Nurses and other major policy groups.
1.3 Care pathways in palliative care
A care pathway is a plan of how someone should be cared for when they have a particular medical condition or set of symptoms. There is increasing evidence that using an integrated care pathway to manage care at the end of life is good way to implement and monitor best practice, and to standardise care in a variety of care settings. The use of pathways to manage the care of dying patients has gained considerable support from the clinical teams who have used them, as there is evidence that use of such pathways improves the quality of care in the last days and hours of life. A number of end of life care pathways have been developed but the first and most well known is the Liverpool Care Pathway for the Dying Patients (known as the LCP).13
A number of other pathways are available in relation to supporting the care of dying patients:
– Pathway for Improving the Care of the Dying (PICD) (Australia)
– Palliative Care for Advanced Disease (PCAD) pathway (USA)
– Department of Veteran’s Affairs (DVA) Palliative Care Clinical Pathway (Australia)
– Gold Standards Framework (GSF) for community Palliative Care (UK)
– Preferred Priorities for Care Plan (PPC) (UK)
The Liverpool Care Pathway (LCP) is aimed at improving care and communication in the dying phase. In the UK, the LCP was developed to improve care for dying patients.14 The LCP was developed to take the best of hospice care into hospitals and other settings. It is used to care for patients in the last days or hours of life once it has been confirmed that they are dying. The LCP is designed to enable all healthcare workers to provide optimal care to dying patients, whether they are specialists in palliative care or not, by guiding clinical decision making. The LCP is a legal document which replaces the usual medical record at the end of life, and is structured to facilitate audit and outcome measurement.15 It promotes clear communication around the dying and death of the patient, and it supports psychosocial and spiritual care to the patients and their relatives, for example, by promoting adequate communication and support and giving relatives a brochure for bereavement after the death of the patient.15 The UK and 13 other countries are registered with the LCP Continuous Quality Programme. 16 In Scotland the LCP is applied by 12 of the 13 voluntary hospices; but only a quarter of district nurses reported in 2008 that they are currently using the LCP.17 In NHS Greater Glasgow and Clyde 37% of the GP practices, 33% of the nursing homes and 47% of the wards in the acute operating division are in the process of implementing the LCP.18
1.4 Pharmaceutical care context of palliative care
It is estimated that one in three people in the UK will develop cancer and one in four will die from it.19The survival rate for cancer is increasing with more patients being treated as day-case patients. The length of stay for in patients is also decreasing, therefore it is essential to ensure appropriate care continues in the community setting.20 Hepler and Strand defined pharmaceutical care as improves a patient’s quality of life.21 For pharmaceutical care to be successful, a quality system should be implemented to ensure appropriate patient outcomes. It is important that all pharmacy members of the healthcare team in different settings are included in the delivery of pharmaceutical care.22To ensure continuity of care, pharmaceutical care plans require to be updated when the patient’s needs change. Seamless care helps patients to move across healthcare boundaries without experiencing a gap in the standard of healthcare delivery, but this requires effective communication between primary and secondary care.23 In providing pharmaceutical care, pharmacists co-operate with doctors, patients and/or carers in designing, implementing and monitoring a “pharmaceutical care plan”. The pharmaceutical care provided aims to optimize drug treatment and achieve specified therapeutic outcomes. This has the potential to reduce drug-related problems and improve patient’s quality of life
To support the local delivery of chemotherapy, models of care need to be developed and remote models of care need to be developed and remote patient monitoring performed which is linked to an electronic health record.24 The use of an electronic record would undoubtedly improve seamless care. It is therefore essential that improvements are made in the transfer of pharmaceutical care. Over the past decade, there has been a large increase in the number of patients receiving cancer treatments and symptom relief treatments at day-case chemotherapy clinics25. With the increase in the prescribing of oral chemotherapy and the use of ambulatory intravenous pumps which allow patients to receive continuous chemotherapy at home, there is increasing need for hospital pharmacists to liaise more closely with general practitioners (GPs) and community pharmacists to explain unusual indications for a drug or unconventional dosage regimens. This liaison is needed to avoid incidents reported through the in-house reporting system such as inadvertent continuation of intended short courses of medication, for example, dexamethasone prescribed for three days as an anti-emetic after chemotherapy. There is a need for the required clinical monitoring to be undertaken in primary care to minimise risks associated with these medicines. It is essential that detailed information on monitoring requirements is conveyed from the day-case clinic to the patient’s GP and community pharmacist, so that both are aware of the therapeutic plan for the patient and management of potential toxicities and possible drug interactions.
Methods of transferring care require exploration and hence Julie Fisher et al,in their study examined and designed a documentation system to monitor pharmaceutical care between cycles of chemotherapy for patients who attended an oncology care unit.24 Their study confirmed a recognised need for continuity of pharmaceutical care between hospital and community pharmacists.
The Gold Standards Framework Scotland (GSFS) was introduced in 2003 and is an adapted version of the GSF for implementation within NHS Scotland. The Gold Standards Framework Scotland provides a means of improving the quality of care provided by primary care teams in the final year of a patient’s life. The main differences to the core GSF are : addressing the needs of patients from diagnosis onwards; maintaining a GSF palliative care register, and ; advanced care planning, defined as a process of discussion between an individual and their care providers about individual’s concerns, their preferences for types of care and their understanding of their illness and prognosis.26
Across Scotland, 75% of GP practices are registered as using the GSFS.17 As of 2009, 80%of GP practices in NHS Greater Glasgow and Clyde are signed up for the GSFS.18 The most recent development in 2009 has been the electronic Palliative Care Summary (ePCS). The ePCS allows, with patient or carer consent, the access to daily updated summary information from GP records for Out of Hours services and NHS 24. This facilitates structured and accurate information to be available in hours and out of hours to support palliative care patients and their families. The ePCS includes: prescribed medication, medication diagnosis, patients’ and carers understanding of prognosis, patient wishes about place of care and resuscitation.26, 18.
The UK department of Health has proposed that Primary Care Trusts across England should invest in pharmaceutical care services giving patients access to more help from pharmacists in using their medicines.27 Evaluation of pharmacists’ interventions has shown that they can make a valuable contribution in secondary care settings such as hospices and hospitals.28 Lucas et al found that more than 60% of pharmacists’ interventions in an inpatient palliative care unit could significantly improve patient care.29 The pharmacist advised on the appropriateness of medication regimens, side effects and contraindication of medication and provided drug and prescribing information to patients and staff. Despite being perhaps the most accessible healthcare professional, there is limited research into the possible contribution of community pharmacists to community-based palliative care in the UK. A recent review showed that the delivery of palliative care to patients in the community is far from ideal.30 Inadequacies in knowledge and training of professional currently providing palliative care to patients at home may prevent the patient receiving optimum pain and symptom control.31, 32 Fragmentation and poor organisation of current palliative care services may result in a loss of continuity of care for such patients or hinder the timely availability of appropriate medication.33,34 Poor communication within existing teams and across organizational boundaries also limits the provision of effective palliative care to patients in the community.35,36 If community pharmacists were included in the local network of healthcare professionals, this would benefit all parties, especially patients and carers, and it would help to share the over-increasing work load in palliative care, due in part to an aging population. Needman et al, 37 assessed the effectiveness of community pharmacists’ clinical intervention in supporting palliative care patients in primary care using an independent multi-professional panel review. In their study, they suggested that when trained community pharmacists are included as integral members of the multi-professional team, they can intervene effectively to improve pharmaceutical care for palliative care patients in the community, providing additional support for them to remain at home; because majority of palliative care patients spend most of their last year at home under the care of their GP and the primary care team.38 It is only when the community pharmacist knows and have the details of the patient’s medical condition and prognosis , that she is able to suggest new therapies or to titrate existing ones. Unfortunately in the present UK community pharmaceutical services system, the community pharmacists are unlikely to know the medical diagnosis of the patients or other essential clinical details.39, 40 As a result, community pharmacists in general are unable to make full use of their knowledge and expertise or to anticipate problems and advice on them. The recent NHS pharmacy plan advocates that personal medicine management services should be provided by community pharmacists in the future.27
The study of Needman et al showed that the personal palliative pharmaceutical care services are feasible in everyday practise when community pharmacist is included in the multidisciplinary palliative care team.37
In 2002, the Scottish Government through its publication “The Right Medicine: A
strategy for pharmaceutical care in Scotland”, proposed a better use of pharmacists’ professional competence in planning and delivering services, especially in priority areas such as cancer, heart disease and mental health.41This policy document placed emphasis on the continued development of Pharmaceutical Care Model Schemes including palliative care, initiated in 1999 in collaboration with the Royal Pharmaceutical Society in Scotland. This work has developed and now all NHS Boards have developed Community Pharmacy Palliative Care Networks. Access to specific palliative care medicines within and out with working hours via this network is quality standards in all NHS Board areas.42 Within the NHS Greater Glasgow and Clyde area 71 of the current 312 pharmacies are involved in the Community Pharmacy Palliative Care Network. This network was established in 2001 and is funded by NHS Greater Glasgow and Clyde18, 43, 44. The purpose of the project is to increase awareness of the community pharmacist’s role, their capacity to manage patients requiring cancer and palliative care support, reduce risks and effectively manage anticipatory care needs to minimise out of hours issues. The services of the network pharmacies includes: retailing a stock of more specialized medication which may be required for palliative care; a courier service for transport of urgent prescriptions and medicines, and ; provision of advice and support to other pharmacies, GPs and district nurses.
In 2006, a new community pharmacy contract was agreed with the Scottish Government to modernise community pharmacy practice and to support the delivery of pharmaceutical care. The contract is based on four core services, namely the acute medication service, the minor ailment service, the public health service and chronic medication service (CMS) 45 of which palliative care is one. The Chronic Medication Service (CMS) will also require patients to register with a pharmacy. It will enable a pharmacist to manage a patient’s long-term medication for up to 12 months. Under this service, a patient can have his or her medicines provided, monitored, reviewed and, in some cases, adjusted as part of a shared care agreement between the patient, the GP and the community pharmacist. It is in this service that an emphasis on the systematic approach to pharmaceutical care is particularly apparent; it will incorporate the pharmaceutical care model schemes, serial dispensing and supplementary prescribing.
In October 2008, the Scottish Government published “Living and Dying Well in Scotland. ‘Living and Dying Well’ is the first plan for the development of a single, cohesive and nationwide approach to ensure the consistent, appropriate and equitable delivery of high quality and person centred palliative care based on neither diagnosis nor prognosis but on patient and carer needs. The concepts of assessment and review, planning, coordination and delivery of care, of communication and information sharing and of appropriate education and training are addressed in this Action Plan. The Action Plan states that NHS Boards and Community Health Partnerships (CHPs) should take steps to ensure that patient with palliative care needs are included in a palliative care register and are supported by a multidisciplinary team. The Action Plan also emphasises the importance of proactive care planning and anticipatory prescribing to aid the prevention of unnecessary crisis and unscheduled hospital admissions, particularly out of hours. This also includes the planning for stages of illness trajectories that are likely to produce changing patient needs in the future.
Key to the progress of “Living and Dying Well” is its emphasis on a person centred approach to care and care planning and on the importance of communication, collaboration and continuity of care across all sectors and all stages of the patient journey. In order to fully realise the necessary improvements in palliative and end of life care, NHS Boards should review their projects the “Living and Dying Well” actions and the actions set out in Living and Dying Well: Building on Progress – with particular priority on the following areas.
– Early identification of patients who may need palliative care
– Advance / Anticipatory Care Planning (ACP)
– Palliative and end of life care in acute hospitals
– Electronic Palliative Care Summary (ePCS)
– Do not Attempt Cardiopulmonary Resuscitation (DNACPR)
1.5 Transfer of information in Palliative Care
Access to specialist palliative care services must be more consistent across Scotland, according to a report published by Audit Scotland.17 Audit Scotland investigated the provision of specialist and general palliative care in all NHS board areas. It found a significant variation in the availability of specialist palliative care services and in the ease with which patients can access services.46 Although community pharmacists’ provision of palliative care medicines was not specifically reviewed by the audit, the report notes: “NHS boards reported that provision was well organised through the national community pharmacy scheme”
Many people, who are terminally ill, do prefer to spend their last days in their own homes. It is therefore, essential that these patients have easy access to care and medicines that can help them if their condition were to change rapidly or deteriorate suddenly at night or during the weekend (as is common in terminal illness). However, the provision of out-of-hours specialist palliative care and the availability of palliative care medicines in the community can present major problems.
Communication between professionals and patients/carers is an important aspect of palliative care in any setting. However, effective communication and co-ordination between professionals, especially across organisational boundaries, systems and structures, can play an even more crucial role in ensuring the quality of care and enhancing patient and carer experience. According to “Living and Dying well” in Scotland the aim of communication and co-ordination is
– to ensure that all patients and carers with palliative and end of life care needs are supported to participate fully in developing care plans and making decisions about their care
– to ensure that their needs are communicated clearly across care settings and systems to all professionals involved
– to ensure that the care of all patients and carers with palliative and end of life care needs is co-ordinated effectively between specialists and across care settings and sectors.
The transfer of appropriate information between care settings, including out of hours services and NHS 24, could be improved, and is known to have particular significance for those with palliative and end of life care needs. The Scottish Government is therefore facilitating development of an electronic Palliative Care Summary (ePCS) which is developed from the Gold Standards Framework Scotland Project 47 and is based on the Emergency Care Summary. The ePCS will, with patient and carer consent, allow automatic daily updates of information from GP records to a central store, from where they will available to out of hours services, NHS 24 and Accident and Emergency service. The ePCS is currently being piloted in NHS Grampian, and subject to successful evaluation, will be rolled out nationally from 2009. NHS Quality Improvement Scotland is currently developing National Key Performance Indicators for palliative care which address out of hours issues. The timely sharing of information between primary and secondary care, especially at times of admission and discharge and including transfer between home, care homes and hospitals remains a challenge to be addressed.46 The ePCS now provides a helpful framework for identifying the type of information from assessments and care pans which should be shared. NHS Boards will be expected to ensure, by whatever means are locally available, the availability over 24 hours of such information to all relevant professionals.
1.6 Electronic Palliative Care Summary
The ePCS builds on the Gold Standards Framework Scotland project and the Emergency Care Summary (ECS). The ePCS will, with patient /carer consent, allow automatic daily updates of information from GP records to a central store, from where they are available to Out Of Hours (OOH) services, NHS 24, Acute Receiving Units, Accident Emergency Departments and shortly to the Scottish Ambulance service. The ePCS is now in use in over 23% of practices across 11 Health Board in Scotland.48 The electronic Palliative Care Summary (ePCS) allows practices to: replace the fax form used to send patient information to out of hours services, clearly see essential information on patient with palliative care needs, view or print lists of patients on the practice Palliative Care Register, set review dates to ensure regular review of patients. The information allows practises to build up Anticipatory Care Plans which may include:
– medical diagnoses as agreed between GP and patient
– patient and carer understanding of diagnosis and prognosis
– patient wishes on preferred place of care and resuscitation (DNAR)
– information on medication and equipment left in the patient’s home “just in case”
– current prescribed medication and allergies, as per the Emergency Care Summary (ECS).
ePCS needs to be developed to meet the needs of palliative care patients. This will require electronic transfer of appropriate information across care settings and to be accessible by recognised healthcare workers supporting patient care. This project will review the development to date of relevant electronic transfer systems.
2. Aim and Objectives
Describe current pharmaceutical care provision and make recommendations for electronic transfer of information through evolving palliative care summaries.
2.1 To conduct an extensive literature review to establish current published work as a baseline for describing information summaries to support pharmaceutical care of palliative care patients.
2.2 To describe relevant information summaries in current practice.
2.3 To describe current information transfer across care settings.
2.4 To identify developments in electronic transfer of care summaries and make recommendations on data fields to support information transfer based on evidence.
2.5 To make recommendations to support an electronic palliative care summary (ePCS) for use by pharmacists in different settings providing pharmaceutical care to palliative care patients.
3.1 Description of literature searching
A literature search was conducted in order to identify relevant previous work and experiences in the transfer of information in palliative care to support pharmaceutical care of such patients. The findings are presented in the introduction.
For the outline literature review the biomedical database MEDLINE was accessed and browsed via University of Strathclyde library services. The search was carried out using both MeSH (Medical Subject Headings) vocabulary and plain search terms, either individually or in different combinations. The inclusion criteria comprised articles published between 2010 and around 2000 and publications in English Language.
The following search terms were mainly considered.
Palliative careEnd of life careCancerChronic disease management
Pharmaceutical care provisions
United Kingdom
Qualitative research
Out-of-hoursPharmaceutical carePharmaceutical serviceCommunity pharmacyPharmacist
Patient care
Electronic palliative care summaries
In addition, the Google search engine, PubMed, the Google scholar database indexing full texts of scientific literature and the search engine Bing from Microsoft were used and the web pager of several journals like the Pharmaceutical Journal, Palliative Care Journals, Palliative Medicine Journal, British Journal of General Practise, and the British Medical Journal were reviewed applying the same key words. In addition, the websites of a number of professional organisations such as NHS Scotland, NHS 24, and NHS Boards across Scotland, Scottish Government, Community Health and Care Partnerships, Audit Scotland, the Scottish Partnership for Palliative Care and the World Health Organisation were searched for government policy documents relating to palliative care.
3.2 Identification of current practice
Face to face interviews and group meetings and telephone discussions were also deployed in this research work. Group meetings were held with the University team of the Macmillan Pharmacist Facilitator Project, head of pharmacy of NHS 24, a district nurse as well as a palliative care link nurse. The meetings helped as appropriate tools of information due to the fact that they enabled the participants to describe and talk freely about their experiences while retaining a focus on the subjects of interest. A method that facilitates the expression of criticism and the suggestion of different types of solutions is invaluable when the aim is to improve services.49
3.3 Current information transfer to support practice
The head of pharmacy of NHS 24 advised making contact with district nurses or palliative care nurses and the need for them to participate in face to face interviews. The actual recruitment of one district nurse was co-ordinated by a Macmillan Pharmacist Facilitator and the palliative care link nurse agreed to a telephone conversation to capture clinical care issues arising as part of their daily practice.
The services provided to patients out-of- hours (OOH) are an essential part of palliative and end of life care, and the issues relating to OOH service provision were of paramount relevance in this research work. The recent changes to the General Medical Services (GMS) contract shifted the responsibility for OOH service provision from GP practices to NHS Boards. This has changed the way in which patients access care outside normal working hours. The establishment of NHS 24 has introduced a new model where 24-hour telephone advice is the single point of access to all OOH services. Patients are now unlikely to receive OOH care from a doctor who knows them and the importance of continuity to palliative care patients means that they are likely to be particularly affected by these changes.50More recently, the establishment of centralized services (NHS Direct in England and Wales, NHS 24 in Scotland) present a new model 24-hour telephone advice that will be the single point of access to all OOH services, even in rural areas. The intention is to benefit patients and carers by offering simple and convenient access to advice and effective triage, so that appropriate care can be delivered quickly and efficiently.51 Responsibility for healthcare is been transferred from GPS to local primary care organisations, which are currently setting up new unscheduled care services. There has been a progressive shift in the locus of care from the home and local general practices to more distant emergency clinics or telephone advice.52 An understanding of the needs and experiences of palliative care patients and their carers is essential to ensure that OOH care is effect as well as efficient.
Alison Worth et al, in their qualitative study of OOH palliative care, explored the experiences and perceptions of OOH care of patients with advanced cancer, and with their informal and professional carers.50 this study made explicit the barriers experienced by palliative care patients and their carers when accessing care. The importance of good anticipatory care particularly provision of information to patients and carers along with regularly updated handover forms sent to OOH services, was identified as key by both patients and professionals. Professionals described the barriers to achieving individualised patient care and the problem posed by competing priorities, but saw potential for improvements through an expansion of OOH resources, particularly nursing and supportive care. Worth et al, compared their study to previous studies which suggested that good anticipatory care, particularly provision of information to patients and carers about sources of help OOH, and what to expect from services, helps maintain care at home and manage patients’ and carers’ expectations of services.53,54According to Worth et al, GPs and district nurses wanted 24-hour access to specialist palliative care advice on symptom management and medication use.55Access to palliative care drugs and advice via a community palliative care pharmacy network is a quality standard in Scotland.42
Many people who are terminally ill want to spend their last days in their homes. For this reason therefore, these patients should have easy access to care and medicines that can help them if their condition change rapidly or deteriorate suddenly at night or during the weekend. However, the provision of out-of-hours specialist palliative care and the availability of palliative care medicines in the community can present major problems. Palliative care medicines are only readily available during normal working hours, Monday to Friday. Feelings of uncertainty and anxiety can be heightened in patients and carers, particularly OOH, if there is no easy access to familiar sources of professional help and advice or to the medicines needed to control symptoms that commonly occur in the terminal phase of a disease.11
The “just-in-case” six-month pilot study which was set up in three areas of the Mount Vernon Cancer Network was aimed to avoid distress caused by inadequate access to medicines OOH by anticipating pharmaceutical needs stemming from new or worsening symptoms; and prescribing medicines to be used on a “just-in-case” basis. The initiative was intended to support the “Gold Standards Framework”, a programme that aims top develop a practice-based system to improve the organisation and quality of care for patients in their last 12 months of life.56 the “just-in-case” box (blue plastic hobby box-27x20x10cm) where medicines were stored at the patient’s home. The prescriptions reflected the individual needs of each parient and were written up in the patient’s notes and on an administration sheet used only for anticipatory or when required medicines. An approved list of medicines for symptom control in patients in the terminal phase of an illness was made available through the Liverpool Care Pathway for the dying patient15, 57 and this was adopted for the pilot. As a result, the medicines usually supplied on a “just-in-case” basis were diamorphine (for pain), midazolam (for agitation), cyclizine, haloperidol or levomepromazine (for nausea or vomiting), glycopyrronium or hyoscine hydrobromide (for respiratory secretions).
Information transfer in palliative care is currently underdeveloped because most of the information is within the decision of the GP. Presently NHS 24 does not have access to patients’ medical records. Anytime a call is made to NHS 24, a record is made, a previous contact is seen and all reports are documented as well as the resources and advices used in the past. However, from May 2007, all NHS 24 centres are now able to access a patient’s Emergency Care Summary (ECS) provided patient’s consent is first obtained.
The Emergency Care Summary (ECS) is a relatively new system which allows information on a patient’s medication and allergies to be automatically extracted from their GPs records. The security around accessing ECS is very strict and any time an access is made, it is logged so as to know who has been seeing it and this is especially doctors. The NHS 24 has access to ePCS but there is nothing on the ePCS that mentions medicines and that element of pharmaceutical care is missing in the ePCS.
Legislation was introduced throughout the UK in 2000, which provided the framework for the supply and administration of medicines without the need for an individual prescription.
This framework was Patient Group Directions (PGDs).
According to NHS Education for Scotland (NES), a Patient Group Direction (PGD) is a written instruction for the sale, supply and /or administration of named medicines in an identified clinical situation.58 It applies to groups of patients who may not be individually identified before presenting for treatment.
Before now, out-of-hours GP care in England, Denmark and the Netherlands has been reorganised and the Netherlands has been reorganised and is now provided by large scale GP co-operatives. Adequate transfer of information is necessary in order to assure continuity of care, which is of major importance in palliative care. Schweitzer et al, conducted a study to assess and investigate the availability, content and effect of information transferred to the GP co-operatives.59 According to their study, GPs in the UK were satisfied with the palliative care provided by their out-of-hours co-operatives, but satisfaction was less for inner city GPs who had concerns about the continuity of care.60 District nurses reported less satisfaction, especially with the quality of the advice, the reluctance to visit, and difficulties in obtaining medication.61 In their study , the total number of palliative care phone calls was 0.75% of all calls to the GP co-operative. Information was transferred and the content consisted mainly of clinical data. It was also found that half of the calls regarding palliative care resulted in a home visit by the locum, and that medication was prescribed in 57%of all palliative care calls. According to this study, a report from the UK stated that a lack of information can lead to problems in symptom control and an increase in unnecessary hospital admissions.62 This study recommended that GP co-operatives needed to develop and implement an effective system of patient information management. The potentials for improvement in the end-of-life care that is provided by the GP co-operatives was a factor of information transfer especially if an electronic patient file is accessible during the out-of-hours period, and this should contain information that is of relevance to locums.
The two nurses who took part in the interviews suggested that the service provided for palliative care patients has improved a great deal over the past few years especially with the introduction of the Gold Standards Framework Scotland. An integral part of this improvement was said to be the anticipation of patients’ possible future needs [by the development of Anticipatory Care Plan (ACP)], so that the essential equipment and drugs are either already in place when they become necessary or else can be obtained without delay. This act was identified as reducing the need to call the local out-of-hours GP services over the weekend or in the evenings. The district nurse explained that patients and their carers/family were given details of how to contact the evening or night nursing service who was on call and when one action/plan was carried out the next nurse who is giving care to the patient is able to see what the previous nurse had done. This was done with the use of a “mobile computer”. The palliative care link nurse explained that the ePCS was not accessible by nurses yet but this is being looked into by GPs but nurses who needed access were allowed by their GPs.
During out-of-hours, GP practices cannot provide essential services and general management to patients who are terminally ill. Following an independent review of GP out-of-hours services, Primary Care Trusts (PCTs) are also responsible for developing a more integrated out-of-hours system. (Carson Review). The Carson review envisaged that the needs of palliative care patients will be identified in advance noted on the NHS Direct database and passed directly without triage to the service they needed.63This followed from recommendations that transfer of information between GPs and their out-of-hours provider is essential to ensure continuity of care 62, thus forming one of the current GP co-operative accreditation standards.64 Burt J et al, conducted an audit across four co-operatives to assess progress of continuity of care within primary palliative care in England.61Across these four co-operatives, there were 279 palliative care-related calls (2.1% of all calls), form 185 patients during the audit month. The co-operatives held handover information for between 1 (12%) and 13 (32.5%) of these patients. Co-operative doctors had information about previous co-operative contacts for 7.5-58.1% of repeat calls. Three co-operatives faxed details of every palliative care contact to the patient’s GP the following morning, one did so for only 50% of calls. This system of alerting the co-operatives to the needs of palliative care patients was under-utilized. Even within the most frequently used systems, the diagnosis, prognosis and care preferences of two thirds of patients with palliative care were not made known to the co-operatives.
5. Discussion
Information that encourages appropriate use of out-of-hours services needs to be made accessible for all patients and carers. Primary care professionals and community palliative care specialists share responsibility for advising patients and carers on how to seek help out-of-hours. Practices and primary care organisations need to develop and audit effective systems of patient information management and transfer. These could be included in quality standards. Reviewing the way calls are handled by NHS 24, in addition to their factual content, offers opportunities for communication difficulties to be highlighted and included in staff development. Effective out-of-hours community palliative care requires an integrated, multidisciplinary service that is able to respond to planned and acute needs. Continuity of care may be personal, informational or managerial, the latter implying a consistent and coherent approach responsive to the patient’s changing needs.63 In the context of current primary care provision, personal continuity of care is increasingly unlikely to be provided out-of-hours, but informational and management continuity, supplemented by good communication, may suffice.
There is a relative lack of communication and joint working between all health care professionals involved in the care of patients with palliative care needs and this is a major issue affecting the effective delivery of services. Since the district nurses are the professional seeing the patients more regularly, they are an important resource and a vital link person and pharmacists could consult them for information about a patient’s clinical condition or for clarification of problems caused by incorrect or incomplete prescriptions. As at January 2011, the ePCS is now in use in over 32% of practices across 11 Health Boards in Scotland. All three GP IT systems have software for recording ePCS information which is updated automatically to ECS when any changes are made. ePCS is the available to all out-of-hours-and unscheduled care users who already have access to ECS. The information in the ePCS is recorded in the GP system to form an Anticipatory Care Plan which will be available out-of-hours and includes medical diagnoses (as agreed between the GP and patient), patients and carers’ understanding of diagnosis and prognosis, patient wishes {preferred place of care and resuscitation (DNACPR)}, information on medication/equipment left in patients’ home “Just in Case and prescribed medication (this includes all repeat and last 30 days acute and allergies as per ECS. Though the patients’ medicines are not described in detail, that element of pharmaceutical care is not present on this current ePCS. (Appendix 1). The reason for this may be because of a skills gap for instance, independent prescribers might be few in this clinical area. The way pharmacists can adjust medicines as part of an agreement in the delivery of care to palliative care patients should be included in the ePCS.
Boards across Scotland are aligning the rollout of ePCS with their plans for moving GP IT systems from GPASS to either InPs Vision o EMIS and local champions in Greater Glasgow and Clyde and Dumfries and Galloway have encouraged uptake of ePCS. Work is at early stages in Ayrshire & Aran, Fife, Orkney and Western Isles. Shetland is planning to start the rollout shortly. Grampian has completed connection for all EMIS and Vision practices and further rollouts will start shortly. Lothian has been using ePCS for a year, and is now planning how to maintain usage and encourage the remaining practices. Lanarkshire have a good uptake in Gpass practices and are awaiting the completion of the Gpass to InPs Vision migrations before wider rollout is commenced. Scottish Ambulance Services (SAS) is now piloting the use of ECS and ePCS in Lothian.48
According to Burt et al, co-operative doctors were required to provide care in a range of complex and time-consuming cases, including during the last days and hours of a patient’s life, with little or no information. Continuity of care within co-operatives was frequently threatened by a lack of information about previous contacts to the service by a patient.61 Within the present and new integrated out-of-hours systems, the effective transfer of patient information between all providers will be critical if palliative care patients and other vulnerable groups are to receive the care they need, especially where GPs opt out of providing out-of-hours care. Electronic patient records may provide a solution, although concise, up-to-date information will be needed and as services move to a more integrated approach (ePCS), a careful scrutiny of information transfer systems and encouragement of providers such as GPs and district nurses to update information, may help to ensure better continuity of care.
The current ePCS (see Appendix I) describes the patient’s medical conditions (current drugs and doses, and additional drugs available at home); the current care arrangements (syringe driver at home); the extent to which patients and carers understands the present condition of the patient and the advice for out-of-hours care. According to “Living and Dying Well 46, there is a need for communication and co-ordination between all professional who are involved in providing care to palliative care patients. This will help ensure that all patients and carers with palliative and end of life care needs are supported to participate fully in developing care plans and making decisions about their care. To ensure that their needs are communicated clearly across care settings and systems to all professional involved. To also ensure that the care of all patients and carers with palliative and end of life care needs is co-ordinated effectively between specialities and across care settings and sectors. The introduction of more joint out-patient clinics for example the joint respiratory/palliative care out-patient clinic at Victoria Infirmary in Glasgow should be encouraged.
6. Conclusion
Although the electronic Palliative Care summary (ePCS) is being rolled out in almost all Health Boards across Scotland, there are still some areas of care delivery that needs to be improved in palliative care especially during out-of-hours. A model needs to be fashioned out to enhance what the next step in the delivery of palliative care should be. If anything is done by one member of the palliative care team, other members need to know within the shortest time possible. The pharmacist who is an important member of the team, at the moment do not have access to the ePCS, this area needs to addressed. There is also need to use the new and emerging technology in the delivery of unscheduled healthcare, for instance strategic frontline application, which means upgrading the current IT and telephoning capability as well the potential for video conferencing in pharmacies. In current practice special notes (a flag facility that can be attached to a patient’s CHI number by GPs) used by GPs can be replaced by special texts in palliative care practice.
Calls to out-of-hours through NHS 24 can also be by video calls and texts as this enhances telephone assessments especially in palliative care. Development of specialized care plans should also be encouraged. There should be equitable access to a range of health care professionals and support staff across the UK and this may well demand additional resources, particularly for district nurses. Partnership working with non-statutory palliative care providers should also be enhanced. Specialist palliative care telephone advice to unscheduled care services, including access to a consultant in palliative medicine, may need to be delivered through extended rotas in areas where there is a shortage of specialists. The ePCS should be able to provide more pharmaceutical care provision to patients.

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