Juliet Spiller

The experiences of caregivers of patients with delirium, and their role in its management in palliative care settings: an integrative literature review.

To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.

Many people in Scotland now benefit from anticipatory care before they die: an after death analysis and interviews with general practitioners

Background Key Information Summaries (KIS) were introduced throughout Scotland in 2013 so that anticipatory care plans written by general practitioners (GPs) could be routinely shared electronically and updated in real time, between GPs and providers of unscheduled and secondary care. Aims We aimed to describe the current reach of anticipatory and palliative care, and to explore GPs’ views on using KIS. Methods We studied the primary care records of all patients who died in 2014 in 9 diverse Lothian practices. We identified if anticipatory or palliative care had been started, and if so how many weeks before death and which aspects of care had been documented. We interviewed 10 GPs to understand barriers and facilitating factors. Results Overall, 60% of patients were identified for a KIS, a median of 18 weeks before death. The numbers identified were highest for patients with cancer, with 75% identified compared with 66% of those dying with dementia/frailty and only 41% dying from organ failure. Patients were more likely to die outside hospital if they had a KIS. GPs identified professional, patient and societal challenges in identifying patients for palliative care, especially those with non-cancer diagnoses. Conclusions GPs are identifying patients for anticipatory and palliative care more equitably across the different disease trajectories and earlier in the disease process than they were previously identifying patients specifically for palliative care. However, many patients still lack care planning, particularly those dying with organ failure.

Emergency care and resuscitation plans

#### What you need to know When a person’s heart or breathing stops and the cause is reversible, immediate cardiopulmonary resuscitation (CPR) offers a chance of life. However, when a person is dying—for example, from organ failure, frailty, or advanced cancer—and his or her heart stops as a final part of a dying process, CPR will not prevent death and may do harm. “Do not attempt CPR” (DNACPR) decisions were first documented in the 1970s, to try to protect people from receiving CPR that they did not want, that would not work, or would not give them overall benefit. This approach of making CPR decisions separately from decisions about other treatments has been challenging for clinicians and patients and has caused problems.1 2 3 4 Despite national guidance in the UK (see “Further educational resources” box), misunderstandings, poor communication, and inconsistent DNACPR documentation persist.4 Exploring and achieving a shared understanding among patient, family, and healthcare team of realistic and individualised care preferences may sometimes be done badly or not even attempted. Here we draw on evidence (box 1), collated for a broader project, to outline how clinicians might plan with their patients. We offer suggestions on how clinicians and their patients might better think ahead, consider, discuss and record patient-centred recommendations, not only about CPR but also other elements of emergency care …

Palliative and end-of-life care research in Scotland 2006–2015: a systematic scoping review

BackgroundThe Scottish Government set out its 5-year vision to improve palliative care in its Strategic Framework for Action 2016–2021. This includes a commitment to strengthening research and evidence based knowledge exchange across Scotland. A comprehensive scoping review of Scottish palliative care research was considered an important first step. The aim of the review was to quantify and map palliative care research in Scotland over the ten-year period preceding the new strategy (2006–15).MethodsA systematic scoping review was undertaken. Palliative care research involving at least one co-author from a Scottish institution was eligible for inclusion. Five databases were searched with relevant MeSH terms and keywords; additional papers authored by members of the Scottish Palliative and End of Life Care Research Forum were added.ResultsIn total, 1919 papers were screened, 496 underwent full text review and 308 were retained in the final set. 73% were descriptive studies and 10% were interventions or feasibility studies. The top three areas of research focus were services and settings; experiences and/or needs; and physical symptoms. 58 papers were concerned with palliative care for people with conditions other than cancer – nearly one fifth of all papers published. Few studies focused on ehealth, health economics, out-of-hours and public health. Nearly half of all papers described unfunded research or did not acknowledge a funder (46%).ConclusionsThere was a steady increase in Scottish palliative care research during the decade under review. Research output was strong compared with that reported in an earlier Scottish review (1990–2005) and a similar review of Irish palliative care research (2002–2012). A large amount of descriptive evidence exists on living and dying with chronic progressive illness in Scotland; intervention studies now need to be prioritised. Areas highlighted for future research include palliative interventions for people with non-malignant illness and multi-morbidity; physical and psychological symptom assessment and management; interventions to support carers; and bereavement support. Knowledge exchange activities are required to disseminate research findings to research users and a follow-up review to examine future research progress is recommended.

‘Do Not Attempt Cardiopulmonary Resuscitation’ discussions at the point of discharge: a case note review of hospice practice following local integrated policy implementation

Background An integrated ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) policy was implemented across Lothian in 2006 (for ease of reading the terminology ‘DNACPR’ has been used throughout the paper where the original Lothian Policy used ‘DNAR’). Patients were, for the first time, able to be discharged home with their DNACPR form after discussion about cardiopulmonary resuscitation (CPR). Aims To ascertain the number of patients who, following a discussion, were discharged with a DNACPR form and the reasons for not holding discussions with certain patients. Methods Two retrospective case note reviews of 50 patients discharged over two 4-month periods (2007 and 2009). Results There was a high proportion (78–80%) of CPR discussions for patients discharged from the hospice. Reasons for not discussing CPR were: potential for excess distress (10–12% 2007 and 2009) and lack of time (4% both years). Of those discussing CPR on discharge, 90% took forms home in both years. The reasons patients did not take forms home were: form not taken in error (two patients in 2007); patients refusing a form at home (one and three patients in 2007 and 2009); form to be arranged by general practitioner and one incomplete discussion. The proportion of patients with forms already at home increased from 10% (2007) to 28% (2009). Conclusion It is possible to discuss CPR with a high proportion of hospice patients prior to discharge from a hospice. Following the introduction of an integrated policy, more patients have DNACPR forms prior to admission. Most patients receiving specialist palliative care find DNACPR discussions acceptable and understand the benefits of having a DNACPR form.

What does ‘complex’ mean in palliative care? Triangulating qualitative findings from 3 settings

BackgroundComplex need for patients with a terminal illness distinguishes those who would benefit from specialist palliative care from those who could be cared for by non-specialists. However, the nature of this complexity is not well defined or understood. This study describes how health professionals, from three distinct settings in the United Kingdom, understand complex need in palliative care.MethodsSemi-structured qualitative interviews were conducted with professionals in primary care, hospital and hospice settings. Thirty-four professionals including doctors, nurses and allied health professionals were recruited in total. Data collected in each setting were thematically analysed and a workshop was convened to compare and contrast findings across settings.ResultsThe interaction between diverse multi-dimensional aspects of need, existing co-morbidities, intractable symptoms and complicated social and psychological issues increased perceived complexity. Poor communication between patients and their clinicians contributed to complexity. Professionals in primary and acute care described themselves as ‘generalists’ and felt they lacked confidence and skill in identifying and caring for complex patients and time for professional development in palliative care.ConclusionsComplexity in the context of palliative care can be inherent to the patient or perceived by health professionals. Lack of confidence, time constraints and bed pressures contribute to perceived complexity, but are amenable to change by training in identifying, prognosticating for, and communicating with patients approaching the end of life.

Improving access to the KIS in secondary care

BackgroundEffective communication of anticipatory care planning (ACP) discussions between patients and general practitioners across different healthcare settings is vital. In Scotland, the Key Information Summary (KIS) is a new piece of software that allows clinical data for selected patients to be shared electronically across the wider National Health Service from the primary care record. This can include details of ACP discussions and decisions. The KIS is now routinely accessible in secondary care and is available through the hospital electronic record in two formats (abbreviated and full versions). AimThe primary aim of this project was to significantly improve clinician access to the full KIS record within secondary care. MethodsFour Plan Do Study Act (PDSA) cycles were undertaken in total to improve access to the full KIS between October 2014 and March 2016 in the Medical Admissions Unit of a Scottish hospital. ResultsBaseline data showed poor awareness and use of available KIS information by clinicians for patients admitted to hospital. Most were unaware the KIS was available and only 19% had seen the KIS for their patient. Where a KIS existed for a patient, clinicians felt the information contained within it was useful in 75% of cases, and one in every five KIS could alter clinical management. Data collection following the first 3 PDSA cycles revealed a significant increase in access to the full KIS after 5 months (from 4% to 45%). However 1 year on after after a fourth PDSA cycle to implement sustainable interventions this level of access was not maintained. ConclusionsReasons for these results are discussed, as well as limitations to certain interventions. Access to the full KIS at the point of hospital admission can be significantly improved using a quality improvement approach. Improved access to this information may influence the clinical management of selected patients. However sustainable, system-wide strategies are needed to maintain these changes in the longer term.

ReSPECT is a personal emergency care plan summary

Advance care plans in the UK vary in style and content, are restricted to specific organisations or localities, and some are many pages long. An effective advance plan to guide immediate decision making in an emergency must be concise, clear, and universally recognised. The recommended summary plan for emergency care and treatment (ReSPECT), which was developed collaboratively by many stakeholders (www.respectprocess.org.uk), aspires …

CPR decision-making conversations in the UK: an integrative review

Objectives Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) discussions with patients and their caregivers have been subjected to intense ethical and legal debate in recent years. Legal cases and national guidelines have tried to clarify the best approach to DNACPR discussions; however, there is little evidence of how best to approach them from the patient, family or caregiver perspective. This paper describes published accounts of patient, family and caregiver experiences of discussions about advance cardiopulmonary resuscitation (CPR) decision making. Methods An integrative review of the UK literature between 2000 and 2016 including qualitative and quantitative studies was conducted. Worldwide, 773 abstracts were identified, and 20 papers from the UK were included in the final analysis. Results Patient, family and caregivers prefer discussions to be initiated by someone trusted, and wishes for family involvement vary depending on the context. Timing of discussions should be individualised, though discussions earlier in the illness are often preferable. Discussions held in the acute setting are suboptimal. CPR decisions should be part of a wider discussion about future care and adequate communication skills training is important. Conclusions The findings of this review are at odds with the current statutory framework and potentially challenging for medical professionals who are working in a stretched health service, with pressure to discuss DNACPR decisions at the earliest opportunity. With increasing focus on person-centred care and realistic medicine, patient narratives must be considered by doctors and policy makers alike, to minimise harm.

26 ‘What matters to me?’ staff perspectives on the identification and documentation of ‘what matters’ and the role of values-clarification in palliative care settings

Introduction Values-clarification has an important role in palliative care for clinical staff and their patients (Edwards 2014). The question ‘What matters to me?’ seeks to support patients in voicing their values and forms part of the daily assessment of each patient at the Marie Curie Hospice Edinburgh. Aims Explore staff perspectives on the role of understanding patient values and their interaction with clinical practice in a palliative care setting. Method The current study was a service evaluation investigating the practical application of ‘What matters to me?’ as a proxy question for values identification using a retrospective casenotes review and focus group discussion with 12 clinical staff. Data was analysed using a qualitative method thematic analysis. Results Doctors recorded ‘What matters to me?’ information most frequently (52%) and nurses second (36%). Focus group results indicated widespread understanding of the importance of values to staff personally and person-centred care but revealed varying approaches to electronic documentation. Multidisciplinary team meeting electronic records were found to be less useful than intended. Quality of evidence of community documentation of ‘What matters’ being transitioned to the inpatient setting was overall positive. Casenotes analysis gave rise to patient values core themes including family being at home and general health. Discussion This evaluation found extensive agreement regarding the positive impact of using the ‘What matters to me?’ question to elicit patient values. Implications for hospice practice will be discussed including clarifying electronic documentation practices increased healthcare assistant access to electronic records and regular updating of the nursing handover sheets. Reference . Edwards AW. Therapeutic values clarification and values development for end-of-life patients: A conceptual model. American Journal of Hospice and Palliative Medicine®2014;31(4):414–419.