Preferred place of death for patients referred to a specialist palliative care service.

OBJECTIVES: Understanding patients' preferences for place of death and supporting patients to achieve their wishes has become a priority. This study aims to: (1) examine preferences of patients referred to a specialist palliative care service; (2) determine whether preferences of those who have been admitted as hospice inpatients differ from those who have not; (3) identify reasons why preferred place of death (PPD) is sometimes not recorded; and (iv) investigate whether nominating a PPD relates to actual place of death. METHOD: PPD information was collected as part of standard care for all patients referred to a specialist palliative care service. Case notes were reviewed retrospectively for 1127 patients who died under the care of the service. RESULTS: Seventy-seven percent of the patients expressed a PPD, a further 21% of patients had documented reasons for PPD remaining unknown. Eighty percent of patients who had never been admitted to the hospice wanted to die at home. In contrast, 79% of those with at least one hospice inpatient admission wanted to die in the hospice. Patients who had an unknown PPD were three times more likely to die in hospital. CONCLUSIONS: Most patients in a specialist palliative care setting are willing to express a PPD. Preferences differ for patients who had never been admitted as hospice inpatients from those who have had at least one inpatient stay. Routine and ongoing assessment of PPD are recommended to support patients' wishes at the end of life.

Do place-of-death preferences for patients receiving specialist palliative care change over time?

BACKGROUND: Discussing preferred place of death (PPD) with patients approaching end of life is an important part of anticipatory care planning. Preferences at a specific point in time have been described; however the extent to which preferences may change is unclear. This study examines changes in PPD. METHODS: A retrospective case note review of all patients who died under the care of a specialist palliative care service during a 6-month period in 2012 was undertaken. Notes relating to 299 patients were examined by a member of the clinical team. RESULTS: Of the 204 patients who had more than one PPD assessment, 57% showed a change in preference status between the first and last assessment. The majority changed from an unclarified preference to identifying a preferred place. Only 15% of patients with two or more assessments switched from one location to another. CONCLUSIONS: Most patients under the care of a specialist palliative care service identify a preference for place of death as end of life approaches. Only a minority change their preference once a preferred place has been elicited. We recommend that patients are supported to explore their preferences for PPD as part of specialist palliative care, and that preferences are reviewed as end of life approaches.

Is the patient satisfaction questionnaire an acceptable tool for use in a hospice inpatient setting? A pilot study.

BACKGROUND: The Patient Satisfaction Questionnaire (PSQ) is an assessment tool used to evaluate patients' perspectives of their doctor's communication and interpersonal skills. The present pilot study investigated whether the PSQ could be administered successfully in a hospice inpatient setting and if it is an acceptable tool for completion by patients and relatives in this context. METHODS: The study was conducted in two phases. A first phase was undertaken to establish the process of PSQ administration in a hospice inpatient ward. A second phase of questionnaire administration followed by semi-structured interviews explored inpatient experiences of the questionnaire process. RESULTS: Overall, 30 inpatients and one relative were invited to complete the PSQ across both phases of data collection, representing 53% of all inpatients at the time of data collection. The remaining 47% were deemed unsuitable to ask due to a diagnosis of dying (24%), confusion (17%), distress (3%) or lack of availability (2%). The average response rate across both phases of data collection was 87%. Qualitative interview data suggested that the PSQ was considered clear, easy to understand and not burdensome in terms of time or effort for this population. CONCLUSIONS: The PSQ appears an acceptable tool to use in a hospice inpatient setting. Many patients welcomed the opportunity to be involved and give feedback. Using a greater proportion of relatives as an alternative source of feedback could be considered in future studies.

Identifying the science and technology dimensions of emerging public policy issues through horizon scanning.

Public policy requires public support, which in turn implies a need to enable the public not just to understand policy but also to be engaged in its development. Where complex science and technology issues are involved in policy making, this takes time, so it is important to identify emerging issues of this type and prepare engagement plans. In our horizon scanning exercise, we used a modified Delphi technique. A wide group of people with interests in the science and policy interface (drawn from policy makers, policy adviser, practitioners, the private sector and academics) elicited a long list of emergent policy issues in which science and technology would feature strongly and which would also necessitate public engagement as policies are developed. This was then refined to a short list of top priorities for policy makers. Thirty issues were identified within broad areas of business and technology; energy and environment; government, politics and education; health, healthcare, population and aging; information, communication, infrastructure and transport; and public safety and national security.

Improving electronic information sharing for palliative care patients.

Coordination of services used by palliative care patients across care contexts is essential in providing patient centred care. In Lothian, Edinburgh, a baseline audit in 2008 of patients known to all four specialist palliative care teams revealed only 49% had information available to out of hours (OOH) general practitioners (GPs). This highlighted the poor handover and sharing of information, which are essential for providing quality care for palliative patients in accordance with their wishes, and for reducing inappropriate hospital admissions. A number of quality improvement measures have been introduced, some nationally in Scotland, such as the roll out of Electronic Palliative Care Summaries (ePCS) - an electronic register containing up to date information including patient wishes and latest treatment decisions. In addition there have been changes to the GP Quality Outcomes Framework encouraging the use of electronic records. Locally, at Marie Curie Hospice, drivers were implemented including hosting GP education evenings promoting ePCS use, alteration of hospice discharge letter format to complement ePCS completion, in addition to offering specialist nurse support and presence at GP practice palliative care register meetings. A re-audit in 2012 revealed that 75% of specialist palliative care patients had electronic information available to OOH services, and in 2013, 71% of patients. This represents a significant improvement in electronic information sharing across care contexts. Building on the progress of ePCS, a new Electronic Key Information Summary is currently being rolled out across Scotland. This quality improvement report reflects on the positive measures taken to address the important clinical need of effective electronic handover for specialist palliative care patients in Lothian. Furthermore, it highlights the ongoing requirement to continue to improve the quality and availability of electronically shared information for every patient known to palliative care services across care contexts.

Discussing preferred place of death with patients: staff experiences in a UK specialist palliative care setting.

BACKGROUND: National end-of-life care policies propose that health professionals regularly discuss matters such as preferred place of death (PPD) with patients. AIM: To explore clinician experiences of discussing PPD with palliative care patients. METHOD: Six clinicians from a Scottish hospice each participated in a semi-structured interview. Interview data was analysed using interpretative phenomenological analysis. RESULTS: Four themes were integral to the participants' accounts: the importance of discussing preferences at the end of life (staff recognise the value of discussing patients' final wishes), identifying how and when to discuss PPD (discussions are tailored to the individual), reflecting on the emotional aspects of discussing PPD (discussing PPD is challenging but rewarding), and a journey from expectations to experience (discussing PPD becomes easier with time). CONCLUSION: Although potentially difficult, the participants believed that advance care planning is important and beneficial. With time, they had developed communication strategies enabling them to discuss PPD in an effective, patient-centred way.

Improving end-of-life care in nursing homes: implementation and evaluation of an intervention to sustain quality of care.

BACKGROUND: Internationally, policy calls for care homes to provide reliably good end-of-life care. We undertook a 20-month project to sustain palliative care improvements achieved by a previous intervention. AIM: To sustain a high standard of palliative care in seven UK nursing care homes using a lower level of support than employed during the original project and to evaluate the effectiveness of this intervention. DESIGN: Two palliative care nurse specialists each spent one day per week providing support and training to seven care homes in Scotland, United Kingdom; after death audit data were collected each month and analysed. RESULTS: During the sustainability project, 132 residents died. In comparison with the initial intervention, there were increases in (a) the proportion of deceased residents with an anticipatory care plan in place (b) the proportion of those with Do Not Attempt Cardiopulmonary Resuscitation documentation in place and (c) the proportion of those who were on the Liverpool Care Pathway when they died. Furthermore, there was a reduction in inappropriate hospital deaths of frail and elderly residents with dementia. However, overall hospital deaths increased. CONCLUSIONS: A lower level of nursing support managed to sustain and build on the initial outcomes. However, despite increased adoption of key end-of-life care tools, hospital deaths were higher during the sustainability project. While good support from palliative care nurse specialists and GPs can help ensure that key processes remain in place, stable management and key champions are vital to ensure that a palliative care approach becomes embedded within the culture of the care home.

Delivering preference for place of death in a specialist palliative care setting.

Over the last 10 years, one of the key themes of public policy in palliative care has been achievement of choice in place of death. In Marie Curie Hospice Edinburgh a baseline audit conducted in 2006 showed that only a small proportion (18%) of patients referred to hospice services died at home. The audit also revealed that only 31% of those who expressed a preference to die at home were able to do so, whereas 91% of those who chose a setting other than home achieved their preference. Overall achievement of preferred place of death was 56%. However a significant number of patients (29%) did not have a recorded preference. A programme of quality improvement has continued over the last 7 years to improve identification, communication and achievement of preferred place of death for all patients. The mechanisms to change practice have been: changes to documentation; changes to clinical systems to support use of documentation; support for clinical staff to recognise the value of discussing preferences; and support for clinical staff to develop new skills. In addition the programme has been incorporated into local clinical strategy and this has enabled gaps in service to be addressed with a new service to support early discharge of those patients who wish to die at home. A recent audit showed that all patients had a recorded preference or a documented reason why their preference was unclarified. One third of patients died at home - nearly double the proportion that died at home in the baseline audit. Seventy one per cent of patients who wished to die at home actually died at home - a substantial increase from 31% at baseline. Achievement of preferred place of death for patients wishing to die in the hospice remained high at 88%. The focus on assessment of preference for place of death has led to substantial improvements in the identification and achievement of preference for patients dying under the care of the hospice. Furthermore, it has been associated with an increase in the overall proportion of patients who die at home.

'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.

An assessment of methods used to evaluate the adequacy of cancer pain management.

This paper assesses different methods of evaluating pain management. We used the established methods of pain prevalence measurement and the Pain Management Index (PMI) to compare pain management between two groups who might be expected to have different outcomes. We also developed and used a method to assess how quickly pain was controlled for each group (time to pain control). We compared a group of cancer patients (n=712) managed by general practitioners in the community (Community Group) and a group of patients (n=152) treated in a Specialist Palliative Care Unit (Hospice Group) using all methods. The time to pain control method identified a significant difference between the two groups (P<0.01 log rank test), with the Hospice Group achieving pain control significantly faster. By contrast, neither the pain prevalence method nor the PMI could detect any difference (P=0.11 Wilcoxon test). The established methods of pain prevalence measurement and PMI are limited by their inability to measure pain over time and to assess prescribers' response to changing pain. Dynamic methods that evaluate changes in prescribing and pain levels over time must be developed in order to accurately assess pain management.

Cancer pain management in Lanarkshire: a community-based audit.

BACKGROUND: A prospective, longitudinal audit of pain management in patients with cancer was conducted in an unselected community population in Lanarkshire, Scotland. METHODS: Using a modified Delphi technique, a recording form was developed and a dedicated project manager was appointed to oversee the development and implementation of the audit. Community staff recorded pain level and analgesic prescribing on consecutive home visits to patients with cancer-related pain. Areas of good and poor prescribing were assessed using standards previously developed for the Scottish Cancer Pain Audit. These results were fed back to prescribers in a variety of ways and used as a focus for a programme of primary care-based education. RESULTS: Five hundred and forty-one patients have been entered in the audit between May 1999 and end October 2002. A total of 3259 visits have been recorded and 88% of general practices in Lanarkshire submitted forms during this period. Pain scores were recorded in 90% of visits. Specific gaps in prescribing practice were identified. CONCLUSION: The audit demonstrated that it is possible to engage primary care teams in a continuing audit of cancer pain management, which is achievable within the context of normal care. It provided a means to collect and analyse serial data on pain level and pain management and to identify areas of prescribing in need of improvement. Concerted efforts to establish the legitimacy and relevance of the project in the eyes of key stakeholders proved fundamental to encouraging longer-term behavioural change in the management of cancer pain.