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1.
Palliat Med ; 38(5): 535-545, 2024 May.
Article in English | MEDLINE | ID: mdl-38767241

ABSTRACT

BACKGROUND: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking. AIM: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. DESIGN: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment. SETTING/PARTICIPANTS: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. RESULTS: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1). CONCLUSION: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings. TRIAL REGISTRY: ISCRTN 97417474.


Subject(s)
Delirium , Inpatients , Humans , Delirium/diagnosis , Male , Female , Aged , Middle Aged , Aged, 80 and over , Hospice Care , Terminally Ill , Sensitivity and Specificity , Hospices , Reproducibility of Results , Adult
2.
Lancet ; 403(10435): 1443-1444, 2024 Apr 13.
Article in English | MEDLINE | ID: mdl-38614475
3.
Palliat Med ; 37(8): 1100-1128, 2023 09.
Article in English | MEDLINE | ID: mdl-37489074

ABSTRACT

BACKGROUND: People with an advanced progressive illness and their caregivers frequently experience anxiety, uncertainty and anticipatory grief. Traditional approaches to address psychological concerns aim to modify dysfunctional thinking; however, this is limited in palliative care, as often concerns area valid and thought modification is unrealistic. Acceptance and Commitment Therapy is a mindfulness-based behavioural therapy aimed at promoting acceptance and valued living even in difficult circumstances. Evidence on its value in palliative care is emerging. AIMS: To scope the evidence regarding Acceptance and Commitment Therapy for people with advanced progressive illness, their caregivers and staff involved in their care. DESIGN: Systematic scoping review using four databases (Medline, PsychInfo, CINAHL and AMED), with relevant MeSH terms and keywords from January 1999 to May 2023. RESULTS: 1,373 papers were identified and 26 were eligible for inclusion. These involved people with advanced progressive illness (n = 14), informal caregivers (n = 4), palliative care staff (n = 3), bereaved carers (n = 3), and mixed groups (n = 2). Intervention studies (n = 15) showed that Acceptance and Commitment Therapy is acceptable and may have positive effects on anxiety, depression, distress, and sleep in palliative care populations. Observational studies (n = 11) revealed positive relationships between acceptance and adjustment to loss and physical function. CONCLUSION: Acceptance and Commitment Therapy is acceptable and feasible in palliative care, and may improve anxiety, depression, and distress. Full scale mixed-method evaluation studies are now needed to demonstrate effectiveness and cost-effectiveness amongst patients; while further intervention development and feasibility studies are warranted to explore its value for bereaved carers and staff.


Subject(s)
Acceptance and Commitment Therapy , Caregivers , Humans , Caregivers/psychology , Palliative Care/psychology , Grief , Anxiety/therapy
4.
Palliat Med ; 37(2): 244-256, 2023 02.
Article in English | MEDLINE | ID: mdl-36576308

ABSTRACT

BACKGROUND: Acceptance and Commitment Therapy is a form of Cognitive Behavioural Therapy which uses behavioural psychology, values, acceptance and mindfulness techniques to improve mental health and wellbeing. Acceptance and Commitment Therapy is efficacious in treating stress, anxiety and depression in a broad range of settings including occupational contexts where emotional labour is high. This approach could help palliative care staff to manage work-related stress and promote wellbeing. AIM: To develop, and feasibility test, an online Acceptance and Commitment Therapy intervention to improve wellbeing of palliative care staff. DESIGN: A single-arm feasibility trial of an 8-week Acceptance and Commitment Therapy based intervention for staff, consisting of three online facilitated group workshops and five online individual self-directed learning modules. Data was collected via online questionnaire at four time-points and online focus groups at follow-up. SETTING/PARTICIPANTS: Participants were recruited from Marie Curie hospice and nursing services in Scotland. RESULTS: Twenty five staff commenced and 23 completed the intervention (93%). Fifteen participated in focus groups. Twelve (48%) completed questionnaires at follow-up. Participants found the intervention enjoyable, informative and beneficial. There was preliminary evidence for improvements in psychological flexibility (Cohen's d = 0.7) and mental wellbeing (Cohen's d = 0.49) between baseline and follow-up, but minimal change in perceived stress, burnout or compassion satisfaction. CONCLUSION: Online Acceptance and Commitment Therapy for wellbeing is acceptable to palliative care staff and feasible to implement using Microsoft Teams in a palliative care setting. Incorporating ways to promote long-term maintenance of behaviour changes, and strategies to optimise data collection at follow-up are key considerations for future intervention refinement and evaluation.


Subject(s)
Acceptance and Commitment Therapy , Hospice and Palliative Care Nursing , Internet-Based Intervention , Nursing Staff , Humans , Acceptance and Commitment Therapy/methods , Feasibility Studies , Focus Groups , Surveys and Questionnaires , Follow-Up Studies , Nursing Staff/psychology
5.
Int J Palliat Nurs ; 28(11): 506-514, 2022 Nov 02.
Article in English | MEDLINE | ID: mdl-36417284

ABSTRACT

Background: Delirium is common across all palliative care settings. Guidelines exist to support the care of terminally ill people who develop delirium; yet the evidence base is limited. Recent surveys of palliative care specialists have suggested clinical practice is variable. Aim: To explore delirium assessment and management in a hospice inpatient setting. Methods: A mixed-methods study comprising a retrospective case note review of 21 patients admitted to a hospice inpatient unit and semi-structured interviews with seven hospice inpatient doctors and nurses. Results: A total of 62% of patients were screened for delirium on admission using the 4 As tool (4AT). The period prevalence of delirium was 76% during the 2-week study period. The term 'delirium' was documented infrequently in case notes, compared to other more ambiguous terms. Interview data suggested that nurses were unfamiliar with delirium screening tools. Conclusion: Lack of awareness about delirium screening tools and the infrequent use of the term 'delirium' may suggest that delirium goes under-recognised and under-treated. Further education and research are required to support the care of terminally ill people with delirium.


Subject(s)
Hospice Care , Hospices , Humans , Inpatients , Retrospective Studies , Palliative Care/methods
7.
BMJ Support Palliat Care ; 12(1): 73-80, 2022 Mar.
Article in English | MEDLINE | ID: mdl-30837278

ABSTRACT

OBJECTIVES: Delirium is common in palliative care settings. Management includes detection, treatment of cause(s), non-pharmacological interventions and family support; strategies which are supported with varying levels of evidence. Emerging evidence suggests that antipsychotic use should be minimised in managing mild to moderate severity delirium, but the integration of this evidence into clinical practice is unknown. METHODS: A 21-question online anonymous survey was emailed to Association for Palliative Medicine members in current clinical practice (n=859), asking about delirium assessment, management and research priorities. RESULTS: Response rate was 39%: 70% of respondents were palliative medicine consultants. Delirium guidelines were used by some: 42% used local guidelines but 38% used none. On inpatient admission, 59% never use a delirium screening tool. Respondents would use non-pharmacological interventions to manage delirium, either alone (39%) or with an antipsychotic (58%). Most respondents (91%) would prescribe an antipsychotic and 6% a benzodiazepine, for distressing hallucinations unresponsive to non-pharmacological measures. Inpatient (57%) and community teams (60%) do not formally support family carers. Research priorities were delirium prevention, management and prediction of reversibility. CONCLUSION: This survey of UK and Irish Palliative Medicine specialists shows that delirium screening at inpatient admission is suboptimal. Most specialists continue to use antipsychotics in combination with non-pharmacological interventions to manage delirium. More support for family carers should be routinely provided by clinical teams. Further rigorously designed clinical trials are urgently needed in view of management variability, emerging evidence and perceived priorities for research.


Subject(s)
Delirium , Palliative Medicine , Delirium/drug therapy , Humans , Ireland , Palliative Care , Surveys and Questionnaires , United Kingdom
8.
BMC Palliat Care ; 20(1): 96, 2021 Jun 25.
Article in English | MEDLINE | ID: mdl-34172029

ABSTRACT

OBJECTIVES: Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot test a brief Acceptance and Commitment Therapy (ACT) based intervention to improve quality of life and distress. METHODS: Our mixed-method design included: (i) quantitative effectiveness testing using Single Case Experimental Design (SCED), (ii) qualitative interviews with participants, and (iii) focus groups with hospice staff. The five-session, in-person intervention was delivered to 10 participants; five completed at least 80%. RESULTS: At baseline, participants reported poor quality of life but low distress. Most experienced substantial physical health deterioration during the study. SCED analysis methods did not show conclusively significant effects, but there was some indication that outcome improvement followed changes in expected intervention processes variables. Quantitative and qualitative data together demonstrates acceptability, perceived effectiveness and safety of the intervention. Qualitative interviews and focus groups were also used to gain feedback on intervention content and to make design recommendations to maximise success of later feasibility trials. CONCLUSIONS: This study adds to the growing evidence base for ACT in people with advanced cancer. A number of potential intervention mechanisms, for example a distress-buffering hypothesis, are raised by our data and these should be addressed in future research using randomised controlled trial designs. Our methodological recommendations-including recruiting non-cancer diagnoses, and earlier in the treatment trajectory-likely apply more broadly to the delivery of psychological intervention in the palliative care setting. This study was pre-registered on the Open Science Framework (Ref: 46,033) and retrospectively registered on the ISRCTN registry (Ref: ISRCTN12084782).


Subject(s)
Acceptance and Commitment Therapy , Hospices , Mentoring , Neoplasms , Feasibility Studies , Humans , Neoplasms/therapy , Quality of Life
9.
Br J Community Nurs ; 26(2): 58-62, 2021 Feb 02.
Article in English | MEDLINE | ID: mdl-33539245

ABSTRACT

In Scotland, the Key Information Summary (KIS) enables health providers to access key patient information to guide decision-making out-of-hours. KISs are generated in primary care and rely on information from other teams, such as community specialist palliative care teams (CSPCTs), to keep them up-to-date. This study involved a service evaluation consisting of case note reviews of new referrals to a CSPCT and semi-structured interviews with palliative care community nurse specialists (CNSs) regarding their perspectives on KISs. Some 44 case notes were examined, and 77% of patients had a KIS on CSPCT referral. One-month post-referral, all those re-examined (n=17) had a KIS, and 59% KISs had been updated following CNS assessments. CNSs cited anticipatory care planning (ACP) as the most useful aspect of KIS, and the majority of CNSs said they would appreciate KIS editing access. A system allowing CNSs to update KISs would be acceptable to CNSs, as it could facilitate care co-ordination and potentially improve comprehensiveness of ACP information held in KISs.


Subject(s)
Hospice Care , Hospices , Electronics , Humans , Palliative Care , Referral and Consultation
10.
AMRC Open Res ; 3: 16, 2021 Apr 26.
Article in English | MEDLINE | ID: mdl-35966135

ABSTRACT

Background: Delirium is a serious and distressing neuropsychiatric condition, which is prevalent across all palliative care settings. Hypoactive delirium is particularly common, but difficult to recognize, partly due to overlapping symptoms with depression and dementia. Delirium screening tools can lead to earlier identification and hence better management of patients. The 4AT (4 'A's Test) is a brief tool for delirium detection, designed for use in clinical practice. It has been validated in 17 studies in over 3,700 patients. The test is currently used in specialist palliative care units, but has not been validated in this setting. The aim of the study is to determine the diagnostic accuracy of the 4AT for delirium detection against a reference standard, in hospice inpatients. Methods: 240 participants will be recruited from the inpatient units of two hospices in Scotland. If a patient lacks capacity to consent, agreement will be sought from a legal proxy. Each participant will complete the 4AT and a reference standard assessment based on the diagnostic delirium criteria in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This will be supplemented by tests of cognition and attention, including reverse days of the week, counting down from 20 to 1, Vigilance 'A', the Observational Scale for Level of Arousal, the modified Richmond Agitation Sedation Scale and the Delirium Rating Scale-Revised-98. The assessments will be conducted in a randomized order by two independent clinicians, who will be blinded to the results until both are complete. Primary outcomes will be the sensitivity and specificity of the 4AT in detecting delirium. Discussion: The findings will inform clinical practice regarding delirium assessment in palliative care settings. Trial registration: ISRCTN ISRCTN97417474 (21/02/2020).

11.
AMRC Open Res ; 3: 26, 2021.
Article in English | MEDLINE | ID: mdl-38708066

ABSTRACT

Background: Palliative care staff commonly experience workplace stress and distress. General stressors include unmanageable workloads and staff shortages. Stressors specific to palliative care include regular exposure to death, loss and grief. The COVID-19 pandemic exacerbated exhaustion and burnout across the healthcare system, including for those providing palliative care. Evidence based psychological support interventions, tailored to the needs and context of palliative care staff, are needed. Acceptance and Commitment Therapy (ACT) is an established form of cognitive behavioural therapy which uses behavioural psychology, values, acceptance, and mindfulness techniques to improve mental health and wellbeing. ACT is effective in improving workplace wellbeing in many occupational settings. Our study examines the acceptability and feasibility of an online ACT-based intervention to improve mental health and wellbeing in staff caring for people with an advanced progressive illness. Methods: We plan a single-arm feasibility trial. We will seek to recruit 30 participants to take part in an 8- week online ACT-based intervention, consisting of three synchronous facilitated group sessions and five asynchronous self-directed learning modules. We will use convergent mixed methods to evaluate the feasibility of the intervention. Quantitative feasibility outcomes will include participant recruitment and retention rates, alongside completion rates of measures assessing stress, quality of life, wellbeing, and psychological flexibility. Focus groups and interviews will explore participant perspectives on the intervention. We will run a stakeholder workshop to further refine the intervention and identify outcomes for use in a future evaluation. Results: We will describe participant perspectives on intervention acceptability, format, content, and perceived impact, alongside rates of intervention recruitment, retention, and outcome measure completion. Conclusion: We will show whether a brief, online ACT intervention is acceptable to, and feasible for palliative care staff. Findings will be used to further refine the intervention and provide essential information on outcome assessment prior to a full-scale evaluation.


Palliative care staff commonly experience workplace stress and distress. General stressors include unmanageable workloads and staff shortages. Stressors specific to palliative care include regular exposure to death, loss and grief. The COVID pandemic increased exhaustion and burnout across the healthcare system, including for workers providing palliative care. An introduction to psychological therapies for professionals caring for people with a terminal illness may improve workplace wellbeing. Acceptance and Commitment Therapy (ACT) is an established form of cognitive behavioural therapy which uses behavioural psychology, values, acceptance, and mindfulness techniques to improve mental health and wellbeing. ACT is effective in improving workplace wellbeing in many occupational settings though has not yet been evaluated with hospice staff. Our study will examines whether a brief ACT intervention, delivered online, is helpful to hospice staff, and research on this can be carried out. We will seek to recruit 30 hospice staff participants to take part in an 8-week online ACT-based intervention, consisting of three online in-person group sessions and five self-directed learning modules. We will gather date from a range of sources, including questionnaires and focus groups, to work out whether there is value in this type of intervention. We will describe participant views on the intervention, what worked and what needs to be refined; alongside data on the number of people interested in participating and of those the proportion completing the intervention. We will show whether a brief, online ACT intervention can potentially improve wellbeing for palliative care staff, and can be evaluated in future studies. Findings will be used to further refine the intervention and provide essential information for future research.

12.
Br J Community Nurs ; 25(7): 346-352, 2020 Jul 02.
Article in English | MEDLINE | ID: mdl-32614673

ABSTRACT

Delirium occurs frequently at end of life. Palliative care clinical nurse specialists (CNSs) are involved in community palliative care provision. Many patients prefer being cared for at home, yet managing delirium in this setting presents unique challenges, potentially resulting in emergency hospital or hospice admission. We examined the experiences and practice of palliative care CNSs managing delirium in the community; 10 interviews were undertaken. Data were analysed using the framework approach. Challenges to delirium management in the community included limited time with patients, reliance on families and access to medications. Assessment tools were not used routinely; time limited visits and inconsistent retesting were perceived barriers. Management approaches differed depending on CNSs' previous delirium education. Strategies to prevent delirium were not used. Community delirium management presents challenges; support surrounding these could be beneficial. Routine assessment tool use and delirium prevention strategies should be included in further education and research.


Subject(s)
Delirium/nursing , Hospice Care/methods , Hospice and Palliative Care Nursing/methods , Palliative Care/methods , Terminally Ill , Female , Humans , Qualitative Research , Scotland
13.
Resuscitation ; 148: 98-107, 2020 03 01.
Article in English | MEDLINE | ID: mdl-31945422

ABSTRACT

INTRODUCTION: Do-not-attempt-cardiopulmonary-resuscitation (DNACPR) practice has been shown to be variable and sub-optimal. This paper describes the development of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT). ReSPECT is a process which encourages shared understanding of a patient's condition and what outcomes they value and fear, before recording clinical recommendations about cardiopulmonary-resuscitation (CPR) within a broader plan for emergency care and treatment. METHODS: ReSPECT was developed iteratively, with integral stakeholder engagement, informed by the Knowledge-to-Action cycle. Mixed methods included: synthesis of existing literature; a national online consultation exercise; cognitive interviews with users; a patient-public involvement (PPI) workshop and a usability pilot, to ensure acceptability by both patients and professionals. RESULTS: The majority (89%) of consultation respondents supported the concept of emergency care and treatment plans. Key features identified in the evaluation and incorporated into ReSPECT were: The importance of discussions between patient and clinician to inform realistic treatment preferences and clarity in the resulting recommendations recorded by the clinician on the form. The process is compliant with UK mental capacity laws. Documentation should be recognised across all health and care settings. There should be opportunity for timely review based on individual need. CONCLUSION: ReSPECT is designed to facilitate discussions about a person's preferences to inform emergency care and treatment plans (including CPR) for use across all health and care settings. It has been developed iteratively with a range of stakeholders. Further research will be needed to assess the influence of ReSPECT on patient-centred decisions, experience and health outcomes.


Subject(s)
Cardiopulmonary Resuscitation , Emergency Medical Services , Emergency Treatment , Humans
14.
Br J Gen Pract ; 70(690): e20-e28, 2020 Jan.
Article in English | MEDLINE | ID: mdl-31848198

ABSTRACT

BACKGROUND: Electronic care coordination systems, known as the Key Information Summary (KIS) in Scotland, enable the creation of shared electronic records available across healthcare settings. A KIS provides clinicians with essential information to guide decision making for people likely to need emergency or out-of-hours care. AIM: To estimate the proportion of people with an advanced progressive illness with a KIS by the time of death, to examine when planning information is documented, and suggest improvements for electronic care coordination systems. DESIGN AND SETTING: This was a mixed-methods study involving 18 diverse general practices in Scotland. METHOD: Retrospective review of medical records of patients who died in 2017, and semi-structured interviews with healthcare professionals were conducted. RESULTS: Data on 1304 decedents were collected. Of those with an advanced progressive illness (79%, n = 1034), 69% (n = 712) had a KIS. These were started a median of 45 weeks before death. People with cancer were most likely to have a KIS (80%, n = 288), and those with organ failure least likely (47%, n = 125). Overall, 68% (n = 482) of KIS included resuscitation status and 55% (n = 390) preferred place of care. People with a KIS were more likely to die in the community compared to those without one (61% versus 30%). Most KIS were considered useful/highly useful. Up-to-date free-text information within the KIS was valued highly. CONCLUSION: In Scotland, most people with an advanced progressive illness have an electronic care coordination record by the time of death. This is an achievement. To improve further, better informal carer information, regular updating, and a focus on generating a KIS for people with organ failure is warranted.


Subject(s)
After-Hours Care/organization & administration , Continuity of Patient Care/organization & administration , Electronic Health Records/statistics & numerical data , Emergency Medical Services/organization & administration , Palliative Care/organization & administration , Primary Health Care/organization & administration , Terminally Ill , Decision Making , Humans , Information Dissemination , Patient Satisfaction , Retrospective Studies , Scotland/epidemiology
15.
Pilot Feasibility Stud ; 5: 104, 2019.
Article in English | MEDLINE | ID: mdl-31452926

ABSTRACT

BACKGROUND: Cancer affects millions of individuals globally, with a mortality rate of over eight million people annually. Although palliative care is often provided outside of specialist services, many people require, at some point in their illness journey, support from specialist palliative care services, for example, those provided in hospice settings. This transition can be a time of uncertainty and fear, and there is a need for effective interventions to meet the psychological and supportive care needs of people with cancer that cannot be cured. Whilst Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive. METHOD: This mixed-methods study uses a single-case experimental design with embedded qualitative interviews to pilot test a novel intervention for this patient group. Between 14 and 20 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills (openness, awareness and engagement) as a way to deal effectively with challenges of transition into specialist palliative care services. Outcome measures include cancer-specific quality of life (primary outcome) and distress (secondary outcome), which are assessed alongside measures of psychological flexibility. Daily diary outcome assessments will be taken for key measures, alongside more detailed weekly self-report, through baseline, intervention and 1-month follow-up phases. After follow-up, participants will be invited to take part in a qualitative interview to understand their experience of taking part and acceptability and perceived effectiveness of the intervention and its components. DISCUSSION: This study is the first investigation of using ACT with terminally ill patients at the beginning of their transition into palliative treatment. Using in-depth single-case approaches, we will refine and manualise intervention content by the close of the study for use in follow-up research trials. Our long-term goal is then to test the intervention as delivered by non-psychologist specialist palliative care practitioners thus broadening the potential relevance of the approach. TRIAL REGISTRATION: Open Science Framework, 46033. Registered 19 April 2018.

16.
BMJ Support Palliat Care ; 9(1): 1-11, 2019 Mar.
Article in English | MEDLINE | ID: mdl-30108041

ABSTRACT

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.


Subject(s)
Advance Care Planning , Cardiopulmonary Resuscitation/psychology , Decision Making , Resuscitation Orders/psychology , Communication , Female , Humans , Male , Physicians/psychology , United Kingdom
17.
BMJ Support Palliat Care ; 9(4): e28, 2019 Dec.
Article in English | MEDLINE | ID: mdl-27075983

ABSTRACT

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.


Subject(s)
General Practitioners/statistics & numerical data , Palliative Care/statistics & numerical data , Patient Care Planning/statistics & numerical data , Primary Health Care/statistics & numerical data , Terminal Care/statistics & numerical data , Adult , Aged , Dementia/therapy , Female , General Practitioners/psychology , Humans , Information Dissemination , Male , Middle Aged , Neoplasms/therapy , Palliative Care/psychology , Scotland
19.
BMC Palliat Care ; 17(1): 12, 2018 Jan 04.
Article in English | MEDLINE | ID: mdl-29301524

ABSTRACT

BACKGROUND: Complex 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. METHODS: Semi-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. RESULTS: The 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. CONCLUSIONS: Complexity 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.


Subject(s)
Attitude of Health Personnel , Health Personnel/psychology , Palliative Care/classification , Adult , Female , Humans , Male , Middle Aged , Palliative Care/trends , Qualitative Research , State Medicine/organization & administration , United Kingdom
20.
BMC Palliat Care ; 17(1): 19, 2018 Jan 26.
Article in English | MEDLINE | ID: mdl-29373964

ABSTRACT

BACKGROUND: The 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). METHODS: A 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. RESULTS: In 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%). CONCLUSIONS: There 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.


Subject(s)
Research/trends , Terminal Care/trends , Humans , Neoplasms/therapy , Publishing/trends , Scotland
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