5Are we over focusing on drugs… Is that the main focus of what we do?Often the easiest part of the job!What makes us “specialist”?Thorough careful assessment, communication, multidisciplinary, decision making (?more time)Doctor as drug, but not as glamorous!Also much for than prescribing drug, information, opiophobia, etc…
6“…but perhaps we also wish to preserve our own sense of therapeutic value. Ketamine has fulfilled a special and useful role in this setting. It is a drug not known or used by many of our colleagues. It requires a specialist to administer it. This specialness and all it entails may significantly contribute to the high placebo responses of many pain studies, not least the study in question, as well as the reports of great efficacy in clinical anecdotes…”Spruyt O, Le B, Philip J. Integrating New Evidence About an Old Drug: Growing Pains as Palliative Medicine Matures. Journal of Pain and Symptom Management. 2013;46(5):e3-e5.Spruyt O, Le B, Philip J. Integrating New Evidence About an Old Drug: Growing Pains as Palliative Medicine Matures. Journal of Pain and Symptom Management. 2013;46(5):e3-e5.
7Clinical services Evaluating clinical services Evidence for what we do (“bumper sticker”)Better ways of organising servicesAs a consultant you may be asked /wish to set up a new service …....Hopefully not have to provide research evidence to justify what do already…
8Policy initiativesUnited States consensus statement in 2004, updated this year (white paper)European Society Cardiology position statement in 2009UK: National Service Framework Heart Failure (2000); NICE, CHF (2003, 2010); End of life care strategy; (2008); Quality Improvement Productivity and Prevention (QIPP); Quality standards and markers both for EOLC andHF;Whellan DJ, Goodlin SJ, Dickinson MG, Heidenreich PA, Jaenicke C, Stough WG, et al. End-of-Life Care in Patients With Heart Failure. Journal of cardiac failure. 2014;20(2):Jaarsma T, Beattie JM, Ryder M, Rutten FH, McDonagh T, Mohacsi P. Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. European Journal of Heart Failure. 2009;11(5):Department of Health Quality, Improvement, Productivity and Prevention (QIPP 2010 appendix 4) end of life work stream in promoting a good death, supporting systematic advance care planning, and identifying and sharing good practice. ELQuA (end of life care quality assessments)Leeds needs assessment really good for this (CQUIN not sure where they fit in, ? Related to peer review)The results from the annual VOICES survey are a valid and useful data source and should be incorporated into local performance management structures. The DH (2009) paper “Quality Markers and Measures for EoLC” also recommends the development of local Patient Reported Outcome Measures (PROMs) for EoLC. The PROM should measure that:Pain and other symptoms should be controlled effectively The individual, carers and family should feel well supported The individual, cares and family should feel confident in the skills and knowledge of their health and social care professionals The individual, carers and family should know who to contact in an emergency and The individual should be able to die in their place of choice
9PICO P chronic heart failure (clinical syndrome, left and right), I palliative care (more likely to be services than philosophy of care)C not specific, any, usual care etc…O Not defined, any usually QOL, patient satisfaction etc..i.e. very broadDoes palliative care improve outcomesfor patients with heart failure?
10Search termsSearched as part of a wider literature search, if just for this question would have had to limit as too broadGrey literature important in particular trial databases
11Completed studies including only one RCT.24 Nevertheless, the benefits of an integrated service with respect to improvementin advanced care planning and reduction in hospitaladmissions have been consistently demonstrated. A furtherthree RCTs comparing integrated palliative care with usualcare are ongoing (trial identifiers: NCT ,NCT and NCT ).
12Cochrane review HF services Cochrane review in 2012 examined organisation of clinical services for HF. No palliative services or approaches to care were included, although 2 RCT considered multidisciplinary approaches to care, which reduced both HF-related and all-cause readmissions.Takeda A, Stephanie T, Taylor R, Khan F, Krum H, Underwood M. Clinical service organisation for heart failure. Cochrane Db Syst Rev [Internet]. 2012; (9). Available from:Twenty five trials (5,942 people)CHF patients who have previously been admitted to hospital for this condition there is now good evidence that case management type interventions led by a heart failure specialist nurse reduces CHF related readmissions after 12 months follow up, all cause readmissions and all cause mortality. It is not possible to say what the optimal components of these case management type interventions are, however telephone follow up by the nurse specialist was a common component. Multidisciplinary interventions may be effective in reducing both CHF and all cause readmissions. There is currently limited evidence to support interventions whose major component is follow up in a CHF clinic.
13One RCT “PhoenixCare”P: 192 patients COPD or CHF who had an estimated 2-year life expectancy.I: Home-based case management provided by registered nurse case managers,in coordination with patients’ existing source of medical careC: Usual Care (MCO), Arizona USO: Assessed every 3 months by telephone interview, included the SF-36™ (physical and mental functioning); emergency department visits (medical service utilization) (focus 1 to 4)Results: Compared to controls, PhoenixCare patients exhibited significantly better outcomes on self-management of illness, awareness of illness-related resources, and legal preparation for end of life. They reported lower symptom distress, greater vitality, better physical functioning and higher self-rated health than randomized controls. Emergency department utilizationwas equivalent across groups.Aiken LS, Butner J, Lockhart CA, et al. Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliat Med 2006; 9: 111–126.Aiken LS, Butner J, Lockhart CA, et al. Outcome evaluation of a randomized trial of the PhoenixCare intervention: program of case management and coordinated care for the seriously chronically ill. J Palliat Med 2006; 9: 111–126.Supported by medical director SW and spiritual advisor, Program foci included disease and symptom management, patient self-managementof illness and knowledge of illness-related resources, preparation for end-of life,physical and mental functioning, and utilization of medical services.US, stand alone programme, lots of outcome measures but put them in different foci
14Individual service evaluations Daley A, Matthews C and Williams A. Heart failure and palliative care services working in partnership: report of a new model of care. Palliat Med 2006; 20: 593–601.Johnson M. Planning for end-of-life care in heart failure: experience of two integrated cardiology-palliative care teams. Br J Cardiol 2012; 19: 71–75.Bekelman DB, Nowels CT, Allen LA, et al. Outpatient palliative care for chronic heart failure: a case series. J Palliat Med 2011; 14: 815–821.Davidson PM, Paull G, Introna K, et al. Integrated, collaborative palliative care in heart failure: the St. George Heart Failure Service experience 1999–2002. J Cardiovasc Nurs 2004; 19: 68–75.Hogg K and Jenkins S. Medical anticipatory care plans in advanced heart failure prevent hospital re-admissions. Eur Heart J 2012; 33: 483–484.Daley: qual interviews and activity data “not swamping services”Johnson, a number of papers, most recent papers Bradford and Scarborough prospective study improvement in PPC/PPD recognition, were able to recognise deathBekelman describes the patients seen and the issues addressed in an outpatient palliative care program for patients with HF. Methods: Case series involving a retrospective medical record review using descriptive quantitative and qualitative analysis. Results: Over a 3 ½ year time period, 50 patients were seen, resulting in 228 total visits. Depression, anxiety, pain, fatigue, breathlessness, and sleep disturbance were common symptoms addressed during visits. Advance care planning topics were discussed with 48% of patients; hospice and resuscitation status were each discussed with 16% of patients. Fears or concerns about the future arose in 34% of patients. Care coordination was commonly addressed with patients' other health care providers (58%). The most common referrals were to social work (26%) and rehabilitation/physical therapyDavidson, again descriptive, retrospective case note review, and consultation with stakeholders, HF case management with support from specialist pall care, not swamping specialist pall careHogg, Caring together programme in Glasgow, abstract only, waiting further evaluation, retrospective case note series reduced hospital stay
16Feasibility studyCASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) (1) nurse phone visits involving structured symptom assessments and; (2) structured phone counselling targeting adjustment to illness and depression if present; and (3) weekly team meetings with a palliative care specialist, cardiologist, and primary care physicianOutpatients with chronic HF (n=17)The CASA was feasible based on participant enrolment, cohort retention, implementation of medical recommendations, minimal missing data, and acceptabilityBekelman DB, Hooker S, Nowels CT, Main DS, Meek P, McBryde C, et al. Feasibility and Acceptability of a Collaborative Care Intervention to Improve Symptoms and Quality of Life in Chronic Heart Failure: Mixed Methods Pilot Trial. Journal of Palliative Medicine (in press)Bekleman prospective clinical trial design with quantitativeand qualitative methods to evaluate the feasibility andacceptability of CASA. Patients were randomly allocated toCASA or a psychospiritual intervention that was also beingpilot tested. Collaborative Care to AlleviateSymptoms and Adjust to Illness (CASA), with the ultimategoal of improving symptoms and quality of life in patientswith HF. The CASA intervention included (1) nursephone visits involving structured symptom assessments and guidelines to alleviate breathlessness, fatigue, pain,or depression; (2) structured phone counseling targeting adjustment to illness and depression if present; and (3)weekly team meetings with a palliative care specialist, cardiologist, and primary care physician focused onmedical recommendations to primary care providers (PCPs, physician or nurse practioners) to improve symptoms.Study subjects were outpatients with chronic HF from a Veteran’s Affairs hospital (n = 15) and a universityhospital (n = 2). Measurements included feasibility (cohort retention rate, medical recommendation implementationrate, missing data, quality of care) and acceptability (an end-of-study semi-structured participant interview). The CASA intervention was feasible based on participant enrolment, cohort retention, implementationof medical recommendations, minimal missing data, and acceptability. Several interventionchanges were made based on participant feedback
17NCT definitive trial Collaborative Care to Alleviate Symptoms and Adjust to Illness in Chronic Heart Failure (CASA) Trial.Primary outcome Kansas City Cardiomyopathy Questionnaire (KCCQ) overall score
18Theoretical understanding ‘‘It is easy to say, ‘the issue is communication,’ and it is easy to say ‘we have to talk to each other’ (coordination)Researchers of palliative care for patients with heart failure should design and implement research that goes beyond description of the difficulties that patients, carers and clinicians face and the calls for more “communication” to describe practical solutions that can be enacted by the complex team of patient, carers and multiple health care teamsWork still in progressLingard LA, McDougall A, Schulz V, Shadd J, Marshall D, Strachan PH, et al. Understanding Palliative Care on the Heart Failure Care Team: An Innovative Research Methodology. Journal of Pain and Symptom Management. 2013;45(5):Discuss methods
19Communication programme for clinicians An Intervention to Improve Implantable Cardioverter-Defibrillator Deactivation Conversations (WISDOM) Trial reg NCTPrimary outcome measure: prevalence of conversations about ICD DeactivationReported challenges which include: ethics and identifying patients at risk of dying,Goldstein NE, Kalman J, Kutner JS, Fromme EK, Hutchinson MD, Lipman HI, et al. A Study to Improve Communication Between Clinicians and Patients With Advanced Heart Failure: Methods and Challenges Behind the Working to Improve diScussions about DefibrillatOr Management (WISDOM) Trial. Journal of Pain and Symptom Management (in press)
20Other studies on trial registers NCT The primary aim of the PAL-HF trial is to assess the impact of an interdisciplinary palliative care intervention combined with usual heart failure management on health-related quality of life as measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale.NCT The purpose of this study is to assess the impact of palliative care consultation on quality of life and symptom management for patients hospitalized with acute heart failure with a randomized control trial at Abbott Northwestern Hospital. Quality of Life-Minnesota Living with Heart Failure questionnaire (MLHF) Active, not recruitingNCT The Heart failure and Palliative care Programme is a three-year project in Sweden financed by the Swedish Association of Local Authorities and Regions (SALAR). The overall aim is to develop, implement and evaluate a model that integrates cardiac care and palliative advanced home care for patients with severe chronic heart failure. The primary aim is to study the effects on patients' symptom burden, quality of life and activities of daily living. Edmonton assessment scale (ESAS) primary outcome measure. Completed, results not availableNCT This study is launched to compare the effects of a customary hospital-based palliative heart failure care and an interventional Home-based Palliative heart failure Program, primary outcome readmission rates. Hon Kong. Just registered in March 2014NCT To determine if an interdisciplinary PC intervention (Symptom Management Service-HF [SMS-HF]) provided concurrently with standard cardiology care improves symptoms, QoL and satisfaction, and reduces resource utilization in outpatients with Class II-IV HF compared to standard cardiology care alone. Primary outcome measure assess change in depression using the Center for Epidemiologic Studies Depression Scale (CES-D). Ongoing but not recruitingNCT ,NCT and NCTMJ editorial A trial randomising heart failure patients to usualcare, or early palliative care is ongoing (PAL-HF;ClinicalTrials.gov Identifier: NCT ). The hypothesisis that early referral for specialist palliative care willimprove patient outcomes. This is welcome, but will notinform us which patients require the attention of a multidisciplinarypalliative care team, or when, and which canhave their palliative care needs met effectively by the usualcare team.
21Conference abstractPALLIATIVE CARE FOR PATIENTS WITH ADVANCED HEART DISEASE: A RANDOMISED TRIAL OF EARLY VERSUS DELAYED INTERVENTION.G Highet, J Reid, S Cudmore, S Robertson, K Hogg, S Murray, K Boyd, Ma DenvirSupportive and Palliative Care 03/2014; 4(1):110. DOI: /bmjspcare Source: PubMedAbstractBackground Many patients with advanced heart disease have a limited prognosis despite optimal medical, surgical and device therapy. These patients rarely receive coordinated, holistic care that acknowledges their individual needs and those of their informal carers.Aims This study assesses the feasibility of a randomised controlled trial of a complex intervention that incorporates ongoing, holistic care with anticipatory care planning for people with advanced heart disease.Methods We conducted 11 interviews with a diverse sample of healthcare professionals and 2 focus groups comprising 12 patients and 5 carers. Participants were given a previously developed “Future Care Plan” and details of the trial before the interviews/ focus groups. These acted as focal points for discussion. Data were transcribed and analysed using standard software to extract themes related to the rationale and design of a clinical trial of anticipatory care planning in advanced heart disease.Results Patients and carers highlighted fragmentation of services, difficulty in accessing specialist care and inadequate time for future planning and preparation as key barriers to holistic care. A patient-held plan was welcomed. Healthcare professionals identified challenges related to uncertainty of prognosis, explaining mortality-risk to patients, and switching from curative to palliative approaches. These data informed patient selection (a combination of prognostic tools and needs for additional supportive care), the intervention (cardiologist review and nurse-led support delivered though a patient-centred care plan), and clinical trial outcomes that are robust but measurable in a frail population.Conclusions Patients, carers and healthcare professionals share a number of common concerns in relation to providing high quality care for people with advanced heart disease. The findings of this exploratory study are informing the implementation of a phase II randomised clinical trial of an holistic, anticipatory care planning intervention for patients with advanced heart disease in line with good practice in end of life care.This was talk after mine, one hour consultation with cardiologists
25Extrapolate from evidence from cancer (and heart failure services) Lack of published studies (rather than lack of evidence) and published evidence of low qualityExtrapolate from evidence from cancer (and heart failure services)Important to consider what are important outcome measures (might depend on who talking to!)Needs people to be recognised so are referred to a serviceThinking back to original scenario not able to say which type of service etc...Commissioners v patientThe hypothesisis that early referral for specialist palliative care willimprove patient outcomes. This is welcome, but will notinform us which patients require the attention of a multidisciplinarypalliative care team, or when, and which canhave their palliative care needs met effectively by the usualcare team.Optimal disease management and optimal symptom-directed management need to be regarded asintegral rather than alternative options.2. Despite evolving evidence in this area, the “who”,“what” and “how” of palliative care provision forpeople with non-malignant disease still needs to beclarified.3. Specialist palliative care should examine how it isorganised in terms of knowledge, skills, availability,in order to respond appropriately to the manycolleagues who may need help to identify andaddress patient needs.4. Specialist palliative care should be open to thetraining needs of other specialties including someform of certification of such training.
26Any questions or comments? Thank youAny questions or comments?