1 Palliative care services in chronic heart failure Dr Amy Gadoud NIHR Clinical Lecturer Hull York Medical School [email protected].

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Palliative care services in chronic heart failure

Dr Amy GadoudNIHR Clinical Lecturer Hull York Medical

School [email protected]

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Outline

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Background PICOSearch termsCompleted studiesStudies in progressDiscussion about outcomesConclusions

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Background

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Are 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…

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“…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.

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Evaluating clinical servicesEvidence for what we do (“bumper

sticker”) Better ways of organising services

As 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…

Clinical services

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United States consensus statement in 2004, updated this year (white paper)

European Society Cardiology position statement in 2009

UK: 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 and

HF;

Policy initiatives

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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 broad Does palliative care improve

outcomes for patients with heart failure?

PICO

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Searched as part of a wider literature search, if just for this question would have had to limit as too broad

Grey literature important in particular trial databases

Search terms

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Completed studies

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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: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD002752.pub3/abstract

Cochrane review HF services

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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 US O: 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.

One RCT “PhoenixCare”

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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.

Individual service evaluations

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Studies in progress

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• CASA (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 physician

• Outpatients with chronic HF (n=17)• The CASA was feasible based on participant

enrolment, cohort retention, implementation of medical recommendations, minimal missing data, and acceptability

Bekelman 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. 2013. (in press)

Feasibility study

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NCT01739686 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

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‘‘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 teams

Work 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):901-11.

Theoretical understanding

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An Intervention to Improve Implantable Cardioverter-Defibrillator Deactivation Conversations (WISDOM) Trial reg NCT01459744

Primary outcome measure: prevalence of conversations about ICD Deactivation

Reported 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)

Communication programme for clinicians

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NCT01589601 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.

NCT01519479 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 recruiting

NCT01304381 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 available

NCT02086305 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 2014

NCT01461681 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 recruiting

Other studies on trial registers

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PALLIATIVE 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 Denvir

Supportive and Palliative Care 03/2014; 4(1):110. DOI:10.1136/bmjspcare-2014-000653.15Source: PubMed

Conference abstract

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Outcomes

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Conclusions

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Lack of published studies (rather than lack of evidence) and published evidence of low quality

Extrapolate 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 service

Thinking back to original scenario not able to say which type of service etc...

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Thank you Any questions or comments?