Recognition of palliative care needs of heart failure patients

Palliative care services in
chronic heart failure
Dr Amy Gadoud
NIHR Clinical Lecturer Hull York Medical School
[email protected]
 Background
 Search terms
 Completed studies
 Studies in progress
 Discussion about outcomes
 Conclusions
 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…
“…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
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.
Clinical services
 Evaluating clinical services
 Evidence 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…
Policy initiatives
 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
 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?
Search terms
 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
Completed studies
Cochrane review HF
 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
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:
One 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 care
C: 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 utilization
was 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.
Individual 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–
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:
Studies in progress
Feasibility study
• 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)
 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
Theoretical understanding
 ‘‘It is easy to say, ‘the issue is communication,’ and
it is easy to say ‘we have to talk to each other’
 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 progress
Lingard 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.
Communication programme
for clinicians
 An Intervention to Improve Implantable
Cardioverter-Defibrillator Deactivation
Conversations (WISDOM) Trial reg
 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)
Other studies on trial registers
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 [SMSHF]) 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
Conference abstract
 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-2014000653.15Source: PubMed
 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
 Thinking back to original scenario not able to say
which type of service etc...
Thank you
Any questions or comments?

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