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

2. Outline

3. Background
PICO
Search terms
Completed studies
Studies in progress
Discussion about outcomes
Conclusions

4. Background

5. 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…

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.

7. 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…

8. 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
HF;
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

9. PICO 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?

10. 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 databases

11. Completed studies including only one RCT.24 Nevertheless,
the benefits of an integrated service with respect to improvement
in advanced care planning and reduction in hospital
admissions have been consistently demonstrated. A further
three RCTs comparing integrated palliative care with usual
care are ongoing (trial identifiers: NCT ,
NCT and NCT ).

12. Cochrane 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.

13. 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.
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-management
of 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

14. 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: 815–821.
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 death
Bekelman 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 therapy
Davidson, again descriptive, retrospective case note review, and consultation with stakeholders, HF case management with support from specialist pall care, not swamping specialist pall care
Hogg, Caring together programme in Glasgow, abstract only, waiting further evaluation, retrospective case note series reduced hospital stay

15. Studies in progress

16. 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 (in press)
Bekleman prospective clinical trial design with quantitative
and qualitative methods to evaluate the feasibility and
acceptability of CASA. Patients were randomly allocated to
CASA or a psychospiritual intervention that was also being
pilot tested. Collaborative Care to Alleviate
Symptoms and Adjust to Illness (CASA), with the ultimate
goal of improving symptoms and quality of life in patients
with HF. The CASA intervention included (1) nurse
phone 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 on
medical 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 university
hospital (n = 2). Measurements included feasibility (cohort retention rate, medical recommendation implementation
rate, 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, implementation
of medical recommendations, minimal missing data, and acceptability. Several intervention
changes were made based on participant feedback

17. NCT 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

18. Theoretical 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 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. 2013;45(5):
Discuss methods

19. Communication programme for clinicians
An Intervention to Improve Implantable Cardioverter-Defibrillator Deactivation Conversations (WISDOM) Trial reg NCT
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)

20. Other 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 recruiting
NCT 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
NCT 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
NCT 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
NCT ,
NCT and NCT
MJ editorial A trial randomising heart failure patients to usual
care, or early palliative care is ongoing (PAL-HF;
ClinicalTrials.gov Identifier: NCT ). The hypothesis
is that early referral for specialist palliative care will
improve patient outcomes. This is welcome, but will not
inform us which patients require the attention of a multidisciplinary
palliative care team, or when, and which can
have their palliative care needs met effectively by the usual
care team.

21. Conference abstract
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: /bmjspcare Source: PubMed
Abstract
Background 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

22. Outcomes

23. Generic v specific
SF Palliative care Outcome Scale (POS)
EuroQol (EQ-5D)2 4 Hospital Anxiety and Depression Scale (HADS)
General Health Questionnaire Edmonton Symptom Assessment Scale (ESAS)
Sickness Impact Profile

24. Conclusions

25. Extrapolate from evidence from cancer (and heart failure services)
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...
Commissioners v patient
The hypothesis
is that early referral for specialist palliative care will
improve patient outcomes. This is welcome, but will not
inform us which patients require the attention of a multidisciplinary
palliative care team, or when, and which can
have their palliative care needs met effectively by the usual
care team.
Optimal disease management and optimal symptom-
directed management need to be regarded as
integral rather than alternative options.
2. Despite evolving evidence in this area, the “who”,
“what” and “how” of palliative care provision for
people with non-malignant disease still needs to be
clarified.
3. Specialist palliative care should examine how it is
organised in terms of knowledge, skills, availability,
in order to respond appropriately to the many
colleagues who may need help to identify and
address patient needs.
4. Specialist palliative care should be open to the
training needs of other specialties including some
form of certification of such training.

26. Any questions or comments?
Thank you
Any questions or comments?