MCCC Study Day Evidence of Need March 2011 part 1

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Palliative Care For Heart failure: Evidence of need. :

Palliative Care For Heart failure: Evidence of need. Courtesy of the internet Yvonne Millerick Lead Nurse/Lecturer Caring Together Programme

Overview:

Overview Why is palliative care needed for patients with advancing heart failure. What has stopped us before. Evidence of need: the reality of living with advancing HF the Glasgow & Clyde Experience. Addressing the need. Heart Failure

Slide 3:

Why is Palliative Care Needed for Heart Failure?

Rationale For Improving Care :

Rationale For Improving Care Patients dying from advanced HF remain disadvantaged compared to their peers suffering from cancer in terms of symptom control, communication and access to palliative care support networks. (National Council for Palliative Care 2005) “ It is now recognised that the terminal phase of heart failure may be as bad as cancer, both in terms of symptoms and distress ” . (Heart 2002;88(Suppl II):ii36-ii39)

What do we mean by palliative care?:

What do we mean by palliative care? “ Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual ” (WHO 2009)

Why is palliative care needed for heart failure: Evidence of need.:

Why is palliative care needed for heart failure: Evidence of need. Common Poor prognosis similar or worse than most cancers Terminal diagnosis Heart Failure

Despite advancing heart failure treatments the prognosis is worse than many cancers:

Women Men Despite advancing heart failure treatments the prognosis is worse than many cancers

Specialist Heart Failure Intervention:

Specialist Heart Failure Intervention Specialist medical and nurse led intervention have shown: Significant benefits in reducing hospital admission, and healthcare costs 40-50% reduction in recurrent hospital stay Heart failure management programmes have proved successful for patients whose condition stabilises following optimisation of evidence based therapy and most areas of the UK now have heart failure management programmes.

Why is palliative care needed for heart failure?:

Why is palliative care needed for heart failure? Symptom burden for heart failure is similar to cancer Patients understanding about heart failure is poor More likely to die in hospital Issues surrounding devices (ICD/CRT-P/D) Appropriate programming Symptom control from defibrillator shocks Activation / Deactivation Psychological issues Anticipatory prescribing post deactivation Carer support

Why is palliative care needed for heart failure?:

Why is palliative care needed for heart failure? Do not routinely associate heart failure with palliative care No accepted pathways of care to provide supportive/palliative care to patients with end stage heart failure

Slide 11:

What has stopped us before?

What has stopped us before?:

What has stopped us before? Cardiology Belief that palliative care only for: Patients facing imminent death Patients dying of malignant disease Concerns that palliative care would include discontinuation of all HF medications Not all HF patients are managed by cardiologist Concerns that inappropriate patients would fall into the “ palliative ” category For non-cardiologist difficult to be confident that all treatment options have been exhausted What can palliative care offer heart failure patients

Barriers to palliative care in Heart Failure:

Barriers to palliative care in Heart Failure Palliative Care Funding Resources are already stretched Concern that inclusion of HF patients would “ open the flood gates ” Rules surrounding hospices as “ cancer charities ” Unpredictability of heart failure When is the right time?

Barriers to palliative care in heart failure: Illness trajectory:

Time Onset of incurable cancer Barriers to palliative care in heart failure: Illness trajectory Function Death High Low Cancer Possible hospice enrollment Adapted from Murray, S. A et al. BMJ 2005;330:1007-1011

Barriers to palliative care in heart failure: Illness trajectory:

Time LV Systolic Function Death High Low Heart Failure Barriers to palliative care in heart failure: Illness trajectory D D D D = clinical decompensation Sudden cardiac death Adapted from Murray, S. A et al. BMJ 2005;330:1007-1011

Slide 16:

Or Is It ? “ Lets hope it ’ ll get better, when I know in my heart of hearts it won ’ t ” Selman et al 2007 Is Uncertainty Getting in the Way of Good Care ? Courtesy of the internet

Effect of barriers:

Effect of barriers Prognostic paralysis Missed window of opportunity to provide: Optimal symptom control Financial support Support for family and carers – IP & OP hospice facilities Psychological and spiritual support Discuss end of life decisions Resuscitation Deactivation of defibrillator Preferred place of care Arrange advanced care plans Unnecessary and prolonged hospital admissions Uncomfortable death: Instrumentation / discharges from defibrillator / CPR prior to death Death in hospital

Inequity of access to palliative care :

Inequity of access to palliative care Patients with HF and carers were less likely to have: Access to health, social and palliative care services An understanding of their illness and prognosis An opportunity to address end of life issues Patients with HF were more likely to: Be symptomatic compared to patients with cancer Die in hospital Remme et al. Eur Heart J 2005; 22: 2413-21 Allen et al. JAMA 2008;299:2533-42 Anderson et al. Pall Med 2001; 15: 279-86 Murray et al. BMJ 2002; 325: 929-932

Anne Marie and Iain’s Experience:

Anne Marie and Iain’s Experience

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