Palliative care in heart failure: reflections on

the management of care

Professor Philip J Larkin

Joint Chair in Clinical Nursing ( Palliative Care)

University College Dublin and Our Lady’s Hospice and Care Services, Dublin, Ireland

Continuity of CareContinuity of Care

Disease Progression

DEATH

BEREAVEMENT

Curative Intent

Palliative Care

Curative care

Transition towards palliative care (Krakowski et al. 2004)

PrognosticationPrognosticationLife Defining Illness Life Defining Illness Actively Dying Actively Dying

What does a Good Death mean?

“ Good death is neither protracted nor sudden, its shape constituting a straightforward trajectory from deterioration to death”.Komaromy & Hockey 2001: 75

The Healthy Ageing agenda!

Understanding death

Death does not fit with the ideal of ‘healthy’ ageing

Focus on cancer as the predominant ‘palliation’

Disadvantage and discrimination of older people

Assumptions about primary care

The ‘revivalist’ good death

A pain-free death

Open acknowledgement of the imminence of death

Death at home

Conflict and ‘unfinished business’ resolved

Death with individuality

Death as personal growth

Clark D, (2002) Between hope and acceptance: the medicalisation of dying. BMJ, 324, 905–907

For heart failure patients...

The problems of prognostication and co-morbidity

Decreased likelihood of dying at homeBurden of care placed on the family

How aware should we be of death?

What are the opportunities for personal growth?

What are the realities of personal preference?

The Heart Failure pathway

Onset of symptoms (a combination of breathlessness, fatigue and oedema)

Iimprovement following standard treatment

Symptom stability

Symptoms become increasingly resistant to treatment

Progressive deterioration marked by episodes (possibly reversible) of decompensation

Terminal stage: the last few days of life

Dying in Heart Failure

The dying experience of heart failure patients

Aware that life is short but not prognosis

Pain and breathlessness hold greatest symptom burden

The choice of sudden, unaware death

‘Denial’ as an appropriate coping strategy

Fear of dying alone – home vs. Hospital

Gott M, et al. (2008) Older people’s views of a good death in heart failure: implications for palliative care provision Social Science & Medicine, 67, 1113-1121

Palliative approaches to careSymptom Management

Psychological, social, spiritual and practical support

Open and sensitive communication with patients, carers and professional staff

Referral for specialist palliative care when necessary.

Palliative concerns in Heart FailureShould we discuss dying?

How would you approach the facts of dying?

The recognition of mortality as a trajectory of life

A ‘timely’ death is always one where you are older than now.

Palliative Care communication issues

Breaking bad news

Advanced care planning

Addressing sudden death

Decisions around CPR or DNAR

Symptom management

Using Syringe Drivers

Discussion around Care Pathways

Community based palliative care for heart failure patients

Significant gaps in service provision

The Gold Standards Framework

Providing care in or near home

Patient choice in place of care/place of death

Maximizing QOL

Ivany E, While A Understanding the palliative care needs of heart failure patients British Journal of Community Nursing 18(9): 441-445.

Treating until the end

Offering treatments that relieve pain and other distressing symptoms until the end of life

Patients shouldn’t be subjected to invasive or aggressive treatment at the end of their lives

Advance Care Planningwww.endoflifecareforadults.nhs.uk A voluntary process of discussion over time

Decisions about current and future treatments

Values, aspirations and understandings

Statements of preferences or wishes

Advance decisions about refusal of treatment which may be legally binding

LVAD – a topic of concern

Communication is key

Switch on – switch off

Helpng families through decisions

Use of advance directives at the appropriate time

Explaining what happens after death

Ben Gal T, Jaarsma T. Self-care and communication issues at the end of life of recipients of a left-ventricular assist device as destination therapy. Curr Opin Support Palliat Care. 2013 Mar;7(1):29-35. doi: 10.1097/SPC.0b013e32835d2d50.

Interpreting end-of-life

“ We shall not cease from exploration and the end of all our exploring will be to arrive where we started and know the place for the first time”TS Eliot, “Four Quartets”

Listening to the still small voice

Final Journeys

Ross L, Austin J. Spiritual needs and spiritual support preferences of people with end-stage heart failure and their carers: implications for nurse managers. J Nurs Manag. 2013 Jul 17. doi: 10.1111/jonm.12087.

Connection & Coherence

Social support

Value not failure

Contribution

Hoping for something

Living in hope

Clarity of purpose

Clarity of mind means clarity of passion, too; this is why a great and clear mind loves ardently and sees distinctly what it loves.

Blaise PascalFrench mathematician, physicist (1623 - 1662)

What is the future for palliative care in heart failure?

Developing better approaches to prognostication

Improving gaps in symptom management beyond pain and dyspnoea

Seeking better models of collaborative practice

Evidence base is increasing

Higher quality trials are evident

Education around communication

Gadoud A, Jenkins SMM, Hogg KJ Palliative care for people with heart failure: Summary of current evidence and future direction. Palliat Med 2013 27: 822 originally published online 9 July 2013 DOI: 10.1177/0269216313494960

Questions?