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Palliative care in heart failure: reflections on the management of care Professor Philip J Larkin Joint Chair in Clinical Nursing ( Palliative Care) University.

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Presentation on theme: "Palliative care in heart failure: reflections on the management of care Professor Philip J Larkin Joint Chair in Clinical Nursing ( Palliative Care) University."— Presentation transcript:

1 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

2 Continuity of Care Disease Progression D E A T H B E R E A V E M E N T Curative Intent Palliative Care Curative care

3 Transition towards palliative care (Krakowski et al. 2004)

4 Prognostication Life Defining Illness Actively Dying

5 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

6 The Healthy Ageing agenda!

7 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

8 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

9 For heart failure patients... The problems of prognostication and co-morbidity Decreased likelihood of dying at home Burden 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?

10 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

11 Dying in Heart Failure Death Excluded Dependent Breathless and weary

12 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

13 Palliative approaches to care Symptom Management Psychological, social, spiritual and practical support Open and sensitive communication with patients, carers and professional staff Referral for specialist palliative care when necessary.

14 Palliative concerns in Heart Failure Should 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.

15 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

16 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.

17 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

18 Advance Care Planning 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

19 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.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.Curr Opin Support Palliat Care.

20 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”

21 Listening to the still small voice

22 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.J Nurs Manag.

23 Connection & Coherence Social support Value not failure Contribution Hoping for something Living in hope

24 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 Pascal French mathematician, physicist (1623 - 1662)

25 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

26 Questions?

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