Palliative care in heart failure: reflections on the management of care

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

3. Curative Care Palliative Care Palliative/terminal care Specific Oncology treatment Terminal Phase Bereavement Supportive Oncology treatment Diagnosis Development Death Transition towards palliative care (Krakowskiet al. 2004)

4. PrognosticationLife Defining Illness Actively Dying

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

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

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 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

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. 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.

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.

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 PascalFrench 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. PalliatMed 2013 27: 822 originally published online 9 July 2013 DOI: 10.1177/0269216313494960

26. Questions?