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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 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?