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

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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 Ladys Hospice
  and Care Services, Dublin, Ireland

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Continuity of Care
B
D
E
Curative
Curative Intent
R
care
E
E
A
A
V
E
M
T
Palliative Care
E
N
H
T
Disease Progression
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Transition towards palliative care (Krakowski et
al. 2004)

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PrognosticationLife Defining Illness
Actively Dying
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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

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The Healthy Ageing agenda!
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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

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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, 905907

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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?

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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

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Dying in Heart Failure
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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 peoples views of a
  good death in heart failure implications for
  palliative care provision Social Science
  Medicine, 67, 1113-1121

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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.

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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.

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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

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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.

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Treating until the end

• Offering treatments that relieve pain and other
  distressing symptoms until the end of life
• Patients shouldnt be subjected to invasive or
  aggressive treatment at the end of their lives

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Advance Care Planningwww.endoflifecareforad
ults.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

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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
  Mar7(1)29-35. doi 10.1097/SPC.0b013e32835d2d50.
  

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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

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Listening to the still small voice
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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.

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Connection Coherence

• Social support
• Value not failure
• Contribution
• Hoping for something
• Living in hope

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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)

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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

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Questions?