Why do we need palliative care in the era of treatment

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Why do we need palliative care in the era of
treatment?

• Dr Richard Harding
• Department of Palliative Care, Policy
  Rehabilitation
• Kings College London

http//www.kcl.ac.uk/palliative
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Overview

• What is palliative care?
• What does it offer HIV management?
• When by whom should it be provided?
• Does it make a difference?
• What prevents PLWHA receiving palliative care?

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What is palliative care?

• an approach that improves the quality of life of
  patients and their families facing the problems
  associated with life-threatening illness, through
  the prevention and relief of suffering by means
  of early identification and impeccable assessment
  and treatment of pain and other problems,
  physical, psychosocial and spiritual WHO

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Pain total care
Palliative care encompasses TOTAL pain it is not
adequate to address any in isolation
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HIV Palliative care

• WHO
• Palliative care is an essential component of a
  comprehensive package of care for people living
  with HIV/AIDS because of the variety of symptoms
  they can experience - such as pain, diarrhoea,
  cough, shortness of breath, nausea, weakness,
  fatigue, fever, and confusion.

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Overview

• What is palliative care?
• What does it offer HIV management?
• When by who should it be provided?
• Does it make a difference?
• What prevents PLWHA receiving palliative care?

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Reason 1 Terminal care

• HIV still life-threatening incurable disease
• Rich countries with universal ART access,
  infected still more likely to die than uninfected
  (Sabin 2004)
• 2.8 million HIV deaths in 2005
• Africa 2 million
• US/Europe 30,000

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• Reason 2
• ARVs not available for many terminal care needed
• Reason 3
• Late presenters advanced disease care
• In Sub-Saharan Africa palliative care used to
  stabilise initiate ART in advanced pts

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Reason 4 Care of the living

• Pain/symptoms throughout trajectory
• Physicians detect 1/3 of symptoms (Justice 2001)
• Sherr Harding, in preparation
• 5 outpatient HIV clinics in London, all patients
  under care
• N778, response rate 86
• Pain symptom prevalence previous 7 days

63.1 feeling drowsy/tired 55.5 worrying
51.2 diarrhoea 50 pain
47 changes in skin 46 numbness/tingling in
hands/feet 32.2 suicidal thoughts
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• Reason 5 supporting treatment
• ART assoc with symptom prevalence and burden
  (Harding et al Int J STD AIDS 2006)
• ART reported a higher number of symptoms than
  those without (14 v. 10.3, p0.001).
• Independently assoc with number of physical
  symptoms (p0.006), and physical distress score
  (p0.017), both increasing with ART use,
  controlling for age, year of diagnosis, CD4 and
  viral load.
• Psychological symptom burden independently
  associated with poor adherence (b0.14, plt0.001)
  (Sherr Harding, in preparation)

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• Reason 6 co-morbidities
• The extended chronic disease phase
• cancer
• end stage liver failure
• renal disease
• cerebrovascular disease

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Overview

• What is palliative care?
• What does it offer HIV management?
• When by whom should it be provided?
• Does it make a difference?
• What prevents PLWHA receiving palliative care?

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• When should we provide palliative care?
  Integration Cancer

Curative

Bereavement
Palliative
Diagnosis
Death
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When should we provide palliative care?
Integration HIV
Prognosis?
Diagnosis
Treatment
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Who can provide it?

• Multiprofessionalism is the hallmark
• ANYONE in the care team can be trained
• For the living not just the dying
• All HIV care staff should have generalist
  palliative care skills
• Also need assessment skills links when to
  refer to specialists? Palliative Care is a
  medical, nursing and social work specialty

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Overview

• What is palliative care?
• What does it offer HIV management?
• When by who should it be provided?
• Does it make a difference?
• What prevents PLWHA receiving palliative care?

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Does palliative care make a difference for people
with HIV disease?

• Systematic review 34 services described in 32
  studies
• Home palliative care and hospice care
  (multi-professional, trained staff)
• significantly improve
• Pain and symptom control
• Anxiety
• Insight
• Spiritual wellbeing
• Findings consistent with systematic reviews of
  the effectiveness of palliative care in cancer
• (Harding et al, Sexually Transmitted Infections
  2005 815-14)

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Is enough palliative care being provided?

• Global high prevalence of pain other
  distressing symptoms suggests not
• IAS Bangkok 2004
• 8629 abstracts presented
• how many addressed pain or symptoms or terminal
  or end of life or palliative or hospice?
• 13!
• (Harding Dinat Clinical infectious Diseases
  2005, 40491-492)

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Overview

• What is palliative care?
• What does it offer HIV management?
• When by who should it be provided?
• Does it make a difference?
• What prevents PLWHA receiving palliative care?

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Barriers to equitable and accessible HIV
palliative care (Harding et al, Palliative
Medicine, 2005)

• Service factors
• Poor end-of-life
• planning
• Treatment focus
• Poor specialist
• pain
• management
• access
• Low coverage in
• diverse settings
• e.g. nursing
• homes

• Clinician Factors
• Palliative v.
• general
• medicine tension
• Reluctance to
• address
• end of life
• Inadequate
• assessment
• skills
• Fear of analgesia
• misuse addiction

• Patient factors
• Poverty
• Rural locale
• Acceptance of
• sub-optimal
• analgesia
• Reluctance to
• address
• end-of-life

• Disease factors
• Lack of
• predictability
• Need for dual
• traetment/
• palliative
• approaches
• Need for ARV
• integration

INTENDED OUTCOME Integrated, equitable quality
palliative care delivered to the patient, as
needed, in conjunction with antiretroviral
therapy when initiated
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Summary

• An estimation from UNAIDS/symptom prevalence data
  in the last week
• 53,856 people needed end-of-life care died
• 17.9 million people experienced pain
• 16.8 million people experienced dermatological
  problems
• 18.3 million people experienced diarrhoea

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Summary

• Palliative care is an ESSENTIAL component of HIV
  care in all settings
• ART has made it more, not less, necessary
• Palliative care improves quality of life for the
  living and the dying
• All staff should be trained in generalist skills
• All sites should have access to multiprofessional
  specialists with communication and pain/symptom
  controlling resources

http//www.kcl.ac.uk/palliative