DILEMMAS ASSOCIATED WITH THE WITHDRAWAL OF TRACHEOSTOMY VENTILATION AT HOME - PowerPoint PPT Presentation

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DILEMMAS ASSOCIATED WITH THE WITHDRAWAL OF TRACHEOSTOMY VENTILATION AT HOME

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Feb 05: limb weakness causing increasing dependency bed-bound ... Wife, 2 sons, sister and brother-in-law chose to be present along with nurse ... – PowerPoint PPT presentation

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Title: DILEMMAS ASSOCIATED WITH THE WITHDRAWAL OF TRACHEOSTOMY VENTILATION AT HOME


1
DILEMMAS ASSOCIATED WITH THE WITHDRAWAL OF
TRACHEOSTOMY VENTILATION AT HOME
  • Dr Richard Sloan
  • Medical Director
  • Joseph Weld Hospice
  • Dorchester, UK

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  • Nov 2002 MND diagnosed
  • Mar 2003 Assisted ventilation
  • Feb 2004 Tracheostomy ventilation
  • Apr 2004 Went home with 24hr nurse support
  • Nov 2004 Case presented at Allied
    Professionals Forum, Philadelphia

6
Factors considered by Richard before opting for
tracheostomy ventilation
  • strain on family
  • wanted extra time to finish scientific papers and
    spend with family

7
  • As long as I can continue to use my brain to
    communicate, life is worth living.
  • Wanted control over stopping ventilation if life
    was no longer worth living
  • living will

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End of Life Decisions in ALS a cross-cultural
perspectiveSmyth et al, J of Neurological
Sciences 152 Supl 1 (1997) S93-6
  • USA ventilation option discussed with most
    patients at some stage
  • UK ventilation discussed by only 8 of doctors
    of MND patients
  • Japan traditionally, diagnosis and decision to
    ventilate not discussed with patient this now
    changing

10
Take up of tracheostomy ventilationUSA 1.6
14.3UK lowJapan 36 (03)
11
Withdrawal of tracheostomy ventilation legal
and ethical differences between countries
Miller et al (1999) Practice Parameter The care
of the patient with ALS. Neurology, 52,
1311-23The mentally competent and informed
patient has the right to refuse or discontinue
any treatment, including life-support.
12
Japan once initiated, ventilation cannot be
discontinued
13

Ventilator dependence and expressions of need a
study of patients with ALS in JapanHirano et al,
Social Science and Medicine 62 (2006) 1403-13
  • In 30 of patients, ventilation was initiated in
    an emergency without patient/family consent
  • 87 of patients worried about burden on family
  • 65 of patients worried about financial burden

14

Richards progress
  • Feb 04 tracheostomy
  • Feb 05 limb weakness causing increasing
    dependency bed-bound
  • concentration span for reading/writing on
    computer getting less

15
Aug 05 Ive almost had enough
2 days before ventilator withdrawal Fiendish
Sudoku completed
15 Aug 05 So sorry I want the ventilator
switched off as soon as possible.
16
Joint visit to Richard with his general
practitioner to check that his wish was genuine
and sustained
He asked for sedation whilst preparations for
withdrawal were being made
Wife, 2 sons, sister and brother-in-law chose to
be present along with nurse
17
Midazolam 10mg given intravenously in 1mg
increments over 10 mins Borazio Voltz (1998)
Discontinuation of mechanical ventilation in
patients with ALS. Journal of Neurology 245,
717-22
18
Ventilator connection tube detached after 5
mins

No spontaneous respirations until pulse ceased
after 15 mins
19
Reflections
RS What would it be like? How long after
ventilator disconnected would life continue?
Conflict between meeting patients wishes and
feeling like I was committing euthanasia
20
Family It was very peaceful the best he could
have hoped for, with family around him
Nurses would have liked more information before
ventilator withdrawal about the ethics and
legality and what to expect
21
Conclusions
  • Tracheostomy ventilation can be appropriate for
    some MND patients who have been fully informed
    and have specific realistic aims
  • Patient and family have to fully consider the
    burdens of ventilation physical, emotional,
    financial
  • Even when discussed fully in advance, actual
    withdrawal is a very emotional time for everyone
    patient, family and professionals

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