AIMS

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AIMS

• The Prince of Wales Hospital Service
• NSW Health initiatives

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Advance Care PlanningService

• Since 2001
• 1 CNC
• Started with Nursing Home residents their
  families GPs
• Discussion re treatments care regarding end of
  life issues
• Who wants to document an ACD?
• Not 2-3 days, (usually 1-2 years)

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The NSW Context

• Consent
• Practitioners require a valid consent
• Capable Patients have the right to refuse
  treatment
• The Guardianship Act (1987) provides a mechanism
  for substitute consent for those who lack
  capacity to give a valid consent
• NSW Health
• Using Advance Care Directives (June 04)
• Guidelines for EOL care and decision-making Mar
  05
• NSW Health Circular 2004/84/ Consent (Dec 04)

Circular PD2005_406 or 2004/84 is MANDATORY POLICY
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Documentation Standards

1. Specificity
2. Currency
3. Witness
4. Capacity

• It needs to apply to the clinical situation that
  has arisen
• Does it reflect the current (known) wishes of
  the patient?
• Has the witness verified that it was completed
  voluntarily
• Assume capacity unless a valid trigger otherwise
• If any of these criteria not met, it may be set
  aside.

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POWH Project1.Education

• Inservices to staff on Consent, Substitute
  Decision Making and how advance care directives
  may apply
• RACF, Hospital Community Health staff,
• GPs at RACF mtgs, - via Divisions, interest
  groups
• Families via relatives mtgs in RACFs

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The POWH Project

• Large High level Care residents lack capacity
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• ?Involve Proxies/ Pers Resp
• Volicer et al 2002 (JAGS 50761-767)
• Karlawish et al 1999 (Annals Int Med. V130 N10)
• Guardianship Tribunal (previously) agreed Pers
  Resp can complete a Plan of Care (not an ACD!)

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2. An OrganisationalApproach

• RESIDENTIAL CARE
• Identify Person Responsible on admission
• Case conference (4-6/52 following admission)
  raise Question re ACD?
• Invite resident/ relative for more info
• Document ACD or Plan of Care
• Policy to support ACP Process

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2.Clinical Care

• Hospital - Follow up referrals from
• ED, Inpatient wards (POWH SVH) Post Acute Care
  Palliative Care Services
• Residential-
• Identify residents at end stage (primarily
  dementia)
• Discussion Documentation of ACDs or Plans of
  Care. Focus on what can be done!
• Resident may still require transfer to hospital
  for diagnosis/symptom management if GP
  unavailable
• Community
• Case managers/GPs identify those wishing to
  explore issues further

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In reality.

• The majority of people with advancing dementia
  have never thought about what care and treatment
  they may want/not want at what point.
• as the disease progresses, they may lose the
  ability to discuss what is important to them or
  consider treatment options

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MILD MODERATE SEVERE TERMINAL
I N D E P E N D E N C E
MEMORY PERSONALITY SPATIAL DISORIENTATION
RESISTIVENESS INCONTINENCE EATING
DIFFICULTIES MOTOR IMPAIRMENT
APHASIA APRAXIA CONFUSION AGITATION INSOMNIA
BEDFAST MUTE DYSPHAGIA INTERCURRENT
INFECTIONS
TIME
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MILD MODERATE SEVERE TERMINAL
CAPACITY
MEMORY CLINICS Consider Subs. Dec-maker EPOA
P/R E/G Discuss? ACD
GREY AREA Fluctuating levels of confusion ?
Depression, delirium
Reverse what is reversible - Review when stable
Plan of Care for those incapable Of consent
Give best opportunity for promoting capacity and
ability, environment to provide input into their
own care wishes Shared decision-making/ values
TIME
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Decisions, Decisions

• The decisions will fall to the person/s
  responsible
• Forewarned is forearmed
• This discussion is never easy
• Especially in an emergency!
• But questions will be asked
• Either on admission to services, aged care
  facilities, or, in Emergency Dept, when you least
  expect it.

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Plan of Care

• Where a patient/resident is incapable of
  discussing their healthcare wishes, the family,
  or more importantly, the person responsible can
  indicate in a Plan of Care the aims and levels of
  care they consider would be appropriate,
• This is done with facility staff and the via
  discussion with the GP.
• Other consultations/opinions may be sought.

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• The Plan outlines the aims of care and provides a
  good foundation for future treatment based on the
  evidence and current individual situation.
• When a patient/ resident becomes ill, the staff
  are aware of what the expectations are, in the
  context of current situation (symptoms).
• Options for treatment within the facility are
  noted
• Facility staff involved
• ED staff aware
• Consent may still be required for specifics

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CPR / No CPR

• CPR
• Use cardiac massage with mouth to mouth
  breathing may also include
• Intravenous lines drugs
• electric shocks to the heart defibrillators),
• tubes in throat to lungs (endotracheal tubes)
• No CPR
• make no attempt to resuscitate, you will die

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However!CPR

• In hospital, overall CPR successful (to discharge
  from hospital) 13 of pts treated (1)
• Pts living in long-term care (800),
• success rate (admission to hospital alive) 143,
  (on average lt18 , - range 8.9 - 40 )
• survival rate (discharge from hospital alive) 27
  (on average lt 4 800 - range 0-10.5)(2)

1.Ebell et al J Gen Intern Med.199813805-816 2.
Finucane Harper J Am Ger Society
1999471261-1264
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Reversible or Irreversible?

• Reversible
• A life threatening illness or injury that is
  curable, meaning that losses in my ability to
  function are not permanent

• Irreversible
• The condition is likely to leave you an
  irreversible permanent disability or decrease in
  function
• Each of us would accept different irreversible
  disabilities
• Discuss with Dr and other relevant people ie,
  family, religious and cultural leaders

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Levels of Care

• Palliative/ Comfort
• Limited
• Active
• Intensive

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Palliative/ Comfort

• Free from pain discomfort as much as possible
• Any treatments or investigations will be for the
  purpose of enhancing comfort or minimizing pain
• Analgesia
• this may include surgery (ie, to relieve pain
  following fracture)

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Limited

• Palliative, plus
• May include transfer to hospital as required
• Intravenous therapy (I.V or drip)
• Antibiotics
• Trial of appropriate drugs
• blood- transfusions, tests, cross-matching
• non-invasive investigations treatments (short
  of elective surgery)
• No elective surgery except for pain relief

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Surgical/Active

• Limited, plus
• transfer to hospital for evaluation
• gastroscopy, endoscopy, colonoscopy (all
  investigations) surgery (if necessary)
• ventilation for the purposes of anaesthesia/
  surgery may be included

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Intensive

• Surgical/Active, plus
• Transfer to hospital without hesitation
• all possible treatments in a large modern
  hospital
• Admit to ICU if necessary
• all options, ventilation, central venous lines,
  monitoring, transplants, dialysis
• do everything possible to maintain life

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What are the advantages and disadvantages of
going to hospital for treatment as opposed to
staying at home or in the aged care facility?
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Transfer to Acute Care

• Secure environment v elopement risk
• Restraint may be required
• Tests well tolerated if cognitively intact
• Confused pt becomes anxious /- combative
• /- additional treatment following diagnosis
• Leading to complications, therefore restraint
  required decrease in mobility, pressure areas,
  incontinence hasten functional decline in
  vulnerable pt (3)

3.Applebaum et al J Am Ger Society 199038197-200
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So what are the alternatives?

• Geriatrician visit
• Post Acute Care or Hospital outreach service
• Palliative Care
• Depends on knowledge of local services and what
  is available

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Feeding

• Basic Supplemental (self explanatory)
• Intravenous
• Tube

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Tube

• Tube feeding. There are two main types
• Nasogastric Tube a soft plastic tube passed
  through the nose or mouth into the stomach
• Gastrostomy Tube a soft plastic tube passed
  directly into the stomach through the skin

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Feeding tubes

• Nasogastric may be beneficial in the short term
• But confused patients often pull them out!
• They are uncomfortable
• It could be the patient way of telling us they
  have had enough or are objecting
• Dilemma .

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MEAN DISCOMFORT RATING (1-10)(n100)

• Nasogastric tube 8.81.9
• Mechanical ventilation 8.05.4
• Mechanical restraints 7.83.2
• Indwelling urethral catheter 6.22.9
• Phlebotomy
  3.62.6
• I.M. or S.C. injection
  3.52.7
• Movement from bed to chair 2.62.6

Morrison et al. J.Pain Sympt.Manag.15,91,1998
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PEG Tubes advanced dementia

• 1996-1999 meta-analysis
• Prevent aspiration pneumonia?
• Prolong survival?
• Reduce risk of pressure sores or infections?
• Improve function?
• Provide palliation?

Finucane T et al, Tube feeding in patients with
advanced Dementia a review of the evidence JAMA
Vol 282(14),1991 pp267-274
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What is a Palliative Approach?

• Focus on care by maximising function Quality of
  Life
• Minimise all negative factors
• Anticipate complications (such as aspiration
  pneumonia)
• Manage symptoms (HITH or Palliative Care)
• Maximise positive factors
• Enjoyment
• Namaste (Simard)
• Sensory stimulation
• Massage/ Aromatherapy
• Music
• Simulated presence
• Taste
• You dont need to wait until the 11th hour to
  adopt it!

Guidelines for a Palliative Approach in
Residential Aged Care 2004. DoHA
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NSW Health Initiative

• Advance Care Planning in residential care
• 0.6 FTE per Area Health Service to assist
  residential care by fine tuning processes,
  improve partnerships between acute and
  residential, palliative care and general practice

Caplan et al Age and Ageing 2006 35 581585
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Constraints!

• WK v Public (no 2) 2006 NSW ADT 121
• OPG can consent to Palliative Care but cannot
  sign a not for CPR order or consent to the
  withdrawal of treatment Drs decision
• ?legality of EOLDM guidelines given shared
  decision-making emphasis
• Applies to Public Guardians
• Where does that leave us trying to plan for
  provision of care between the law and the
  clinical realities
• Are we out of step?

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Evidence promoting advance care planning with
families (proxies)

• Karlawish, Gillick (1999)
• Volicer (2002)
• Whitney (2003)
• Jordens (2005)
• Lamberg et al(2005)
• Winzelberg(2005)
• Engell -CASCADE study (2006)

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So at your leisure

• Identify -Who would be your person responsible?
  (Sheet 1)
• According to GT hierarchy,
• Is there a need to appoint an E/Guardian?
• Have you discussed issues and wishes with them?
  Whats important?
• What would be an intolerable functional
  situation.this can be difficult to define.
• Then
• Consider documenting an ACD

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Sheet 2 -Consider each of the responsibilities
listed in the left hand column, and write down
the names of three possible spokespersons you
feel are well qualified to act for you in this way
Names of Possible Spokespersons Names of Possible Spokespersons Names of Possible Spokespersons
Name 1 Name 2 Name 3
Would be willing to speak on my behalf
Would be able to act on my wishes and separate his/her own feelings from mine.
Lives close by or could travel to be at my side if needed
Knows me well and understands whats important to me.
Could handle the responsibility.
Will talk with now about sensitive issues and will listen to my wishes.
Will be available in the future if needed
Would be able to handle conflicting opinions between family members, friends and/or medical personnel
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Tools

• My Health, My Future, My Choice
• Let Me Decide
• Law Society of NSW
• Planning My Future Medical Care (Catholic
  Healthcare)
• Colleen Cartwright (Lismore)
• Hard choices for loving people (Hank Dunn)
• planningwhatiwant.com.au
• Respectingpatientchoices.org.au

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Contact Details

• Anne Meller 9382 2984 (voicemail)
• anne.meller_at_sesiahs.health.nsw.gov.au