Respecting Patient Choices
advance care planning
to improve patient care
Familiar scenarios
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A 93 yr mother with dementia, from a nursing home, in hospital for 6 weeks
with # NOF
An 84 yr mother, bedbound & unable to speak after a stroke, heading for a
PEG and private hospital
A 62 yr father with a terminal condition, who has requested NFR, is
resuscitated (no form)
A 70 year old man with severe COPD who has been admitted 8 times in the
last year and offered NIV
Multiple rest home and private hospital admissions direct to ED without
communication with medical team for patients with a terminal illness
Common factors: Choice? Communication? Family upset?
Why is advance care planning
important?
• Most people (~ 85%) die after chronic illness, not a sudden event
• Up to half of us are not in a position to make our own decisions
when we are near death
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• Our family have a significant chance of not knowing our views
without discussion
• A doctor who is uncertain about what to do, and who has to make a
decision, will often treat aggressively (particularly if inexperienced
and in acute care setting)
• Many of us will be kept alive under circumstances that are not
dignified, frequently suffering and in a way that we would not have
wanted
What is advance care planning?
… ‘a process, whereby a patient, in consultation with health
care providers, family members and important others,
makes decisions about his or her future health care,
should he/she become incapable of participating in
medical treatment decisions’.
•
Ethical principles
Peter Singer et al 1996
- autonomy - informed consent
- dignity
- prevent suffering
The Victorian Experience
• 1987- Dying with Dignity Inquiry of the Victorian
Parliament – an extract:
• The Committee is in agreement with the views of witnesses that a
decision to allow hopelessly ill, suffering human beings to die
naturally is a profound act of compassion.
• Such decisions are morally appropriate with the deepest respect for
life.
• The Committee finds that good medical practice not only
encompasses a duty of care, but also requires ongoing discussions
with the patient and/or family in the formulation and implementation
of clear not-for-resuscitation policies and guidelines, whenever
possible.
Medical Treatment Act 1988
Aim
• to protect patient’s right to refuse unwanted Rx
• to protect Drs who act in good faith re pt wishes
• to recognise difficulties for Drs advising/guiding pts
• to state clearly how pts can express treatment wishes
• to encourage community/professional understanding
re change of focus of Rx from cure to pain relief
• to ensure that dying patients receive max relief
Medical Treatment Act 1988
The main tools
1. Medical Enduring Power of Attorney
2. Refusal of treatment certificate
– valid for current illness
Yet the Office of the Public Advocate:
 low awareness & uptake
Why have these attempts
failed?
• Not confronting problem of lack of communication
between patients and doctors
• Advanced Care Plans not easily accessible
• Clinicians managing acutely unwell patient in hospital not
aware of ACPs or of pt wishes
• Not addressing the cultural resistance to discussing EOL
care that is common to doctors, patients and their family
•
Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med.
2001; 29 suppl:N34-N39
A Successful Advance Care
Planning Program
• Respecting Choices® /
• Community wide program La Crosse,
Wisconsin
• First applied to select patient groups in
hospital then extended in the hospital and the
community
• Recognised as “best practice” by The [US]
National Coalition on Health Care and The
Institute for Health Care Improvement
Respecting Choices:
the result
– Community results 2 years post implementation
– 85% of patients who died had completed ACPs (increased from
15% pre-program)
– 96% of ACPs were available in “the green sleeve” in patient
medical records (increased from 4% pre-program)
– In 98% of deaths the patient’s wishes, as stated in the ACPs,
were followed
– 100% no CPR
32% no hospitalisation
– 18% no feeding tube
17% no ventilation
Pilot study at the Austin Hospital
• Funded by National Institute of Clinical Studies
• Aug-Dec 2002: Trained 120 nurses, social workers,
pastoral care workers, interpreters, some doctors
• Piloted
aged care, oncology,
cardiology, nephrology,
vascular & thoracic surgery
• > 1000 Respecting Patient Choices discussions with
patients/NOK
• http://www.respectingpatientchoices.org.au
The “Five Aims of RPC”
•
Initiate conversations with adults regarding
views about future medical care
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Assist individuals with advance care planning
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Make sure plans are clear
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Ensure plans are available
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Appropriately follow plans
Key Elements of the RPC
Program
• Train doctors and non-medical staff
– 2 day training course
– to discuss advance care planning
• Implement system changes
– medical records
– process changes
• Use existing tools of the Medical Treatment Act (Vic) 1988
– Medical Enduring Power of Attorney
– Refusal of Treatment Certificate
• Health professional education
– GP education toolkit
– RACGP and RACP website
Pilot study evaluation: April
2003
300 patients in target areas
• 63% of patients had a Green sleeve
documented discussion around ACP
• 68% of discussions resulted in documented
request (advance care plan, documented
request, NFR or combination)
Pre-program
• No ACPs and 10% with NFRs that were poorly
completed
Pilot study evaluation
• ACPs:
•
100% appointed medical enduring powers of
attorney
• 78% requested no life prolonging procedures if
•
“I will not be able to interact meaningfully
with
myself, my family, friends and
environment”
•
• 82% want no CPR (52% at all, 30% depends on
outcome)
By August 49 (16%) patients
had died
74% had a documented expression of
treatment in their medical record
Of all the medical records reviewed
95% of patients main wishes have been
respected.
Pilot study impact
• Patients’ wishes were being respected and
followed through:
“I want to die at home and not return to
hospital”
“Please make sure that I die outside, under
the stars”
“If I deteriorate want to be kept dry but not
resuscitated or admitted to ICU”
Pilot study: impact
• Patients recognise their right to make informed
decisions now, as well as for the future:
– "I want no further chemotherapy now",
– "I would like to have the tracheostomy out now and to
stop ventilation”
– "I do not want the tracheostomy that is booked for
tomorrow”
– "I want no further transfusions"
– "I want you to make me as well as possible so that I
can get home for my daughter's 21st birthday before I
die“
Impact on staff
• `The program has allowed clear expression of patient’s
wishes and has been a very useful addition to our clinical
practice - one that ultimately allows our patients more
control over their future treatment.’
Nephrologist 2005
• RPC has …empowered nurses to complete their care in
an honest and supportive role to chronic patients who in
the past thought we were hiding the issues from them. I
don't believe we can we ever live without it!'
Renal Nurse 2005
Introduced to 17 Hostels &
Nursing Homes
• Began February 2004, 2 year evaluation
• 1108 residents
• Median age 86 (range 31-101)
• 76% female
• 37% competent
• 38% not competent
• 25% uncertain
What was the impact of RPC
Program?
• 51% of 1108 residents were introduced
– Of 565 introduced, only 12 residents refused further discussion
• Of those introduced 52% residents and/or
families completed advance care plans
– cf 3% of those not introduced (p < 0.0001)
• 42% completed by resident
• 58% completed by family on behalf of noncompetent resident
What was requested?
• 90% requested to receive no life-prolonging measures
• 87% requested symptom and pain management
• 34% requested to be cared for at the facility at end-of-life
– 17% requested brief admission to hospital
– 6% requested admission to hospital for aggressive treatment
• Many other personal requests
What were the outcomes?
• 16% of residents died during the 2 year evaluation
• 58% of the deceased residents had been introduced to RPC
• Of these, 89% had advance care plans (ACP)
– cf 42% of those not introduced to RPC (p < 0.0001)
• 96-100% of their wishes were respected at EOL
• 85% of those with ACPs received EOL care in their facility
– cf 33% of those without ACPs (p < 0.0001)
• Likelihood of dying in hospital is much greater without RPC
introduction: 46% vs 18% (p=0.0002)
CMDHB “Respecting Patient
Choices” Strategy
• To implement a strategy similar to that
being introduced in Australia and pilot over
2 years
• To employ 1FTE “clinician” to head the
implementation of the plan and 0.1-0.3FTE
“clinicians” from:
palliative care, HSE, renal, respiratory,
cardiology, surgery
CMDHB “Respecting Patient
Choices” Strategy
• Contract Austen Hospital Team to train staff and
support set-up and monitoring requirements
• Implement key components of RPC programme
• Evaluate efficacy of programme using same
tools as Australia and compare outcomes across
2 countries
• If effective evolve national strategy for NZ and
develop more robust business case for future
Challenges/obstacles
• Good idea; ALL agree that the outcomes
are likely to be positive, including cost
savings, BUT:
– Difficulty with less can be better!
– Whose budget
– Where is it most appropriate
• Primary care
• Resthomes/private hospitals
• Secondary/tertiary care hospitals