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Respecting Patient Choices advance care planning to improve patient care. Familiar scenarios. 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

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familiar scenarios
Familiar scenarios
  • 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
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
  • 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
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’.

  • Peter Singer et al 1996

Ethical principles - autonomy - informed consent

- dignity - prevent suffering

the victorian experience
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


  • 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
Medical Treatment Act 1988

The main tools

  • Medical Enduring Power of Attorney
  • Refusal of treatment certificate
        • valid for current illness

Yet the Office of the Public Advocate:

      • low awareness & uptake
why have these attempts failed
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
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
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
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

The “Five Aims of RPC”

  • Initiate conversations with adults regarding views about future medical care
  • Assist individuals with advance care planning
  • Make sure plans are clear
  • Ensure plans are available
  • Appropriately follow plans
key elements of the rpc program
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
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)


  • No ACPs and 10% with NFRs that were poorly completed
pilot study evaluation
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
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
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 impact18
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
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
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
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 non-competent resident
what was requested
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
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
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 strategy25
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