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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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Respecting patient choices advance care planning to improve patient care l.jpg

Respecting Patient Choicesadvance care planningto improve patient care

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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?

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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

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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

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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.

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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

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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

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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

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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

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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 tube17% no ventilation

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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


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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

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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

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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

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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)

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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.

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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”

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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“

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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

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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

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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

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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

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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)

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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

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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

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  • 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

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