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Respecting Patient Choices advance care planning to improve patient care.

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1 Respecting Patient Choices advance care planning to improve patient care

2 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?

3 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

4 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

5 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.

6 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

7 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

8 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

9 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

10 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

11 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

12 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 The “Five Aims of RPC”

13 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

14 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

15 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)

16 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.

17 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”

18 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 21 st birthday before I die“

19 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

20 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

21 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

22 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

23 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)

24 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

25 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

26 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

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