/AH14187_AC CSIRO Australian Health Review 2015, 39,

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1 /AH14187_AC CSIRO 2015 Australian Health Review 2015, 39, care planning in 21st century Australia: a systematic review appraisal of online advance care directive s against national framework criteria Tim Luckett 1,5 PhD, Senior Research Fellow Priyanka Bhattarai 1 BN (Hons), Research Assistant Jane Phillips 1 PhD, RN, Professor Nursing (Palliative Care) Director Centre Cardiovascular Chronic Care Meera Agar 2 MBBS,MPC, FRACP, FAChPM PhD, Director of Palliative Care, Braeside Hospital, HammondCare; Conjoint Associate Professor, the University of New South Wales (UNSW); Clinical Trial Director, Ingham Institute of Applied Medical Research David Currow 3 B Med MPH FRACP, Professor of Palliative Supportive Services Yordanka Krastev 1 MD PhD, Research Ethics Manager Patricia M. Davidson 4 PhD Med RN FAAN, Dean Professor 1 Faculty of Health, University of Technology Sydney, Building 10, Level 7, Jones Street, Ultimo, NSW 2007, Australia. priyanka.bhattarai@uts.edu.au; jane.phillips@uts.edu.au; yordanka.krastev@uts.edu.au 2 Department Palliative Care, Braeside Hospital, Locked Bag 82, Wetherill Park, NSW 1851, Australia. meera.agar@sswahs.nsw.gov.au 3 Department Palliative Supportive Services, Flinders University, Health Sciences Building, Repatriation General Hospital, Daws Road, Daw Park, SA 5041, Australia. david.currow@health.sa.gov.au

2 4 School of Nursing, Johns Hopkins University, 525 N Wolfe Street, Baltimore, MD 21205, USA. pdavidson@jhu.edu 5 Corresponding author. tim.luckett@uts.edu.au Supplementary Table 1. Results from appraisal of 14 ACD s guidelines against criteria from the 2011 National Framework Care Directives (1) ACD Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs ACT Health Care Plan (ACT) (19) Consumers Space to list current health problems Health conditions, treatments Patient testifies to soundness of own mind Additional SDM Consultation with RPC consultant; to HP family Comes into effect only when not able to speak self; law requires wishes must be taken into account when determining treatment 6

3 Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs Dying with Dignity Victoria Healthcare Directive (VIC) (20) GPs s Diseasespecific s (e.g. dementia) are available to DWD members. Example of completed HP as HP as Additional SDM HP clarification; family ; copy on medical records if in hospital Right to refuse treatment legal status of Refusal of Treatment Certificate specific lifethreatening diagnosis. Reference to work by DWD to include within statute law. 7

4 Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs Healthy North Coast - care or health directive (NSW) (24) Hunter New Engl Local Health District Care Plan (NSW) (21) Multidisicplina ry HPs s No inmation 3 scenarios - current health, severe dementia, bedridden unable to communicat e, if admitted to hostel or nursing home; proxy completion also available Broadscale applicability Potential outcomes of care (including detailed description of dementia progression) treatments Detailed hbook HPs info on roles of family Website includes checklist identifying SDM Patient testifies to soundness of own mind SDM can sign to say discussion has happened Recommend s discussion with Enduring Guardian, EPA medical team Dissemination to HP family Consultation with to HP family Legal status of document; only comes into ce when capacity lost; cannot be overruled without a court order. Website info has section on rights (includes The Laws of Consent professional ethics to support the rights of SDM to consent or refuse treatment). 8 3½

5 Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs Medicare Local Central Coast Planning What I Want Care Directive (NSW) (22) NT Health Department Statement of Choices (NT) (23) Multidisicplina ry HPs s No inmation Asks whether have a chronic condition bases on whether current health status is unacceptabl e or not. Broadscale applicability Health conditions, treatments, beliefs, Treatments SDM role checklist choosing one SDM Consultation with HP; to HP family Patient testifies to soundness of own mind Attorney appointmen t space provided but does not promote ACD encourages medical understing NT Health flyer supports Reference to common law Referral to the Natural Death Act; comes into effect only when not able to speak self 6 4½ RPC Statement of Choices (QLD) (26) Consumers Space to list current health problems Treatments, reasons why one might wish to change Consumer,, SDM HP as ; further attest that (s)he is not a nominated attorney to the person or a relation Also advice on criteria SDM Consultation with HP; to HP family Info on legal status of statement of choices, AHD SDM appointment; underst that doctors will only provide 8½

6 Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs or a beneficiary under the person s will treatment that might be medically beneficial RPC Statement of Choices (VIC) (27) Consumers Space to list current health problems Treatments Not ACD, but Refusal of Medical Treatment EPA s as well as inmatio n booklets available in Greek, Italian Arabic Consumer, HP, SDM HP as Also advice on criteria SDM Consultation with HP; to HP family Info on legal status of statement of choices, AHD SDM appointment; underst that doctors will only provide treatment that might be medically beneficial 7½

7 Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs RPC Statement of Choices (WA) (25) Consumers Broadscale applicability Treatments Consumer Patient testifies to soundness of own mind Dissemination to HP family Advises that statement of wishes will be taken into account when determining my treatment 3½ SA Health Anticipatory Direction (SA) (32) No inmation Examples are given both health states Treatments, outcomes of care Requireme nts of + duties of Understi ng of nature effect of AD; must be authorised Not on but reference in guideline to appointmen t of enduring guardian medical agent Discussion with GP, to family Cannot request euthanasia, comes into effect only when incompetent; refers to Palliative Care Act 1995; says carers 'bound to' follow wishes; lists criteria ACD to be valid 6½

8 Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs Southern Cross University Queensl Government Health Care Directive (QLD, with derivative NSW) (28, 29) Multidisicplina ry HPs s Broadscale applicability Health conditions, treatments, beliefs, Consumer, HP,, SDM QLD ; NSW Attorney appointmen t, acceptance revocation s on website Consultation with HP; to HP family QLD - Info on right to refuse but not request treatment or euthanasia; comes into effect only when not able to speak self; criteria regarding age capacity; attorney s give details of powers. NSW - Advice to sign bee qualified. QLD 7½ NSW 7 Tasmanian Department of Health Care Directive Care at the End of Life (TAS) (30) Broadscale applicability Directives detailing unacceptabl e outcomes Space interpreter to sign Witness Enduring Guardian Person Responsible (someone not appointed as EG but who could be contacted to speak on behalf if Consultation with to HP family Website link says: Under common law in Australia, it is expected that a doctor should comply with the wishes expressed in an Care Directive, taking into account the 7

9 Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs needed) clinical situation at the time. They would also talk to the Person Responsible or Enduring Guardian who can speak on your behalf about what they know of your wishes. Community slide show gives info about common law right to refuse not dem

10 Consultation during development Applicable in ill good health ACP fully defined Scenarios/ used Translated Roles clarified guidance provision SDM Encourages discussion inmation on legal status of ACDs WA Department of Health Health Directive (WA) (31) Multidisicplina ry HPs s Workbook asks to identify state of health related concerns Health conditions states, treatments Inmatio n but not available in written audio Arabic, Cantonese, Marin, Croatian, Italian, Polish, Serbian, Vietnames e Stipulates requireme nts gives reasons why it may be advisable to confer with family HPs. Designates one of es must be authorised to statutory declarations Defers to Enduring Power of Guardianshi p. Indicates SDM may be alternative to ACD. tick box to say has been completed. Consultation with to HP family Details lack of right to request euthanasia; comes into effect only when not able to speak self; circumstances under which ACD will be ruled invalid ACD = advance care directive; ACP = advance care planning; EPA = enduring power of attorney; HP = health professional; RPC = Respecting Patient Choices ; SDM = substitute decision-maker; * overall s were derived by summation of s each criterion allocated as follows: criterion met 1, criterion partially met ½, criterion not met 0. 7½

11 Supplementary Table 2. Results from appraisal of 14 ACD s against criteria from the 2011 National Framework Care Directives (1) ACD Adaptable to online hard copy Readability (US grade) Unfamiliar terms explained Transferable across care setting Instructions exact or Separates health care vs other space name, DOB signature date of review makes it easy to update refusal consent Allows separate direction different kinds of incapacity Enables recording of values life goals ACT Health Care Plan (ACT) (19) Pdf 11 Space to enter people holding copy Implies Values, acceptable outcome 4½ Dying with Dignity Victoria Healthcare Directive (VIC) (20) Pdf 13 Reference to if entering a hospital, hospice or other healthcare facility. DWD s available to members include aged care-specific. Implies direct Relevant s available to DWD members But uses opt -in mat. option to request directive should be enacted even if HPs think good chance of recovery Generally assumes values are against life sustaining treatment 5

12 Adaptable to online hard copy Readability (US grade) Unfamiliar terms explained Transferable across care setting Instructions exact or Separates health care vs other space name, DOB signature date of review makes it easy to update refusal consent Allows separate direction different kinds of incapacity Enables recording of values life goals Healthy North Coast - care or health directive (NSW) (24) Pdf 10 section signing to say would rather be treated in hostel/nursing home than hospital Implies exact Review, sign date every 2-4 years scenario of level of functionin g will be acceptable to me /or the illness is reversible & I am likely to return to my mer self & health. Unaccepta ble outcomes 7

13 Adaptable to online hard copy Readability (US grade) Unfamiliar terms explained Transferable across care setting Instructions exact or Separates health care vs other space name, DOB signature date of review makes it easy to update refusal consent Allows separate direction different kinds of incapacity Enables recording of values life goals Hunter New Engl Local Health District Care Plan (NSW) (21) Pdf 18 item on preference place of care Implies item on preferred place of care Personal, religious/ spiritual, (un)accept able outcomes 4½ Medicare Local Central Coast NSW - Planning what I want Care Directive (NSW) (22) Pdf 12 Health states, treatments Workbook refers to different settings; an aged care version of will be made available shortly Consent refusal Rules out treatment refusal <7 days artificial feeding Philosophy of life, religion, values. Workbook encourage s exploratio n of what is important, what 4

14 Adaptable to online hard copy Readability (US grade) Unfamiliar terms explained Transferable across care setting Instructions exact or Separates health care vs other space name, DOB signature date of review makes it easy to update refusal consent Allows separate direction different kinds of incapacity Enables recording of values life goals makes days meaningful, worries. Uses acceptabili ty of current health status as starting point unaccepta ble outcomes NT Health Department Statement of Choices (NT) (23) MS Word 9 Treatments Most suited to acute healthcare setting Implies exact No General section, with reference to beliefs values in instruction s 5

15 Adaptable to online hard copy Readability (US grade) Unfamiliar terms explained Transferable across care setting Instructions exact or Separates health care vs other space name, DOB signature date of review makes it easy to update refusal consent Allows separate direction different kinds of incapacity Enables recording of values life goals RPC Statement of Choices (QLD) (26) Pdf 11 Examples given treatments No limits to transferability Implies Values, spiritual / cultural preference s, acceptable /unaccept able outcomes 5½ RPC Statement of Choices (VIC) (27) Pdf 10 Legal terms, given treatments No limits to transferability Implies Distinction between Medical, General Financial EPAs Values, uncceptabl e outcomes 5 RPC Statement of Choices (WA) (25) Pdf 12 Treatments No limits to transferability Implies Beliefs values as previously 4

16 Adaptable to online hard copy Readability (US grade) Unfamiliar terms explained Transferable across care setting Instructions exact or Separates health care vs other space name, DOB signature date of review makes it easy to update refusal consent Allows separate direction different kinds of incapacity Enables recording of values life goals discussed SA Health Anticipatory Direction (SA) (32) Writable pdf 7 Limited treatments; jargon avoided No limits to transferability. guidance on including registering on MedicAlert Implies exact just one free text space 'wishes' Just one free-text space 'wishes'; include religious beliefs 5½ Southern Cross University Queensl Government Health Care Directive (QLD, with derivative NSW) (28, 29) Writable pdf 11 Health states, treatments No limits to transferability; reference to nursing home Space to specify limits on attorney powers QLD ; NSW Attorney refers to personal/ health matters. advises a separate will be needed Gives space if temporaril y lose capacity, terminal, permanent coma, permanent vegetative state, unlikely to Religious beliefs any particular wishes about health care or special health matters QLD 9 NSW 9½

17 Adaptable to online hard copy Readability (US grade) Unfamiliar terms explained Transferable across care setting Instructions exact or Separates health care vs other space name, DOB signature date of review makes it easy to update refusal consent Allows separate direction different kinds of incapacity Enables recording of values life goals SDM relating to financial matters recover enough to live without lifesustaining measures Tasmanian Department of Health Care Directive Care at the End of Life (TAS) (30) Pdf 15; large print version availabl e Limited health states, treatments no relevant info Website info distinguishes healthcare from financial decisions Refusal Religious/ spiritual beliefs; unaccepta ble outcomes 4 WA Department of Health Health Directive (WA) (31) Writable pdf 12 Health conditions, treatments Refers to 'if in hospital' recommends storage options that will enable transfer, including electronic Implies exact Gives info about appointing Enduring Guardian vs Enduring Attorney to act on their behalf on financial Recomme nds considerin g what most fears in workbook but does 6½

18 Adaptable to online hard copy Readability (US grade) Unfamiliar terms explained Transferable across care setting Instructions exact or Separates health care vs other space name, DOB signature date of review makes it easy to update refusal consent Allows separate direction different kinds of incapacity Enables recording of values life goals health record service. matters not include on ACD = advance care directive; EPA = enduring power of attorney; HP = health professional; RPC = Respecting Patient Choices ; * overall s were derived by summation of s each criterion allocated as follows: criterion met 1, criterion partially met ½, criterion not met 0.

19 Supplementary Table 3. Contents from seven ACD s rated as biased or against medical treatment by two independent reviewers ACD Template Dying with Dignity Victoria Healthcare Directive (VIC) (20) Healthy North Coast - care or health directive (NSW) (24) NT Health Department Statement of Choices (NT) (23) RPC Statement of Content Where the stipulation/s apply, any Distressing Symptoms are to be maximally palliated by appropriate analgesic, sedative or other palliative treatment, even though that palliative treatment may also have the additional consequence of shortening my life. If it should be legal to do so at that time, I request that my death be hastened by a doctor providing or administering a fatal dose to allow me to die with dignity. The overwhelming majority of Australians believe in the right of the terminally ill to seek obtain medical assistance to end their life with dignity. You would probably only say NO to cardio-pulmonary resuscitation (CPR) if you had decided that life to be meaningful you need to have a certain level of function, or that you would be happy to die peacefully at this point in your life. If you said NO to artificial feeding, you would die within a short time, but this may be your intention as the chances of recovery are poor. Where you choose NO, you will be kept comtable & pain-free. If you are in a nursing home with severe dementia your physical mental condition will gradually deteriorate. After 1-3 years you would normally be dependent on 24 hour nursing care. At this stage you may be increasingly bedbound either through muscle weakness or through falls or fractured hips. Heart attacks strokes are common causes of death in the elderly. Tablets blood pressure, cholesterol blood thinning prevent these may make you live longer. If you have severe dementia you may not want to have these. However you may survive the heart attack or stroke then become more disabled. I do not want to be kept alive by extraordinary or overly burdensome measures that might be used to prolong my life (e.g. Cardio Pulmonary Resuscitation). Good Medical Practices - Circle appropriate option(s) e.g. major operation, intravenous fluids, blood transfusion, antibiotics, Treatment bias Pro Anti 19

20 Template Choices (QLD) (26) RPC Statement of Choices (VIC) (27) SA Health Anticipatory Direction (SA) (32) Southern Cross University Queensl Government Health Care Directive (QLD NSW) (28, 29) Content other: ( ) It has been explained to me by Dr that I would not benefit from attempted CPR I underst accept this OR ( ) I do NOT want CPR, even if the doctors think it could be beneficial. How would you feel about LST in the face of terminal illness? What is your bottom line? For example, under what circumstances would dying be preferable to sustaining life? Examples given in italics are of strong refusal. Record your wishes here. (For example, you may wish to write something similar to the following: I value life, but not under all conditions. I consider dignity quality of life to be more important than mere existence or I request that I be given sufficient medication to control my pain, even if this hastens my death.) Treatment bias Pro Anti CPR = cardio-pulmonary resuscitation; LST = life sustaining treatment 20