The legal underpinnings of Advanced Care Planning

1. The legal underpinnings of Advanced Care Planning

2. Consider the following? You’ve retired, and you no longer have capacity to make decisions- all of your financial, property, health and lifestyle decisions will now be made by your grown children Would you have liked the option of: • Talking to them in advance about your health, wealth and lifestyle preferences? • Writing something down for them, that can be respected whilst you are alive? • Not worrying about it- they know what you want?

3. The Future for Australia The future reality for a lot of Australians, is that eventually someone else willbe speaking and making decisions on their behalf.

4. For the Individual • Mrs Ellen Michaels 80 years was admitted to a NH facility in the year 2000 for increasing physical frailty • Upon admission, she agreed to resuscitation in the event of a respiratory or cardiac arrest-this being well documented in her notes • Ellen, is very happy and settled in the facility • Over the course of 6 years, Ellen has lost capacity tomake decisions for herself

5. For the Individual Last week, Ellen developed symptoms indicating a respiratory infection: • Intermittent temps • SOB • Productive cough • Increased lethargy You believe she may have a chest infection or perhaps pneumonia. You need a definitive diagnosis. • You instruct the facility to contact the family to notify them of a transfer to acute care-the family arrives and tells you that they do not wish to have Ellen resuscitated or transferred to the hospital • What will happen? Why? • What would have been useful?

6. How could advance care planning have helped? “Advance Care Planning is a process of ongoing communication that enables individual’s to maintain a sense of control over their future, even if faced with the prospect of a loss of capacity” Singer, Robertson, Roy: 1996: “Bioethics for Clinicians” CMAJ, 1996:15 (12) 1689-1692)

7. A discussion to plan in advance • Enables discussion of the individuals goals, needs and values in a non-crisis situation. It enables people to have time to think about-what is an unacceptable way to live their life given the possibilities of family history, current health or recent episodes • Enables the inclusion of others (who are willing to be involved in the persons care) to understand the patients wishes as well as the proposals made by the treating team • It may minimise family conflict if a consistent family representative has been actively involved with the health planning process • It may lead to a written advance directive

8. Planning may produce a directive An Advance Directive: • Is a document written by competent adult • It may include their statements of values, goals and preferences • It is applicable only when the person is considered incompetent • It provides instruction to the family and the treating team • Is considered legally persuasive

9. What is the ethical and legal position of Advance Care Planning?

10. The Legal Position Common Law Protects a person’s rights to: • Self-determination • Autonomy • Accept care or treatment (consent) • Refuse care or treatment Thus all persons have the legal right to ‘plan ahead’ and appoint a substitute decision-maker for the event of future incapacity.

11. Common ways to plan in advance Many people plan chose to plan in advance via: • Appointing a Power of Attorney • Appointing an Enduring Power of Attorney • A will Does a Power of Attorney or Enduring Power of Attorney encompass medical or treatment decision-making?

12. Note Substitute decision-making only comes into effect when the individual loses capacity or is mentally or developmentally delayed, whereby unable to understand the nature and effects of any proposed treatment

13. Does the person have to pass any ‘tests’ to have an advance care plan?

14. The need for decisional capacity • The ability to plan ‘ahead’ and legally appoint a spokesperson requires that the individual is decisionally capable to do so • At Common Law, everyone is deemed to have capacity unless it is rebutted at law • At Common Law a competent patient has the right to refuse any treatment even if it may be life-saving

15. Legal conditions The following conditions must be satisfied for an advance directive to be valid: • The person making the directive was competent at the time it was made • The directive was made voluntarily without inducement or compulsion • The directive was based on appropriate information of the choices and the consequences • The directive was intended to apply to the circumstances that have arisen • There have been no changes in the wishes expressed and the directive has not been revoked • Whether the person was permanently or temporarily incapacitated? • Are there are reasonable grounds for believing that new circumstances exist which did not exist at the time the person made the directive?

16. Decisional capacity • What tools, processes or methods do you currently use to determine a person in your care’s capacity? • If you are concerned about a person’s decisional capacity- how would you plan for an advance care plan discussion?

17. Commonly used Tools • Comprehensive history • Statements or inputs from family members close to the person • Mini Mental State Exam • Clock Face Drawing • Cognitive History- IQ Code • Depression Scales • Blood Tests • Imaging • Specialist Referral

18. Planning ahead involves appointing a ‘guardian’

19. Definitions of substitute decision makers • The term ‘Next-of-Kin’ is not ‘technically recognized by law • Guardian (all states) a person appointed by a court or guardianship authority to make decisions on behalf of an incompetent adult • Person Responsible: (NSW, QLD, SA, Tas, Vic, WA)-is a relative or close friend recognised to have the right to consent to treatment on behalf of an incompetent person. The selection of a person responsible follows a priority system (guardianship hierarchy)

20. Person Responsible Hierarchy in NSW • A legally appointed guardian or enduring guardian • A spouse or de facto spouse (includes same gender relationships) • An unpaid carer (neighbour or friend who provides support) • A friend or relative who can demonstrate a close and continuing relationship

21. Definitions of substitute decision makers • Enduring Power of Attorney (ACT, NSW, QLD,SA, TAS, VIC) Enduring power of Attorney over health matters = Enduring Guardianship or medical agency allows a person to appoint a substitute decision-maker with the power to make medical decisions in situations where the person has become incompetent.

22. The process: • The process is similar to the appointment of a Power of Attorney • Enduring guardianship may be completed with a solicitor ($); or • A form of appointment (can be obtained from the Office of the Public Guardian or Guardianship Tribunal) and verified by a Clerk of the Local Court ($0)

23. Information available for planning ahead • The Benevolent Society • Alzheimer's Australia • Different States Department of Health • Office of the Public Trustee • The Office of the Public Guardian • Referral to a solicitor • The Guardianship Tribunal

24. What about those who have already lost capacity?

25. Can people who have already lost capacity plan in advance? NO -Treatment decisions and consent now have to be obtained from the patients ‘Person Responsible’ or ‘Enduring Guardian’. However in the Guidelines for Palliative Approach in Aged Care, a collaborative decision making strategy is recommended Decisions made must be in the patients best interests and what is known about what they would have wanted – the person responsible, other family, carers, RN’s, the GP and other health professionals can all be involved in this approach.

26. Advance planning with a substitute decision-maker Discussion around the ‘level’ of care appropriate for the person-what would they have wanted? • Palliative • Limited • Active • Intensive The need for transfer • Acute conditions (fractures) • Episodes related to underlying disease (COPD-acute respiratory infections, dyspnoea, heart failure) • Comprehensive evaluation for symptoms unrelated to underlying condition Resuscitation • For CPR – cardio pulmonary resuscitation • DNR or NFR – Do Not Resuscitate / Not for

27. The Molloy Model Palliative: aim to keep patient free from pain and discomfort. Any treatment or investigation only for this purpose Limited: palliation + antibiotics and investigations. May include treatment in hospital, but not elective surgery unless needed for comfort Active/surgical: limited + operative treatment. Breathing machines (ventilators ) used only for surgery or recovery from surgery Intensive: everything possible will be done to maintain life. If necessary - ICU, transplants, dialysis and ventilator support

28. Introducing Advance Care Planning in practice

29. Advance Care Planning in practice • Diagnosis of a life limiting illness • Recent hospitalisation or admission to an aged care facility • 75 years health assessment at local GP • Family history of progressive illness (i.e. dementia) •  Physical frailty, reduced capacity for daily living tasks • Person or family awareness of disease progression • A written statement or directive by a person is available

30. What to document? • The persons capacity –at this date (may need to have a doctor assess this) • Do they have a preferred spokesperson or a legal guardian? • Are they easily contactable & willing to make / recommend decisions on behalf of the person if the person loses capacity or the ability to communicate their wishes? • Does the person have a directive already? • Are its inclusions in the persons best interests and necessary to save life, prevent injury or damage to the persons health? • Would they like to talk to someone about quality of life decisions?

31. Where to document? • GP Health Management plan (chronic conditions) • Care Plan in relevant sections or a separate plan • Routine history notes- ‘flag’ the folder/ pages • Electronic record (your preferred software) • Advance Care Plan discussion record templates

32. When to check? • 3 monthly review of care plan / Case Conference • When a change occurs in the persons health condition • At the persons request (or their family/person responsible where person does not have capacity) • If they change their mind or wish to revoke a directive

33. In closing Evidence based research supports that Advance Care Planning is a useful process because: • Many people actually want to discuss end-of-life issues especially if they have a life limiting illness • It provides a process for respecting a person’s autonomy throughout the lifespan • It facilitates dialogue between the individual, the family, the ‘person responsible’ and health professionals