Emma Awizen Respecting Patient Choices Coordinator Right Care, Right Time Emma Awizen Respecting Patient Choices Coordinator

‘Three in 10 Australians who suffer a chronic condition complain of poor coordination of their care, conflicting advice and duplication of tests’ National Health and Hospital Reform Commission 2009 It is important that people are able to communicate their wishes while they are still competent to do so

How do we help address this? We recommend that all aged care providers (community and residential) should be required to have staff trained in supporting care recipients to complete advance care plans for those who wish to do so. National Health and Hospital Reform Commission 2009 . The Respecting Patient Choices Program provides patients with the opportunity to discuss their choices with family/important others and health providers, and document these choices

What is Advance Care Planning? A way of planning for future medical care A way of ensuring that care received matches the patient’s values and wishes A process allowing the patient to make decisions and nominate a person to act on their behalf, should he/she become incapable

Mission respect a person’s right to autonomy, dignity and fully informed consent assist individuals to reflect upon, choose and communicate their wishes regarding their current and future health care educate and support health professionals to facilitate this.

Why advance care planning is important? Most people (approximately 85%) will die after chronic illness, not a sudden event 80% of deaths occur under the care of healthcare professionals Up to half of us cannot make our own decisions when we are near death Austin Hospital Respecting Patient Choices Program 2006 Some interesting information in regard patients and illness 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 Many of us value our dignity and want our wishes to be respected through the dying process

The Challenge Advances in medical technology have created their own dilemmas Doctors and family can find themselves having to make decisions when the patient can no longer communicate their wishes Advances in medical technology have given medicine the ability to prolong life through artificial or mechanical means. These advances have created their own dilemmas, especially when the treatments may be limited or no benefit to the patient. Doctors and family can find themselves having to decide for the patient when to withhold or withdraw life-sustaining treatments when the patient can no longer communicate their own decision. Advance care planning enables patient’s wishes and views to influence this discussion and decision.

Familiar scenarios 76 yo father with advanced cancer in intensive care on a ventilator with progressive pneumonia 84 yo mother, in nursing home - bed bound, can’t speak following stroke, requires feeding tube 48 yo father with a terminal condition, has requested not to be resuscitated, is resuscitated because there is no NFR form These are all familiar cases that have been seen in at the Canberra Hospital over the last 6 months and scenarios that I am sure you have also seen. Let's go through them… Note that they are not males or females but family members – like our family members. What are the common factors to each? 1. Their choices regarding End of Life care were either not known or not respected 2. There was a failure of communication with pt or family 3. The families were upset about the outcomes

Ethics of advance care planning Autonomy People should be able to make their own decisions regarding end of life. Informed Consent A person’s consent must be genuinely voluntary Dignity defines the quality of being worthy or honourable Autonomy States that people should be allowed to make their own decisions regarding their lives. Informed consent For consent to be ethically and legally valid it is important for the following four elements The person giving consent must be competent to make the decision. Consent must be genuinely voluntary; it needs to be free from manipulation or undue influence There must be adequate accurate information provided on the possible options and consequences of any decisions that might be made ie People have a right to be given all available and relevant information The person needs to be able to comprehend the information provided

The three ways choices can be recorded in an advance care plan Appoint an Enduring Power of Attorney (EPA) Document your wishes in the Statement of Choices Complete a Health Directive under the Medical Treatment (Health Directions) Act 2006 The Advance care plan includes three ways to record choices. These include: EPA is a legal document that enables you to appoint another person/s to make medical treatment decisions on your behalf, including consenting to treatment or consenting to withholding treatment. This person/s, referred to as your attorney can make health decisions on your behalf only if you are not able to make or communicate decisions. When selecting someone it is important to consider: Do you trust them and do they know you well Are they willing to respect your views and values Are they able to make decisions under circumstances that may be difficult of stressful. 2. The Statement of Choices Allows you to record your wishes regarding future medical treatments. It is still important to discuss your wishes with your attorney, family and doctor. It is used to inform your attorney and treating team of your wishes. It is not legally binding. If you become unable to make decisions this information will assist your attorney and doctors in making decisions that are in accord with your expressed views and best interests. 3. Health directions also give legally binding directions about medical treatment that you do not want now, and for the future. This document is valid even if in the future you cannot make decisions yourself. If you want to refuse certain medical treatment for your current illness and you want that refusal to be binding you should complete a health direction under the medical treatment act 2006. This allows you to refuse current and future treatment, except palliative care.

Legal principles Medical Treatment (Health Directions) Act 2006 The objectives are: to protect patients’ right to refuse unwanted medical treatment, Ensure patients’ right to receive relief from pain and suffering to the maximum extent that is reasonable in the circumstances. This is one of the tools that is used in the Respecting Patient Choices Program Ask the Audience if they have heard of the Medical Treatment Act. The Medical Treatment (Health Directions) Bill 2006 (the Bill) amends the Medical Treatment Act 1994 in view of the Powers of Attorney Bill 2006. The objectives are: to protect patients’ right to refuse unwanted medical treatment, Ensure patients’ right to receive relief from pain and suffering to the maximum extent that is reasonable in the circumstances. Interstate sites need to replace this slide with relevant state legislation

Reasons for success Is patient-centred Patients and their families communicate their wishes about future health care Ensures plans are readily available It focuses on ‘living well’ and the person’s goals and values - not death and resuscitation

Advance care plan process Documentation completed Sent to RPC Coordinator Canberra Hospital Documentation entered on system by medical records, including system ALERT Advance care plan returned to the owner to keep in a safe place When completing the advance care plan remember the following: ACP can reduce family burden Family members may not be the best nominated person or attorney Focus on what kind of care is desired rather than what should be withdrawn ACP remain the property of the patient!

Important lessons so far….. ‘patient preferences matter’ Advance care planning challenges current culture in health care Discussion should focus on the patient’s values, beliefs and goals and “living well” Involvement of all family members is important The message needs to be clear ACP challenges current culture in health care. We need to aim for a culture where “patient preferences matter” ACP takes time to ‘catch on’ and be normalised as a non-threatening process. The message needs to be clear: having this discussion does not mean you are dying. Withholding life-sustaining treatment does not mean you will be ‘abandoned.’ Community promotion of advance care planning will be the key to having ACP forms completed at a time when decisions can be carefully considered and discussed

draft National Framework for Advance Care Directives Dr Anne Leditschke represented the ACT as a member of the Working Group Document download available at hwlebsworth.com.au/acdframework Deadline for submissions is 11 October 2010

Contact details Respecting Patient Choices respectingpatientchoices.org.au/ Emma Awizen Respecting Patient Choices Coordinator Emma.Awizen@act.gov.au 6244 3344