Advance Care Planning relevance to the community Dying to talk symposium 30 th June 2015 Anne Meller Clinical Nurse Consultant in Advance Care Planning Prince of Wales Hospital, Randwick A/Prof Josephine Clayton Palliative Medicine Specialist, Greenwich & RNS Hospitals
What is Advance Care Planning? ACP is a process of reflection, discussion and communication that enables a person to plan for their future medical treatment and other care, for a time when they are not competent to make, or communicate, decisions for themselves. Royal Australasian College of General Practitioners Definition: http://www.racgp.org.au
What is an advance directive? Written advance care plan signed by a patient Contains instructions that consent to, or refuse, specified medical treatments in the future Becomes effective where the person is no longer able to make decisions Sometimes called a living will Using Advance Care Directives NSW Health 2004 National Framework for Advance Care Directives, Canberra 2011.
MY LIVING WILL... Last night, my friend and I were sitting in the living room and I said to her, 'I never want to live in a vegetative state, dependent on some machine & fluids from a bottle. If that ever happens, just pull the plug. She got up, unplugged the Computer, and threw out my wine..
Why is Advance Care Planning important?
Connie s story
What is the evidence base for ACP? Studies of patient/caregiver s views: Enhance open discussion of dying between patients/families Help patients clarify what gives them meaning, their important goals & priorities Reduce decision-making burden on families Luckett et al. AJKD 2014
What is the evidence base for ACP? Observational studies and RCTs: Reduced burdensome medical care near death Increased likelihood of a person being cared for at EOL according to their wishes* Improved patient/family satisfaction with care* Better quality of dying and satisfaction with EOL care* Reduced stress, anxiety and depression in surviving relatives* *Detering K et al. BMJ 2010
Who may benefit from ACP? Any adult may choose to start ACP when healthy before an unexpected health crisis ACP may be especially relevant for: People diagnosed with a life limiting or chronic illness A person whose doctor would not be surprised if they were to die within 12 months Any person admitted to a RACF People > 75 years Any person requesting to discuss ACP
How do we start Advance Care Planning? Begin with the end in mind.
What if I don t plan ahead? Who will make decisions about my treatment? Guardianship Act (NSW1987) outlines who can give substitute consent for non- urgent treatment: Who is the first person treating doctors would look to, to provide substitute consent? There is a hierarchy..
NSW An appointed guardian (including enduring), if none then A spouse, if none then Carer, if none then An other relative or friend with a close and continuing relationship with the person
Advance Care Planning 2 avenues: Appoint someone to make decisions about your health and lifestyle according to your states legislative provisions Complete an Advance Care Directive (ACD) - common law.
Appointment of person to make health and lifestyle decisions Power of Attorney (in NSW) = $ only Enduring Guardians can make decisions (functions) Jointly and severally Add directions/ instructions. Witnessing requirements
Guardianship Functions Enduring and appointed guardians can make decisions (called functions) accommodation Personal services Lifestyle Treatment decisions - to give or withhold consent to medical treatment on your behalf
Guardians Can t make decisions that are contrary to the law make a will or alter one on your behalf vote or consent to marriage on your behalf Give consent for special treatment on your behalf (Sterilisation, ethical concerns) Override your objections to the treatment
An advance care directive may be valid at common law if all of the following conditions are satisfied: Specificity Capacity Voluntariness Currency
What is legal capacity? Capacity is someone s mental ability to understand & make decisions Essentially, capacity refers to someone s ability to: understand the facts involved in the decision-making and the main choices; weigh up the consequences of those choices and understand how the consequences affect them; and communicate their decision.
How can we get started to have this courageous conversation?
How to open the conversation? Look for cues in everyday life Or Have you ever thought about your wishes for care in case you became suddenly unwell or were injured? Is this something that we could talk about?
How to have an ACP discussion Get permission don t force the topic Series of open questions, to help person reflect: how they would want decisions to be made who they d want to speak on their behalf most important priorities/concerns if became very ill what information they need to help them prepare Active listening: reflect back to make sure you understand the person s wishes/concerns Acknowledge and respond to emotions
Some questions to consider when discussing ACP Who would you like to be consulted about your medical care if you could not make decisions for yourself due to illness or injury? If you got sick how much information would you want to know about your illness and what to expect in the future? How much would you want to be involved in decisions about your heath care? Or would you prefer your doctor or family to make decisions?
What level of function or quality of life would be acceptable to you to live with, if full recovery after an illness/injury was not possible? What are the most important things that you want your friends, family and/or doctors to know about how you would like to be cared for if you were dying?
Resources for ACP The conversation Project: http://theconversationproject.org NSW Planning Ahead Tools: http://www.planningaheadtools.com.au Advance Care Planning Australia: http://advancecareplanning.org.au