Advance Care Planning

Introduction

 

This health literacy module educates you on the benefits of having an Advance Care Plan in place to ensure that your health care preferences are considered when you may no longer be in a position to make those decisions.  This module will outline the different types of Advance Care Planning you can make and what implications it can have on your friends and family.

Please be aware that the material in this module is general information only and is not medical advice. If you ask for medical advice, your workshop facilitator will ask you to consult your pharmacist, doctor, nurse or other qualified health care provider.

 

What is Advance Care Planning?

 

Advance care planning is designed to record what you want done or not done when you can no longer speak for yourself in regards to your health. You must therefore make these decisions while you still can. It is also important that you appoint someone you trust to act as your Enduring Power of Attorney. By completing these documents, it will make it much easier for your family and health carers to respect your wishes.      

 

Advance Care Planning in the ACT

 

Who would you like to make medical decisions for you if there came a time when you could no longer speak for yourself?

The Respecting Patient Choices® (RPC) Program is an advance care planning program that commenced at the Canberra Hospital in 2006.The primary objective of the Program is to provide a quality assured system of discussing, recording, and documenting a person's health care wishes.

 

Effective planning is the best way to ensure that family and health professionals respect a person’s wishes. In an emergency situation, it provides hospitals' treating teams with the necessary information to make decisions in the patient’s best interest in consultation with their chosen attorney/s [1]

 

There are three ways your choices can be conveyed to health professionals through Advance Care Planning:

  1. Complete an Enduring Power of Attorney (EPA).

  2. Complete a Statement of Choices.

  3. Complete a Health Direction under the Medical Treatment (Health Directions) Act 2006.

The objectives of appointing an Attorney/s, completing a Statement of Choices and/or a Health Directive are:

 

  • To make your wishes known about the type of treatment you would prefer if you are unable to participate effectively in decisions about your medical care. The types of treatment available can range from a variety of types of care including ‘intensive care’ and ‘palliative care’ depending on your medical circumstances.
  • To protect your right to refuse unwanted medical treatment and to ensure your right to receive relief from pain and suffering to the maximum extent that is reasonable in the circumstances.

Types of Advance Care Planning

 

Enduring Power of Attorney (EPA)

 

An Enduring Power of Attorney gives you the power to choose a relative or friend to manage your health care, personal care and financial affairs should you become incapacitated or if you develop a decision making disability.  You can appoint more than one attorney if you wish. In the ACT your spouse or your next of kin have no legal entitlement to make formal substitute decisions on your behalf unless there is an Enduring Power of Attorney in place.

 

You can chose the decision-making areas you give to your enduring attorney/s which can include any or all of the following areas or functions:

  • Financial and Property

  • Personal Care

  • Health Care

 

Statement of Choices

 

The Statement of Choices is a document used to guide future medical decisions ONLY when you lose the ability to make or communicate your medical treatment decisions yourself. The law requires that this statement of your wishes must be taken into account when determining your treatment.[3]

 

 

The types of treatment available can range from a variety of types of care depending on your medical circumstances, and can include options for:

  • CPR (Cardio Pulmonary Resuscitation)

  • Breathing machines (ventilator)

  • Kidney machine (dialysis)

  • Artificial feeding (intravenous, nasal or PEG tube)

  • Antibiotics

  • Blood transfusion  

You need to consider and record what an acceptable level of functioning or reasonable outcome that you would be prepared to live with is.  In what circumstances would you not want life prolonging treatments such as any of the above?

For example, you may say in your Statement of Choices that if you are unable to communicate with or recognise your family, and there is no possibility that you will ever recover or improve, that you do not want CPR if your heart stops, but only want to be kept comfortable and free from pain.

   

In the ACT, you can get assistance with your Advance Care Planning and documentation by contacting the Respecting Patient Choices® staff on 6244 3344.  They can also register your Advance Care Planning documentation and arrange for it to be scanned on to your ACT Health medical record.

 

Calvary Health Care also has an advance care planning system and set of documentation developed by their national organisation, the Little Company of Mary Health Care.

 

Health Directions

 

In the ACT, under the Medical Treatment (Health Directions) Act 2006, you can sign a witnessed legal document that gives competent adults the legal right to refuse or withhold medical treatment.

In summary, the Enduring Power of Attorney and Health Direction are legal documents that comply with the Medical Treatment (Health Directions) Act 2006. The Statement of Choices provides specific information relating to a person's wishes and values.

 

Involving Others in Advance Care Planning

 

As well as your chosen attorney/s, you need to discuss your wishes with your family, significant others and your doctors, especially your general practitioner.

 

Spouse, Family and Friends

 

You need to discuss your end of life wishes for medical care with your family and other significant people in your life.  It is wise to ensure that these people clearly understand your wishes and any instructions that you want to give.

 

 

The stories of Margaret and David illustrate the value of talking to some of the significant people in your life.David was in his early eighties, and lived in his own home.  He had two daughters.  Jean lived in the next suburb and Clare lived interstate. David did not need any help but noticed he was becoming more forgetful. He discussed this with his doctor who did some tests and confirmed that his memory was getting worse. Although he wanted to stay home as long as possible, David realised that he might have to move to some type of supported accommodation and that his house might need to be sold. David wanted to ensure that if he ever became incapable of making his own decisions, they would be in the hands of someone he trusted and who was able to support him.  He told both of his daughters of his intention to appoint Jean as his enduring power of attorney. Clare was upset, fearing that this represented some favouritism or that she might inherit less as a result.  David was able to assure Clare that it was practical to appoint Jean, and Jean assured Clare that she would not seek to disadvantage Clare in any way.

 

Margaret was in her seventies, had never married and lived in Canberra.  She got on well with her next door neighbours, Fred and Jean, whom she had known for many years.  Margaret's only relative was her older brother, Max, who lived in Brisbane.   When Margaret had a heart attack, Max rang her doctor daily and often said it was time Margaret went to a nursing home. Fortunately, Margaret made a satisfactory recovery and was able to go home.  She talked to her doctor, to Fred and Jean, to a solicitor and to a Respecting Patient Choices consultant and decided to appoint Fred and Jean as her enduring power of attorney in a number of areas.  She gave them the functions of deciding what health care and other personal services she would receive and the power to decide on appropriate medical treatment. After talking to the Public Trustee[4], she also gave the Public Trustee the power to manage her financial affairs, including deciding where she would live, in consultation with Fred and Jean.  She gave them directions that she wanted to stay at home as long as possible. However, if the time came when she was no longer able to make her own decisions, she would agree to going to a nursing home if her doctor and Fred and Jean thought it was necessary. She also directed that they should talk to Max before making decisions.  When she told Max, he was not happy, but agreed to cooperate with Fred and Jean to make sure that Margaret's wishes would be respected. 

 

 

If you do not discuss your end of life wishes with those important people in your life, they could well ask for care and treatment to be done without understanding the implications and that treatment may be against your wishes.

 

Medical Practitioners

 

Family doctors such as your general practitioner can play a very helpful role in assisting with decisions about your end of life medical care.  In the ACT, there is a useful and easy to use website called BeMyVoice that was developed with the assistance of general practitioners in the ACT and the Respecting Patient Choices® Program.[5]

The BeMyVoice website provides advice through consumer stories such as the section on "Tell me more" and provides links to the documentation and forms needed such as:

  • Enduring Power of Attorney (EPA).

  • Statement of Choices.

  • Health Direction form used under the Medical Treatment (Health Directions) Act 2006.

 

As well, there is a section on frequently asked questions.

 

Conclusion

 

There are a range of services available in the ACT to assist with Advance Care Planning.

 

There are trained facilitators and consultants available through the Respecting Choices® Program to talk to groups and individuals to explain and facilitate discussion around the importance of advance care planning for anyone over the age of 18 years. Facilitators are also able to make individual appointments to guide people through the process of completing your own Advance Care Plan and Enduring Power of Attorney.

 

The offices of the Public Advocate  and the Public Trustee both provide information and assistance with Enduring Power of Attorney, as well as your own solicitor.

 

General practitioners can assist with decisions about your end of life medical care.  Plus the BeMyVoice website provides lots of information and support on the steps of creating your own advance care plan. 

 

As the BeMyVoice website suggests: Have the conversation today and start doing your advance care plan.

 



[1]ACT Health, “Respecting Patient Choices”, Accessed 12 March 2014, http://www.health.act.gov.au/consumer-information/respecting-patient-choices

[2] Public Advocate of the ACT “The Power to Choose: your guide to completing an Enduring Power of Attorney”, Australian Capital Territory 2012, Accessed 12 March 2014, http://cdn.justice.act.gov.au/resources/uploads/PAACT/forms/2012_Power_To_Choose_web.pdf

[3] ACT Health, “Respecting Patient Choices” 

[4] Public Trustee for the ACT (PTACT), “Welcome to the Pulbic Trustee for the ACT (PTACT)”, Accessed 12 March 2014, http://www.publictrustee.act.gov.au/

[5]  ACT Medicare Local, “BeMyVoice.com.au”, Accessed 12 March 2014, http://www.bemyvoice.com.au/Home.aspx