Advanced Care Planning: ‘a process, whereby a patient, in consultation with health care providers, family members and important others, makes decisions about his or her future health care, should he/she become incapable of participating in medical treatment decisions' (P Singer et al 1996).

Too often we fail to respect patient's wishes about their future medical treatment, simply because we haven't discussed it with them or, having done so, haven't written it down.

This can lead to patients:

• Receiving treatment that they would never have wanted but no one asked.
• Dying in the intensive care unit connected to life support machines that they never wanted to be connected to but no one asked while they were still able to respond
• Receiving overly burdensome treatments
• Not receiving treatment that they would have wanted if a doctor had spoken to them rather than just their family.
• Receiving unsuccessful CPR (cardiopulmonary resuscitation) that they said they didn't want but no one recorded their wish.

The common factors in all these scenarios are issues of not knowing or respecting choice, poor communication between health professionals and their patients or the patients' families and resulting distress to families.  

Respecting Patient Choices (RPC) is a program based on the key elements of:

• training doctors and non-medical staff, through on-line and face-to-face courses, to discuss and facilitate advance care planning.
• Implementing changes to health systems, particularly medical records, protocols and procedures to support advance care planning.
• Complementing existing legislation that supports advance care planning, such as the Medical Enduring Power of Attorney and Refusal of Treatment Certificate.
• Providing health professional education such as the GP education toolkit and the RACGP website.

Advanced Care Planning (ACP) was designed by RPC in line with the ethical principles of autonomy, informed consent, dignity, and the prevention of suffering. It is also based upon the importance of strengthening the patient's relationship with family and the patient's often stated desire to relieve the burden upon their family of having to make difficult medical treatment decisions when the patient can no longer communicate.

Advanced care planning is important to all of us, no matter what our age or state of health. Most of us will die following a chronic illness, not a sudden event, which means that we will have time to think about what we want near the end of our lives.

Up to half of us are not in a position to make our own decisions when we are near death.

There's a significant chance our next of kin will be asked to make decisions on our behalf, and if we haven't discussed our wishes ahead of time they will have no way of being sure what we would want.

A doctor who is uncertain about what to do, and who has to make a decision, will usually treat aggressively. As a consequence, many of us will be kept alive under circumstances that are not dignified, frequently suffering and in a way that we would not have wanted.

Having an advance care plan (ACP) in place is the best way to prevent this happening. 

The aims of health professionals, in conducting advance care planning, are to:

• Initiate conversations with adults regarding views about future medical care.
• Assist individuals with advance care planning.
• Make sure plans are clear.
• Ensure plans are available.
• Appropriately follow plans.

RPC has implemented advance care planning in many health services and aged care homes in Australia. In all these sites the program has succeeded in making more patients' wishes known and facilitating a process by which they were respected.  

We found that most people living in an RACF (residential aged care facility) who were approached about formulating an ACP did so, and subsequently as part of their ACP most of them:

• Appointed a Medical Enduring Power of Attorney.
• Requested no life prolonging procedures if non survival or a poor outcome was anticipated.
• Requested pain and symptom management.
• Requests to be care for at end of life at the facility
• Many other personal requests.

As well as being embraced by residents as a way to take back some control over their end of life, we've also been encouraged by the overwhelmingly positive feedback from families of patients who have died and from health professionals.

Feedback from the families of deceased patients included:

• "He had a very peaceful death, just as it should have been, & I would like to thank all staff for this".
• "Even though we already knew what he wanted it was great to be able to talk about it so openly"

Feedback from GPs included:

• "this program is long overdue".
• "of practical value...involves the RACF staff in discussion"
• "clarity of a resident's wishes made decision making with the family much easier"
• "avoids residents being sent to hospital for end of life (EOL) care"

If you are interested in advance care planning then have a look at our website www.respectingpatientchoices.org.au, download our literature and advance care planning forms and go to speak to your doctor about what you do and don't want in the future if you should be so sick that you are no longer able to make decisions or communicate them.

Associate Professor Bill Silvester did his medical and postgraduate specialist training in Perth before working and doing research overseas for 3 years. He has been an intensive care speclalist at the Austin Hospital in Melbourne since 1996 and is the Medical Director of LifeGift, the Organ Donation Service for Victoria and Tasmania. He is also the Director of the Respecting Patient Choices Program, an advance care planning program which commenced at Austin Hospital in 2002 and has expanded to many health services in Victoria and interstate.