Steve Flecknoe-Brown: Leaving instructions

WE all have a right to die; it is a biological imperative. A “good death” is also what most of us want and would wish for ourselves, our loved ones and patients.

Many people believe that dramatic steps, such as euthanasia, are the only choice they have for a good death. But that need not be the case.

One of the most powerful tools for this purpose, available to all citizens of a free state, is the advance directive, called a “living will” in the US. This is a legal instruction made by a competent person that clearly outlines what may or may not be done in the event that the person issuing that instruction is suddenly unable to speak for himself or herself.

Anyone who knowingly defies a properly made advance directive can be charged with common law assault in all Australian jurisdictions.

The key elements of an advance directive are:

• It must be legally enforceable

• It must be explicit

• It must be able to be understood at first reading by a person under immense pressure.

It doesn’t take a lawyer to write a legally enforceable document. In fact, lawyers often have trouble with the third requirement — instant readability.

To have an advance directive that is legally enforceable it must be an original document, signed and dated by the patient and witnessed by somebody truly independent. Photocopies are not enforceable, so it is best to create three originals — one for the patient’s records, one for a trusted friend or family member, and one for the GP or local hospital records.

The witness should not be a direct relative, who may stand to gain from the person’s estate. Similarly, it should not be a health professional, who may be forced to act on the instructions.

The document could be worded to take effect immediately or it could allow a period for the family and medical team to explore options, after which, if the person has not recovered, everything should be withdrawn. It could allow life support to be continued to allow organ donation.

The actions that the person forbids, either immediately or after the stated period, should be spelt out explicitly, such as:

• Artificial restoration of circulation using cardiopulmonary resuscitation

• Artificial ventilation of lungs using a tube down the airway

• Artificial feeding using a tube inserted into the stomach

• Artificial fluid replacement using intravenous devices

• Intravenous antibiotics

• Other extraordinary medications aimed at prolonging life.

The person issuing the directive may wish to allow some of these measures (eg, intravenous fluids), in which case the document should not mention them.

And, finally, we must remember that the first person on the scene is usually a close friend or relative and the second a health professional. For both, the document should be able to be understood instantly.

When it comes to patient safety, we know that even a highly trained professional cannot be expected to read and understand complex language in policy and procedure documents when under immense pressure.

The US Army issues all its procedure manuals with a readability score equivalent to 6th grade or less for the same reason. Use simple words in short sentences.

The person making the advance directive should be advised to have a card in their purse or wallet drawing attention to the existence and location of the advance directive — it’s no use if it isn’t found.

I have an advance directive. My octogenarian mum refuses to put her wishes in writing. Perhaps she’s a bit superstitious.

When I discussed my advance directive with my sons they said, “Sure, Dad, but we really don’t want to talk about it now”.

My advance directive uses language such as “loved ones” and “such dreadful circumstances”. I think this emotive language strengthens the authority of the document.

After all, it is my last gift to my family, taking away any doubt and absolving them from any guilt they may experience if the document didn’t exist.

Dr Steve Flecknoe-Brown is a haematologist and chair of the NSW Health Pathology Board.

Click here — Advance directive — for an advance directive example provided by Dr Flecknoe-Brown.

Posted 2 April 2013