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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for the family and medical team to explore options, after which, if the person has not recovered, everything should be withdrawn.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
I am shocked that one of the above calls for advanced care directives to be compulsory. The fact is that an ACD only works one way – you cannot make an advanced care directive indicating that you want treatment – only that you don’t want treatment. ACDs were created to ensure personal autonomy for those that did not want treatment at a certain stage in their life, but making advanced care directives compulsory and discriminating against those who don’t want a so called “good death” (code for palliative morphine) is in effect creating a “duty to die” for the aged and infirm.
Thank you for posting this. I agree with being able to make my wishes known prior to people thinking I am not in the right state of mind to make those wishes. I also agree that legislation needs to make a law that upholds those wishes. I heard that members of the family are able to contest a will, even though a parent explicitly knew what they wanted to do. Why should the law be able to override a document legally made whilst the person is in charge of all their faculties. It doesn’t make sense to me.
Perhaps we need to see detailed advance care directives be compulsory for entry into a Nursing Home. These need to go far beyond “no CPR”, as Dr Flecknoe-Brown suggests and, in my view, should include “do not call an ambulance” and “do not send me to hospital.” This, of course, goes hand-in-hand with the need for willingness, expertise and appropriate medication to handle “a good death” in the Nursing Home. I frequently encounter family members who know (in a vague sense) that their very old relative will die soon, but have never thought through the actual process. I believe in encouraging families to confront the reality in detail before it occurs.
It is so true that an Advance Care Directive (ACD), or even simply having the conversations inherent in advance care planning, are a gift to your loved ones – relieving some of the burden of decision making at a time that can be highly stressful.
However, common law recognition of ACDs is not sufficient for health professionals, patients and their loved ones to feel fully protected and supported.
We need nationally consistent legislation around ACDs instead of the confusing array of laws that exist (or don’t) currently in each state and territory.
Let’s use models such as that to adopt the National Registration and Accreditation Scheme and create a legislative environment that truly supports and protects.