What is an advance directive?

Talking about death with those close to us is not about being ghoulish or giving up on life. But, a way to ensure greater quality of life. Lee Last explains what an advance directive is and why it is essential.

Two classes of advance directives (AD)

A living will is a document that enables a patient to refuse unwanted life-sustaining treatment (by withholding or withdrawing it) when they are no longer able to do so, due to irreversible decision-making incompetence.

A durable power of attorney for healthcare is a document that enables a patient to transfer their healthcare (including medical) decision-making to another person (a proxy or substitute) when they are no longer competent to do so, including decision-making about continued life. Thus, withholding and withdrawal of life-sustaining treatment.

How does it work?

Simply put, in a medical emergency, or any other circumstance which leaves you unable to communicate, your advance directive will help those responsible for your care to decide on your treatment. 

It will help your loved ones to make the right decisions on your behalf during an already difficult time.

Without an AD, you may be subjected to aggressive medical intervention, which you may not want. Or you may have a specific medical condition for which you want all available treatment.

Planning with an AD can give your caregiver, family members and other loved one’s peace of mind when it comes to making decisions about your future healthcare. It lets everyone, including your medical practitioner, know what is important to you at end-of-life. 

Talking about death with those close to us is not about being ghoulish or giving up on life. But, a way to ensure greater quality of life, even when faced with a life-limiting illness or tragic accident. 

When your loved ones are clear about your preferences for treatment, they are free to devote their energy to care and compassion.

Act of love

Having an advance directive is an act of love. Your death is not just about you. 

Imagine, for a moment, that you are facing a potentially life-ending medical event, unable to communicate. Your family are huddled around your bed, anguishing, even arguing, about what treatment you would want or, perhaps more importantly, would not want. 

They are likely already traumatised at the thought of losing you. This trauma could be exacerbated by family members disagreeing about the way forward. 

Imagine too, the uncertainty and guilt that your loved ones will potentially have to deal with for the rest of their lives, if they are forced to decide on your behalf, not knowing what your wishes would have been.

By preparing for your death, you give those who love you a map to go by.

Consider this: We are the only species who can contemplate our own death. Yet, we keep it locked in our own minds. Instead of sharing it with those we love, bringing peace of mind and compassion. It starts with one conversation.

Why have an advance directive?

• In a medical emergency, your AD will help those responsible for your care to decide on your treatment.
• It will help loved ones to make the right decisions on your behalf.
• Without an AD, you may be subjected to aggressive medical interventions, which you may not want.
• Your medical proxy will be able to liaise with your doctor.

Why name a substitute healthcare decision-maker (medical proxy)?

• A situation may arise where your medical condition at the time is not one that is addressed in your directive. 
• Medical practitioners will consult with your medical proxy.
• Your medical proxy would then be able to decide on your behalf, based on his/her understanding of what you would decide for yourself, if you were able to do so. 
• Gives you another layer of protection in ensuring your wishes are respected.

Section 7 of the National Health Act 2003

According to Section 7 of the National Health Act 2003:

If there is no advance directive, or an advance directive is not relevant to the current clinical situation, one of the following surrogates may make decisions on the patient’s behalf in the order of precedence listed below:

• A proxy mandated in writing by the patient to make decisions on his or her behalf.
• A person authorised by law or a court order.
• The patient’s spouse or partner
• Parent
• Grandparent
• Adult child
• Brother or sister

Are advance directives legal?

Although ethically acceptable and despite South African Medical Association (SAMA) and Health Professions Council of South Africa (HPCSA) encouraging medical professionals to honour their patients’ ADs, medical professionals are not obligated by law to do so.

Also, the appointing of a medical proxy is currently unenforceable by law (because SA common law determines that a power of attorney terminates once the principal becomes mentally incapacitated).

To address this breach in our right to autonomy, DignitySA assisted Deidre Carter, then Chief Whip of Congress of the People (COPE) with the formulation of a Draft Bill, the purpose of which is to: provide for legal recognition, legal certainty, and legal enforceability regarding advance directives (such as the living will and durable power of attorney for healthcare).

Ms Carter’s Private Member’s Bill, the National Health Amendment Bill, was introduced to Parliament on 27 February 2019 and was dedicated to me, Lee Last, the author of this article. DignitySA considers it to be an absolute honour to have contributed towards this ground-breaking development of the law.

Since Ms Carter no longer holds public office, the Bill is under consideration by another political party.It’s hoped that it will see the light of day in Parliament in early 2020.

Important things to know

• Please note that the legal uncertainty surrounding advance directives does not affect your absolute right to (a) refuse treatment and to be informed of the medical consequences of this action and (b) refuse food and drink (VSED). The invasion of a person’s body without valid consent is an assault, and subject to legal sanctions.
• Important too is the knowledge that doctors are far more likely to honour your end-of-life wishes if they have been reduced to writing.
• You can have a medic alert bracelet to indicate that you have an AD. Also, there is a wallet card that you should have in your possession at all times (see example above).
• You don’t have to seek legal help to have an AD drawn up, you can create your own or download a copy from our website (www.dignitysouthafrica.org).

National Advance Directive Registry

DignitySA are currently busy raising funds to create a National Advance Directive Registry. 

The aim is to enable folk to lodge their ADs on the registry so that if one is in an accident in, say, Pofadder, the doctor would merely have to go to the registry (using an ID number) to establish what their end-of-life wishes are.

Food for thought

In closing, most forward-thinking people have a last will and testament to ensure that their assets are dealt with according to their wishes after death. 

Sadly, the same cannot be said for advance directive. Surely our lives and the manner of our deaths are more important than the distribution of our earthly belongings?

MEET OUR EXPERT – Lee Last

Lee Last has been an executive member of DignitySA since 2014. She has always been involved in voluntary work and was trained as a Hospice caregiver and HIV/AIDS counsellor.