Advance Directive: Your voice when yours is silenced

An advance healthcare directive is similar to a living will in that it expresses your wishes for future medical treatment if there ever comes a time when you are unable to communicate. Both a living will and an advance directive only become effective when you lose the ability to communicate for yourself and can provide detailed instructions on what medical treatment you do and do not consent to in various scenarios.

The key difference between the two documents is that an advance directive enables you to appoint a medical proxy, normally a partner or close family member, who will make decisions on your behalf if you are incapacitated. Advance directives and living wills have increasingly become part of estate planning in South Africa and play important roles in alleviating the burden on families in the event of tragedy.

Generally speaking, a living will expresses a person’s wishes not to be kept alive artificially where there is no hope of recovery and where death is inevitable. An advance directive, which includes the appointment of a medical proxy, often provides more specific details regarding treatments, medical interventions, pain management, infection control and palliative care at the end-of-life stage.

It can be a particularly valuable document for the families of those in advanced stages of dementia, persons in a permanent vegetative state or those suffering from a terminal illness.

Are advance directives recognised by law?

An advance directive is merely a document that expresses your wish to be allowed to die naturally and with dignity when the time comes – without medical intervention unnecessarily prolonging your suffering where death is inevitable. In other words, it is a request to your loved ones and doctors to allow nature to take its course. While the legal enforceability of an advance directive or living will cannot be guaranteed, the intention of the document is to provide clear guidelines for your family and doctors regarding end-of-life care and treatment.

As our law currently stands, South Africans can refuse medical treatment even if it causes death, unless a specific law states that a doctor must provide certain treatment. In terms of living wills and advance directives, the South African Medical Association has stipulated specific guidelines for medical practitioners to adhere to.

Further the Health Professions Council of SA (HPCSA) has issued guidelines stating that patients who have living wills or advance directives in place have the constitutional right to expect their wishes to be honoured. However, it remains true that doctors will have to rely on their professional judgement to decide on the applicability of the advance directive to a particular situation.

How does an advance directive stand in relation to euthanasia and/or assisted suicide?

Euthanasia or assisted suicide generally involved active intervention to terminate life and this is still unlawful in South Africa. As such, an advance directive or living will cannot include an instruction or direction for euthanasia or doctor-assisted suicide. However, the document can request that specific treatments be withheld or withdrawn. For example, your advance directive can include an instruction to refuse tube feeding or CPR as these do not constitute active medical interventions but rather the withholding of treatment which, in turn, allows nature to take its course.

What can be included in an advance directive?

An advance healthcare directive can provide important detail as to how and where you would like to be treated, which practitioners you would like to care for you and what interventions you will permit or refuse. Rather than providing blanket permissions or refusals, your advance directive can provide specific guidelines that are applicable to certain eventualities. These directives can cover:

Pain management: To what extent you would like to be treated for pain to ensure that you are comfortable and that your dignity is maintained.

Artificial life support: In which instances you would like to refuse artificial life support, even if it means hastening the moment of death.

Organ and tissue donation: Whether you would like to donate your organs and tissues, including the donation of your body for medical study and research.

Brain autopsy: In the case of dementia, you may grant permission for a scientific examination of the brain tissue after death which may provide valuable insight for doctors and researchers.

Aggressive medical care: You may wish to request aggressive medical and treatment to prolong your life even if you are suffering from a terminal illness.

Feeding tubes: You can indicate whether to permit or refuse feeding tubes, such as PEG tubes, NB tubes or central intravenous lines, in the event that you cannot swallow or eat. Bear in mind that feeding tubes can cause infections and complications. You can also express your wish to refuse manual force feeding by a care giver.

IV hydration: You may wish to refuse IV hydration if you are unable to drink, bearing in mind that this can be uncomfortable and can cause difficulty breathing.

CPR: In your advance directive you can decline CPR which will means that a do-not-resuscitate (DNR) sign will be placed on your medical chart.

Electrical, mechanical or other artificial stimulation of the heart: You may expressly permit or refuse such interventions.

Palliative care: You can include your wishes regarding palliative care, hospice and the treatment of pain. You can include details on where you would prefer to be cared for and by whom.

Antibiotics: You may wish to refuse all antibiotics outright or permit then only in instances to control symptoms and pain management.

Blood transfusion: Your advance directive can include your request to either permit or refuse a blood transfusion.

Because an advance directive must be drafted while a person still has legal capacity, in the case of a dementia diagnosis, the document should be drafted as soon as possible and before the disease progresses. The advance directive must be witnessed by two competent people and should be made available to your loved ones and healthcare practitioners. In most instances, it is advisable to appoint a primary and an alternative medical proxy in case your primary choice is unable or unwilling to act at a critical time. As an advance directive is intended for use while you are still alive, it is best to file the document separate from your last will and testament.

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