Why we need to start talking about end-of-life directions for terminally-ill Coronavirus patients

Simon Delaney*

A doctor attends to a COVID-19 patient at an intensive care unit. Felaid Belaid/AFP

A doctor attends to a COVID-19 patient at an intensive care unit. Felaid Belaid/AFP

You’re lying in a coma in an ICU bed, struck down by COVID-19. You’ve been subjected to aggressive, invasive treatment, including placing a thick, hard, plastic tube down your windpipe, using a ventilator to help you breathe and a dialysis machine to filter your blood. These are life-saving devices. But you are simply too weak to recover, so these machines merely postpone your death, slow and agonising.

You have no end-of-life documents specifically stating when technology like this should not be used. Your physician is forced to agonise over removing you from a machine that could save someone who is more likely to recover.

If you had been asked before you got sick about your end-of-life preferences, what would you have said? “Continue treatment as long as I have a reasonable chance of doing things that give my life meaning. Otherwise, don’t let me linger on life support.” Or you may have said “Do everything medically possible to keep me alive.”

The problem is that by the time you have to make these decisions, you may be unable to communicate, so your family will speak for you. But during lockdown, your family won’t be allowed anywhere near the hospital. Moreover, the doctor who cares for you in the hospital may not be someone who knows you at all. COVID-19 has transformed end-of-life care. To be sure that your wishes are carries out, you need a living will.

What is a living will?

A living will is a short document explaining what medical treatment you do or don’t want in the event that you can’t give informed consent. A living will can also nominate someone to make medical decisions on your behalf. The document may allow for organ donation, using your organs to give someone else another chance at life.

Keep in mind that South Africa still doesn’t have laws specifically authorising living wills. But it is still a very useful document to have. Under current law, South Africans can refuse medical treatment (even if it causes death) unless a court orders certain treatment. Because euthanasia is still illegal, you cannot choose for doctor-assisted suicide in a living will. You are entitled to request for specific treatments to be withheld or withdrawn, but you cannot ask a doctor to end your life.

There’s no guarantee that a living will will be honoured under all circumstances. The document may be too specific to apply to different circumstances, or it may be too vague to give clear directions about your wishes.

What are the benefits of a living will?

Above all, a living will gives you peace of mind. Particularly when life is so unpredictable during this pandemic, you want to make tragic situations as easy as possible for yourself and your family. Being on life-support, especially when there is no reasonable chance of recovery, is incredibly expensive. And while it might seem heartless to put a price on life, medical bills could be devastating for many families.

Drawing up a living will is relatively straightforward, and while you can do it yourself, it’s always best to have a lawyer assist you with the process. The living will should of course be accessible, so best to give a family member and your GP a copy.

It is inevitable that we will be talking about and exposed to death during COVID-19. It is a grim reality, but a reality, nonetheless. As such, it is critical that we start talking about the end of life, before it’s too late. With day-to-day life feeling particularly uncertain, it is nice to feel like something is still your choice.

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*Simon Delaney is an attorney in private practice in Johannesburg.