Legislation on end-of-life decisions in South Africa ‘long overdue’
While South African doctors remain in a legal wilderness around agonising end-of-life decisions, rapid, science-fiction-like advances in technology further complicate matters. This emerged in a recent online talk to hundreds of doctors by Professor Gert Saayman, recently retired Head of Forensic Education at the University of Pretoria and veteran of some 20,000 death investigations and postmortems.
Professor Saayman said the new technological challenges include online end-of-life directives and suicide notes, remotely controlled computer-driven pacemakers, pigs’ hearts and most dramatically, neuro-links between human brains and computer circuitry (Elon Musk-driven).
He said cryogenics and suspended animation were already modern-day realities, as was the first human head transplant on corpses, (smaller rats’ heads transplanted on to the necks of bigger recipients lived for 36 hours).
Synthetic biology — the application of engineering principles and ideology to the construction of biological organisms with the intent being the creation of new life forms to improve functionality, (rather than modification of existing creatures) — had “mind-blowing implications”, especially in the context of death, Professor Saayman said.
The author and co-author of some 50 peer-reviewed global publications in forensic medicine and science, Professor Saayman was a SAPS, National Prosecuting Authority and Department of Justice adviser and has served as an expert witness in scores of high-profile cases. He was the guest of the Medical Protection Society which provides legal indemnity cover for doctors in several countries, including South Africa where a growing climate of litigation has left the public health sector with a nationwide (currently being audited), claims bill of R71-billion.
Social Relief of Distress Grant
SA doctors honour ‘Do Not Resuscitate’
Professor Saayman said SA doctors are far too often victimised for perceived medical errors, often with no clear evidence that there was an error, with the drama playing out in the public arena, forcing colleagues into acting hesitantly or simply not engaging for fear of chastisement, censure or prosecution.
In one of four fascinating anonymous polls of his doctor audience, a full 84% of respondents said it was “very important” for them to have clear, formal guidelines and/or legislation regarding end-of-life decisions. These included withholding treatment, assisted dying and/or advance directives. Only 14% said it was “moderately important” to them, with 6% regarding it as “not important”.
In a poll on whether they would honour a “Do Not Resuscitate” directive found on an incapacitated patient, (either legally or ethically), 53% of the respondents answered “yes” and 18% “no”, with 29% uncertain. Professor Saayman juxtaposed this with an identical poll conducted in the US a few years ago in which respondents were split 50/50, “with no fence-sitters”.
Asked whether they would honour the express written and validated confirmed instruction (ie that he or she not be resuscitated or given lifesaving treatment) of a patient found in a comatose state as a result of suicidal self-harm, 56% said “yes”, 32% “no” and 12% were uncertain.
Professor Saayman highlighted suicide in SA, saying it was growing proportionately faster than homicide, even before the Covid-19 pandemic struck in March 2020.
“It’s a tragedy and something we can’t afford. We have the sixth- or seventh-highest incidence of suicide in the world, mostly by young, economically active people. This could all be legislated and provided for,” he said.
In his experience, suicide was “generally not impulsive”, with previous attempts and long-term planning more common, rebutting the frequently held belief that suicidal people were “not of sound mind”. He said the high court reiterated this when it validated the 2017 suicide note of an SAA pilot, changing his will. Professor Saayman also cited the case of an HIV-positive man refusing to take ARVs (but taking all other medication to treat his associated infections), because he believed this would disclose his status to his family. He consciously refused lifesaving care.
“Must we accept this? The answer is, bluntly, yes,” Professor Saayman said.
Plenty of viable organs, little permission
The outcome of his fourth audience poll was even more intriguing: Should the instruction of an immediate family member not to use or remove tissue or organs from a confirmed donor be upheld? A full 72% of respondents answered no, 19% yes, and 9% were uncertain.
Professor Saayman said this revealed “very liberal attitudes” among his audience.
“I’m not an ethicist or a lawyer, but we simply have to respect the fundamental principle of autonomy — it’s not a reason not to honour the deceased’s wishes just because they’ve died,” he stressed.
He urged doctors to conduct end-of-life planning with and on behalf of their patients to establish a clear legal policy directive by which they and their patients could act, while enrolling colleagues to witness this in writing.
As to when this should take place he said preferably before a patient was terminal or a dread disease struck.
“It’s a bit like asking about the best time to plant a tree, the answer being 20 years ago!” he joked.
This eliminated heightened emotions and the lack of lucidity usually prevalent after a terminal diagnosis. This advice stood, despite “the legal parameters being confused and inefficient”.
The same held true for organ and tissue donation, with such discussions common in the US, but very rare in South Africa, where the burden of life-ending trauma and family resistance to donation was frightening. Some 70,000 to 80,000 people in South Africa died unnatural deaths annually, creating an almost globally unmatched reservoir of viable organs and tissue, with procurement dramatically reduced by cultural and religious barriers as understandably hesitant transplant coordinators came up against reluctant relatives. Again, legislative support was urgently needed.
SA’s miserable legislative void
Since the late 1970s, when the concept of “Do Not Resuscitate” was first raised in SA, the issue had remained problematic, with spurts of progress made by top ethicists and the SA Medical Association (Sama), and a well-thought-through and substantive 1999 bill to regulate End-of-Life decisions eventually shelved.
In 2019, the National Health Amendment Bill was published with input from nationally respected Stellenbosch University ethicist Professor Willem Landman, but input from his landmark tome entitled, End-of-Life Decisions, Ethics and the Law, was excluded.
In the same year, a private MP’s proposed bill amending the 2003 National Health Act definitions and providing for the legal recognition of a durable Power of Attorney for healthcare and a Living Will, while “not as encompassing as the previous bid, but on point”, came to naught. It would have allowed for a designated person to speak on behalf of an incapacitated patient.
Although lapsed, the bill was still available online, with links, and was currently, “as good as it gets for a guideline to a living will”, Professor Saayman advised.
While he commended Sama for its guidelines on withholding treatment, he strongly criticised the Health Professions Council of South Africa for its lack of action — in flagrant violation of its credo of “guiding the professions and protecting the public”.
Likening doctors to expert cowboys wrangling a huge beast to the ground, he urged them to become activists for the cause.
“We’ve stood outside this arena for too long. It’s time to pressure our professional bodies. There are wonderful texts to guide us, we have superb ethicists, lawyers and human rights people — it’s time,” he said. DM/MC