30-06-2025
Why we, as palliative care practitioners, cannot support the drive to legalise assisted dying
An open letter to Leigh Meinert in response to her article, 'Beyond the false choice – why SA needs both palliative care and assisted dying'.
Dear Leigh,
Thank you for opening this important conversation. We are grateful that Dignity SA is placing high-quality palliative care higher on their agenda but would like to present a more balanced argument as to why South Africa is not ready for assisted dying. We do also need to challenge some of the arguments put forward in your article.
The reality that some people experience – what happened to Di
First, our deepest sympathies go out to Yvette Andrews on the death of her friend Di. It was a brave account told with humour (the orange uniform), bravery and honesty. We acknowledge that our deliberations will not take away the pain of that moment, with Di asking Yvette to kill her. We only wish that she could have received the pain relief she needed at 3am that day. There definitely needs to be greater access to 24-hour prescriber (palliative care doctor) helplines so nurses like Yvette and patients like Di can receive the help they need at any time of day or night, especially if they want to remain at home. It is not uncommon for pain to escalate suddenly in the last week of life and often the dose and the way pain relief is given (such as by injection under the skin or into a vein) needs to change, so that pain relief can be brought about more quickly.
Euthanasia isn't something that should be added in an emergency, especially if proper pain relief an or sedation could have provided comfort without having to kill the patient. It is, however, understandable that Di wanted her life to be ended in that moment. We do not seek to undermine the severity of Di and Yvette's suffering.
Reality behind the rhetoric
You are right, Leigh, that we live in one of the most unequal countries in the world and appreciate your concern that only the well resourced can fly to Switzerland to end their lives. Carol de Swart was one of South Africa's recent patients to travel to Switzerland (in early 2024) for assisted suicide. She might not have been able to go had she not been awarded R4-million in a legal malpractice suit against a Pietermaritzburg hospital for radiation damage to her leg necessitating an amputation. She would also not have been able to do it without the assistance of Sean Davison of Dignity SA who was her witness in Switzerland.
According to quotes from journalists who interviewed her, Carol's main reason for wanting to end her life was that she felt she had lost her will to live when she lost her leg. She felt her quality of life was diminished because she was no longer able to lead the active life she had before (fishing and gardening). She was assisted to die because of a disability and not because she had a terminal illness. Although she says in an article that she does not see the value in holding grudges against the doctors who made a mistake, she does say she was upset by the fact that they lied. She fought this malpractice case for eight years, which must have made it difficult for her to move away from the feeling of being a victim.
One wonders if things wouldn't have been better for her if she had had better pain control, rehabilitation and mental health support while adjusting to life as an amputee so that she could have continued enjoying some of the things she did before her leg was amputated. A palliative care approach could have made this possible.
Friends, not foes
I do hope, Leigh, that after these exchanges that we can carry on being friends as you have been 'one of us'. Sometimes, however, friends need to agree to disagree. While we are working towards the common goal of helping people to have dignified deaths, our approach to achieving this is fundamentally different.
Palliative care and assisted suicide are not compatible. Palliative care is built on a foundation that views the person as being indescribably valuable as a person and is committed to doing everything possible to uphold the person's dignity and relieve their distress. To relieve suffering by mercifully killing the person, even if motivated by compassion, doesn't, in our view, speak to restoring their dignity if you're doing this by eliminating the person. Dignity, by definition, is the state or quality of being worthy of honour or respect, it is something that is inherent and shouldn't change if we regard all human life as sacred.
Harvey Chochinov is a palliative psychiatrist and arguably the world leader in research around dignity in palliative care. Chochinov's research has pointed out that a 'wish to die' is usually motivated not by uncontrolled pain, but rather by a loss of a sense of dignity – and that foremost in what determines a person's sense of dignity is their perception of how they are seen by others: In a sense, 'dignity is in the eye of the beholder'. Agreeing with someone that they should die, answers a question that they are asking, and confirms what they were suspecting of themselves – that their life is no longer worthwhile.
The South African context
Our South African context does indeed make these discussions even more urgent. Our public healthcare system is falling apart, and our private healthcare sector is uncontrolled and driven by consumerism and silo-working, with insufficient access to psychosocial and spiritual care professionals. To ensure that safeguards are in place to protect the vulnerable from feeling coerced, or simply feeling that they are a burden on others, and thus opting for assisted dying, we need strong mental health and social service practitioners to be part of the process. In South Africa, these services are unfortunately totally overburdened and, in many places, nonexistent (both urban and rural, private and public).
Assisted dying is currently only available in certain high-income countries. While strides have been made in low-middle-income countries in parts of Central and South America to legalise assisted dying (2022-2023), legislation in this regard has not been finalised yet. Although Cuba's healthcare system is better than ours, it is concerning that a country like Ecuador is jumping on the assisted dying bandwagon so early when their own research conducted in 2020 admits that they have significant gaps in the palliative training of healthcare professionals and still have problems (in 2021) with access and attitudes around liquid morphine. Assisted dying legislation in countries with underdeveloped palliative care services is going to make it easier for the desperate patient at 3am to be euthanised for manageable pain, rather than have this easily relieved with appropriate palliative care knowledge and medication. In addition, this is going to add to the moral distress of healthcare professionals. If you do a deep dive into the literature, you will find that it is not true that doctors do not ever regret their involvement in compassionate killings. As the old adage says, 'desperate times call for desperate measures'. There is also increasing evidence to suggest that safeguards do not provide the protection we think they do in countries where assisted dying is legal. Practitioners who administer lethal doses of medications in situations where criteria are not met, or have not been worked though, are seldom prosecuted.
One insurmountable problem with the legalisation of assisted dying is that there is no legal principle that can justify any restriction or 'strict safeguard' to remain in place. Any attempted restriction needs simply to be challenged in court, and the restriction can be overturned. If autonomy is the sole reason, there can be no justification for allowing one category of person such autonomy, while denying another – meaning in the end all requests for suicide, for any reason, must be upheld. This principle has been evident in the 'category creep' that has taken place in countries such as Canada.
MAID (Medical Assistance in Dying) in Canada is a runaway train – and this in a high-income country where the term 'palliative care' was coined (by a Canadian physician, Dr Balfour Mount) and where palliative care services are well developed. The Canadian case study shows that category creep is very real and the slope very slippery. MAID has gone from being offered to the terminally ill to those with chronic illnesses and mental health issues and is even being offered as a solution to war veterans with PTSD as well as to the homeless with social and financial stressors. The time from request for MAID to MAID being carried out is becoming shorter and shorter and soon MAID could be the leading cause of death in Canada (it currently shares fifth place with cardiovascular disease). It will become the rule rather than the exception.
If assisted dying is already a runaway train in many high-income countries, how much more could it become a cheaper panacea (high-speed train) to the many issues we face in low-middle-income countries. It is cheaper (and more efficient), after all, than providing palliative care and or providing even basic medical and social services.
Ubuntu and individual choice
While we applaud the increasing use of Ubuntu as an African philosophy to apply to ethical dilemmas in our context, its application to the issue of assisted dying is incorrect and not what African authors write about in the literature. Enyimba and Ojong in their 2019 article 'A critique of euthanasia from the perspective of Ubuntu (Africa) notion of Mutual Care' write that the core of Ubuntu is the 'value of caring… integral to the flourishing of the individual and community'. Ubuntu fosters collaboration and solidarity, it does not set up one person against another. It encourages everyone to communally care about others, to work out solutions to our problems together, whether social or economic. In the African context, caring is an integral part of the African people when it comes to the sick. Africans care for the sick until the point of death. This is why they argue in their article that from the point of view of mutual care, euthanasia is not permissible within African traditional society. People who are sick are also perceived to be useful within African Society. Everything and everybody is important. The terminally ill have value because they give family members an opportunity to express love, care, concern and compassion.
One might argue that a dying person who is in agony cannot relate to others and that their sense of moral worth becomes diminished and ultimately their dignity is infringed. This is the same argument advanced in the Stransham -Ford case in South Africa. However, with advances in palliative medicine, a dying person need not die while suffering and being in discomfort. The same court averred that the applicant who wanted a right to assisted suicide – Stransham-Ford – actually died with dignity, surpassing his own expectations and predictions of an undignified death.
Yes, African traditional communities have rituals for when people are ready to return to their ancestors, but pushing them to an earlier end is not part of this. Likewise, as you quote Archbishop Desmond Tutu, compassion does lie at the heart of Christian values, and yes, Christians also want to see people die with dignity, but not by killing them, which goes against the very grain of most religions where killing is immoral. With good palliative care, including excellent pain control and terminal sedation where needed, it is not necessary to make the 'ultimate sacrifice' you speak of.
A path forward
We agree that we need the courage to acknowledge that we live in a country where people die differently depending on their bank balance – but we also need to acknowledge that we also live in a country where people live differently depending on their bank balance. These injustices need to be addressed first. Otherwise, assisted death by healthcare providers is going to be the easier choice, and the least burdensome for the family and for the health sector.
One of the things that has driven modern man's desire for assisted dying is medicine's increasing capacity to reverse disease-related complications in patients who actually have underlying incurable diseases. This allows people to live longer, with more potential for suffering, because of increasing comorbidities. It is confusing to see patients pushing for experimental therapies that can cause immense suffering and put severe financial strain on families, who then, when they finally realise the battle is lost, want to advocate for assisted dying. Our desire for control and the challenges involved in managing total suffering and talking about death and dying earlier in a person's serious illness, are what have fuelled the request for MAID. Through advancements in modern medicine, often in pursuit of increasingly futile therapies, we are not allowing people to die the natural deaths they could have had.
We applaud Dignity SA's initiative in promoting advance directives to allow people the right to refuse life-sustaining treatments and to choose instead to die a natural death, but as palliative care practitioners we cannot support the drive to legalise assisted dying. Indeed it would be dangerous to do so in the South African context.
We remain as palliative care practitioners committed to the promise made by our founder, Dame Cicely Saunders:
'You matter because you are you, and you matter to the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die.'
In this context, helping people to die peacefully is about allowing them to die naturally with the assistance of all the knowledge and skills of palliative care (a medical discipline which was recognised as a speciality in South Africa in December 2024) so that we don't have to resort to killing them.
We would like to end our letter with a case study from one of our practitioners illustrating the capacity of palliative care to relieve suffering (even with remote assistance).
'A patient was recently diagnosed with advanced ovarian cancer and discharged home from hospital with minimal symptom control. Twelve hours after removal of all intravenous pain control in the hospital this patient was suffering greatly. After careful titration of morphine syrup, with the kind assistance of a remote doctor who guided my actions, this same patient had the best last three weeks of her life, according to her partner. She had been in pain for five months, finally diagnosed four months ago and was in a better place emotionally, spiritually and physically in these last three weeks of life. She was in the comfort of her own home among the people who loved her most, guided and supported by a palliative care team. She and the family were well prepared for the end which was inevitable with the advanced diagnosis she had received.'
Sincerely,
Dr Michelle Meiring, Palliative Care Paediatrician, Paedspal and University of Cape Town;
Associate Professor Liz Gwyther, Professor of Palliative Care, University of Cape Town;
Dr Andrea Mendelsohn, Palliative Care Physician, Groote Schuur Hospital, Cape Town;
Dr Martin Bac, Family Physician, Pretoria;
Dr Colleen Cox, Oncologist and Palliative Care Physician, Private practice, Durban and Cape Town;
Dr Raksha Balbadhur, Palliative Care Physician, Private practice, Durban and Cape Town;
Sr Heidi Thom, Palliative Care Nurse, Private Practice; and
Dr Louis Jenkins, Family Physician and Palliative Care Physician, George. DM
