On February 3 2017, palliative care specialist Dr Sue Walter was driving in Joburg when she got a call to say she had been diagnosed with a bone cancer known as multiple myeloma, typically incurable. “I remember the day. It was the day before my birthday,” says the 47-year-old mother.
“Obviously it was a shock, and it really made me want to change the law,” says Walter, who was already fighting for the right to die with dignity before that day.
“Palliative care alleviates suffering in the majority of cases, but in some cases it is not enough,” says Walter. “Patients should have the right to make autonomous decisions. I am fighting for them to have access to assisted dying at the end.”
Years of clinical practice with terminal patients and her own experience of cancer have given her profound insight into why this is needed.
In the past two weeks she finally got to present her case for physician-assisted suicide in the Gauteng high court (Johannesburg).
Demanding cross-examination last week, on Tuesday by the state and the Health Professions Council on Wednesday and Thursday, arguments wrapped up before the weekend.
“It takes a lot out of you when you realise how big this thing is you are fighting for. It is gruelling,” says Walter on Wednesday evening, fatigue tamping down her voice.
She became bedridden and had to stop practising as a palliative physician before she went into remission from myeloma in August 2019, two years after launching the court challenge.
“This case is not about me, but for those patients who don’t have access to assisted dying,” she says.
Seeing somebody suffer when the morphine doesn’t work is terrible. It is not just the pain, but everything associated with it: the nausea, agitation, aggression and anxiety, and the feeling of being a burden on your family or society.
— Dr Sue Walter
Walter and her fellow plaintiff Diethelm Harck, diagnosed in 2013 with motor neuron disease, were given expedited access to present their evidence before a judge — lest they are no longer alive when the case reaches court.
In a prior case in 2015, the Gauteng high court (Pretoria) ruled that 65-year-old adv Robin Stransham-Ford, who was dying of prostate cancer, could legally ask a doctor to help him end his life. Two hours before the order was granted, he died. The Supreme Court of Appeal rescinded the order on a technicality.
Walter’s commitment to this cause preceded her own diagnosis, says Prof Kevin Behrens, director of the Wits Steve Biko Centre for Bioethics and supervisor of Walter’s PhD, before she had to stop.
“She was bringing to the table not only activism, but her knowledge and practical experience of patient care,” he says.
“She was already established in palliative care and was very concerned at the time that medical teams were overriding the advanced directives (also known as a living will) of patients. She wanted to do research that would at least help to change the law.”
In a living will, people express what treatment, or non-treatment, they would want if they were unable to make or express these decisions themselves.
Walter opted out of aggressive treatment for her myeloma, given the advanced stage of the disease and the side effects related to treating stage 3 myeloma. When asked about interventions, such as diet, she says: “I have been a vegetarian for about 10 years. I did nothing specific; I could have died.”
Instead, Walter is defying the odds. In June she got Covid-19 along with her daughter Amy despite “taking the same precautions as everybody”.
“I have recovered 100%,” she says.
1918: Switzerland was the first country to permit voluntary suicide and euthanasia.
2021: New Zealand is the most recent country to allow assisted dying.
— Tracking euthanasia
Her husband and 18-year-old daughter, the author of a published novel, give her vital support. “I am a proud mom. Amy finished matric last year and received five distinctions, despite my illness and her being in hospital.”
Walter has superior qualifications to most of her peers, having graduated with three psychology degrees from Johannesburg University (then RAU) and Unisa before she studied medicine.
In 2007, she qualified as a doctor, soon doing a diploma in palliative medicine at Wits, followed by a masters in palliative medicine from UCT, before she registered for her PhD.
This month Walter’s expertise in palliative care was put under the spotlight. Referring to patient files, in camera to protect their privacy, she presented her experience of the limits she had in treating patients — some of whom longed for a permanent release from pain.
“Seeing somebody suffer when the morphine doesn’t work is terrible. It is not just the pain, but everything associated with it: the nausea, agitation, aggression and anxiety, and the feeling of being a burden on your family or society.”
Total pain, in her view, extends beyond physical pain to the emotional and spiritual pain that dying patients commonly endure.
Some people get another lease on life simply by being given the means to die in countries where assisted dying or/and euthanasia are legal, says Walter. “They feel like they have got control and end up not ever using it. Knowing they have the option is enough to keep them alive.
“We see the choice, giving some control to the patient, as life-enhancing and life-prolonging.”
It takes a lot out of you when you realise how big this thing is you are fighting for. It is gruelling.
— Dr Sue Walter
The opponents of assisted dying often invoke the sanctity of life as a reason against assisted death, even if patients are suffering intolerably and there is no cure.
Walter is quick to nullify this objection. “If euthanasia or assisted suicide does not accord with your religion or your beliefs and ethics, then you do not choose it. It is an autonomous choice, not a prescription by a doctor!” she says.
“The right to life implies the right to death,” she says.
A landmark Canadian ruling in 2015 that allowed adults in “grievous, unending pain” to end their life with a doctor’s help found that “the sanctity of life also includes the passage into death”.
Doctors would not be under pressure to provide an assisted-death service if they did not wish to, says Walter. “They would not have to be involved. It could be the same as the termination of pregnancy, where they are able to refer to a doctor who is willing to do it.”
The Centre for Applied Legal Studies (Cals) at Wits University has been permitted to join the proceedings in support of assisted dying as a friend of the court (amicus curiae), and the Human Rights Commission is also listed as one.
We hold the position that the constitutional right to life includes the right to dignity and the right to autonomy, which should carry on to death.
— Cals attorney Sheena Swemmer
Cals attorney Sheena Swemmer says: “We hold the position that the constitutional right to life includes the right to dignity and the right to autonomy, which should carry on to death.”
Euthanasia and assisted dying have nothing to do with eugenics or eliminating vulnerable groups, she says, responding to concerns around this.
Former SA Medical Journal editor-in-chief Prof Daniel Ncayiyana wrote in 2012 that “euthanasia seems to be a concern among a small, largely white elite” and legalising it could potentially “‘benefit’ only the well-off while opening up the potential for perverse application among the poor and other vulnerable groups”.
Swemmer says the support for euthanasia cannot be judged by court actions, given that the majority of South Africans struggle to get access to the courts.
There are good people on both sides of the debate says Behrens, noting people’s fears of a “slippery slope of abuse”.
“The fears are that every grandmother will be killed by unscrupulous doctors, or that everyone will get a pill, but this is a strawman fallacy,” says the former Methodist minister, with a PhD in applied ethics. “There is no empirical evidence for this in countries where physician-assisted death is allowed.”
Walter says tight policies, procedures and rigorous assessment processes govern the process of assisted dying in countries where it is permitted. “We have seen these jurisdictions have not fallen down a slippery slope.”
“Just as I have argued firmly for compassion and fairness in life, I believe that terminally ill people should be treated with the same compassion and fairness when it comes to their deaths. Dying people should have the right to choose how and when they leave Mother Earth. I believe that, alongside the wonderful palliative care that exists, their choices should include a dignified assisted death.”
— Archbishop emeritus of Cape Town and Nobel Peace laureate Desmond Tutu on assisted dying
Compassionate practitioners from the Palliative Care Association of SA are nevertheless among the expert witnesses for the state and the Health Professions Council of SA lined up in opposition to assisted death.
Desmond Tutu, Archbishop Emeritus of Cape Town and a Nobel Peace laureate, announced in 2014 that he had reversed his position on this and decided to support assisted dying on compassionate grounds.
“Regardless of what you might choose for yourself, why should you deny others the right to make this choice? For those suffering unbearably and coming to the end of their lives, merely knowing that an assisted death is open to them can provide immeasurable comfort,” he wrote.
“Let parliament make legislation that fits SA!” says Swemmer — echoing a point made in the high court in 2015.
Switzerland, the Netherlands, Belgium, Luxembourg, Canada, Colombia, New Zealand, Australian states such as Victoria and US states such as Oregon are among the jurisdictions where assisted dying (assisted suicide) or/and voluntary euthanasia are allowed.
What they permit is significantly different, with the most liberal and controversial position being found in the Netherlands.
In the Netherlands, assisted suicide for minors is allowed if the parents consent. The highest number of notifications of euthanasia in 2019 was from 70-79 year olds.
“Policy is culturally determined,” says Swemmer, the head of gender justice at Cals.
As an amicus curiae, she will present a global overview of other jurisdictions and their track records when the case is heard by the final quarter this year.
Until then, Walter is counting down the days before her family and dogs get to see more of her. “My four dogs are my ‘go-to’, and I’m spending more time with them: a Newfoundland, a Saint Bernard, a retriever and a spaniel,” says the palliative care specialist, with a case that couldn’t be closer to her heart
Euthanasia (also known as voluntary euthanasia) refers to deliberate steps taken with the intention of ending a person’s life at their request, usually by administering a substance.
Assisted suicide or assisted dying (assisted death) is defined as “the act of intentionally providing another person with the knowledge or means to end his or her life, at his or her request”. Other common terms for this are physician-assisted suicide, medically assisted suicide, physician-assisted dying and medically assisted dying.
“The main distinction that is usually made between euthanasia and assisted suicide is with regard to who performs the final, fatal act, the individual themselves or someone else (for example, a doctor).”
Source: Irish Hospice Foundation Paper: The International Experience of Assisted Dying, January 2021
— Euthanasia vs Assisted dying
