by Helena Dolny
Published by City Press, 14 July 2013
Making Choices and Dying with Dignity
For our ancestors, dying often happened suddenly. On the time scale of human history anti-biotics are a recent arrival. One morning US President George Washington had a sore throat; he died the next evening.
Madiba’s dying is different. Last week his wife Graca Machel, asked Rivonia trialists Ahmed Kathrada, Andrew Malangeni and Denis Goldberg to visit him in hospital for her husband to have “the stimulation of hearing voices that he knows.” Goldberg chatted. Madiba turned his head. “Graca said to Goldberg: “He is talking to you. . . It’s just that he cannot move his mouth,” The pipe down his throat prevented him from doing that.
The 1415 medieval best seller “Ars Moriendi” The Art of Dying Latin Edition had a hundred reprints across Europe. The book was about readiness to die; people took preparation for dying seriously. Atul Gawande is a US surgeon and journalist. Gawande’s 2010 New Yorker essay, “What medicine should do when it can no longer save your life” is a must read for modern times. There are choices to be made when faced with your end-of-life and the possibility of endless medical interventions.
Recently at my doctor’s surgery I noticed a patient’s file with a Living Will sticker on it. Their byline is “Do not resuscitate.” 43 000 South Africans have registered with The SAVES Living Will Society. SAVES stands for: saves Suffering and pain, Anxiety for loved ones, Valueless prolongation of a terminal illness, Existence without quality of life, and Spending life savings unnecessarily.
43000 people have made a decision ahead of time when they are sound of mind and not under the stress of imminent death. 43000 is a drop in the ocean. In 1991 in Wisconsin medical leaders campaigned to get end-of-life issues discussed. Over 5 years the of Living Wills grew from 15% to 85% of the adult population. When people went to a care facility they were asked to complete a form about “Advance Directives” with questions such as:
- Do you want to be resuscitated if your heart stops?
- Do you want aggressive treatments such as intubation and mechanical ventilation?
- Do you want antibiotics?
- Do you want tube or intravenous feeding if you can’t eat on your own?
This questionnaire prompted conversations way ahead of the time with many upsides. Doctors are guided by your choice and it avoids conflict. A friend’s daughter arrived to find her 86 year old mother on a kidney machine, drifting in and out of consciousness. Her suggestion that this intervention was not what her mother would have wanted was greeted with hostility. Doctors differ. Another eighty-five year old I know fell ill; she was going into renal failure - the doctor advised she would not recover. She had made clear she did not want life prolonging interventions, and so her last 48 hours were her last gift to her family - a precious time of conscious leave-taking.
Gawande tells us of Susan Block, a palliative care doctor who specializes in having such conversations ahead of time, listening to fears and concerns. But she almost missed the conversation with her own dad. He had appointed her as his health-care proxy to make decisions should he ever not be conscious to make them for himself. The evening before major surgery Susan realized, “Oh my God, I don’t know what he really wants.” Then she talked to him.
“I need to understand how much you are willing to go through to have a shot at being alive and what level of being alive is tolerable to you?”
“Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive, I’m willing to go through a lot of pain if I can have a shot at that.”
Surgery happened. Complications occurred. Doctors consulted with Susan. To save his life they’d have to operate again; if he survived he’d be quadriplegic and disabled for many months. She asked if her dad would be able to eat ice-cream and watch TV. When they said yes she gave the OK. The rehab was horrible –and if he hadn’t said what his criteria were –Susan Block would have doubted the decision. It took him two years to recover well, but he lived another eight.
Not all stories have good endings. Professor Sean Davison of UWC’s Forensics Laboratory went to stay with his mother in New Zealand. Terminally ill with cancer she became frustrated as her quality of life deteriorated. She decided to hasten her death by starving herself. She called it “doing a Bobby Sands” (after the Irish nationalist who went on hunger strike, protesting about prison conditions and insisting that he and others should have Prisoners of War status)
Sean’s story ‘Before we say Goodbye’ is hard to read. Imagine staying with your mom and watching her drink only water for 33 days. She’s becoming thinner. She becomes too weak to swallow the tablets that she saved for if and when still being alive feels unbearable. She asks for her son’s help. He crushes the morphine into water and spoon-feeds the lethal dose.
He writes his story. He is then charged with attempted murder. Later this is modified “Mr. Davison, you are charged with inciting, procuring, and counseling the assisted suicide of Patricia Elizabeth Davision on 25th October 2006. How do you plead?”
The laws in New Zealand are similar to those in South Africa. The countries world-wide which offer you the right to choose to die in certain circumstances are but a handful.
Gawande writes: “Spending one’s final days in an I.C.U. . . You lie on a ventilator, your every organ shutting down, your mind. . . beyond realizing that you will never leave this borrowed fluorescent place.”
And what about the stress on carers? A 2008 Coping with Cancer Study showed that caregivers of family members who die in ICU are three times more likely to suffer major depression in the following six months.
Human Rights mean living with dignity, with a quality of sanitation, education, shelter. Every day media stories on the rights of the living command our attention. We need to talk more about dying with dignity.