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Why terminally ill people should have the right to die on their own terms

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About the book:
What gets people talking about death in ways that make them feel more powerfully alive? 

Author Helena Dolny’s quest for an answer and belief that we need to talk about living and dying inspired an eight-year learning journey and resulted in Before Forever After, a fascinating and absorbing book that includes the stories of many ordinary people facing challenging circumstances as well as the likes of Archbishop Emeritus Desmond Tutu, liberation struggle hero Joe Slovo and the iconic Nelson Mandela.

The below is an excerpt from “Before Forever After”, Helena Dolny’s book about why – and how -- we need to start talking about dying. Visit the website for more information: www.helenadolny.com  

Robin Stransham-Ford, lawyer and former soldier, used his own death as the last cause for which he would fight—the right to assisted dying. He wanted his determination and skills to benefit other South Africans who might come to face the same predicament as him.

Robin and his close friend, politician Mario Ambrosini, were both diagnosed with cancer around the same time.

Both took Chinese medications and medicinal cannabis to ease their pain, and together they drafted a private members bill asking Parliament to legalize the use of cannabis for healing purposes.

Mario responded less well to the treatments than Robin. Within a few months of his diagnosis, Mario was in a wheelchair. He could no longer swallow. He was losing his sight. He could no longer breathe on his own; he needed an oxygen machine.

Robin knew from a lifetime of living with death that there’s more hurt when such conversations don’t happen.

He struggled to speak through the avalanche of tremendous pain that painkillers failed to kill. Ambrosini rejected the practice of terminal sedation—that’s medication used in end-of-life care at such levels to lessen the pain but with the possible effect of unconsciousness, and the moment of death brought forward in time as a side effect.

Many opponents of assisted dying are comfortable with the terminal sedation; accelerated death as the secondary side effect is deemed acceptable whereas death as the primary intention of a prescribed dose of a barbiturate is not. A curious logic.

Ambrosini said he wanted the personal dignity of being able to die in a state of full consciousness. He decided to take the time of his dying into his own hands. He wanted agency. As South African law doesn’t yet permit access to a lethal dose of barbiturates for the terminally ill, he opted to shoot himself.

WATCH: eNCA chats to Helena Dolny about assisted death

The head wound that ended Ambrosini’s life, the gunshot that his family heard, the bullet that exploded in his brain, created a terrible physical end and intensified the family’s heartbreak.

Robin’s 11-year-old daughter Epiphany knew Ambrosini’s son and did not want her dad to choose the same ending.

As Robin’s health began to decline, they discussed the idea of a dying room in which he would spend his last weeks.

I’m told she said to Robin, ‘Papa, if you are going to do something like what Mario did, I would like to know. I don’t want to find out afterwards.’

She had heard her father’s war stories and knew of his expertise with firearms. Conversations about dying and death were not taboo between father and daughter.

Robin knew from a lifetime of living with death that there’s more hurt when such conversations don’t happen. These conversations were part of the legacy of love and care that he offered his youngest daughter.

Epiphany’s mother Penelope and her father Robin had lived apart for several years. As Robin’s health began to decline, they discussed the idea of a dying room in which he would spend his last weeks.

Epiphany wanted her father close by. She asked her mom not only to invite Robin to stay with them but also to give up her bedroom. There was enough love, reconciliation, and goodwill for this to happen.

Robin and I first met in November 2014 in Cape Town, in my then capacity as the chairperson of Dignity SA. Robin had offered to be an applicant in a case that the group planned to take to court on the right to assisted dying to request a new law which would be aligned with the new constitution’s right to dignity both in life and death.

We were looking for a diverse group of citizens, terminally ill, of different creeds, color, and gender; citizens who together would represent all South Africans.

The executive committee wanted to be sure that those that represented them be grounded, resilient, and able to handle media attention, and I needed to understand Robin’s background to see if he was a good fit for our strategy.

We met in the foyer of the African Pride hotel, one of those double volume ultra-modern compositions with seating for show rather than comfort.

The hotel wasn’t far from the houses of Parliament where Robin needed to be because of his involvement in ongoing consultations on the legalization of medicinal cannabis. The meeting stretched over two hours, with Robin doing most of the talking.

It was just 10 weeks after Mario had died and he was deeply disturbed by the manner of his dying. He told me then about his offer to shoot Mario—an offer which his friend refused.  

‘I know so much about guns,’ he told me. ‘I’m a professional. I would have chosen the gun and selected the right bullet. I know the best weapon to choose for the least trauma. There would have been no mess.’

Deeply committed to people being able to die with dignity, he wanted terminally ill people to have the legal right to get a lethal dose of barbiturates, if their suffering was such that they no longer wished to live.

To purchase a copy of Before Forever After by Helena Dolny, visit Takealot.com.

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