Ideasroom

When is the right time to die?

The University of Otago's Jessica Young interviewed 14 terminally ill people who would have considered choosing assisted dying if it were available, about what a good death meant for them. Here she makes a case for assisted dying based on what they told her. 

Covid-19 has brought death to the forefront of our minds and prompted us to think about what a good death is in these new circumstances.

Until now, most people haven’t been confronted with their own mortality much, despite death being the common denominator that unites all living beings. It doesn’t end there; dying is on the agenda of this year’s election.

New Zealanders are going to vote whether to ratify the End of Life Choice Act at the election. If the referendum passes, it would allow a person with a terminal illness with a life expectancy of less than six months, who is in an advanced state of irreversible decline in capability, is experiencing unbearable suffering and is of sound mind, to make a voluntary request for a choice over how and when they die.

One of the major concerns with assisted dying is that people who have chosen to die may have gone on to live longer or change their minds about dying at that time. From my research with dying people, what I found was that they all said they would know if and when the time was right for them to choose to die. They thought they can, and should, be trusted to know what’s right and wrong for them when it comes to end of life decision-making.

I was fortunate to interview 14 New Zealanders from around the country, of various ages, backgrounds and beliefs, who have a limited life expectancy due to illnesses such as cancer, chronic lung disease, auto-immune disease, and motor neurone disease. These people have given a lot of thought to their own mortality and what a good death means to them. 

They wanted the option of assisted dying to guarantee they wouldn’t suffer at the end of their lives. “When there is nothing left but suffering, I want the choice,” said one man with motor neurone disease. Assisted dying shouldn’t be confused with wanting to die or suicide. These people were already dying. As one woman dying of cancer put it, “I just want to hang in there until I can’t, and then I want to have a peaceful end”.  

The people I interviewed have been through so much already – multiple treatments, intense pain, nausea, surgery, declining function, trouble breathing, plus shrinking physical and social worlds. The interviewees said assisted dying was the compassionate choice. As an upside of these difficult experiences, people came to know themselves in a deeper way and what they could tolerate. “You should have the choice of when enough is enough,” another man with motor neurone disease said. Many emphasised they were of sound mind to make this decision. 

What makes each person’s life worth living, their purpose, their own version of a good life and a good death, and the important bit in between - dying, is unique. To my interviewees, this means we should each be able to decide what is right for us in accordance with our views on life, so long as it doesn’t harm anybody else. They expected tight regulations to make sure the system was safe for everyone. Deciding if and when to die is not a decision the dying will make lightly. 

My views on access to assisted dying are that it should only be made available to terminally ill people who have freely made this decision, have access to, or at least offered, the option of care that meets their needs, and who have a sustained wish to hasten their death.

Motivated by compassion, I support terminally ill people who want the option to hasten their death to relieve their suffering. On behalf of the people I interviewed, I encourage you to do the same. Having looked closely at the international data, I’m confident a system, based on the End of Life Choice Act, can be designed to ensure assisted dying can be managed safely.

Jessica Young is a member of the newly-formed 2020 End of Life Choice Act Referendum Inc, set up to provide information on the issue before the election.

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