Did she have moral right?

LETTER

In a recent letter to the New Zealand Listener, the writer (name withheld, understandably) told of his partner’s suffering with a terminal brain disease, under the heading: “Nine harrowing weeks”.

“In 2016, my partner of 27 years was diagnosed with a terminal brain disease. The disease first appeared in 2014, but by 2017, the effects made life intolerable for her. She determined to end her life, and the only choice open to her was death by starvation.

“My partner drank small sips of water over this harrowing period because after a few days of no liquid, her resolve failed. She determined to take no more than a few sips each day for comfort, but no food for the entire time. We managed this at home, and it took nine weeks for her to die.”

The situation is identical in principle, though of course very different with regard to timescale, from those poor people who jumped out of the Twin Towers to a quick death on September 11, 2001 to avoid being burned to death.

It would be interesting to know the reaction of opponents of the End of Life Choice bill to the predicament of the letter-writer’s partner. Specifically, while the writer’s partner clearly had the legal right to die in this way but, to press the point further, did she have a moral right to take her own life?

I’d like to put this as an open question to Maggie Barry, Simon O’Connor, Stephen Penk, Sir Bill English, Ken Orr, Chris O’Brien and all the other vociferous opponents of assisted dying. How would Simon O’Connor react to suicide by starvation, as a means of avoiding an even worse death, in view of the fact that he is on public record to have stated in Parliament (Budget debate, 28 May, 2015) that:

“There is no such thing as a right to die. There is a right to life.”

I suspect the answer would be revealing, and a refusal to answer even more so.

Martin Hanson, Nelson

In a recent letter to the New Zealand Listener, the writer (name withheld, understandably) told of his partner’s suffering with a terminal brain disease, under the heading: “Nine harrowing weeks”.

“In 2016, my partner of 27 years was diagnosed with a terminal brain disease. The disease first appeared in 2014, but by 2017, the effects made life intolerable for her. She determined to end her life, and the only choice open to her was death by starvation.

“My partner drank small sips of water over this harrowing period because after a few days of no liquid, her resolve failed. She determined to take no more than a few sips each day for comfort, but no food for the entire time. We managed this at home, and it took nine weeks for her to die.”

The situation is identical in principle, though of course very different with regard to timescale, from those poor people who jumped out of the Twin Towers to a quick death on September 11, 2001 to avoid being burned to death.

It would be interesting to know the reaction of opponents of the End of Life Choice bill to the predicament of the letter-writer’s partner. Specifically, while the writer’s partner clearly had the legal right to die in this way but, to press the point further, did she have a moral right to take her own life?

I’d like to put this as an open question to Maggie Barry, Simon O’Connor, Stephen Penk, Sir Bill English, Ken Orr, Chris O’Brien and all the other vociferous opponents of assisted dying. How would Simon O’Connor react to suicide by starvation, as a means of avoiding an even worse death, in view of the fact that he is on public record to have stated in Parliament (Budget debate, 28 May, 2015) that:

“There is no such thing as a right to die. There is a right to life.”

I suspect the answer would be revealing, and a refusal to answer even more so.

Martin Hanson, Nelson

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Renee Joubert, Waikato - 3 months ago
I disagree with Martin Hanson's comparison of terminal illness to being in the Twin Towers on September 11, 2001.

The people jumping from the Twin Towers had only two options: dying inside the building or jumping to their deaths. Death inside the building might have been the gentler option as people would probably have lost consciousness from smoke inhalation before the fire got to them. That aside, it was a sudden and extreme predicament they found themselves in.

Terminal illness is different. The changes usually happen gradually, allowing the person to adapt. It's common for terminally ill people to experience periods of depression as they go through the grief process. However, palliative care doctors have told me that dying people usually get to the point of accepting their situation and wanting to live as long as they can.

Maybe natural death is not as frightening as we think. According to a new video by Hospice NZ entitled, "What is it like to die?" natural death is generally more gentle than expected. In a large study by Clark et al* the authors concluded, "The terminal phase is perceived as a time where the majority will experience distressing symptoms, but this work suggests a contrary view." They found that the majority of people rated their symptoms as 0 out of 10. The most common symptom was fatigue - not pain.

New Zealanders with a terminal illness have the option of a gentle death, by receiving holistic patient-centred palliative care that helps them live as well as possible until their natural death. It sounds like the letter-writer's partner chose to go it alone, without such support.

If instead this person would have addressed the underlying psychological and existential reasons for wanting to die early, might they have changed their mind about wanting to end their life? Might they have enjoyed the rest of their life despite their disabilities and died a comfortable natural death? We'll never know.


* Clark et al. (2016). Physical Symptoms at the Time of Dying Was Diagnosed:A Consecutive Cohort Study To Describe the Prevalence and Intensity of Problems Experienced by Imminently Dying Palliative Care Patients by Diagnosis and Place of Care. Journal of Palliative Medicine.

Ann David, Wellington - 3 months ago
When testifying under oath in the High Court in the case of Lecretia Seales, representatives of the palliative care movement and palliative care medical specialists were obliged to admit that palliative care is not able to relieve suffering in all cases.

Further proof of this comes of the 2018 Patient Outcomes Report from Palliative Care Australia. It shows that up to 6 percent of its patients suffer "severely" in their terminal phase, whether from pain, other symptoms or psychological/spiritual reasons. Palliative Care in Australia routinely publishes reports on itself. These reports encapsulate what actually happens, not what the sales and marketing brochure promises.

Six percent in the New Zealand context would mean several hundred patients each year.

I obtain even further proof from palliative care workers I speak with. Because they know I can be trusted not to reveal names and most importantly to not reveal the names of their work places, they feel comfortable to describe to me what they see.

Alas, it is not always as Ms Joubert describes it. Patients do not always adapt to their slow decline and they do not always want to live as long as they can. Their "natural death" is sometimes agonising and nurses and carers are often very distressed by their patients' harrowing circumstances, circumstances they are unable to ameliorate in spite of their best efforts.

A person who starves herself to death as described in Mr Hanson's article clearly doesn't fear death; she fears the continuation of an unbearable life - unbearable as determined by herself, not by an outsider who has never met her.

However, I do not expect hard facts and data to persuade Ms Joubert, much less a consideration that others may have a different life philosophy from her own and be entitled to it. She is on a mission to prevent assisted dying being legalised and if that means pretending that all is rosy in palliative care, contrary to all evidence, she will stick to that line.

What she didn't do was answer Martin Hanson's question: Did the patient who starved herself to death have a moral right to take her own life?

Esther Richards, Tauranga - 3 months ago
I've always wondered if people believe in fairy tales and use these to guide them through their decision making processes in life as opposed to listening to other people's experiences.

It would seem Ms Joubert is one of these. In her comment she said "According to a new video by Hospice NZ entitled, "What is it like to die?" natural death is generally more gentle than expected." This can be found here: https://www.youtube.com/watch?v=toO_oI16XsQ. Believe it or not it is an animated short video, and by some miracle the person in the bed looks healthy, there are no machines or tubes around or on him. I'm surprised at the end they didn't put wings on him to fly him to heaven when he died.

Palliative Care organisations around the world acknowledge quite openly that they cannot offer such a simple death to everyone, in fact those who die the way this video shows would be a small minority. You only have to read some of the submissions from the last two Select Committee hearings to learn that there are people who die in extreme pain.

Then she refers to a "natural death", I guess by this she means under palliative sedation. This is in fact when the patient is put into a deep sleep and kept there through drugs. The feeding and fluid tubes are then removed, leaving the patient to die of dehydration or starvation. They cannot be absolutely certain that people don't suffer during this process as no one has survived it to ask them. But hey, in an animated world, they wouldn't feel anything.

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