Dying with Dignity

Not quick enough to be sudden; too sudden to come to terms with: how do we find dignity in death?

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Jos Hall from Dying With Dignity
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11 December 2017​

The following piece discusses death, dying and grief.

The doctor talks about ‘active dying’; ‘non-active dying’; ‘range of life’; ‘treatment options’. We speak in months, weeks, days. ‘Three to nine months,’ he says, but because mum isn’t actively dying she can’t go to the hospice. Because she isn’t going to recover she can’t stay in the hospital. I’m still unsure what ‘active dying’ is. I think: ‘If I can’t have forever, I’ll take nine months.’ I begin steeling myself for the worst: three months. Before leaving, he says mum can return home with community health support. Dad follows him to ask more questions about accessing that support.

Mum starts crying (the only time I see her cry). ‘I can’t wait so long,’ she says, ‘it’s too much pain; why won’t they let people die when they want.’

Everything stops. My mum’s a tiny bundle held together by the flimsy hospital gown. Breathing is so painful by now that they’ve put her on oxygen. I hadn’t noticed the thin tube under her nose before. Here she is, right next to me, bracing herself for the worst: nine months. The cancer had stolen so much of her and now her body was failing and betraying her on every level.

We lost mum to cancer on June 4, 2013.

On November 21, 2017 the Victorian State Parliament Upper House passed the Voluntary Assisted Dying Bill. To put this in context, in 1995 the Northern Territory passed the Rights of the Terminally Ill Act, but that was repealed by John Howard’s Federal Government; on November 16, 2017, a week before the Victorian legislation passed, the NSW Upper House rejected a similar Voluntary Assisted Dying Bill (the vote was 19 in favour, 20 against); and in late 2016 the South Australian (SA) Parliament rejected the Death With Dignity Euthanasia Bill (the speaker had to break a 23-all deadlock. It was the 15th time such a bill has been rejected by the SA Parliament).

The terms: ‘assisted dying’, ‘assisted suicide’ and ‘euthanasia’ are often used interchangeably, but there are differences. Assisted Dying refers to people already dying, and is where the patient takes the medication. Euthanasia also refers to people already dying, but in these cases the doctor usually administers the medication. Assisted Suicide includes people not terminally ill, but who are being helped to commit suicide. (The Conversation)

The Victorian Bill outlines that terminal patients wishing to access the scheme would need to: 1) complete two independent medical assessments and make three separate requests; 2) be over 18; 3) have been a Victorian resident for at least 12 months; and 4) would need to administer the drug themselves. There is also the stipulation that they only have weeks or months to live — no longer than 12 months (with some exemptions for certain diseases and conditions).

Similar laws have been enacted for some 30 years, in places like the Netherlands, Belgium, Luxembourg, Colombia, Canada and some US states. Data shows the numbers of patients using assisted dying vary: between 0.3% and 4.6%. The numbers often increase directly after legalisation is passed, and then level out. This is due to people waiting for the law to come online. This may happen after the Victorian legislation comes into effect. What these numbers don’t include are people suiciding on their own.

In the Netherlands in 2015, 5,516 of deaths were due to Voluntary Assisted Dying, compared to 9,000 deaths from a heart attack; 12,000 from the effects of dementia; about 38,000 from cardiovascular disease (that’s 27%); and about 42,000 from cancer (that’s 30%). The main reasons given by people choosing to die are loss of autonomy and dignity; being less able to enjoy life’s activities; and intolerable pain. Not all requests are granted. Between 1990 and 2011 granted requests were between 32% and 45%.

These laws allow us to speak about end-of-life choices differently: ‘active dying’; ‘non-active dying’; ‘range of life’; ‘treatment options’. They allow palliative care to behave differently. They change all the ways we die. These laws don’t exist in a vacuum.

Mum ricocheted between pain from all the cancers inside her: lower spine and hip, spinal cord, skull, shoulder, ribs, lungs, liver, pancreas, ovaries, cervix and sternum. She couldn’t walk, she couldn’t shower on her own, she couldn’t go to the toilet. Her immune system was shot, and her last days were punctuated with suffering, indignities and distress. Everyday things became increasingly difficult. Breathing hurt; memories leaked away, she struggled to recognise people and pronounce some words; she couldn’t even roll over in bed without help. Sitting for any length of time was taxing; her facial features were changing; receiving visitors of any stripe (friends, family, doctors) exhausted her. Not every death is like mum’s, but she didn’t have a choice.

If this article has impacted you in any way please call Lifeline on 13 11 14, or go to lifeline.org.au to access the online crisis support chat.

References:
A Delicate Touch: Craig Garrett’s grief memoir (unpublished) about his mum.
The Conversation: www.theconversation.com
ABC News: NSW; South Australia; Victoria
Dying With Dignity QLD: www.dwdq.org.au
‘Better off Dead’, Andrew Denton’s podcast: www.wheelercentre.com.