Roy Harvey | ACT voluntary assisted dying laws can help other avoid appalling deaths

My father died in 1984 after having what I would call paranoid dementia for three years - he carried a large iron file with him because he felt he needed protection from some nameless danger; he experienced all manner of delusions and anxiety; he accused my mother of behaviour that distressed her greatly - "why would he say that about me," she would say.

She was a small, strong woman, but with no community nursing or home help available, and continuing accusations, she lost about seven kilograms in those years.

Dementia was then only being widely recognised as a condition, and then, as now, there was no effective treatment.

Dad went into a nursing home for a few weeks before having a stroke which ended his life quickly and peacefully.

My mother died in 2002 at the age of 90 years. She lived by herself in Queensland on a two-acre block with lots of animals. She was physically active, socially engaged but with some mobility limitations, until she was about 84.

Then she had a series of transient ischaemic attacks (TIAs) which eventually led to significant loss of decision making ability and memory.

At this stage she moved to Canberra and lived with my wife and I. We were both full-time employed, occasionally requiring interstate and overseas travel.

With a small amount of home-care support, this worked well for us all.

She then had a major stroke which resulted in her requiring a wheelchair and assistance in bathing and dressing.

After some time, she agreed to move in to a nursing home.

Quality of care was initially very poor - we had a supply of wheelchair cushions at home so that we could wash, dry and replace the piss-soaked cushions on her wheelchair during her home visits.

We were surprised how well Mum adapted to the nursing home environment. After about a year she died relatively peacefully, relatively painlessly, and relatively quickly in hospital after a heart attack.

After Mum's death, my wife and I discussed our end-of-life preferences. We had very similar views.

To oversimplify, we wanted to be assisted to die if we couldn't wipe our own bums, couldn't feed ourselves, and/or had advanced dementia or some other significant loss of mental faculties.

My wife also "did not want to be old" - she never fully explained what that meant.

About seven years ago, she found a lump in her right breast which she decided not to have treated.

Subsequently she had three significant cancer breakouts for which she accepted treatment to moderate the symptoms, but only after extensive discussions with clinicians about cost-effectiveness of alternative treatments. She told clinicians of her abhorrence of "being a disease on legs".

She told them of her intention to end her life at the time of her choosing - but did not expect them to take any part. She told several family members of her intentions and that she and I would sort it out.

Two weeks before her death, she went in to hospital to have drains inserted to remove fluid from her lungs.

While in hospital she was in considerable distress, had two drains out of her back and a canula/line in each arm.

At one stage, there were three or four people trying to change her continence pads. I had to walk out of the room - I was overwhelmed with the thought/emotion that "this is exactly what you said you did not want".

But when she came home, I couldn't say that. She became so focused on hour-by-hour survival that she didn't say anything to me.

At home she was assessed by a home care palliative physician and had daily visits from palliative care nurses. In four days she had three changes in pain control medications and form of delivery.

In three successive days she experienced every one of the things that she said she did not want: significant faecal incontinence; then being unable to feed herself or drink from a cup because of violent tremors; then mental confusion leading to delusions.

Each day I was told that these were known side effects of the changed medications. She was admitted to a hospice.

After about 30 hours in the hospice she was lucid and the cancer pain controlled. Her first comment to me was "how did I get here - I'm appalled".

To another family member she said "take me home, I don't want to come back".

The only pain that she complained of was back pain - the mattress was clearly unserviceable but took three days to have it changed.

One evening, I had to ask staff why they were waking her up an hour after they had given her sleeping medication - "to give her the pain control medication," I was told.

She slowly lapsed into unconsciousness and died after several days in that state.

I am in continuing discussion with health authorities about the extent to which my wife's end-of-life experiences were avoidable and whether the services can learn things that might help other people.

Several people have shared the end-of-life experiences of relatives with palliative care and hospice care.

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For some, it has been as described by the palliative and hospice care proponents - well managed and relatively peaceful. But several others have told me of there family members asking them to just end their suffering.

The ACT government is calling for submissions on what end-of-life legislation should be adopted.

I will be submitting that a person should be able to make an end-of-life directive, similar to an advance care directive - this could dramatically reduce concerns about coercion (especially when dementia is an nominated reason). The issue of legal protection for persons (family, friends) who assist others to carry out their end-of-life intentions does not seem to be discussed in the government discussion paper. It should be.

Except for perhaps prescribing needed end-of-life medicines, I see no reason for the involvement of end-of-life decisions for well-functioning individuals.

The ACT consultation on voluntary assisted dying should, rightly, pay attention to addressing the hard issues associated, but it should also set out clear, simple guidelines and protections for people who make informed, non-coerced decisions about how their life is to end.

I urge others to make submission so that there is a wide range of views put into the public discussion.

Given what happened in the last few days before my wife's admission to the hospice, and what she said in her lucid days in the hospice, I still haven't been able to get away from the feeling that I failed her by not assisting her to die without the traumas she experienced.