The ABC is showing a documentary on VE next week

“The Suicide Tourist”

Here’s what the site says

http://www.abc.net.au/tv/guide/netw/200908/programs/ZY9776A001D27082009T203000.htm

The Suicide Tourist
8:30pm Thursday, 27 Aug 2009 Documentary CC M

The controversy about a person’s right to die at a time and place of
their own choosing has become focused on the Swiss organisation
Dignitas, and its founder, civil rights lawyer, Ludwig Minelli.
Dignitas, based in Zurich Switzerland, is the only place in the world
where a person seeking an assisted suicide can be helped to die, no
matter where they are from. For a year, Oscar-winning Canadian director
John Zaritsky had exclusive access to Dignitas, and its clients.

In The Suicide Tourist, Zaritsky tells two interwoven stories about
suicide. In the first, he follows a terminally ill man, 59-year-old
American Craig Ewert, through the last four days of his life – preparing
to leave his adopted home in England for the last time, then on his
journey to Zurich, and into the care of Dignitas, with whose help he
will end his life. Dignitas – a kind of travel agency to the afterlife -
has made all the arrangements.

His death takes place in a rented apartment, where a Dignitas employee
prepares a fatal drink. With his wife Mary at his side, Craig swallows
the poison, and slips quietly into a final sleep.

In Switzerland, the law says only that suicide must not be assisted for
personal gain. Ludwig Minelli believes the option of a painless and
dignified death is a basic human right, and should be legal for all.

The second story in The Suicide Tourist follows Canadian couple George
and Betty Coumbias, who test that philosophy, and the Swiss tolerance
for a law that some say is giving Zurich a reputation for suicide
tourism. George has terminal heart disease, and would like to choose the
time of his death with the help of Dignitas; his wife Betty is
determined to die with him, even though she is perfectly healthy.

The unbearable agony of being  (The Age Newspaper Article)
John Elder

August 2, 2009
MOST of the time, it seemed that Dr Miklos Somogyi, retired mechanical engineer, didn’t really need a body. He was happy enough to have a brain for thinking his complicated thoughts, and his fingers to do the typing.
There was dining out at a local Italian restaurant or going to the movies with his wife, Erika, and for half an hour in the evening the world stopped still with the television news. But most of the action in Miklos Somogyi’s life took place in his sunlit study. ‘‘About 70 per cent of the time, that’s where he is,’’ says Erika.
For the past five years Somogyi has been working on a computer program that presents complicated mechanical components in 3D. The software is mostly complete. He needs another year to write the documentation so other engineers can make use of his baby.
‘‘And then, you know, I have another project. I have enough to do that would take me three lifetimes,’’ he says with the glee of a child with so many model aeroplanes to put together.
Miklos Somogyi may not have the extra year he needs. There may be only six months left to him, or a couple of years. ‘‘It’s all so vague. No straight answers to my straight questions,’’ he says.
In July 2007, Somogyi woke up with intense back pain. Six weeks later, after a variety of scans and blood tests, he was diagnosed with prostate cancer, and with a secondary tumour that showed up as a tiny dot on the spine in a full-body bone scan.
A locum urologist gave him the worst news in a roundabout way. ‘‘He said it would respond well to palliative care,’’ he says. ‘‘He asked if we knew what palliative care was — he didn’t have to explain it to me.’’
Somogyi’s regular urologist mentioned ‘‘something about three years. Whether that was a painless existence or my life expectancy, it wasn’t clear at all.’’
A biopsy confirmed the diagnosis, and Somogyi was put on medication to help him cope. ‘‘The pain was gone, but at a huge price: I became a zombie. No energy whatsoever. My wife had to put on the leash to take me for a 100-metre walk.’’
And yet, for 10 minutes a day, Somogyi managed to crawl to the computer and work on his project. He also continued his long-time habit of writing letters to the newspapers.
‘‘He’s always written things down,’’ says Erika. ‘‘He likes to document everything. It’s what makes him happy. And this has been an extraordinary experience.. It was more for him that he wrote it all down, and perhaps maybe for other people to know what is going on and what it is like.’’
About two months ago, writing in a haze of pain and rage from his hospital bed, unsure whether or not he’d walk again, Somogyi sent his 7000-word account to The Sunday Age. It presents a very raw portrait of a man coming to terms not only with death but with the madness of physical agony, the ‘‘panic and resentment that can pull families apart’’ when faced with the complexities of serious illness, the month-long despair of mistakenly believing himself to be a paraplegic with no light at the end of the tunnel, the horror of ‘‘becoming a vegetable’’, and the absurdity of a hospital system so large and impersonal that ‘‘you feel like you are being processed in a factory’’.
This was Somogyi’s rugged introduction to palliative care, where he found ‘‘a life that is no life’’.
‘‘And I know I will most likely go through it again. The cancer will come back and the next time there won’t be any coming home to Erika. It will be a nursing home — unless I do something horrible.’’
Like what? ‘‘Throwing myself in front of a car. A train. Plenty of people do it,’’ he says.
This was Miklos Somogyi speaking to me at his home, where for the past month he has been finding new ways to define a good life: the hard-work joy of shuffling around on a walking frame; toileting with privacy; traversing the 20 steps up to his East Toorak flat by gripping the handrail like a rope on a mountain face. Recently he managed 15 metres walking on his own, with his wife in front of him, ready to catch him with the walker. These people are in their early 70s, and their life together has taken on the highs and lows of dangerous adventure.
The first 18 months of Somogyi’s illness were spent at home, heavily sedated, keeping his project alive in dribs and drabs. It was in the new year when, as Somogyi writes, the pain returned.
‘‘I received five radiation treatments at The Alfred. In a few days the pain was gone and I was a perfect zombie again, sleeping 12 hours or more, doing nothing useful. But the complex regime of medication had many other side effects. Hot flushes with lots of sweating. I was itching with rashes. I was losing my hair. I lost the sense of taste. My speech was hoarse and too loud because I couldn’t hear myself because my hearing was affected.’’
After three weeks of this, there was a temporary miracle. An anti-inflammatory medication had the effect of an amphetamine on Somogyi’s system, and he found himself sprinting around the apartment. ‘‘Usually I woke up at 11 or so, and slept a lot in the afternoon. Now I found myself in the study at 7am … I accomplished more in a few hours than what the zombie did in weeks. Have you ever seen a 72-year-old hyperactive kid? I got my life back.’’
The manic revival lasted a week, and the comedown was brutal: an invasion of pain that reduced him to a panicked and demented raging. ‘‘Our doctor sent us to the emergency [department] of The Alfred. First we went home to collect a few things in haste. In agony I was shouting about the smallest things that Erika, understandably, took in a bad way. I was saying a lot of things that were completely out of character. We have been married more than 20 years, and never a loud argument, just love, even when we disagreed.’’
On the drive to the hospital, every change of gear, every step on the brake brought another hell-soaked scream. ‘‘We arrived to The Alfred and I was beside myself. I remember Erika complaining that I was aggressive, and a male voice kept asking me questions that I did not understand.
I remember shouting that I was in pain. In the haze I did not notice that Erika was in deep panic, that she was trembling all the time. I brought up old things that made her scream. Thank God that the damage I caused was overridden by love but it took weeks before the trembling ended. An episode like this might have torn apart a weaker family.’’
Somogyi was admitted to The Alfred at the end of January. When he later tried to document his first weeks, he couldn’t decide whether various episodes ‘‘were real or just my imagination’’.
It is necessary to point out here that Somogyi wasn’t experiencing actual palliative care, beyond the numbing drugs. In a hospice, the nursing has an inherent pastoral component as well a practical one. Palliative care is a specialist field where there is a strong awareness that a ‘‘difficult patient’’ is more often than not a patient in physical and emotional distress. At The Alfred, Somogyi was just one of many people who needed to be made well enough to send elsewhere. Too often it seemed that the hospital workers regarded him as a difficult patient, with no understanding of his fragility.
He writes: ‘‘It was necessary to have some CAT and MRI tests. A few young guys wheeled patients down to the basement to the machinery. They ran on the corridors, used the brakes, accelerated like a Schumacher, and were perplexed that I was shouting: a finicky customer. They weren’t told about spinal cord damage and related pain. From now on I was full of fear, and they were full of resentment when I complained, and then handled me without the slightest regard for my condition.
‘‘During another MRI scan I was wrestling with someone and heard a female voice: ‘He hit me.’ Whether it was haze or real, I’ll never know. Anyway, if a patient causes some trouble, then his reputation will follow him/her quite a way up.’’
In the first week especially, it seemed that Somogyi was caught in a permanent state of emergency. And to a large degree this was true. He needed surgery to rescue his spinal cord from annihilation.
He writes: ‘‘One day many experts from radiology and neurosurgery gathered to discuss my case. They offered me surgery to remove [thetumours] where there was no danger that the cancer would further spread, and put in some nuts and bolts to strengthen the spine.
‘‘They explained all the dangers but they added that these risks are not high and they gave me a piece of paper to sign if I agreed. Full of trust, I signed. The operation took place a few days later. A massive nine-hour operation: huge wounds on my back. When I woke up, I was told I had lost the use of my right leg, except the toes.
‘‘Never, ever sign a paper as stupidly as I did. The offer must be in writing well before the operation, leaving time for the whole family to digest it and get a second opinion, so that you can give an informed consent.’’
It was Erika who told him he was virtually paraplegic. With no one at the hospital telling him otherwise, Somogyi began wishing the rest of him would die too. He writes: ‘‘It took me a few days for the facts to sink in. I was a cripple. I will not be able to walk. I’ll be in a wheelchair. If I drop something, I have to wait for somebody to pick it up for me. I won’t be able to go up/down stairs, so I will be confined to a small area. No going out to a restaurant or a movie. And, most of all, how shall I get to the toilet and shower?
‘‘For the last question I got an answer rather soon. First, still in bed, a brace was put on me to prevent my spine buckling. It dug into my chin and sides, and pressed my spine if it was not correctly applied. Then, with help, I sat on the side of the bed. Someone wheeled in a huge lifting machine. I was attached to it, the machine then transferred me onto a commode. I was untied from the hoist and wheeled above the toilet.
‘‘When ready, someone wiped my botty and wheeled me into the shower. All this required two nurses, and was a blow to my dignity. How would I do this at home? And where would we have enough room for such machinery? Or shall we sell our cherished home to be able to get into a nursing home? I wished that I could just expire somehow. Voluntary euthanasia was high on my mind.’’
It wasn’t until a month later, when he was moved to Caulfield Rehabilitation Hospital, that a number of muscles were found to be working in Somogyi’s leg. He was told that physiotherapy might give him back a life worth living. On the other hand, at a family meeting to discuss his future, he was warned that the chances of him walking again were small. Reluctantly, Erika began checking out nursing homes. ‘‘I wanted him at home but we had to look at the option. I found we couldn’t afford the $300,000 they wanted for a bond,’’ she says..
Meanwhile, Somogyi’s wasn’t able to start physiotherapy straight away because he’d come down with shingles and he was put in quarantine.
‘‘Even during this quarantine,’’ he writes, ‘‘I was transferred daily for a radiation treatment — the last 10 sessions. I don’t know whether it was due to radiation or not, my tastebuds were reprogrammed and I found most food, and even water, revolting. … By now I [had] lost some 25 kilos and my muscles and strength were gone.’’
MEANWHILE, a clot was found in his lung. And then one of the rods came loose from his spine, and he needed another operation back at The Alfred. The glimmer of hope took on a taunting, impossible quality. Exhausted, Somogyi fell into despair.
‘‘I was in the deepest point in my life, at the end of my tether. I cancelled the remaining five radiation sessions. I told the gathering of doctors that I did not want to live this aimless life that will inevitably end in another hospitalisation and to please respect my wish. Of course, they could not. Of course they saw my potential much better than I did. Today I agree with them … wonderful psychiatrists consulted me, never contradicting me, and I felt their full sympathy all the time. They prescribed some calming medicine that ended my nightmares.’’
It was at this emotional turning point that Somogyi — fuelled by anger and a sense of purpose — found his pluck and started writing, with a laptop sitting above him on the swing-away table. And when he finally started physio, a gruelling program in which he was training to go home, the writing took on a joyful colour.
‘‘When I could move my bad leg … Erika cried. We started practising ‘transfers’, from the edge of the bed to a wheelchair and back. This gave me the opportunity to get out of bed and whizz around, in the brace, of course. First we did the transfers with the help of a sliding board. Later I could stand on
my feet unsupported for some two minutes … Next was from bed to the commode and back. This made the lifting device redundant. Holy cow, this was great! Going to the toilet and shower no longer needed two nurses … Freedom!’’
As much as she was excited her husband was coming home, Erika Somogyi had doubts about how she would cope. ‘‘But we are managing very well … it’s good for me to know I don’t have to worry.’’
The physio sessions are continuing at home and a carer comes three times a week to help Somogyi in the shower. ‘‘Miklos keeps saying he is confident about going it alone.’’
And while Somogyi pushes himself, testing the limits of his freedom, willing himself to get around without the walking frame, much of his time is spent on the computer. There’s the software project to complete, but also letters to write.
Last year, in his zombie state, Somogyi wrote to Premier John Brumby: ‘‘It happened many years ago, but the picture of my father as a 30-40 kilo skin-and-bone mass of agonising pain still haunts me from time to time … Now I am diagnosed with inoperable cancer of the spine … I have a good idea of what’s in store for me, and I do not wish to die the way my father did. But what options do I have? Kitchen knife, gas, driving into a train? Mr Brumby, I really don’t want to kill myself. I only want an insurance policy, just in case. If I can’t have that, I need to do something horrible …’’
Somogyi pleaded with Brumby to support the Medical Treatment (Physician Assisted Dying) Bill 2008. The Premier didn’t comply. The bill was predictably defeated in the upper house last November. Brumby no doubt receives countless letters like the one he received from Dr Somogyi. Voluntary euthanasia is off the agenda as far as the State or Federal Government is concerned, but it gnaws away at our ageing society. In the past two years, there were 179 newspaper articles published in Australia that dealt with euthanasia.
In the preface to his hospital-bed journal, Somogyi rails: ‘‘The politicians argue … there’s no need to discuss voluntary euthanasia. But their enthusiasm for palliative care as ‘the’ solution to all problems is misleading at best, and a deliberate lie at worst.’’
Now, at home in his study, swivelling in his wheelchair to face me, with wet eyes and shaking voice, he suddenly becomes very calm and steady. He is, after all, a veteran problem-solver. When he says he’ll figure out an ‘‘exit strategy and avoid ending up as a vegetable’’, I believe him.
After three weeks at home, Miklos Somogyi was re-admitted to the Alfred with intense back pain. The cause is being investigated.

________________________________________
The overwhelming majority of Australians believe in the right of the terminally
ill to seek and obtain medical assistance to end their life with dignity.
Dying With Dignity Victoria, Inc.    Reg. No: A0006974B    ABN: 80 591 186 892
3/9 b Salisbury Avenue, Blackburn, Victoria 3130
Web: www.dwdv.org.au     Email: dwdv@dwdv.org.au
Phone: (03) 9877 7677    Fax: (03) 9877 5077