End of life decisions

Dad had always believed euthanasia was a dignified and acceptable choice, that it was a human right to die with dignity. When we received the news Dad had only a couple of months to live, the family travelled to Switzerland where surrounded by his wife, his children, his brother and sister Dad’s life ended painlessly and peacefully aided by DIGNITAS. DIGNITIAS offered our family a wonderful end to Dad’s struggle and left all of us very at peace with Dad’s passing for which I will be eternally grateful.

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Before his diagnosis Dad had seen a close friend’s wife struggle with and ultimately pass away from a GBMIV. On one visit she’d described to Dad an experience of intense burning pain as though her arm were on fire. He’d been quite affected by this visit and on arriving home to his family commented as he often did just how lucky we were that we were healthy but added that were he ever afflicted with a condition similar to that of his friend’s wife he’d rather not stick around.

When Dad received his own devastating diagnosis we all knew that euthanasia would feature highly in his thoughts.

Unfortunately for Dad the biopsy operation to confirm his GBM diagnosis left him far worse off than any of us expected. He’d gone into the operation with occasional difficulty finding the right word and difficulty reading complex sentences but came out with significant difficulty finding words, difficulty putting sentences together, unable to read anything and with a lot less confidence.

Soon after his recovery he was expected to start radiation and chemotherapy. I can’t recall exactly at what point it was that it became obvious that Dad was seriously contemplating taking his own life but it was around this time, either shortly before he started the gold standard of treatment or just after it began. It was the saddest thing because so much was unavailable to him now, he could no longer read so couldn’t research the internet, he could no longer express himself so couldn’t go into a hardware store and buy equipment or into a chemist and ask for pills.

He didn’t have to do it alone

We sat down with Dad and said we thought he was considering taking his life and what a huge burden this must be for him. We told him we supported him in this decision and if this is what he wanted we were there to help. So we ordered the peaceful pill handbook from amazon (which runs through a variety of different exit options) and we signed up to DIGNITAS in Switzerland and started educating ourselves about this process. DIGNITAS provides voluntary death to those who are eligible. We’d seen a brilliant documentary ‘The Suicide Tourist’ about it not long before Dad’s diagnosis which we watched again together as a family.

My brother read Dad each option described in the peaceful pill book but it seemed the only real option available to him was DIGNITAS (which by the way is also described in the peaceful pill handbook). Unfortunately this option involves a lot of paper work, forward planning, a considerable amount of money and a long flight to Switzerland. I think Dad started to feel hopeless and shortly before his death confided in my brother that he’d seriously contemplated slitting his throat in the bush not far from our home. He had always insisted on taking walks by himself, even when it really didn’t seem wise and we all had a feeling that possibly part of his motivation was to scope out a suicide location. It was heartbreaking to have this confirmed, what mental hell he must have been through.

Dad’s time was up

Poor old Dad stuck it out to the end. He’d tried chemo, radiation and a lymphocyte treatment and nothing had worked. On the 16th of September 2010 we received advice from the neurosurgeon that Dad’s time was up, he had perhaps two months at the most and he would be bed bound for a significant portion of this time. He could expect to become completely paralysed on his right side, his speech would become more and more limited and the risk of a seizure would be ever present.

Mum quickly organised the last of the paperwork for DIGNITAS and we booked our flights to Switzerland departing that week. Unfortunately the earliest appointment with DIGNITAS was one month away. At the time we booked they only had two doctors working for them (apparently working for DIGNITAS is very difficult for doctors in Switzerland for political reasons).

The flight

The neurosurgeon had advised that it is discomfort and dehydration that causes the majority of problems for brain tumour patients on flights rather than anything else. He strongly advised that Dad start Dexamethasone (Decadron) again and take anti-seizure medication for at least three days before and after the flight. So we dosed Dad up on Dex and anti-seizure meds and prayed that he’d make it to the UK without issue.

Dad and Mum were to fly business class on the way over (the one and only business class flight Dad ever took) and an economy flight on the way back (Virgin airlines was great for this, most other airlines insisted you book both the outgoing and return flight in the same class).  It was really good to have a return flight booked because we could then assure Dad that if at any point he didn’t wish to go through with it, he didn’t have to, we’d all come back together, there was a flight for him.

We chose an English speaking air carrier because if anything had gone wrong on the flight at least communicating with airline staff would not present a problem. We chose to fly to the UK because the UK has a reciprocal health agreement with Australia so again if anything had gone wrong at least health care would be available free of charge. We also chose to fly via Singapore, as their health system is highly regarded.

Mum kept his fluids up during the flight and with a skybed to himself he was comfortable and managed to get some sleep. Thankfully Dad made it over without incident.

The final four amazing weeks

We then embarked upon an amazing four weeks of travelling through the UK and Europe with Dad. We were so lucky that he remained in excellent form throughout.

Before we’d left Australia Dad’s speech had been severely limited as was the use of his right side, he’d drag his leg and could hardly use his hand. We packed a wheelchair for our trip but incredibly found we didn’t need it. The main reason for this was Dexamethasone.

As soon as we could after the chemo and radiation, we’d weaned Dad off dexamethasone because of the dreadful side effects and my belief that Dex encourages CMV replication and therefore tumour growth. Dex can decrease swelling by 40% or more so when Dad was given Dex again it had a dramatic affect and his right side awoke and became useful again, he needed only the aid of a stick to walk and his speech also improved some what. (Dad had received the last of the lymphocyte infusions a few days before we’d flown out, perhaps this helped too).

There were a couple of occasions when Dad said he felt weird and Mum upped his Dex on these days. It was on these occasions that he expressed a wish to bring forward the DIGNITAS date. He was very concerned about having a seizure and finding himself in a condition where an assisted death was no longer possible.

At the end of the four glorious weeks in the UK and Europe, visiting fabulous cake shops, bakeries, castles and museums, we arrived in Switzerland where it suddenly became a lot more real.

Dignitas and the little blue house

We booked into our apartments in Basel, Switzerland (they were actually really great rooms, reasonably priced with a kitchen and balcony - Adagio Basel City). I don’t know what it must have been like for Dad at this time, horrible I imagine knowing these were literally his final days.

The DIGNITAS doctor arrived that evening and was just the loveliest woman, she put us all at ease. She talked to Dad and explained the process in detail. He was very concerned about not being able to drink the barbiturate so she gave him a tip on drinking it in such a way that the fluid touches only the middle part of the tongue rather than the sides where we recognise bitterness – or something to that effect. She told Dad she was pleased he had come when he had, she was worried that if he’d left it any later he may not have been mentally agile enough to clearly state (which thankfully he was able to do even in his jumbled words) that he understood what would happen and that it was his wish. She said she thought he had suffered enough and she was right. As a family member it was of great comfort to hear these words.

She visited again the following night to find out it Dad was still committed to the idea....