Dying from soft-tissue cancer, Marie Jansen's husband of 52 years feared a painful, drawn-out death in palliative care. Doctors reassured him his fears were unfounded. They were wrong.
John was my husband and best friend. We’d been married for 52 years when, in late 2017, he began to complain of a niggling pain in his ribs.
We were distraught to find it was spindle-cell sarcoma; a soft-tissue cancer, located in John’s spine and therefore inoperable. Radiotherapy - our only option - had less than a 30 per cent success rate.
“He did all of the things he should have done to make sure he had an ending that he could face, he had a statement of choice, a formal document written out explaining exactly what would give him comfort at the end of his life and it explained that being the very worst thing he could imagine would be living like a prisoner in a hospital bed needlessly suffering until the end,” Marie told the Sunday Mail newspaper.
Marie says palliative care doctors and nurse did their best but "in John’s case it was not ever going to work for him".
"He was led to believe he would get the death that he wanted, one that would give him comfort at the end of his life, but it was not possible.
"I remembered again the words he’d written in his Statement of Choices: 'What would give me comfort when nearing death? Knowing in advance that the end of my life will be pain-free, peaceful, and quick'.”
"John was sold an unfulfilled promise. He was told Palliative Care would help him to die peacefully and pain free, as he wished. But it did anything but. Rationed pain medication and a time limit of 35 days - John died on the 36th day - led me to question if it was anything but a shrewd business model?
"John was failed. Please allow others in his position a choice. It is time for Queensland to have a Voluntary Assisted Dying law of our own."
Marie agreed to share her personal diary entries to shine a light on what the end of her best friend’s life was like and why she promised him as he died that she would do anything she could to make sure others had a choice he didn’t.
Below are extracts from Marie's diary:
Monday 14 May
Well, the bottom dropped further out of our world. The oncologist showed us the CT scan results which confirmed that despite 8 weeks of radiotherapy, the tumour had actually grown since first diagnosed 5 months ago, and had entered John’s spine. His body can stand no
more radiation. The oncologist offered chemotherapy as a last resort, saying that it may possibly slow the onslaught, but that the tumour would develop tolerance to the drugs and continue to destroy his spine. He will start to have trouble walking, losing control of bladder and bowel. John agreed to a weekly schedule of chemo.
Thursday 17 May
John had his first dose of Doxorubicin (nicknamed ‘The Red Devil’ because of its extreme toxicity).
Sunday 20 May
Early this evening John suffered an extreme adverse reaction to the chemo - in great pain, sweating and shaking. The ambulance took him to our nearest emergency department, and at 5am he was admitted to the hospital next door.
Monday 21 May
I came back to John’s ward to find him in tears. A visit from the oncologist had been followed by one from a pain relief specialist. The chemo will be discontinued and a palliative care regime started. He was told that the tumour was already pressing on his spinal cord;
basically he may not have much longer. Both of us clung together sobbing. I’m breaking my heart writing this.
Tuesday 22 May
The pain relief specialist came to the ward and signed John’s prepared Statement of Choices, which asked, among other things, the health choices John would find unacceptable, situations he’d consider may be worse than death and outcomes he would find unacceptable. John had written:
“I would not want to be forced to linger as a prisoner in a hospice or hospital bed, needlessly suffering until the inevitable end. I have seen family members in this situation and would NOT want this for me. What would give me comfort when nearing death? Knowing in advance that the end of my life will be pain-free, peaceful, and quick.”
Wednesday 23 May
John returned home from hospital with a second dose of Duxorubicin.
Friday 25 May
An unexpected call from the palliative care team, advising that a nurse would visit us at home this morning. The nurse carefully noted, and took a copy of, John’s Statement of Choices. She gave end-of-life assurances that set many of our fears to rest, so much so that John is now considering palliative care as a possibility.
Wednesday 30 May
At 1am John swallowed his entire daily allocation of pain medication. When the Palliative Care nurse phoned after breakfast to check on John and learned about the tablets, she arranged urgent admission to the nearest palliative care facility.
My sister and I drove him there. On the way the drugs wore off and his trip became a screaming nightmare. John told me later that he’d expected taking the drugs would see him ‘off’ - and he didn’t mean ‘off’ to hospital.
Friday 1 June
Found John very distressed - he lost control of his bowel, fouled the bathroom and tried to clean it up himself. He wanted me to ‘bring in a gun’. I’m broken-hearted again.
Sunday 3 June
Today John told me the lower half of his feet and his toes are numb. Time is closing in. Constant changing of John’s pain medication. We’re being told there’s the possibility of John coming home ‘soon’. It’s a new worry for me - how will I manage when he can’t walk?
Tuesday 5 June
I noticed the specialist in the cafeteria downstairs; I asked how long was it possible for John to remain in hospital? He said “35 days with no questions asked”, and then unless he’s still having active pain management procedures it would be home or a nursing home.
Wednesday 6 June
Tonight at 10pm, I got a call from John screaming in pain and crying. He’s finding it very difficult to move. Getting out of bed is a nightmare.
Monday 11 June
John’s walking is really bad now, even with the wheelie-walker - shaky and stumbling. He can feel the paralysis creeping higher.
Thursday 14 June
Today John completely lost the use of his legs. He’s to have a catheter to minimise movement in and out of bed. He’s desperate - he keeps talking about finding a way to end it all.
Saturday 16 June
John has lost control of his bowels. and has pressure sores which have now ‘broken through’. Despite (or because of) the fact that his pain management seems to be continually changed, he is rarely pain-free.
Tuesday 19 June
A ‘family conference’ at the bedside. Apparently doctors are ‘trying to strike a balance between keeping John as pain-free as possible and as alert as possible’. What about the ‘choices and outcomes’ assurances that influenced John’s decision to accept palliative care?
Wednesday 20 June
I arrived at the hospice in time to witness John being ‘cleaned up’. My poor husband was absolutely mortified. He’s asked me to bring in aftershave to spray around the ward to try to mask the smell.
Saturday 23 June
A new doctor showed up and astounded me by suggesting another course of radiotherapy for John, requiring ambulance transport to another hospital. This, when the slightest movement is causing John excruciating pain - really?
Monday 25 June
I sent an impassioned email to our Premier, as voluntary assisted dying is again being brought to her notice. I asked her to come to the hospice to talk to John and me, to hear first-hand what it’s like to be dying in a palliative care ward.
Thursday 28 June
John was told he could ‘get out into the fresh air in a wheelchair’. What a procedure. He was virtually craned into a wheeled recliner bed. The operation took two nurses, breakthrough shots, incredible equipment and lots of time. He didn’t see much as the chair was too big and heavy to manage outside, and he dozed most of the time anyway.
Saturday 30 June (day 31)
One of the elderly ladies visiting her husband was very distressed. She’d been told that her husband had ‘stabilised’ and that ‘his 5 weeks were up’ and that unless he was classed as ‘acute’ he couldn’t stay. She had to bring him home or find a nursing home.
John’s been here now for 31 days: how can I nurse him at home if he has to go in 4 days’ time?
Sunday 1st July (day 32)
Just when I thought things couldn’t get worse. John had a dreadful night - his night light had been turned off and his door closed. In the dark he couldn’t find the call bell to ask for more pain relief, and had mistaken the catheter tube for the bell cable, pulling it out. He had
called out, with no response; had tried to get out of his soaking wet bed, and in desperate attempts to attract attention had tossed items at the closed door. He desperately wants ‘out’! He’s now been a bedridden paraplegic for more than 2 weeks. I am recalling the words he wrote in his Statement of Choices:
“I would not want to be forced to linger as a prisoner in a hospice or hospital bed, needlessly suffering until the inevitable end.”
Monday 2 July (day 33)
I had an early morning call from one of John’s nurses to say he’d had a significant deterioration overnight; his doctor said that he was nearing the end. I stayed overnight to be with him as I’d promised, sleeping in the enormous wheelchair in his room. He was turned and cleaned up several times, each time causing moaning. At one stage he woke up and asked if he was dead yet. The nurse told him he was on his way, to which he muttered ‘Thank heavens for that!’
Tuesday 3 July (day 34)
John was unconscious all day, I went home to get a change of clothes and came back to stay overnight with him again.
Wednesday 4 July (day 35)
A very bad night. John woke at 1am moaning in pain, tossing his head and grimacing. The nurse said he was OK but it was obvious to me that he wasn’t; she finally gave him more pain relief. But he still had his eyes open and looked distressed.
A waiting game, watching John all afternoon and through the evening.
Thursday 5 July (day 36)
From just after midnight John began panting; this went on unchanged until about 6am when it became more irregular, then stopped. He died in my arms at 6.10am. The last day of nearly 53 years’ marriage.