After going out on Friday, I went to sleep and stayed asleep until Sunday. I couldn’t be woken after the 12 hour mark past when I had eaten. Linda called the VIHA palliative help line to follow up on the request earlier in the week to get an IV to push fluids and nutrients.
By the time VIHA called later Sunday, I was awake. The VIHA district nurse said regarding care, that I had signed a DNR. I told them that while they asked (indeed, demanded), I had not. When entering VIHA care, the requested that I sign a DNR. When I was deemed eligible for palliative they again requested a DNR (‘do not resuscitate’). I choose not to, they didn't like it but said they accepted it. See, I want to live as long and as much as possible. The nurse said, "That's not standard." (the not wanting to die) I assumed at the time she meant those IN the program, those dying.
The attitude which we have been getting is that palliative is for those who are going to die to get on with it as cost effectively as possible. It is assumed that just because you have a terminal disease or are end stage, or you have organs shutting down that you should die as soon as possible and I think talking to me, the person dying, not the family unnerves them. Though I was praised by G, the nurse for having a 'good spirit' about death, when I made a joke about it.
Linda and I were and are both disappointed when any simple action which could be taken care of by a response team we were told to go to the GP. Our GP has a five week wait to get in. The response was, 'and...'
G. who called from VIHA said, “What is it exactly you want?”
“I want to live.” And repeated Linda’s request for an IV or a port for when an IV was needed. We had been told that the response team was for dying at home with the comforts AND medical care. An IV for pain medication they would consider, not for fluids.
G replied, “We do NOT replenish fluids or engage in life preserving actions.” The VIHA district nurse told me was the official policy. But said that I could appeal and ‘be considered on a case by case basis.’
Linda and I were stunned. To avoid clogging the ER, we were told the palliative program would help medically in the home. The last few times we’ve gone to ER it has been, ‘here’s some morphine, not much we can do, there is the door.’
The GP thinks that a shutting down of organs is of the top two ways I will die and to increase the chance of coming back, and IV would allow the toxins building up to be flushed. We were told that a nurse could be sent if I was incontinent to show Linda how to put down a pad. No, it was that the bladder and liver were shutting down and simply not producing anything, or once awake, all that came out was clear water, not yellow, no proteins.
Having visited the palliative centre, the rooms, which are mostly private have lounge chairs and sleeper chairs for family members but for the person dying, there is the same hospital bed and a telly, a mini one on an arm for shared rooms, as the only distraction.
‘I’ve told you where else you can go (the GP), and I have to take another call.’ And G hung up.
If there is some sort of care for those, non-cancer, who are having a failing central nervous system and autonomic system in Victoria, we would love to know about it. It is terrifying to go to sleep and not know how many days it might be until I wake up again. But also, the incentive, once awake, to DO, knowing that the medico’s, whose numbers and salaries eat up the $1,000,000 per bed per year fundraising and budget at the hospice along with TWO emergency response teams, and boasting 500 volunteers, it seems odd that a $300-400 telly is the amount of ‘comfort and quality of life’ beyond painkillers, which is offered or available. And in the community? So far, zero the hero. We were given a number and told if there was a medical issue or change to call it.
Linda has called it, and nothing that happens seems to be anything they can do something about. Last time, it was about organ failure and massive bleeding, I was told a ‘spiritual guide’ would talk to me in two hours. They called four days later, then wondered if they had offended me by something they said when I did not answer (I did not answer because I was in an unresponsive unconscious state).
When the district nurse says the official policy is to NOT try to preserve life with a simple IV even when the person wants it…it seems a case of cost over care medicine in extreme.
1 hour ago