You (the RN) might hear, “It’s not being dead, it is the dying I fear”. You might receive questions about timelines, “How long do I have?” Or preferences, “I don’t want to die in pain.” Or limits, “I have had enough. I am tired. No more tests. I want to die.”I cannot read from Kath Murray aloud without the quiver of tears affecting my voice, or the slow exhale from Linda. This is where we have been for months. Living isn’t hard; it is like when Shackleton used a carpenter’s plane for three days and nights to cut steps to climb over an iceberg in order to survive. Impossible, yes, but then so is everything that if oft done to survive. Like Shackleton, sometimes it seems I won't, and will fall, and that's out of my control; yet it sometimes manages to keep going, this body (also out of my control when that low). And sometimes I seem to progress, but that is what I do, all I do, every day now: survive. And when I have time to look up, or an hour out of a week of staying alive, I write and send postcards.
“We need to stop. Put our agenda on hold. Get our issues out of the way. Quit worrying about the multitude of other things going on. Take a deep breath. Imagine clearing your brain of all the business and fussing.”In the rushing, pushing me awake, ‘just to say what I have to say’, there is no listening, only the flexing of ego. The GP disrespected his profession, his loved ones (those who have and will make that journey), and himself.
Dying was never meant to have timetables. Victoria Palliative Society, started as a cancer hospice, stated it became opened to “all” over 20 years ago, yet:
“70% of our registered patients have cancer. Other diagnoses include ALS, circulatory, neurological, respiratory and other chronic and progressive diseases.”Cancer patients, ALS patients keep sane by realizing that while a stage four diagnosis or ‘five months to live’ doesn’t mean it HAS TO BE five months, it is also good to live each day, as best as you can. It used to be that once you were in the hospice society, you were registered for six years. That was changed last month to limit it to a year..or so. Still, for those who are alive after six months or nine, and yet still medically present as decling or show to be ‘a few months’ from dying, why are they not readmitted? Why were there not holter heart tests, blood tests for organ function done before this decision? Why simply state that by being alive they are 'complex', discard them and walk away? Or has this society determined, like forcing caesarians on women who are a day or week after expected delivery date, to demand force on this last aspect of life? Force or neglect the threat for those who still wish another day, and another. Is the ‘focus on care instead of cure’ mean that one must rush into death? To stop transfusions? Or taking insulin?
Is not life, however reduced from the daily hustle bustle, precious? Are those in that medical waiting place, listening as the body winds down, the song of the music box getting slower and slower not to be protected as the vulnerable individuals they remain? When a GP, a doctor aiding care of those palliative in that city, acts in a way which even APPEARS to act as bully or be punitive to someone in late stage degenerative disease, they represent the collective voice of the Province. Stating as leaving, ‘If you don’t like it, then find another GP’ gives that appearance. If he is the opposite of compassion, or an advocate, then who is there to advocate for the ‘complex?’ Or am I, to a cancer doctor, in a program built for end of life individuals with cancer, not the ‘right’ type of people? Are cancer patients who are still alive months later turfed as well?
I had assumed that neither were, it seemed the humane and compassionate model that the society was to be based on. And if we don’t ask these questions, who will? Who would want to make survival for the dying or those helping them more difficult? Is it not sensible, when finding those in authority who do make it more difficult, to find out WHY?
The medico’s punish me because my birthday approaches and I haven’t died.