Opinion Piece by Tracy Watkins, Editor of Sunday Star-Times.
A lottery of death: Why are so many people dying without first-world care?
Anyone who has had to help someone with terminal cancer navigate the health system will know that there are some things hospitals do brilliantly well, like treating the disease and prolonging life. They’re not so good at other things, like supporting someone once they walk out the door.
For a person who has just been told they are about to die, it’s as emotionally exhausting as it is physically demanding. There are questions like: “How will I die? How will I live until I die? Where can I get support?”
Even simple everyday problems, like: “Who will drive me to chemo if I can’t drive myself?”
From memory, all we got from the hospital when my mother was diagnosed was a brochure for the Cancer Society.
There are many things hospitals do really well, of course; like treating heart attacks or responding to sudden, life-threatening illnesses or accidents. Even death, in those circumstances.
But it’s not so simple for those confronting the reality of a long, messy, and often ugly and traumatising death.
Not in my own experience anyway - like so many stages through the hospital system with my terminally ill mother, no one could tell her family what we should do next as she reached what were clearly her final days.
There was a desperate conversation with a ward doctor who insisted she couldn’t go home, and she couldn’t take up a hospital bed any longer either after she was admitted for the umpteenth time as her condition steadily worsened.
The message was the same from the local hospice. There were no beds.
The huge misconception that most New Zealanders have about palliative care is that it's first-world standard, and that there will be a hospice bed there for us if we need it. And it’s true that end-of-life care is world-class for those who can access the scattering of hospice beds in New Zealand. Hospices do their job incredibly well.
But there are not enough of them.
So for everyone else, dying with a terminal illness in New Zealand can be a chaotic, confusing and bewildering time of not knowing where to turn for help. It can also be the opposite of death with dignity - a painful, hideous death, thanks to the paucity of palliative care specialists and the patchy level of knowledge among the GPs and others who fill the gaps.
Nikki Macdonald’s sobering investigation into the shocking state of hospice funding in New Zealand should be a wake-up call to all of us.
Painfully, it seems to be that you would be better off choosing euthanasia, rather than roll the dice on accessing professional end of life care in a hospice.
As Nikki’s article points out, euthanasia is fully funded, whereas hospices are only partially funded by the Government. They survive, barely, with donations, and by flogging off secondhand clothes and furniture.
Euthanasia patients can also get a specialist flown to them for free. No such funding is available to fly a palliative care specialist to a terminally ill cancer patient; they are more likely to be attended to by a GP with minimal training.
The Ministry of Health has six full-time workers dedicated to euthanasia; none dedicated to palliative care.
The fear is that it’s not a free choice at all between euthanasia and palliative care when the odds are so heavily stacked against dying patients accessing the sort of palliative care they deserve.
As one mum told Nikki about the lack of support to manage a dying baby’s pain at home: “We felt very let down”.
Actually, we’ve all been let down.
This was my fear in 2020 when the euthanasia laws were being debated; that we hadn’t earned the right to euthanasia so long as we continued to do palliative care on the cheap.
Clearly nothing has changed since then. If anything, the situation has worsened.
Shame on us. We need to do better.
The Defender Editor’s Comment: Thank you Tracy for giving voice to the very real concerns which led to 1/3 of Kiwis voting against the End of Life Choice Act in the form it was presented in. Your thoughts echo ours strongly – better supports are needed, and fast. We are advocating for improvements to the law to make it less dangerous, but more importantly, believe there needs to be a support system or network develop throughout New Zealand, that can offer support and also connect to existing supports and funding as a first step – but also practical help, friendship, counsel. It sadly is a blank canvas at this point – but there is a significant "gap" here that needs filling as lives depend on it.
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