Content warning: graphic discussions of dying symptoms
I wrote last week about the best kinds of dying trajectories, and about the difference quality palliative care makes to those whose deaths are inevitable and symptomatic. In many ways, palliative care nurses are midwives of death – helping a natural event progress with comfort, tranquillity, and a minimum of distress. Unfortunately, for a minority of people on dying trajectories, even the best care can’t relieve their symptoms.
When, as a student nurse, I first cared for a patient whose symptoms were intractable, I was distressed by but understood the pain – he had tumours in his bones, and was on massive doses of morphine (over a gram per hour, with breakthrough dosing of 300mg up to three times/hour), which helped. It was the other end-stage symptoms that he, and other patients I’ve cared for since, which most affected me: terminal dyspnea, where every single breath is fought for; intractable nausea, that persists, despite the best anti-nausea drugs, even through sleep; the gradual and relentless inability to perform activities of daily living, and the distress of this ever-growing helplessness; and losing not just the capacity to swallow, to eat, but even to manage one’s own saliva.
I have cared for many people who died gently, who drifted into sleep and never woke. They’re not the deaths I remember, though. Those memories are of the patients who struggled for each breath, faces etched with fatigue.
Of the woman who finally escaped the nausea that had relentlessly accompanied her for months, but died retching.
Of a man I assisted another nurse to turn, his deep, low moans reminding us every moment of the pain from tissues so filled with fluid that it leaked out of his skin to soak his linen every few hours.
Of the young woman with end-stage HIV, whose doctors were in denial about her dying and sent her to die in ICU, instead of on the ward surrounded by nurses who knew her, and family who loved her
Of my dialysis-dependent gentleman who was “sick of being sick” but treated for depression he didn’t have, instead of being allowed to die.
Of the patient not quite dead of motor neurone disease, whose partner literally begged me on their knees to bring her merciful death. I had to say no, their form blurred by tears that filled my eyes then, and now.
Thinking of these men and women always brings tears to my eyes – not only because of what they experienced before they died, but because we failed them. Our role is to care for all our patients, and to comfort those we cannot cure. To relieve suffering, not prolong it.
I have witnessed other awful deaths, but we were working to save those patients – replacing fluid, infusing new blood, restarting their hearts, combating infection, reversing life-threatening biochemical imbalances. For my patients whose dying is inexorable, inevitable, and wanted, delay is not only heart-breaking, it’s cruel.
Palliative care has transformed the lives of the dying, but there are some that even the most expert palliative care cannot help. From overseas figures, this amounts to somewhere between 0.5% and 2% of those who are dying – their symptoms will be resistant to our best interventions, and they will have suffering beyond pain, beyond our capacity to ameliorate. For this small proportion of our population, their only option now is premature death by suicide (while they have capacity), or an agonizing death witnessed by helpless, often guilt-ridden loved ones whose trauma persists long after the dying.
For these few we need another option. A carefully considered, strongly contained, rigorously monitored, compassionate alternative that allows those who are dying a voice, and a choice. We need a legalized process of assessment that the person applying for assistance is competent, is making an unpressured and consistent choice, is dying, and is or will experience suffering.
Victoria’s government will be introducing a voluntary assisted dying bill to parliament in the second half of this year. If it passes, it will be the most rigorous legislation in the world, and will be informed by the experiences and data from those North American states and European countries who have legalized these acts for up to two decades. It will be an option for adults resident in Victoria who have a finite (to be determined) time to live, who are competent at the time they make repeated, consistent requests for assistance to die, and who are experiencing symptoms of their condition that are unbearable.
I support this bill because I have seen too many people die agonizing deaths. We absolutely need to do this with attention to detail and awareness of the potential for misuse, which is why proposed legislation is clear, strong, and well regulated.
Even before I became a nurse I was in support of people who were suffering being able to choose when they had had enough; it seemed then, as it does now, that they were the ones with most at stake, and should therefore have most say. It’s past time to let dying Victorians have a voice and a choice regarding the ends of their lives.