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by Graham Adams / 18 May, 2018
Not wanting to be a burden is a valid reason for accessing assisted dying, writes Graham Adams, who is a cancer patient.
It was 8pm on a cold Friday night in a packed hospital emergency department. The triage nurse glared at me through the glass panels that shielded her from the throng of patients in the waiting room. “There are NO beds available!” she said. Her face was stony.
I was taken aback. It wasn’t my idea of fun to be standing shivering with a fever in front of a seriously overworked woman at North Shore Hospital, but my oncologist had told me to go there if my temperature spiked.
The nurse noticed my bewildered expression and her voice softened. “This is not the place for a cancer patient,” she said, as people behind me coughed and wheezed. “I’ll get you a mask to wear while you wait, and I’ll find you a room away from people just as soon as I can.”
Feverish, neutropenic chemotherapy patients are not the most welcome visitors at a busy emergency department. We’re not accident victims and we may or may not be an emergency. But until someone takes a blood sample, no one knows for sure. The level of neutrophils, which protect against infection, shift around in cancer patients and you can be neutropenic (ie deficient) and extremely vulnerable to life-threatening sepsis one week but not the next. Consequently, if a cancer patient’s temperature goes above 38°C, indicating the possibility of infection, they are instructed to present themselves at an emergency department as soon as possible.
The nurse was as good as her word. She commandeered a consulting room where I could lie down, blood was taken and a line put into my arm in case I needed IV antibiotics. Lying there for hours on my own waiting for a doctor to appear, I listened to a man somewhere along the corridor, groaning in pain, and an elderly woman, possibly a dementia patient, shouting, “Help me, doctor! Help me!”
It made me think about medical resources, dying, and the whole damn thing.
I figured it was okay for me to be on an interminable cycle of emergency department visits every time my temperature spiked while there was still hope my treatment would work – but would I want to be doing this repeatedly if I had only months, or less, to live?
Cancer patients eat up a huge amount of time and money being treated in their final months and weeks. At that point, wouldn’t allowing someone like me access to assisted dying be a win-win for me, the hospital and the health system? I wouldn’t have to suffer whatever pain and distress may be my fate in my final days – which is my ardent wish – and the money and resources saved could go towards treating patients who might regain a healthy life, rather than trying to preserve mine when I was doomed.
Saving precious health funding is not one of my primary concerns in wanting assisted dying to be available, but I would consider it a valuable side effect. It would give me the satisfaction of knowing that in sacrificing the last little bit of my life, for my own reasons, I would also be easing the burden on the health system just a little.
Hours later, a doctor appeared and apologised for the delay in getting to me. “Four ambulances arrived just after you were admitted,” she said. “We’ve been run off our feet.”
The idea of not wanting to be a burden to others – whether it’s those you love or even the unseen taxpayer – is rarely mentioned by supporters of assisted dying but often by opponents, and always as a bad thing.
Dr Stephen Child, a former chair of the New Zealand Medical Association and an opponent of assisted dying, told the New Zealand Herald in January that 48% of people requesting euthanasia in Oregon, where assisted dying is legal, list “burden to others” as their primary reason for doing so. He asked, “Does that mean they’re making an independent decision for a rational suicide or is there a degree of coercion in their decision-making?”
Well, it’s possible to find out easily enough – by investigating their motives, just as we do for live organ donors. Although it’s not common, donors can develop complications from the surgery to remove a kidney or a lobe of their liver that could cost them their lives. It’s a serious business.
Doctors recognise some would-be donors may have motives other than altruism – such as feeling obliged to help a family member or hoping to improve a damaged friendship. Consequently, counselling is offered to check what their true motives are. Similar checks can be done to assess that someone’s wish for an assisted death is free from coercion. David Seymour’s End of Life Choice Bill, currently being debated in the Justice select committee, details comprehensive provisions to make sure it is a free choice.
Investigations by the Canadian Supreme Court, the Royal Society of Canada, and the Victorian Inquiry into End of Life Choices concluded that such screening is effective in avoiding abuse in jurisdictions where assisted dying is legal.
It’s quite reasonable to not want to burden others with your suffering – not because loved ones are putting pressure on you but simply because you want to spare them the trauma and distress of watching you suffer when things have become hopeless.
In my own case, not wanting to be a burden has absolutely nothing to do with direct or indirect coercion, or even a fear of it. It’s simply motivated by concern for the psychological wellbeing of those who love and care for me. I know very well from my own sister’s death – tied to a hospital bed and screaming for hours as cancer overwhelmed her – just how traumatic a painful, distressing death can be, not only for the person in pain but everyone else involved.
It’s strange that opponents are often happy to accept that an essentially selfish motive – wanting to avoid pain – might be a valid reason for assisted dying, but are quick to dismiss an altruistic motive – not wanting to burden others – as unworthy.
Society recognises altruism as the most noble of human impulses, and the very essence of heroism, whether it’s a soldier or lifeguard or bystander putting their own life at risk to save someone. Nevertheless, it is unusual to hear anyone state publicly that not wanting to be a burden to others is a legitimate reason to access assisted dying.
Dr Lance O’Sullivan is one exception. RNZ reported in October last year that while “many people who chose euthanasia in overseas jurisdictions included in their motives that they felt they were a burden on their family, the hospital or even the taxpayer”, O’Sullivan “was not concerned” about this. RNZ reported him saying, “I don't think it should be dismissed as an inappropriate component to a decision.”
Dr Jack Havill, a former intensive care specialist and former president of the End-of-life Choice Society, agrees. He told North & South, “Feelings of being a burden to others are legitimate and common among many people who are dying” – and these feelings are “simply a part of their unbearable suffering”.
In short, if we accept that unbearable suffering is a good reason for assisted dying, we have to admit that fearing being a burden on others is an integral part of that suffering.
“Of course,” Havill adds, “just because a person feels they are a burden to others does not make them eligible for assisted dying under the End of Life Choice Bill. The patient has to be terminal or have irreversible, untreatable suffering and be in an advanced state of decline. But no one can say that the feeling of being a burden to others is not part of their suffering.”
Auckland Anglican Bishop Jim White also supports the notion that not wanting to be a burden is a valid reason. In his 2016 submission to the Health select committee, he wrote, “It is also noteworthy in the assisted dying debate that people may choose to die for the good of others (as adjudged by themselves). While we want to be certain that there has been no coercion in this decision, it can be a legitimate reason…”
It is entirely pertinent that a bishop should make that point; Christianity centres on the sacrifice of one man dying on a cross in order to save the rest of humanity from the burden of sin. Self-sacrifice lies at the very heart of our Christian heritage. As St John wrote in his gospel: “Greater love hath no man than this, that a man lay down his life for his friends.”
This was published in the May 2018 issue of North & South.
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