Assisted Dying Question #5: Do you give up?

How the heck did we get to this point where suffering, terminally ill, dying patients have to say they're suffering so much it's literally 'unbearable', or they don't qualify?

There are 6 questions patients must answer “Yes” to, if they want help from a doctor to access assisted dying at the end of their terminal illness.

A few are straighforward: are you 18 or older, are you suffering from a terminal illness, have you had an irreversible decline in physical capability?

One question is harder: can you get a doctor to declare that you are likely to die within the next 6 months?

And one question can, for some patients, (especially the most stoic or long-suffering ones), be downright fiendish: Can you attest that your suffering is unbearable?

If you answer No, then you don’t meet the criteria for assisted dying.

To refresh: assisted dying in New Zealand is when you have a terminal illness (most often a cancer that’s widely spread (metastasized) to your abdominal organs, or brain or bones, that sort of thing, and the doctor gives you the same medications that someone undergoing anaesthesia gets, just in much larger doses. Overdoses that typically ensure the person is unconscious and not breathing within 20-30 seconds, in my experience.

A person with a bad cancer, or other terminal illness, applies for assisted dying. If they have the wherewithal and support to see the long and time-consuming process through. And around half end up not getting it, for various reasons. Many apply too late, and simply can’t survive the 14-21 days the application process (in my experience) usually takes. You might think it’s unfair to make actively dying patients jump through hoops for weeks. As a doctor who works with them on a weekly basis, I’d agree.

More background: I’m an emergency doctor who works part-time as an assisted dying doctor, helping people suffering bad dying processes due to a terminal illness get medical help to avoid the last few days, weeks, or months of their fatal illness. Currently only about 1 in 100 New Zealanders gets assisted dying. Not every dying patient will need or want it, of course. Some people will die good and gentle deaths. But more than a few won’t. So its a good thing it’s there as an option for those facing a truly bad death.

But back to the story: I recently had a patient face Question 5 who thought it was a badly, even stupidly worded question. And I must agree.

I’ve had elderly, terminal cancer-afflicted patients wincing in agony every few minutes tell me, “No, this cancer must be bearable because if it were ‘unbearable’, I’d already be dead. Clearly I’m bearing it. I’ve been bearing it for 3 years!”

This assisted dying law was written by lawyers and politicians, and it shows.

“Intolerable” or “unbearable” is a mighty bar to hurdle over.

And remember, if you honestly answer “No”, you won’t qualify. Unbearable or intolerable are not just words, they are barriers. Fences you must climb over.

So once again, we’ve done it.

After all this talk for the last 30 years of my career, about “patient autonomy” being absolutely essential, we’ve done this. Other countries have none of this tragic paternalistic sophistry: they trust the patient dying of widely metastatic breast cancer to know if they’re suffering, and if they want help ending their suffering when the end is near. You don’t have to attest to someone politician’s wording: you simply have a conversation (or several) with your assisted dying doctor. You get help to end you prolonged suffering within days, not weeks.

But to placate that minority who (loudly, and well-fundedly) lobbied against assisted dying, the wording of the Act was changed from helping patients with a “Grievous and Irremediable Condition” — which put the power in the hands of the patients — to “The 6 Hurdles” that we use in New Zealand.

We say that patients don’t have to prove they’re worthy, or their suffering is enough, but then we make them attest that it’s ‘unbearable’ or ‘intolerable’. Knowing full well that a dying patient generally has been giving it their all, fighting the disease with all their might for months or years. Many have dealt with pain you and I can only imagine. Filled bath towels with secretions from their lung cancer, wondering if they would choke to death on it, night after night, for weeks, months, or even years. Fought it. Fought to stay alive in the face of a disease that was going to eventually kill them.

Was it unbearable? Is it unbearable now? Some would say yes, but many would say, “Well, I am bearing it the best I can.”

It can sound a bit pushy, petulant, even childish to some patients to tell a doctor “This is intolerable”. They’ve been tolerating surgeries and cycles of chemotherapy for months! They know they can tolerate more. They are loathe to have to admit what they might see as failure or weakness, especially with the language some lawyer has chosen.

U-n-b-e-a-r-a-b-l-e.

How have we gotten to this point that we’re even asking questions like this one? If they are quite literally riddled with metastatic cancer, can we not just trust patients to know for *themselves* whether they would like help in avoiding even more suffering?

But instead of merely saying, “Please Doc, I’m dying and it’s wretched, can you help me shave the last few weeks off it, before it gets even worse?” we make them go through weeks of checklists, repetitive questioning, and interview assessments to see whether they qualify, and make them say the magic words which allow them to get to the next step in the application process: “Yes, it is intolerable.” “Yes, it’s unbearable”.

Horrible, painful, unimaginable, and ‘a living nightmare’ won’t quite qualify. It must be intolerable or unbearable.

Or else you will have to bear it for longer. Tolerate it for an indefinite period of time until your death.

It makes me think that lawyers and politicians should stay a mile away from the inviolable relationship between a dying patient and their doctor.

Nowhere is it more obvious than in assisted dying for terminally ill patients, that in trying to “protect” imaginary patients we are harming actual patients.

At some point I’ll tell you, dear readers, about the assisted dying gag clause on doctors to ensure they don’t tell patients about all their medical treatment options including AD. Or the sadness of telling patients they must find their passports or original birth certificates from 83 years ago, and show them to me, physically and in person, in order to even start the process. Or their horror when they learn that they likely won’t qualify for an assisted death if they become confused due to their brain mets expanding, or suffer an infection that confuses them, or just if they take too many pain meds. There are just so many ways to not qualify. No wonder only 1 in 100 NZ deaths occurs with the assistance of assisted dying. It’s a project, not a simple process. And it’s occurring to the patients who can least tolerate delays, hindrances, and hurdles.

It’s rough. And it needs to be improved, smoothed out. A dying patient shouldn’t have to jump through hoops to get the care they want and need.

But from what I understand, the government had already decided (in advance of last month’s review) not to make substantive improvements to the legislation, but to push all substantive changes back, requiring a new member’s bill to be proposed for any of them to be considered, essentially starting the process over.

Too bad, because it could have been substantially improved in so many ways. But it seems they’ve decided not to.

Unfortunate.

Not ‘intolerable’ or ‘unbearable’ though.

Just unfortunate.

-Dr Gary Payinda

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