SARAH McCULLOCH
Sarah McCulloch worked as a locum occupational therapist for ten years, working across a range of mental health, community, and hospital settings in NHS trusts across London and Essex. She is currently the manager of a community mental health team at an NHS trust in North London.
Many opponents of assisted dying focus, quite understandably, on the danger of slippery slopes. I’m here to talk about the danger posed by Kim Leadbetter’s Bill if we never change a single word.
We don’t have to ask how NHS staff will manage assisted suicide, because we know. Those of us who work in the Health Service, at least. MPs deserve – indeed, have a duty – to know too.
So, first, the story I tell every time this subject comes up. In 2014, I was a student occupational therapist on a palliative oncology ward. Every one of my patients were dead within three months of my placement ending; they would all have been eligible for assisted suicide under this bill.
When you are that ill, one thing on the checklist is getting asked if you want to be resuscitated when you have cardiac arrest.
Having to resuscitate someone is a difficult and unpleasant task and you will very often wish you had died if you survive (the crash teams will often break multiple bones and the amount of time you spent without oxygen can cause all kinds of disability and additional complications to your existing condition).
We have therefore Do Not Resuscitate (DNR) forms people can sign to say they would like to be left to die in peace. It’s a conversation we have with every patient and it is a life-and-death conversation that you should be sensitive, informative, and neutral about.
Sound familiar? If you want to know how the NHS will treat assisted dying, look no further than how it actually handles DNRs.
As a student, I watched a new patient asked whether he wanted a DNR order. He declined, as he was Catholic. At the MDT later on that week, the staff nurse, who had never met him, asked why he didn’t have a DNR order in his file, and said she would go speak to him.
She thought it was a paperwork error. Why wouldn’t you have a DNR order in his position? There must have been some kind of mistake.
On that same placement, I saw a DNR order in the notes of a patient who had advanced dementia. The reason given was “advanced dementia”; the doctor had just put dashes in the ‘communication with patient’ and ‘communication with relatives’ boxes, and then signed it.
You’re supposed to confirm you have spoken to both. He had not – but only the ward staff ever knew he’d put on the black cap.
When you create processes like this, for which the safeguard is that decision has to be recorded or a KPI goes down a percentage point, and that decision is one that many of the people who actually have to make it are too busy dying to contemplate, clinical staff will step in to make sure the paperwork gets done.
I observed to a colleague the inevitable nudge of asking every patient if they’d like to die by DNR. She justified it by saying that it was emotionally hard on the crash teams to try to resuscitate people with such a low chance of survival.
My life is not a numbers game. Nobody’s is – to them. But bureaucracy weighs the odds, every time.
None of the NHS staff involved in these stories is an angel of death. They aren’t getting money or a thrill from these decisions. They care about their patients and believe on compassionate grounds that their quality of life would be improved if it were just shortened.
But the fact is if you are dependent on clinical staff who think dying be the best thing for you, a thousand micro-decisions will be made to create an environment where if you want to live, you (or your loved ones) implicitly have to justify why you should – not once, but often over and over again, if you are ever given the choice at all. And people are notoriously bad at disputing authority.
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If this Bill becomes law, that staff nurse – who assumed a missing DNR order was a paperwork error, not a patient decision – will start asking anyone, everyone, who expresses despair or frustration and their situation if they would like assisted dying.
You’re dying anyway, right? Wouldn’t you like it to be ‘comfortable’, and on your own terms? If you say yes, she’ll bring in the doctor after rounds to witness your first declaration.
Then, after a couple of weeks of observations, tests, and morphine, she’ll arrange for the junior doctor on the ward downstairs to come in and sign off everyone’s second assisted suicide declaration – because you won’t be the only person doing this, in palliative care, and it’s more efficient – and witness them again.
Those declarations will then be handed over to the same trust contract solicitor who handles the court of protection applications. Here’s how that’ll go.
You’ll be told this is “getting authorisation for the drugs because they’re controlled”. The judge will talk to the solicitor and sign them all off, because the paperwork is in order, there are only 18 High Court judges in the Family Division to handle thousands of applications, and it’s surely perfectly reasonable for someone with a terminal illness to want to die without suffering.
(Leadbetter professes to believe that a 75-year-old with oesophageal cancer, who has never used the internet and can barely breathe, will be made available via video link to be examined by the busy judge. She won’t.)
You won’t have to pay for any of this; it’ll be covered by the End of Life register’s continuing healthcare budget. If any of your relatives want to challenge the court application, on the other hand, they’ll have to find and pay their own lawyers.
In the meantime, your care plan will be halted; there’s no point starting negotiations with the local authority if your discharge destination is unknown and you’re going to be dead in a month. (You won’t be, because there’ll be a delay at every stage whilst they try and get hold of the next professional; but you could be, and your social worker is probably off sick anyway.)
Your medication won’t be titrated, and the possibility that you might live longer than six months – because up to a third of people given six months to live beat that prognosis – won’t be planned for. You’ll be given treatment available to hand, but anything more complex, that has to be booked elsewhere and transport arranged, will be held off pending “the outcome of your application”.
You’ll have a DNR order by default – because you want to die – so if you have a heart attack before you can change your mind, that’s unfortunate. The discharge coordinator will start asking whether your death date has been set so they can report it to the daily bed management meeting.
You will stay in hospital and the rehab team will deprioritise you for mobilisation. You’ll likely want to die at home but without a care package in place, you either won’t be safe to discharge (ironically) or they’ll have to arrange your death date around the availability of the hospice bed that someone else has also been waiting to die in.
(At this point, you will make a frustrated joke that the NHS has queues to die, because you’ll be in one.)
Nothing in Leadbetter’s Bill protects against the NHS downgrading your care whilst the ‘safeguards’ on state-assisted suicide run their course. The likelihood that you will just die due to withholding of care before the final affirmative act will rise – and all of these deaths will be recorded as natural.
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Meanwhile, the nurses will start asking you about your will arrangements and negotiate with your relatives about when they’re available to come say goodbye (outside of protected time, obviously).
This will all happen impersonally and seemingly inevitably, but all the staff will be super kind and helpful about keeping you updated on the abstract processes rolling along out there somewhere, and you will be grateful to them for everything they do.
After you’ve told all your loved ones that you’ve requested to kill yourself, it’s going to feel like a Rubicon has been crossed; you’ll lie back and passively accept the situation, as people you befriended on the ward or at the day hospital start to disappear as their own death dates approach.
You’ve given informed consent to start the process but you will have no control over how or when it is completed. Lack of staff and resources, you know how it is.
Until the day comes when the nice staff nurse comes in with the doctor, who hands you a syringe driver and a button to push.
They will tell you that you can still change your mind, if you want to. If not, then the doctor is obliged to remain in the area until you are dead – so if you’re approaching shift’s end and struggling to do the deed, they might offer to help you push that button.
You may have misgivings. But you’ll have spent a solid month, or longer, experiencing decreasing quality of life, the withholding of treatment, and having your imminent death normalised by the cheerful staff who are almost all your human contact. No plans have been made for your ongoing care.
You’re going to die anyway. You don’t want to be a burden. Someone needs your bed. More than you.
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We don’t have to ask how NHS staff will manage assisted suicide, because we know. We let them do it with DNR orders, and court applications to withdraw life-sustaining treatment from brain-damaged toddlers against the wishes of their parents. We did it with the Liverpool Care Pathway, until the systematic killing of the elderly became a little too obvious and it was cancelled in 2013 after Liverpool Community Health killed the relative of an MP.
LCH has now been shut down. In 2012, it emerged that the commissioners had a KPI for how many people were denied food and water, and paid hospitals to meet it.
You think the NHS isn’t going to do that with assisted suicide? You think we won’t package it up as end-of-life care and patient choice while counting the money saved by your convenient demise? Sign the form, kill yourself, protect the NHS.
Over time, as clinical staff qualify into the new regime, the moral objectionability of asking the terminally ill if they would like to kill themselves will weaken. Eventually, we’ll make it part of the standard protocol for end-of-life care, just like DNR orders.
Patients will have the right to consider their options. They’ll also have the right to patient confidentiality; if they withhold consent to inform their relatives then, in a minority of cases, the first thing you will know about your loved one’s choice is when you’re told they’re dead.
There will be at least one horrifying story of an eighteen-year-old with a learning disability diagnosed with a painful remitting and relapsing condition that becomes terminal who will choose assisted suicide without informing their parents. The parents will sue – and they will lose, because all the procedures will have been followed correctly within the law.
Meanwhile staff who have a moral or clinical objection to assisted suicide will simply not work in palliative care, in the same way professionals who object to abortion do not work in reproductive health. Eventually, the entire field will be staffed by people who are happy to kill you. This will change the vibe considerably.
Assisted suicide is not an individual matter between you and the GP with whom you’ve socialised at the village fête for thirty years. Something like 200,000 people a year will be technically eligible for it.
In the hands of a centralised, state-funded public healthcare system, this is an assembly line of people to be terminated.
Policy choices will be made. Targets will be set. Incentives will be offered. Once the staff who object have moved to other departments, only the opposition of people demonised as religious fanatics will put any obstacles in the way at all.
NHS staff sign away people’s lives all the time, because we are human and we bring our values to work. Quite a lot of them think you should die, and soon. Don’t make it easier.
This article (Sarah McCulloch: We already know how the NHS will misuse assisted suicide. Trust me, I work for it.) was created and published by Conservative Home and is republished here under “Fair Use” with attribution to the author Sarah McCulloch