Today MPs will vote, for the first time in 15 years, on proposed legislation to legalise assisted dying, when the Terminally Ill Adults (End of Life) Bill, a private members’ bill introduced by Labour MP Kim Leadbeater, is brought to the Commons for a second reading. Here, two palliative care professionals, Baroness Ilora Finlay and Kate Leigh*, share their feelings on the proposed law, based on their experiences caring for the dying.
‘This will be a legally sanctioned way to give up on people’
Baroness Finlay is a Welsh doctor, professor of palliative medicine, and a Crossbench member of the House of Lords.
“When my mother was in a hospice, the consultant told us she didn’t have long to live. Her wish was to go home, expecting to die. The four years that followed were some of the richest of her life – proof that the ability to predict when someone might die is far more complicated than we realise.
That experience is one of many that has made me gravely concerned about today’s vote on assisted dying, which would allow adults with a prognosis of six months or less to live the legal right to lethal drugs, provided two independent doctors and a judge sign off. I see this as extremely dangerous.
As a consultant in palliative medicine and co-chair of the all-party parliamentary group on dying well, it is imperative we give people the best possible medical care at the end of their life – not rush through poor legislation that has incalculable consequences.
This bill is without proper safeguards, just vague qualifying conditions, including the definition of terminal illness, which is incredibly broad. That this is being voted on just three weeks after being introduced, in many cases by new ministers, is troubling. It seems a very inappropriate way to tackle such a complex issue; I worry that new MPs have been so inundated with information on this – along with all of their other work – that they’re drowning under emails and pressure.
Concerning, too, is that this bill is very similar to two prior ones that weren’t passed in England (in 1997 and 2015), and fails to have learnt from the horrors of countries where similar legislation has already been introduced. In Oregon, for instance, an individual gets a prescription for lethal drugs, then takes them home. The complication rate one year was at 11 per cent.
Nine people have woken up again after taking what should have been a fatal cocktail. Half of the people took between 53 minutes and 137 hours to die – that’s a long time. How would this work in Britain? Doctors would be expected to wait near the bedside until the person died, not seeing their other patients. This is not the quick, painless death that we are being sold.
It is also rife for terrifying misuse. Patients believe and trust what they’re told, and if a doctor suggests assisted suicide, there’s a dreadful subliminal message there: what lies ahead is so awful, that you’d be better off dead. You could have a serial killer in plain sight – someone who enjoyed watching people die.
If this bill passes, the judge won’t have to speak to the patient, and if approval is given, no one can appeal that decision, even though they may have important information. At several decision points, this bill steers people towards death. The NHS must provide good care, not dispense shortening life.
I’m horrified at the idea that there will be a legally sanctioned way to give up on people. We need to focus on fixing fragmented end-of-life care, which includes our hospice services lurching from one financial crisis to another. This proposed legislation is a dangerous distraction.”
‘Many who sign up for assisted dying don’t do it – having the choice can bring comfort’
Kate Leigh* is a Palliative care nurse.
“In the palliative care community, where I’ve been a nurse for 11 years, this bill has caused a real split. It’s really divisive – people don’t really like to talk about it, and there’s an immediate disapproval that makes it feel as though you couldn’t admit to being pro the legislation. Most of my colleagues are very much against it, but I remain on the fence.
I think part of the reason it’s so controversial among end-of-life care professionals is that our job is to alleviate suffering. To assist in someone’s death would almost confirm that you hadn’t done your job properly; we’re meant to be able to take away physical and emotional distress.
But the truth is that sometimes we can’t stop suffering as much as we want to. Sometimes it is not possible, and it feels very unfair that someone has to go through that. I’ve seen patients go to Dignitas before, and the feelings that that choice leaves are so complex – of course for the individual themselves, but also their care team, and their family.
Among colleagues in Australia, where assisted dying legislation was passed in some states last year, things have proven equally isolating. One friend left her position as a professor of palliative care to lead voluntary assisted dying in the state, and her stance means she has lost colleagues.
As well as this rift between healthcare professionals, the burnout rate among those working in assisted dying is high. Even if we agree with the idea that people should have choice and that it should be legal, the actual individual who is responsible for doing that in a professional capacity will carry a huge weight.
Since news of this bill was announced, I’ve been asking myself that question: could I administer life-ending drugs, or hand them to a patient to do so?
Many of my peers say there’s no way they’d even consider it. I’m not sure where I stand; it’s so tricky. It’s easier for the general public to say, yes, absolutely, people should be able to choose whether they live or not, but the reality of handing over that medication is very different.
During the time I’ve been a nurse, many more countries have adopted assisted dying legislation. But I think there are some issues with this bill, including the point at which the decision would have to be made. People choosing to die before they might actually want to, due to having to self-administer life-ending drugs before they become physically unable, would be a concern.
The significant part of all of this is giving people autonomy, which anyone nearing the end of their life deserves. As seen in other countries, many people who sign up for assisted dying end up not going through with it, but having the choice alone can bring comfort. That’s interesting – that in a time when people have no control, giving some can be helpful. Giving those patients relief is ultimately our goal.”
*Name has been changed
As told to Charlotte Lytton
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