A fellow health worker sent us this guest contribution about the Assisted Dying Bill. As health workers and concerned working class people we find the debate about the Bill very important. As Vital Signs group we think the article below touches upon many significant issues, such as the tragic division between primary and secondary care, but we find that a more fundamental criticism of the Bill and its context is needed. We will publish a wider critique in the coming weeks. Please feel free to get involved in the discussion – we will announce a series of local public discussion events soonish, watch this space.
The recent play about the life and work of Aneurin Bevan is framed by the tragic and painful death of his father, without access to dignified palliative care, compared with Nye himself, dying peacefully in an NHS bed, with his best friend and wife by his side. The NHS, according to Nye, exists not just to care for people throughout their life, but to provide people a dignified and comfortable end.
Sadly, the NHS isn’t always able to meet this need. Often the care that would make someone’s last days comfortable isn’t available in time and, even when the best palliative care is available, the drugs don’t work for everyone.
The bill about to be discussed in parliament would make assisted dying available only to people with a prognosis of 6 months, who have a consistent wish to die, confirmed by two doctors and a judge. This process takes at least 28 days, except in cases where the prognosis is shorter than this. This is one of the most restrictive assistive dying laws around. It would not make assisted dying available to people with long term impairments, nor to people with progressive diseases that can expect to live more than six months.
Most of the discussion on the left concerns assisted dying broadly, which is an essential discussion. However, little discussion has been had about this legislation specifically. What does a class analysis of this legalisation make us consider?
Communication across classes
We should consider the power dynamics in the patient, doctor relationship and whether the particularities of this bill do enough to mitigate the risks in this dynamic. Consultants are upper middle class workers, with very different lives to most of their patients. This makes communication difficult (as illustrated so well in the previous issue of Vital Signs). This is even more of a problem when the patient is from a racialised or other marginalised community. Imagine a doctor says to you “You can consider assisted dying”. Even said as sensitively and neutrally as this, if a doctor is saying it, wouldn’t you hear that your next 6 months might not be bearable? Patients might feel that applying for assisted dying is the recommended option, even if their doctor only means to give them all the facts.
The restrictions in this UK bill are designed to mitigate this risk. Two doctors must countersign the patient’s declaration that they have a consistent wish to die and both of these must have independently examined the patient and agree that they are terminally ill and have a consistent wish to die. If there is any doubt in the patient’s capacity to make this decision they must be assessed by a specialist. Once a declaration is made an application can be made to a high court judge who will confirm that the proper process has been followed. This judge can question the patient if they feel it is appropriate.
This process makes accessing assisted dying feel like a big deal, and a faff. Things that are a big deal and a faff are less likely to be thought of as a recommended option by patients. Say your doctor says to you “You can consider assisted dying” and you think “shit, ok, they’re saying I’m better off calling it quits asap” and then they’re like “ok we’ll have to get you to sign this declaration, and then another doctor, and then we’ll book in a court appearance with a judge”, you’re likely to then think “woah, that’s a lot”. To be motivated to go through all that you would have to truly believe that this is better than the palliative care on offer. It’s thus unlikely that anyone would make this decision lightly, or because of misinterpreting the intensity of a doctor’s recommendation.
It is, however, still to be determined what the experience of the process of applying for assisted dying is like. What looks like extended and expensive faff, including a wait of at least 28 days, might be streamlined for the comfort of the patients applying. It’s not required that the patients themselves appear in court, and the judge will largely be confirming that the process has been followed, rather than that the wishes of the dying are being met.
To add to this, the opinion of two doctors might not mean two separate opinions. The opinion of the second doctor is likely to be influenced not just by the wishes of the patient, but also the opinion of the first doctor. It’s bad etiquette to disagree with a colleague, so only practiced when it will benefit the disagreeing doctor, usually because the first doctor was so clearly wrong that the second might be implicated in some incident. The stakes, for the second doctor, will not always be that high, not least because the patient won’t live to complain about mis-prognosis.
Doctors and the medical model
The power dynamics between patient and doctor could complicate the authenticity of this process in other ways. The medical model positions the doctor, the gatekeeper of medical intervention, as the most powerful person in the system of support for a patient. So, doctor’s are generally invested in a medical model of illness where bodies are machine-like and can be fixed, or otherwise, with medical interventions. When someone can’t be made pain free with medicine a doctor may believe they can’t be made pain free at all, and thus support their wish to die based on their belief that they’ll otherwise be in pain.
However, this might not be the case. Pain is more mysterious and multifaceted than a machine experiencing a mechanical problem. Stress has a huge impact on our experience of pain. If we feel relaxed and in control of our bodies and our environment, we feel a lot less pain. Someone who has the support to die at home is likely to have a much more pleasant end than someone in hospital. So, if the decision to apply for assisted dying is made while the patient is in hospital, they might not have fully considered how good home could feel. If you’re a doctor who’s been working in a hospital for years and believe wholly in the value of hospital based medical care you might find it hard to imagine what care could feel like at home, or how much better a patient might feel in a calmer, more comfortable environment.
Money
A class analysis of this bill must consider money. What is the impact of this bill on the already stretched NHS. Of course most people’s big concern is that even one person might be persuaded to die as a cost saving measure! Obviously this is the opposite of what any socialist could want. Thankfully this is not what will happen with this bill. Ths cost of providing this new process is so high that Wes Streeting has said he will vote against it because he fears the cuts that will have to be made in other areas in order to provide it.
That it’ll cost money to provide is a pretty thin concern. I’m sure most of us would agree there’s a few CEOs that could be cut, and I reckon the cost of gatekeeping gender affirmative care for trans people could be cut to save a fair portion. Providing healthcare costs money but it’s something we should invest in because it’s right and good and come the fuck on Wes. If you believe assisted dying is a legitimate treatment in some cases, and you believe healthcare should be free at the point of need, then you have to believe the NHS should fund it.
Though the NHS does a good job of providing care free at the point of need, the same cannot be said for social care. To be eligible for free care at home or in a care home your needs have to be primarily medical, not social. Social care is means tested, so you might have to pay for it. Whether your needs are primarily health or social needs is decided by medical professionals and the local authority through the CHC scheme. If you have free care on the basis of a primarily health care need and your needs change, you can be reassessed as having primarily a social need. This reassessment happens after the first 3 months and then every 12 months after that. So, if you live too long or get a bit too much better you might have to start paying.
If you’re eligible to apply for assisted dying with a six month prognosis, but would be reassessed for means tested social care after three months, you might save money by dying before 3 months is up, and avoid the risk that you’ll be reassessed as being stable enough to have a primarily social need. Put another way, if you decide to live out your days at home with NHS care then you’ll have three months to enjoy that unbothered. After three months you’ll be reassessed and if you’ve got a bit better, you might have to pay for the rest of your care. Even though this very specific circumstance is unlikely, people with six months to live generally don’t get much better, you might be afraid enough of the risk that you’ll make sure you save the money by shuffling off before reassessment.
Equality of access
The third consideration is that assisted dying might not be available to every patient who would want it. Assuming you believe it’s a legitimate form of care, then you will believe it ought to be provided equally well to everyone who requires it. However, with doctors being able to opt out of engaging with assisted dying, it may not be available across the board.
A 2020 BMA survey found that 45% of doctors would not engage in any way in the process of providing assisted dying if it were to become legal. This means it’s not unlikely that the doctor you see will not help you access this treatment. This could mean that another postcode lottery comes into existence where some people can access support to end their life and others cannot. This, along with all disparities in care, is unjust.
It’s a truth that must be reckoned with, that it’s not possible for everyone to be given a dignified and comfortable end of life. Even with the best care available whenever it’s needed, and it isn’t, there are still some people who would choose assisted dying. The provision of this is complicated by the power even the most sensitive and class conscious doctors have over patients. It’s also complicated by the costs some patients end up having to pay for their care, when it’s considered primarily a social need. There is much about this bill that will need resolving as it becomes law.
