She wants "to die trying to live."

NHS says she shouldn't get that choice

When doctors say you’re going to die, it’s supposed to be a scientific prediction, not a decree. But in the case of 19-year-old “ST,” the UK’s National Health Service is trying to enforce that prediction in court.

It’s generally accepted that people get to make their own medical decisions—at least if they’re competent adults. But in discussions of medical ethics, I’ve sometimes known people to interpret disagreement with one’s doctors as evidence of incompetence. That kind of thinking can empower doctors with the logic of “heads I win, tails you lose”: If you agree with your doctors, they get to do what they want, because you consented; if you disagree more than a little, they get to do what they want, because you’re not competent to decide.

ST disagrees with her doctors about whether she should keep fighting to live.

As laid out last month in the opinion of Justice Jennifer Roberts for the Court of Protection of England and Wales, ST has a form of mitochondrial disease so rare that there are only 100 known cases in the entire world. She’s also had covid-19 and thinks some of her symptoms are from long covid. She’s on a vent, a feeding tube, and dialysis, and her principal doctor gives her a 1 in 4 chance of living into the autumn to pursue experimental treatment.

Despite all that, ST is—as of the period when the information the court had was gathered—able to communicate. And what she said was that she wants to go down fighting. As she put it to one of the psychiatrists sent to evaluate her: “This is my wish. I want to die trying to live. We have to try everything.” She dislikes morphine because she values remaining conscious. She’s prepared to keep putting up with dialysis. Relatives describe her as “a fighter,” and the court acknowledges that that’s how she sees herself.

There’s no treatment available to try to save ST’s life in the United Kingdom, but she and her family have contacted people working on experimental treatments in the United States and Canada, and people involved with three different experiments had shown interest in her as a potential patient by getting back to them with questions.

The NHS, however, thinks she is going to die. It thinks what she needs is care designed to make her comfortable in dying. The service proposes to end her dialysis and, if she stops breathing again, deny her resuscitation. And the lead doctor on her case thinks she’s not competent to decide whether to accept that approach. As the court put it: “In Dr A’s opinion, whilst she clings to this hope of a better outcome involving her survival, she has closed her mind to the alternative of ‘greater comfort’ or ‘less intrusive or painful treatment’ which palliative care is likely to provide.”

The court agreed.

The key principle is stated in a precedent Justice Roberts quoted: “If one does not ‘believe’ a particular piece of information then one does not, in truth, ‘comprehend’ or ‘understand’ it, nor can it be said that one is able to ‘use’ or ‘weigh’ it. In other words, the specific requirement of belief is subsumed in the more general requirements of understanding and of ability to use and weigh information.”

Notice what that means: If you don’t believe your doctors and the court does, you don’t understand your situation, and you’re not entitled to make your own choices.

“Because she clings to hope that her doctors are wrong,” Justice Roberts wrote, “she has approached decisions in relation to her future medical treatment on the basis that any available form of treatment is a better option than palliative care which is likely to result in an early death as active treatment is withdrawn. In my judgment she has not been able to weigh these alternatives on an informed basis because (a) she does not believe what her doctors are telling her about the trajectory of her disease and her likely life expectancy, and (b) she does not fully comprehend or understand what may be involved in pursuing the alternative option of experimental nucleoside treatment. Whilst I accept that she recognises that it may not be successful in terms of the outcome which she wishes to achieve, she has failed to factor into her decision-making that there are, as yet, no concrete funded offers of treatment, far less offers which might offer her even the smallest prospect of a successful outcome.”

Yet the information Justice Roberts includes in her opinion shows that ST’s judgments are, in light of her knowledge and values, quite reasonable.

First of all, ST has good reason to think her doctors at least might be wrong. She’s already survived at least one situation in which her lead doctor said she would die within “hours or days.” Besides, it’s a rare disease: not only is that doctor’s experience limited, the combined experience of all the doctors in the world only covers 100 known cases.

The judge faults ST for giving inadequate weight to the possibilities that she might not get into a study, that she might die traveling to North America, and that even an experimental treatment might not save her. But if she wants to live or at least die trying, none of that actually weighs against trying to get into a study and go. As long as she’s trying to get into a study or traveling to North America to participate, there are only two possible outcomes: she survives, or she dies fighting. And both of those are outcomes she has said she prefers to being eased into death by the NHS.

Even “closing her mind” to the possibility that there’s no way for her to survive may be the best thing for her. She wants to “die trying to live.” If she accepts that survival is absolutely impossible, then, at least arguably, nothing she could do would even be an attempt to survive, because nothing she could do would seem to her to make survival more likely. But if she believes there is even the slightest sliver of a chance of survival, then there is something for her to pursue. She can try.

One might, of course, argue that it is irrational to close your mind to the truth. But we are talking here about a rare disease. The court faults ST for not considering that her doctors might be right, but the court fails to consider that the doctors might be wrong. (There are also places in the opinion where it seems that some of the doctors might not even think survival, at least for longer than expected, is absolutely impossible.) It is hard to see how, in the case of a rare disease, and especially when the patient has already lived longer than expected, one can be justified in saying it is absolutely impossible that the patient can be saved. Extremely unlikely, perhaps. But not impossible. And given her values, rounding even a lightning strike’s probability off to zero would mean giving up not only the hope of life, but even the hope of the kind of death she prefers.

People should be able to die with dignity. But there is no dignity in being eased into death against your will by people who claim that they know what’s best for you. The dignity in assisted suicide, or in palliative care, is built on taking back control from one’s illness and one’s doctors. The court has now said that ST doesn’t get to take back control. If it follows that up with a decision that the NHS’s plan is what’s best for her, what the NHS and the court will be choosing for ST is to have the doctors take control and let her illness kill her.