Readers may recall two cases from the UK: Alfie Evans and Charlie Gard, infants with catastrophic illnesses whom the courts did not allow to be taken out of their hospitals — as desired by their parents — to receive treatment elsewhere.
Now, also in the UK, a conscious and capable 19-year-old patient, referred to in legal documents as “ST,” with an apparent terminal disease has been told by a court that she can’t decide to continue life-extending treatment after the hospital sued to be able to move her to palliative care against her will. From the legal ruling involving the National Health Service Trust (emphasis added):
The Trust’s case is that ST is “actively dying”. It became clear during the course of the oral evidence I heard from Dr A, the consultant leading her care on the ITU, that this assessment does not mean that her death is necessarily imminent. She may have weeks or even months to live. The exact prognosis is uncertain. What is clear from clinical observation is that she has progressive respiratory failure with episodes of acute exacerbation resulting in breathlessness, distress and agitation. The current care plan is based upon the withdrawal of haemodialysis although ventilation will continue.
ST is aware of this but wants to keep fighting for her life. Again, from the ruling, by the justice presiding over the case:
Despite all the difficulties which currently confront her, ST is able to communicate reasonably well with her doctors with assistance from her mother and, on occasion, speech therapists. Over the course of the last week she has engaged in two separate capacity assessments. I heard evidence from two consultant psychiatrists whose conclusions in relation to her capacity in both domains are set out in full written reports. . . .
She has been described by those who know and love her as “a fighter”. That is how she sees herself. At the heart of the issues in this case is what ST and her family perceive to be a ray of hope in the form of an experimental nucleoside treatment outside the United Kingdom which might offer her hope of an improved quality of life, albeit a life which is likely to end prematurely in terms of a normal life expectancy. She has told her doctors that she wants to do everything she can to extend her life. She said to Dr C, one of the psychiatrists who visited her last week, “This is my wish. I want to die trying to live. We have to try everything”. [Court’s emphasis] Whilst she recognises that she may not benefit from further treatment, she is resistant to any attempt to move to a regime of palliative care because she wants to stay alive long enough to be able to travel to Canada or North America where there is at least the prospect that she may be accepted as part of a clinical trial. . . .
ST is well aware that she has been offered a very poor prognosis by her doctors. She acknowledges that they have told her that she will die but she does not believe them. She points to her recovery from previous life-threatening episodes whilst she has been a patient at the intensive care unit. She believes she has the resilience and the strength to stay alive for long enough to undergo treatment abroad and she wishes the court to acknowledge her right to make that decision for herself.
If patient autonomy is to mean anything, why object? Because even though two psychiatrists told the court that ST has decision-making capacity, the court ruled that she doesn’t because she won’t accept that there is no hope:
In my judgment . . . ST is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors. Absent that belief, she cannot use or weigh that information as part of the process of making the decision. This is a very different position from the act of making an unwise, but otherwise capacitous, decision. An unwise decision involves the juxtaposition of both an objective overview of the wisdom of a decision to act one way or another and the subjective reasons informing that person’s decision to elect to take a particular course. However unwise, the decision must nevertheless involve that essential understanding of the information and the use, weighing and balancing of the information in order to reach a decision. In ST’s case, an essential element of the process of decision-making is missing because she is unable to use or weigh information which has been shown to be both reliable and true.
But as the decision makes clear, ST does understand that her chances are exceedingly slim. She just doesn’t consider them to be zero and hopes to be admitted to an experimental treatment regime.
A Will to Live
Moreover, ST wants to fight to live until she dies rather than be forced into palliative care regardless of what the future might hold. That would seem to be a human right.
Nope. Refusing to go along with the doctors’ views is evidence of an impaired mind:
ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.
The value of the life one is living under catastrophic health conditions is not a medical issue. It is a value judgment. If ST believes the severe difficulties of ICU treatment are worth the suffering caused thereby, why should the patient’s desires be discounted? If this were a case of health-care rationing, different arguments would have to be addressed. But there is no indication in the ruling that the cost of care was a factor.
Doctors Can Be Wrong
Finally, I would remind readers that doctors are sometimes wrong. A similar “futile care” legal dispute involving Tinslee Adams in Texas is illustrative. Her mother successfully sued to prevent the termination of Tinslee’s life support; today, years after doctors insisted that she would die, she remains alive and out of the hospital that wanted to withdraw life support. And Tinslee’s isn’t the only such “sure to die” scenario that didn’t work out that way. Rarely, lightning does strike and patients thought to have no chance beat the long odds.
We live in a time where individual freedom is under material threat from an emerging technocracy in which the most important policy and personal decisions are going to be made not by us but for us by “the experts.” The court’s imposition upon ST is one early example of the soft authoritarianism that this way comes.
Cross-posted at National Review.