In 2013, the Supreme Court established the test for deciding whether a particular course of treatment is in a patient’s best interests in Aintree University Hospitals NHS Foundation Trust v James. We explore how this decision has been applied in practice.
Best interests test
A clinician must establish what the patient would want if they had the capacity to make the decision for themselves, by hearing evidence from friends and family members. Lady Hale said in Aintree that the best interests test should contain “a strong element of substituted judgment” to put yourself in the patient’s shoes.
It is necessary to consider a wide range of circumstances, including the medical treatment in question, what it involves and its prospects of success, in consultation with medical professionals. However, in matters of life and death, the starting point remains a strong presumption that it is in the patient’s best interests to stay alive.
Withdrawal of life-sustaining treatment
In United Lincolnshire Hospitals NHS Trust v N [2014] the Court of Protection ordered that there be no further attempts to administer life-sustaining artificial nutrition and that artificial hydration should be withdrawn from a patient, N, who was in a minimally conscious state (MCS). By the time of the hearing, N had not received artificial nutrition for 32 days as a result of continually removing her percutaneous endoscopic gastrostomy (PEG) tube. N’s family gave evidence that her actions made clear she did not want to be PEG fed and that she would consider the continuation of artificial nutrition undignified.
The judge concluded she was utterly convinced it was in N’s best interests not to make any further attempts to continue with PEG feeding and that the artificial hydration should also be withdrawn.
Similarly, in M v N [2015], the judge held that withdrawing both life-sustaining artificial hydration and nutrition from a patient in an MCS was in her best interests. Mrs N, a 68-year-old woman, suffered advanced multiple sclerosis and had been in an MCS for seven years. She received life-sustaining artificial nutrition and hydration by way of a PEG tube. Mrs N’s daughter brought an application to withdraw this treatment on the basis her mother would consider it undignified.
The judge held that there was no prospect of achieving a life that Mrs N would consider meaningful, worthwhile or dignified. It would therefore be disrespectful to preserve her life further in a manner in which she would consider grotesque. He placed strong emphasis on what Mrs N would have wished for and relied heavily on evidence from her family.
However, while the substituted judgment approach has been readily adopted by the Court of Protection, it still adopts a ‘balance sheet’ approach.
We recently acted on behalf of an NHS trust in R v B Trust, X and Y [2016]. This case concerned a 20-year-old woman who suffered a calamitous brain bleed, causing a morbid deterioration of her brain cells. At the time of the hearing she was reliant on a life-sustaining ventilator. The judge heard expert evidence that X had been brain stem dead since the neurological event the previous week and there was no prospect of recovery. X’s parents were devout Orthodox Jews. They submitted that the presumption in favour of life should be given significant weight.
The judge was convinced by the expert evidence that X was brain dead and considered that most young women would want the ventilator disconnected. However, to be considerate to the family’s (and X’s) strong religious beliefs, the ventilator should be withdrawn only once a conventional brain stem death test had taken place to confirm the expert’s views.
Providing treatment
In May 2016, we represented the applicant trust in Cambridge University Hospitals NHS Foundation Trust v BF [2016]. The judge concluded it would be in the best interests of a 36-year-old woman suffering paranoid schizophrenia, who was diagnosed with likely ovarian cancer, to undergo a total abdominal hysterectomy. The court heard expert evidence that, without the surgery, BF would have a life expectancy of six months; with the surgery, this would likely be extended to at least three to five years. Her capacity fluctuated and she had previously signed a consent form to have the surgery. However, BF resisted initial attempts to perform the operation due to a psychotic episode.
Over the next month she was deemed incapable of making a decision as to whether or not to proceed, on the basis that she could not weigh up the risks and benefits of surgery. The judge held that BF did not have capacity to make the decision for herself. He took into account her previous willingness to undergo the surgery. The judge was satisfied the chance of continued life outweighed the risk of permanent loss of fertility.
We also recently provided emergency advice to a trust regarding the decision to treat a patient, DS, whose capacity to make a decision for himself was uncertain. DS required lifesaving dialysis, without which it was thought that he would die within hours. He previously had a psychiatric assessment which concluded he had capacity and no recognised psychiatric disorder. DS refused the dialysis (on Thursday), stating he would have it at the weekend, despite having previously said that he did not want to die. DS subsequently agreed to go ahead with the treatment.
This case highlights the importance of establishing if a patient can ‘use or weigh’ the relevant information before embarking on a substituted judgment test. It also shows how difficult it can be to establish their wishes when they appear inconsistent.
Implications for medical professionals
Ascertaining a patient’s likely wishes when they do not have capacity is always challenging for clinicians in practice. Often there is little evidence or conflicting statements from the patient or their relatives.
The move from a paternalistic approach to one where substituted judgement is applied emphasises a patient-focused approach to decision making, based on a broader consideration of the issues. Decisions now better reflect both the patient’s and their family’s wishes. This is likely to be welcomed by clinicians as it creates transparency and a system in which patients’ views and their dignity are respected.
Read other items in the Healthcare Brief - July 2016
Read other items in Hong Kong Medical Law Brief - December 2016
