Cases involving the withdrawal of medical treatment or, in some cases, the use of medical treatment against the wishes of a child or an adult without capacity are some of the most emotive cases that come before courts. There is a natural and widespread interest from members of the public about judges deciding whether a child or a vulnerable adult should continue to receive medical treatment. People wonder what they would do if faced with a similar set of circumstances or what they would want their relatives to do if they were in a similar situation.
People are most familiar with decisions to have a vulnerable adult sterilised, or for them to undergo treatment that they do not want to receive but which is considered to be in their best interests. People will also recall cases such as those of Tony Bland where an application was made to withdraw life-sustaining treatment to a young victim of the Hillsborough disaster.
The latest case decided on 28 September was the first time a judge had been asked to rule on whether life-supporting treatment should be withdrawn from an adult not in a 'persistent vegetative state', but who is said to be 'minimally conscious'.
Once again, a family who knew that it would have been the wish of the patient M not to be subjected to the daily routine of being moved from bed to chair and back whilst being minimally conscious. The official solicitor acting on behalf of the patient argued that M was clinically stable and showed awareness of her environment. Painfully for the family, the judge in this case decided against their wishes and refused to allow the withdrawal of medical treatment.
All of these cases involve incredible pressure on the relatives of the patient. The relatives, who are already under a great strain because of the condition of their loved one, are pitched into the court arena - often against doctors who are doing their best to make difficult decisions about withdrawing or refusing medical treatment which will then result in the death of the patient. The families in these cases understandably argue that they know the patient better than the treating doctors and are aware of what they would want or are aware of the patient’s responses to things happening around them.
Some of the most emotive cases involve those where the treating doctors want to withdraw treatment for a child in circumstances where they argue that it produces no improvement in their condition and causes the child a great deal of pain.
In March 2005 a High Court judge ruled a 19-month-old boy, known as Baby MB, could be kept alive despite doctors telling a hearing his quality of life was so poor he should be allowed to die. In that case the baby could not breathe unaided, swallow or chew but did not suffer from brain damage. The judge at the time said Baby MB was not unconscious and was capable of bonding with his family.
In February 2006 a judge ruled doctors would not have to resuscitate toddler Charlotte Wyatt, from Portsmouth, who was born prematurely with severe brain and lung damage.
I represented the family of a six-year-old girl with an incurable brain disorder who died before the main hearing of her case. Amber Hartland from Cwmbran, Torfaen, suffered from Infantile Tay-Sachs, which left her almost completely paralysed. She was not expected to live beyond her third birthday, but a course of experimental medication stabilised her for more than three years. Her parents were completely devoted to her and were able to give clear accounts of the amount of pleasure that she was able to communicate to them about things that they did for her whether it was watching a DVD of Dumbo or on the trips to Disneyland.
Doctors had told her parents she would not be admitted to intensive care again if she took a turn for the worse, that the treatment was painful for her; that she was still deteriorating and a judge would have to decide on her future care. Her parents Lesley and Nick argued that they would never allow Amber to suffer, that she could communicate her pleasure and pain to them. Just days prior to the final hearing of her case as her parents expressed it: 'Amber decided that it was time to go and passed away peacefully in her sleep.' True to their word that they would not ever subject her to pain or distress Nick and Lesley did not push for her to be resuscitated.
Ruth Winston-Jones went through a similar experience five years ago with her son, Luke, who was born with a genetic disorder called Edward's syndrome. She too went through a legal battle but Luke died after High Court judges ruled that doctors could withhold mechanical ventilation.
The cases have often not as widely reported as they might be due to restrictions on publicity that have been traditionally imposed by the courts. However, there is a growing trend towards more openness and less restrictions on publicity within the court system. Whilst this is to be welcomed, in general, recent events have shown the great public anger that can be generated if vulnerable people are exposed to the very worst practices in journalism.
Leslie Keegan is a barrister at 7 Bedford Row and a former neurophysiologist