Desperate to Live and Desperate to Die
By Victoria Knight (July 2017)
The High Court and the Court of Appeal currently have before them two very different and difficult questions pertaining to the sanctity of life.
In one, Noel Conway is the latest terminally ill person to approach the High Court to ask for the right to determine the time and place of his own death. This is in stark contrast to the request of the parents of the terminally ill baby Charlie Gard who battle on in an attempt to allow his continued fight to live and to try further treatment for his devastating mitochondrial disease.
The arguments put forward by each family could not be more different. Noel wants the right to end his life prematurely and to have help to do that within the law. He wants the Court to agree that his rights are not being recognised at the moment. Charlie’s parents want Charlie to be granted the right to continue life support and to try a new treatment in the US.
The Courts find themselves in an unenviable position of having to decide the destiny of Noel and Charlie. One patient is asking to die and one patient is asking to live.
How can any Court decide such opposing requests; the arguments for which are based on the same principles and human rights?
Issues and Implications
In essence, each individual issue or principle involved is simple. The way they fit together is, however, complex.
The issues are:
- The Human Rights Act 1998 guarantees respect for private and family life and for every person to make their own decision as an individual (or guardian in case of a child) about their medical treatment,
- The Act also provides a right to life,
- The Suicide Act 1961 makes it a criminal offence to help someone to die,
- Doctors have a duty to act in the best interests of their patients including at the end of life, and
- Ethical considerations surround the erosion of respect for the life of disabled people.
Finding a balance between these conflicting issues is almost an impossible task as the law currently stands. The difficulty is that each issue is often the counter argument (or trump card) for another. Very often the only way out of this circle is to create legislation.
The Medic’s Position
Doctors have to act in the best interests of each patient.
In Charlie’s case, his treating clinicians see a child who has irreversible catastrophic brain damage and whose life is completely dependent on artificial support. They have decided that they shall apply to end his artificial support, the end of his life being close. The doctors have decided that no treatment will be of any benefit to him and that to transfer him out of the country for experimental treatment, is only likely to inflict further suffering and harm on him.
Noel, suffering motor neurone disease, knows his muscles will waste away to the point he may become locked inside his body on a ventilator while brain function continues. Noel wants to avoid this and he wants to die before he gets to that stage. The issue for Noel is that to bring his life to an end before he reaches that point, there needs to be an intervening act to end his life – an act that he cannot do by himself and an act that the medical profession would view as causing suffering or harm.
So, in fact, perhaps the medic’s position in each case is not very different after all – the clinicians in each case just want to avoid unnecessary harm to their patient.
When is Extra Life Unnecessary Harm?
The question of the right to life or death finds both support and opposition in the law and this is the constant challenge with these types of cases.
Both having autonomy as a patient to decide on your own care and treatment is underpinned by the human right to have respect for private and family life and this includes making decisions about our own healthcare. It is no longer illegal to commit suicide: we can end our own lives.
If death is very close (hours or days), the General Medical Council advises that there is no absolute presumption in favour of prolonging life. Artificial support can be withdrawn. If death is not close (but still inevitable), the GMC advises clinicians to seek a Court ruling to end artificial support (this is what happened in the case of Charlie Gard). Life in these circumstances becomes unnecessary harm.
It is, however, illegal to help someone end their life prematurely. If a doctor currently were to help a patient to die prematurely, they would face 14 years in prison.
The Different, Difficult Questions
The two cases in front of the Courts at the moment each ask something very different from the judiciary.
In Charlie Gard’s case, the Courts seem secure in their role on deciding when it is appropriate to withdraw life support. Although perhaps unpopular with some members of the public, the Court has agreed to date with the clinicians at Great Ormond Street Hospital in the case of Charlie Gard.
However, the issue of causing life to end earlier than it naturally would is much more complex. Finding a way to balance patient autonomy with the clinicians’ duty to act in the best medical interests of the patient at all times has become an age-old sticking point.
How Do We Move Forward?
When it comes to the right to die, human rights are interpreted to support both sides of the argument. The Courts so far have only really been asked to consider if the law under the Suicide Act is incompatible with the Human Right for respect for private and family life. On that question, the Courts have been asked whether further legislation is required to deal with that conflict.
In 2014, the High Court indicated that the law is incompatible and strongly urged the Government to look at the issue again. However, in 2015 an Assisted Dying Bill was rejected by 74% of MPs, bringing the matter back where it started.
As a country, we are a long way from resolving how to manage assisted dying. What is clear, however, is that this question will not go away. Indeed, with medical advances and longer lifespans, the Courts will have to look at cases like this increasingly frequently. It is not long ago that patients in Noel and Charlie’s shoes would simply have died, naturally and quickly, and the need for an application to the Court would simply not have arisen.
MPs seem reluctant to take decisive action in this area, not least for fear of adverse publicity attached to individual cases where lives have been brought to an end. They will though be under increasing pressure from those who say that the status of the law is falling behind the rapid pace of medical progress, and that human rights often cut both ways.
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