End of life Supreme Court Decision- how does this affect you if you are ill?

A Supreme Court decision means that legal permission is no longer needed to withdraw treatment from patients in a permanent vegetative state.

Thousands affected by life changing conditions can now have food and liquids withdrawn to avoid prolonging their suffering. Here we set out what the judgment says and how it will affect victims and their families.

The background on affected victims

There are about 1500 new cases each year of people entering a permanent vegetative state (PVS) with about 3000 of these patients alive at any one time.

The interests of victims is protected by law through the Official Solicitor. Cases involving decisions about care, treatment and other matters are handled by the Court of Protection, This court gives judgments on decisions relating to individual cases.

The legal background

The issue of withdrawing treatment or nutrition or hydration was first raised in 1993. A case of Tony Bland, who suffered severe brain damage in the Hillsborough disaster in 1989, was brought to the House of Lords.

The decision i that case made three key points.

1. Tube feeding was to be treated as medical treatment rather normal feeding;
2. Any treatment to patients who did not want it to was considered to be an assault an;
3. Medical treatment could be stopped if it was not considered to be in the patient’s best interests.

The decision helped but there remained confusion and uncertainty about what to do with victims in a PVS. Attempts to clarify the law since have been rather muddled.  The Mental Capacity Act 2005 was intended to clarify the law but has not really done so.

The facts in this case

The Supreme Court has just handed down judgement in the case of An NHS trust and Others v Y (by his litigation friend, the Official Solicitor) and another (Appellants)

In this case in June 2017 Mr Y, an active man in his 50’s suffered a cardiac arrest. This led to extensive brain damage due to lack of oxygen.  He never regained consciousness.  Mr Y required clinically assisted nutrition and hydration to keep alive.  He was classed as a person with a prolonged disorder of consciousness (PDOC)

His treating doctors confirmed that he would never regain consciousness. Even if he did he would have had profound disability and would have been dependent on others to care for him for his remaining life.  He was considered to be in a vegetative state without prospect of improvement.

Based on this evidence his family clearly believed he would not wish to be kept alive.  The doctors and family agreed it would be in his best interests for his nutrition and hydration to be stopped. Based on this he would be expected to die within 2 to 3 weeks.

In November 2017 the NHS trust asked the court to declare that it was not necessary to get the court’s approval for the redrawing of nutrition and hydration. That request was granted. The court confirmed that it was not necessary to seek court approval for this withdrawal where the clinical team and family were in agreement.

In the intervening period an appeal by the Official Solicitor was made on Mr Y’s behalf. Sadly during this intervening period Mr Y died. However the court felt it was important that the appeal should go ahead because of the general importance of the issues raised by this case.

Key points of the case

The five Supreme Court justices led by the judgement of Lady Black unanimously agreed that:-

1. When families and doctors are in agreement hospitals will be able to remove feeding tubes without applying to the court of protection for permission;
2. To withdraw nutrition did not violate Human Rights provisions;
3. Applying the law would hinge on what was in the patient’s best interests. This would be balanced between receiving or not receiving treatment and where suffering could be avoided.

What protection is there for victims?

Whilst the judgement has wide ranging impacts which will affect hospitals, victims and their families there are still safety provisions in place

In particular Lady Black urged families to still apply to the court when either the doctors or the family disagreed over a proposed course of action.

In addition the decision is clearly limited to those in a persistent vegetative state.

What is meant by a PVS?

The key aspects of a PVS include:

1. A person is awake but shows no signs of awareness. They may open their eyes or wake up and fall asleep and have basic reflexes.

 

2. The person may be able to regulate heartbeat and breathing without assistance

 

3. A continuing PVS is one that lasts more than four weeks

 

4. PVS is defined as more than six months and caused by non-traumatic brain injury or more than 12 months if caused by a traumatic brain injury

 

5. A person in a PVS does not show any meaningful responses such as following an object with their eyes and responding to voices. They show no signs of experiencing emotions

If a person is diagnosed as being in a PVS, recovery is extremely unlikely but not impossible

Comment

Support groups for those wishing to help people in a similar plight have welcomed the decision.  Life protection lobbyists however do not agree with the decision and worry about the removal of safeguards for the ill and infirm.

However it should be noted clearly that the decision is limited to those suffering a PVS.  The judgment does not give a free hand to affect victims of diseases such as dementia, Alzheimer’s or other conditions. Hence they cannot stop treatment or hydration or nutrition simply because the family do not wish to continue visiting or caring for that relative anymore.

The Supreme Court showed no intention to extend this decision beyond this judgement. It is possible that future similar cases for other fatal or life affecting decisions may be made. It is a slow road for change in the law.

A link to the judgment summary to explain the case is here

Practical measures

Few of us want to think about what could happen to us and if we ended up in a coma or PVS.

It is clear from the judgement that in life Mr Y told his family that if he was chronically ill that he would not wish to carry on living.  This was conveyed to the doctors and to the court.

We would recommend that you think about the following issues:-

1. The case highlights the importance of families carefully and openly to speak about these issues and what they would want if they became ill;
2. Powers of attorney should be considered. These can be for both property and financial affairs but also for health and welfare decisions as well. This can include decisions about stopping treatment or nutirtion;
3. Everyone should draft a will. In particular if you have any particular issues about continuation of treatment or care this can be clearly included within the will and in any documents put with it. A short typed or handwritten statement setting out your wishes may be very helpful

 

The judgment highlights a very sad case and its implications. If there are further developments in the law we shall keep you updated.

There are likely to be widespread changes to how wills can be made. At Corries we advocate the choice to make a living will setting out your wishes clearly if chronic health affects your quality of life. We expect much change in the years to come.