Deciding what level of care a critically unwell individual should be entitled to is very challenging, with conflicting opinions often adding to the emotionally-charged nature of the discussions.
These themes were recently explored in a BBC drama entitled ‘Best Interests’, where a 13-year-old girl named Marnie, born with muscular dystrophy, experiences a deterioration in her condition that leaves her unconscious and on a ventilator after being resuscitated.
Given her physical state and the likelihood of making a recovery, Marnie’s family and healthcare professionals were faced with the painful task of deciding what care she should be afforded, the key question being; will further care and treatment cause more harm and prolong her suffering or is it necessary to give her a chance at life?
Needless to say, it’s a question that sparked serious debate throughout the four-part series and one that continues to impact families across the UK today. So, what are the key considerations when making best interest decisions and what options are available to affected parties?
Who makes the decisions?
Whilst the focus of the BBC drama was on Marnie and her personal battle, the majority of best interest decisions concern vulnerable, disabled or older adults. If an individual lacks the mental capacity to make a personal choice or decision, then best interest decisions must be made by a trusted individual.
Many day-to-day best interests decisions are made by those caring for the individual, such as family members, friends and carers. Best interests decisions can include minor decisions, such as what they should eat or wear, whereas significant decisions such as those concerning medical treatment are normally taken by professionals involved in the person’s treatment or care. When medical professionals make decisions on behalf of someone who lacks capacity they must ensure that capacity and best interests assessments are undertaken in accordance with the Mental Capacity Act 2005. For more significant decisions, such as life sustaining treatment, this would usually involve holding a best interests meeting and inviting all interested parties.
In some cases, a family member or close friend may hold a Lasting Power of Attorney for Health and Welfare to enable them to make decisions for the adult lacking capacity. However, if one is not in place then it may be necessary to apply to the Court of Protection for the Court to make a decision.
Where there is disagreement as to whether life sustaining treatment should be provided, continue or be withdrawn, the treating NHS trust should refer the matter to the Court of Protection if the disagreement cannot be resolved between the parties. With this in mind, the anger and frustration that many families feel when debating the best course of action with professionals becomes easy to understand.
The Mental Capacity Act (2005) provides a Code of Practice which includes a checklist to help decision-makers make best interest decisions on behalf of the person they represent.
The Mental Capacity Act
While the Mental Capacity Act doesn’t provide a precise definition of “best interests,” it acknowledges that this can vary from person to person. Nevertheless, individuals must act in someone’s best interests before taking any actions that may impact them while they lack capacity. This includes decisions regarding someone’s care and treatment.
Section 4 of the Mental Capacity Act outlines a best interests checklist:
- Wishes and feelings matter: This includes current desires as well as any expressed before losing capacity. It also encompasses personal beliefs and values.
- Consider all relevant circumstances: This includes understanding the nature of someone’s mental health or physical illness, its duration, age, whether they would normally make the decision themself, and the likelihood of regaining capacity in the near future. Additionally, it takes into account who is currently or was previously involved in care provisions.
- Future decision-making capacity: It is important to assess whether the individual concerned may regain capacity in the future, and if delaying the decision is a viable option.
- Consider the input of others: The views of carers, family members, and others who have a vested interest in an individual’s well-being, or anyone appointed to act on their behalf, should be taken into consideration.
By understanding and adhering to these principles, the Mental Capacity Act ensures that a person’s best interests are always at the forefront of decision-making processes.
Reaching an agreement
Given the amount of stress and pressure that is already placed on the involved parties, it is always best to try and avoid litigation, doing whatever possible to reach an amicable outcome without the court’s intervention.
One such avenue worth exploring is mediation – a non-judicial form of dispute resolution that is voluntary, flexible, informal and party-led. One of the biggest benefits of mediation is that it prioritises communication and understanding, helping to build bridges and find common ground between conflicting parties.
One of the most common complaints of a patient’s family and friends is that their voices are not being heard, so mediation will give them an opportunity to sit across the table from healthcare professionals and make their case. It also tends to be a lot less costly than court proceedings and can be handled in a matter of days.
In some cases, mediation may be useful after a court decision has been made too, as it helps parties reach an agreement on the arrangements for withdrawing treatment if this course of action is taken. It is much easier to de-escalate conflicts during the mediation process, as these discussions tend to encourage collaboration when done in person.
That being said, the success of mediation relies upon compromise, which in the case of patient care, can be difficult to achieve. Even still, if it helps ease at least some of the tension from proceedings, then it may be worth considering.
When to seek legal advice
There’s no getting away from the fact that cases of this kind can be extremely painful for those involved – the process is often traumatic and the final verdict can leave family members feeling let down and betrayed.
With the stakes so high and emotions running deep, it’s wise to consult an experienced team of legal experts from the outset, as they will step in and advise on certain points, removing some of the pressure during a difficult period.
Although efforts may feel futile when dealing with large healthcare institutions and experienced professionals, there may be avenues and options available that have not yet been explored, which legal experts can help you identify.
Whatever the situation may be, a second opinion should always be sought – best interest decisions are a tricky topic to maneuver, so it’s important that no stone is left unturned.
