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Living Wills – should they be compulsory?

by Pam Austen
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High Court Judge suggests living wills should be compulsory for all those able to make future life sustaining treatment decisions.

Many of us have thought, what would happen if I was unable to make or communicate decisions to my family or the medical profession? There may be circumstances that you would not wish to be kept alive by medical science, maybe if you had been involved in a serious accident leaving you severely brain damaged or had a progressive illness such as Motor Neurone Disease. It may be that due to the nature of the injuries or the progression of the disease or condition, you were no longer able to communicate your wishes to your family or those treating you. No-one knows what you wish to happen and you can no longer let them know. Would you wish for treatment to be stopped and let nature take its course?

In a recent High Court case, a Judge commented that living Wills should be made compulsory. The case involved an 80 year old man who is unable to give or refuse consent for any medical treatment. There was conflict between the hospital’s treatment plan to insert a feeding tube into the patient and the family’s views.

In many instances, the decision is not a difficult one where medical professionals and the family are in agreement, for example to turn off a life support system. However, emotions run understandably high and families may always think the ‘miracle’ chance that someone may come out of the vegetative state, is worth fighting for irrespective of the person’s wishes whether they would wish to be in a vegetative state but able to breath for themselves and require 24hr full care for the rest of their lives. With advances in medicine and technology this has become an even harder decision for families and medics than in the past where maybe nothing further could be done.

In circumstances where there is a conflict between the treating staff and family the hospital has no option but to apply to the Court for a decision to be made concerning the treatment or withdrawal of life sustaining treatment of a patient in these upsetting situations. The medical staff wish to do what is best and possible for their patients and families may wish to cling to ever last hope irrespective of the likely outcome. It operates the other way too of course, where the medics believe there may be options but the family do not believe this is what the person would have wanted. Both scenarios would lead to the Courts having to become involved which is time consuming, costly and very stressful for all involved.

What is a Living Will?

In the usual course of life events, we are able to discuss treatment options with specialists, process the information and make our own decision about which route to take. We all have the right to refuse treatment if we wish and provided we have the mental capacity to do so, the medics must abide by our decisions.

If we lose our mental capacity to understand the options and their consequences then we are unable to consent or refuse treatment and the decision must be made for us. Medics and even family may not know what our views would be in these serious situations.

A living will, also known as an advanced directive (decision to refuse treatment) or advanced statement (document setting out your wishes and care preferences in certain situations to allow others to take it into account), is a way of letting others know what you would wish to happen in certain situations.

A Lasting Power of Attorney for Health and Care can also be used. This appoints an attorney who has authority to consent or refuse life sustaining treatment on your behalf, if you wish. You can also confirm your wishes for different types of circumstances and what you would want your attorney to do.

The Mental Capacity Act 2005 gives legal status to advance decisions to refuse treatment and LPA’s so that you can plan for your future, should the worst happen and you were unable to make your own decisions.

An advance statement on the other hand, has no legal status. It allows you to make more general statements, describing your wishes and preferences about future care should you be unable to make or communicate a decision or express your preferences at the time. You could include such things as your as food and drink preferences, what music or TV you like for example or who you would like to visit you or not. This is not related to life sustaining treatment decisions like the advance decision or LPA and would only be considered by those looking after you. It is not legally binding.

Unfortunately, we are not a society that is open to discussing the more horrible possibilities in life, but until we can overcome this, there will always be situations where the Courts have to become involved. Mr Justice Francis in the case of the 80 year old man, indicated that people should be encouraged to tackle these issues. He suggested that a public campaign about living wills and provide people with the correct information so discussion could be encouraged, would help. This would hopefully enable individuals to make decisions, before they find themselves in a situation where they are not able to any longer. The more people that prepare living wills the less the need for the Court to intervene, family and friends would know what an individual would want. Potentially there would be a legal document to present to medics, allowing incredibly difficult and upsetting decisions for all, to be made, knowing this is what the individual would have wanted.

It appears such a simple solution to such an emotive issue. The sort of situations being discussed are not those where someone has had a heart attack and is unconscious in the resuscitation room of an A&E department. These are the life sustaining treatment cases.

Situations such as baby Charlie Gard will probably always need to be decided by the Courts as Charlie did not and never had the mental capacity to decide for himself. Cases such as this 80 year old gentleman, where medics and family seem to have been unaware what his wishes would have been could have been avoided, if he had an advance decision or LPA in place. I know if I was involved in an accident that left me in a persistent vegetative state or got to the later stages of a degenerative disease such as dementia, I would not wish to be kept alive no matter how upsetting it was for my family to let me go. But without a legally enforceable document then it could be another Court case.

How do I make a Living Will?

It is reasonably straightforward and anyone over 18 and with sufficient mental capacity to make decisions about life sustaining treatment can make one. If the advance decision relates to life sustaining treatment, which is what this case is dealing with, it must be in writing.

There is no specific format but there are certain pieces of information that should be included and your signature should be witnessed. Age UK have produced a very helpful leaflet explaining Living Wills and exactly what information should be included: AGE UK FACTSHEET ADVANCE DECISIONS, ADVANCE STATEMENTS AND LIVING WILLS 

An LPA has the same criteria being over 18 and of sufficient mental capacity. It can be created on line and further information can be found here: GOVERNMENT INFORMATION POWER OF ATTORNEY There is a registration fee to pay. 

Above all talk to your family and friends about your wishes and if you prepare a living will make sure the relevant people know about it. It would be of no use in a drawer where no one knew about it.

Personally, I doubt any government would make Living Wills compulsory, particularly when they will not make organ donation an ‘opt out’ system, but with an aging population and increased incidence of dementia, as well as the other issues of advances in technology it is something we should all be considering.

All types of Living Wills can be created yourself, but if you want a lawyer to help you have a look on our JustBeagle site for fixed fee prices.

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