Importance of keeping track of and updating Living Wills

Ensure that the right people know about your wishes, says Kenneth Pinkerton

Last year, the family of a woman whose Living Will had been lost by her hospital received £45,000 in compensation from the NHS.

The case highlights the importance of Living Wills (often also known as ‘Advance Directives’), and the need to ensure that they are kept track of and regularly updated.

Brenda Grant, of Nuneaton in Warwickshire, suffered a debilitating stroke in 2012, which left her without the ability to walk, talk, or swallow. Some time previously, she had executed a Living Will instructing those caring for her not to prolong her life in such circumstances, stating that she feared ‘degradation and indignity more than death’.

She had, however, failed to inform any of her family members about the Living Will, and the hospital placed the document in amongst a pile of medical notes, there to lie forgotten for several years.

Mrs Grant was fitted with a tube to allow feeding directly into her stomach and was discharged to a nursing home, where she remained for 22 months. It was only when she was re-admitted to hospital for a differ- ent reason that her GP recalled that she had executed a Living Will, and brought this to the hospital’s attention.

On 4 August 2014, nearly two years after her stroke, Mrs Grant finally died.

A Living Will is a direction to family, carers and other healthcare professionals about whether a person wishes to refuse specific treatments in the future. It can be made by anyone aged 16 or over as long as they understand the nature and effect of what they are signing. A Living Will cannot, however, ask for a person’s life to be ended – in others words assisted suicide. At present, that is against the law.

The law surrounding Living Wills differs between Scotland and England. In England, Living Wills are legally binding and must be followed so long as they meet certain requirements. The legal standing of Living

Wills in Scotland has never been tested by the Scottish courts nor are they dealt with in any Scottish legislation. It is however thought to be the case that if challenged in the courts in Scotland, a judge would rule in favour of respecting the terms of a Living Will so long as it is valid and applicable.

That said, in terms of the Adults with Incapacity (Scotland) Act 2000, the past wishes of an incapacitated adult must be taken into account when taking decisions on his or her account. Therefore, doctors and others taking decisions regarding a person’s health-care, for example a Welfare Attorney, are required at the very least to take Living Wills into consideration and, in practice, it is understood that they are treated as binding in Scotland, especially when they have been executed in the relatively recent past. For this reason, it is sensible for a person who has signed a Living Will to periodically confirm that it still reflects their wishes.

Returning to the case of Mrs Grant, at least two conclusions may be drawn.

Firstly, Living Wills are useful and important. Despite the hospital’s error, Mrs Grant’s Living Will was, ultimately, followed. Whilst the delay was distressing for the family, and expensive for the NHS, Mrs Grant’s wishes were acted upon in the end. Had a Living Will not existed, Mrs Grant might have remained in the care home for far longer, unable to express her wish to have the life-support switched off.

Secondly, a person who has signed a Living Will should ensure that the appropriate people are aware of its existence. That might include close family members, any Welfare Attorney, the GP and any legal advisers. Whilst one individual (or organisation) might forget about or indeed lose the document, where several are aware of its existence there is a greater chance that it will be acted upon. Secrecy in such circumstances can be counterproductive.

The Scottish Government is currently consulting on reforms to the Adults with Incapacity (Scotland) Act 2000, which includes the possibility of enacting a statutory framework for Living Wills. The consultation is open for responses until 30th April 2018, and may lead to a Bill being brought forward to amend the Act. Kenneth Pinkerton is a Senior Associate with Turcan Connell