Prioritising End of Life Planning

There should be clear legislative provision for advance directives (AD’s) in Scotland.

AD’s have no clear and authoritative statement in the current law. Meanwhile other jurisdictions are considering the whole issue of end-of-life decision-making in a modern way and are implementing integrated regimes, which include full use and promotion of advance directives.

The Scottish Government is committed to patient centred care and affording statutory basis to AD's is central to this. Many people are sure they would not want to be kept alive in a long-term coma-like state. According to a YouGov poll, 82% of people have strong views about their end-of-life treatment but very few (about 4%) have made an advance directive.

One of the reasons for this is that many people wrongly believe that family members would be able to make health care decisions on their behalf, if they were unable to do so themselves. An AD frees loved ones from the pressure of having to make critical medical care decisions while they are under stress or in emotional turmoil. If a person becomes unwell, having an AD in place provides peace of mind, knowing that the healthcare team have a blueprint in place to guide them.

It is not easy for families and medical professionals to withhold or withdraw treatment and an AD helps them to come to terms with this by giving reassurance that they are respecting the persons wishes. An AD empowers individuals to determine how the end of their life will happen and empowers the family and healthcare team with guidance on how to ensure capacious decisions are respected. Research shows that patients and their families report significantly less stress, anxiety and depression when an AD is in place.

Covid-19 and our response to it is the biggest challenge we have faced in terms of older people’s human rights. It is disproportionally impacting those at the end-of-life who need additional support. Having end of life plans in place mean that if the person becomes ill, their wishes and human rights will stand a much better chance of being respected, protected and fulfilled. It allows the person to retain control of their decision making and gives comfort and reassurance, contributing to their overall wellbeing.

Deferral of putting end of life documentation in place is well known. One reason is that, in ordinary times, people find it emotionally difficult to talk about death and dying and do not know how to access/prepare this documentation. But Covid-19 has meant that people are facing their own mortality as never before and are aware of the importance of having their wishes documented in a meaningful way. There must be a mechanism in place to support this over and above the support offered by the third sector and solicitors.