Calling time on the last taboo

We know that it is coming and we can’t escape it, but we can’t bear the thought of it. We don’t plan for it and neither do our loved ones. It is almost as if banning all talk of it will prevent or delay it.

 But it won’t. However long or short it is, however filled with wealth and public honour, poverty or shame it will come to an end.

Previous generations were very much aware of the imminence of death. It was all around them and dealing with the death of loved ones was a central part of life.

The taboo is relatively recent, perhaps death is an uncomfortable reminder of how pointless and superficial our lives tend to be, after all what use is wealth and what price reputation when it comes calling?

Whatever the explanation many people don’t like to think about death and would rather put any talk of it on the long finger until it can no longer be avoided.  But this refusal to even consider it comes with a price attached.

Consider for example how our end of life and bereavement experiences are affected if we have little awareness or knowledge of the practical matters of death and dying? What happens when someone close to us is diagnosed with a terminal health condition and we don’t know very much about the care they need and how it is accessed? And what are the consequences for the care we receive when we’re dying if we haven’t ever discussed our end of life wishes with our loved ones or clinicians?

These issues are examined in an important new report from the end of life charity Marie Curie: Public attitudes to death and dying in the UK. Creating a death literate society.

It shows that too many people are simply unprepared for the end of life and unaware of where and when they can get support when they are impacted by death, dying and bereavement.

It defines death literacy as “the knowledge, skills and awareness of issues concerning death, dying, end of life care and bereavement.”

For most of us “death literacy” is an unfamiliar phrase but it shouldn’t be. People who are death literate are able to engage with issue of death dying and bereavement in an informed manner.

They will both have factual knowledge and understanding of death and dying, so they will know for example what palliative and end of life care means and who provides it.

They will also know about the process of death: how and where to get a death certificate, planning funerals, writing wills and the like.

Such people also have the confidence and ability to talk about death, dying, and bereavement with others. This may include conversations with family, friends or health and social care professionals about issues like end of life wishes and planning, and experiences of loss and grief.

This is very basic knowledge and the lack of it can be disastrous both for those who are dying and their loved ones. If we don’t talk about death and about dying how do people share their end of life wishes, and even if they do, how do they know what their options are?

Loved ones should not have to make decisions on their behalf.

That’s why informed conversations about death and dying are so important because, as the report states.

“Failure to have these conversations during the routine days of living results in decisions being made in times of declining health or crisis, affecting the quality and range of care and support available to patients and their loved ones; and impacting on people’s ability to die where or how they would wish.”

To achieve this and create a society with a healthier attitude to death it will be necessary to end the habit we have developed of “protecting” the young from the reality of death. This practice is as absurd – and considerably more harmful – than the inculcation of the belief that Santa exists. It fosters confusion and ignorance about death and stifles understanding of the grief process.

Research carried out this year, shows that 58% of 7-11 year old students across the UK, and 38% of 12-16 year old students, said that coping with loss and bereavement should be taught at school.

Meanwhile the Marie Curie survey, which was also carried out in England, Scotland and Wales, compares local levels of death literacy with those across the UK, helping to identify both strengths and areas for improvement in Northern Ireland.

The results are concerning. Whilst NI scores well on recognising terms commonly used in palliative and end of life care less than 50% were familiar with only half of them and one in five confessing ignorance of even common terminology like ‘palliative’, ‘end of life’ and ‘hospice care’.

The report states: “Given that these services make up core parts of the care and support that people will need when living with terminal illnesses, the lack of awareness of them among such large proportions of the public is very worrying.”

The results for advance care planning  were even worse, with 73% of people unfamiliar with that term, and low levels of recognition of some of the documentation and processes involved. For example, 86% were unfamiliar with ‘advance directive’, over half (52%) were unfamiliar with ‘living will’ and 46% were unfamiliar with ‘power of attorney’.

Moreover 22% said they would not, or did not intend, to speak to a doctor or nurse about their end of life wishes.

Most concerning of all are the low levels of familiarity with terms related to resuscitation. More than one in four people were unfamiliar with the term ‘Do Not Resuscitate Order’ (DNRO), nearly 40% were unfamiliar with ‘Do Not Attempt Resuscitation’ (DNAR), and less than a third were familiar with ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR).

Decisions about resuscitation may be among the most important any of us can make about the way we would like to die. They can prevent inappropriate interventions at the end of life – ensuring the person’s last hours or days are spent as peacefully as possible and avoiding added distress to families and loved ones. Therefore not knowing the terminology and its implications is potentially catastrophic.

This is compounded by a general reluctance to open up. In Northern Ireland, nearly one in four people (23%) said they were uncomfortable/very uncomfortable talking about death and dying in general with their friends and family – 5% higher than the UK average and between 5-7% higher than each individual jurisdiction. And of all the jurisdictions in the UK, we have the biggest problem with talking about death and dying.

Meanwhile the need for palliative care is growing. During the period 2010/11-2020/21, the number of people on Northern Ireland’s Palliative Care Register doubled, while deaths from cancer, chronic lower respiratory diseases and dementia alone increased by 10%, 17% and a staggering 65% respectively. Between now and 2040 the number of people dying every year will increase by one fifth.

To deal with this we need an action plan to promote death literacy , working with employers, community groups religious organisations and schools.

Education programmes need to be part of the school curriculum helping the young learn about death, dying and bereavement.

And courses promoting death literacy among patients and their loved ones should be part of training and Continuing Professional Development for  health and social care workers.

There is no excuse for this dangerous ignorance.