Why we should take on the final taboo

Death comes to all. Over the course of human history the dead outnumber the living by around 15 to one. Yet we seldom, if ever, talk about our inevitable demise. Last month the Co-operative Society’s Funeral Service published the largest survey ever into the UK’s attitudes to death and bereavement.

It found that 91% of us have considered our own mortality – 35% do so at least every week – yet only 7% feel comfortable talking about it.

The problem is worsening. Whilst a quarter of UK adults first experienced death when they were 10 or younger only 16% had attended a funeral at this age because their parents were trying to shelter them from the reality of death. This might explain why the survey also found that the younger generation (16-29) are the least able to express emotion and most likely to bottle up grief.

The Co-op is in the funerals business and was doubtless alarmed  to discover that only 5% of people have a funeral plan.

Death is a lot more than a physical event. It is an emotional, psychological and spiritual experience that everyone goes through and how it is experienced matters a lot – to the dying and to those they leave behind. It has become a taboo subject. This has not always been the case and it is time that we liberated ourselves from the strange cult of denial that has entrapped so many of us.

The failure to have this conversation is not just psychologically damaging it also leads to unnecessary pain and trauma at the end of life – a terrifying time for sure, but one which could be managed so much better.

We all want to live well. It is just as important to die well too.

Consider the facts. In 2016 the latest year for which full figures are available there were 15,439 deaths in Northern Ireland. Almost half – 7,362 took place in hospital.

The vast majority of these patients will have arrived via the Emergency Department. Whilst this might be absolutely appropriate for some of them (those who have been involved in road traffic accidents, for example) it is not necessarily the best setting for those succumbing to the final stages of chronic conditions.

Yet when you examine the statistics you find that the two largest age categories for deaths, are the two oldest ones: those aged between 85-90 accounted for 2,682 deaths in 2016 and 2,841 were more than 90 years of age.

Hospitals are, of necessity, noisy, very brightly lit clinical institutions whose primary business is treatment of acute illness and dealing with traumatic injuries. There is very little privacy. This does not make them the best place to die. And there are far too many older people who are taken to hospital, essentially for that purpose.

Some deaths will inevitably occur in hospitals, but there should be less of them, and that will only happen when people take control over their own fate.

In the distant past it was priests who were the experts and arbitrators of death. Over the past 100 years or so this power has passed to doctors. Yet death, which is a natural event does not have to take place in a clinical setting.

This is why choices about death: where it takes place, who else should  be present, what pain relief is appropriate, when treatment should stop, should primarily pass to those undertaking that most difficult and intimate of passages, with the help of their families and loved ones.

There is increasing awareness of this. A few years ago Macmillan and the Public Health Agency collaborated on a guide to planning for the end of life. It is a compassionate and moving document which should be widely read. It is important to think about these matters when you are well, and not wait until a time of crisis, or leave decisions you should take for yourself in the hands of medics who do not know you.

It covers some of the logistics: planning a funeral, making a will and how to grant lasting power of attorney to cover off the eventuality of you not being able to make decisions for yourself. It also guides you through the process of advance care planning, so you can think through where and how you would like to be treated and advance refusal of treatment, where you have the legal right to refuse further treatment if you believe that not to be in your best interests.

This debate has gained further traction right across the world in the past few years, and quite rightly so.

And more recently the Helix Centre in London has developed an app called Amber Care which allows people to specify the kind of care they want at the end of their life and to deposit it with their GP.

It is quick and easy to fill in. Many, as I did, will find it cathartic.

It asks you to specify what the treatment options are at the end of life and asks you to prioritise them. 

By way of example mine were:

1. Maintaining comfort and being pain free

2. Being in my preferred place of care

3. Maintaining self awareness

4. Being able to communicate with my family

5. Sustaining my life even at the expense of comfort

You can then specify where you would like to be cared for: at home, in a hospice, in hospital or in a nursing home and where you would like to die.

This does not guarantee that you will get your preferred outcome, but it will help to ensure your choices are factored in. You can also specify what food you like (toast with marmite for breakfast in my case), whether you would like to listen to the radio, and, if so,  what station, watch TV or be in company. There is also a section on the circumstances where you would refuse treatment – if in a persistent vegetative state for more than four weeks, for example.

Filling this in is not a depressing experience it is empowering. It is much less stressful than planning a christening or a wedding. 

For some death is not the end, but it does come to all. We need to accept this, talk about it and plan for it.