How to die well

Death is an intense emotional, psychological and spiritual journey that awaits us all, and how we manage the experience matters a lot, not just to the dying, but also to those they leave behind.

An important new report from end of life charity Marie Curie estimates how many of us in Northern Ireland will pass away between now and 2040 and, crucially, where we are likely to be when we die.

It should be essential reading for anyone concerned with this hugely important and often neglected policy area. And it lays out the scale of the challenge we face in aiming to ensure that we have the chance to experience a good death.

Delivering the best end of life experience for all is an important first for Northern Ireland in that it projects where people will die. Currently these trends are predicted by looking at the patterns of the past.

This is especially important because we are seeing a significant rise in the number of people who are dying in their own homes or care homes as opposed to hospitals.

This is a good thing. Polls consistently show that most people prefer to pass away in their own homes, with family, familiar things and treasured memories.

But it is also something we need to prepare for because it has significant implications for the resources that are required to ensure that the right services are in place to support people through their final moments.

The research examined three potential scenarios around place of death. The most germane is what will happen by 2040 if current trends continue.

This scenario projects a 74% increase in the number of deaths in private homes and care homes over 2018 (from 7,309 to 12,823). This would mean 55% of people would die in community settings (a 9% increase.)

Marie Curie argues that this is a good thing: “ We should strive to achieve this type of death whenever possible. But lack of capacity and barriers to accessing community services have the potential to drive more and more dying patients into hospital when they may not need to be there.”

“This data poses serious questions about whether the workforce, capacity and resourcing currently exists in community settings to provide the best end of life experience possible for all these extra patients.”

Craig Harrison, Policy and Public Affairs Manager at Marie Curie said: “We need to do everything we can to ensure that people get the best end of life experience possible when dying at home. Sadly, some people today are already missing out on services, so we need to plan now.”

Dying well is about more than having the right support from professionals, there are other factors too.

Craig explained: “Someone can have the best team of doctors and nurses but if their home is not adapted to their needs or if they can’t afford to heat it they are not going to have a good end of life experience. There’s also the issue of people dying alone – a situation we want to avoid whenever possible.”

 So there are social and financial issues that need to be considered as well.”

For example, Craig would like to see a volunteering scheme introduced so that people can provide companionship to those nearing the end of life.

The report goes on to recommend a whole series of other measures that should be introduced.

Access to high quality palliative care is vital so that any pain or distressing symptoms can be eased.

That’s why the report stresses the importance of all social care staff receiving regular palliative care training to include recognizing when someone is dying. Many organisations already have good training programmes in place – the challenge is to make it universal, plugging any gaps.

Craig is also concerned that out of hours support systems are sufficiently resourced, so that people can get help and advice if the condition of their loved ones deteriorate.

During the pandemic the service in Belfast has been suspended for periods.

Craig said: “If it’s not available people will tend to panic and phone 999 or go to A&E, when often the needs of those affected would be better met at home. So we can end up taking people to hospital, when that’s not what they want, putting additional pressure on services.”

Another critical issue is to boost the number of care home places – currently they are projected to fall short of expected demand. Unless something is done about this more people will end up ending their lives in hospital. In addition, without care packages available people who could be released back to the community will remain in hospital, blocking beds required for others.

The report provides yet more evidence of the urgency both of social care reform and the need to ensure that jobs are paid at a level that reflects their importance.

And rural areas will be vulnerable unless we can ensure that there are sufficient GPs to meet demand.

The report sets out the challenge very clearly – over the next few months and years we will see whether the authorities recognise end of life care as a priority, and plan for future demand appropriately.

Planning is also important at a personal as well as societal level. People don’t like to think about their own death. That’s a pity because the best time to prepare for it is not when close to it, but when you are well. It is not frightening to think through and write down whether you want the experience to be free of pain, in hospital or at home, whether you would want to be resuscitated, who you would like to be there and even what you might like to eat or what music you might want to listen to, so that clinicians and relatives are left guessing. It is your death after all.